January 8, 2011
December 21, 2010
So where do I begin??? A year has gone by since I last updated. After a year of paperwork and fighting for what Jojo needed I got her seen in Canada for her bone issues. Thank god she does not have O.I. She just has ostepenia pretty bad caused by the lack of muscle tone and lack of good physical activity. She is currently receiving infusions to help harden her bones......also know as "liquid concrete". She goes to Shriner's Hospital In Montreal, Quebec every six months to get these. Hope soon it will help her alot!
Jojo is in the 2nd grade doing amazing in class. Her sister Brittany is in the 7th grade and her other sister Faith is in the 3rd grade. They are all growing like weeds. We have starting going to church and I have meet another awesome group of people. Thanks FLC! I want to get back into updating this site and spreading the word on Spina Bifida Awareness! I continue to cath Jojo every 4 hours thru her vesticostomy, her shunt is still holding its own so we go yearly for that. Hopefully soon she will beable to start physical therapy again. I wanna wish each and everyone of you a very Merry Christmas & a Happy New Year! Thanks for everyone's support & for checking on Joanna. More to come soon, adding pictures daily also. Keep checking back & dont forget to sign her guestbook.
With Love, Lorie
Jojo's fundraiser Link: http://bit.ly/exOgM3
December 9, 2009
Well lets start by saying Im sorry its been forever since I updated! Over the past year she has broke 3 major bones from simple accidents. Collar bone from falling out a short chair, femur which is the biggest bone in the body by who knows. She walked around with it broke for 2 weeks b4 they figured out what was wrong. A grown man would have been laid out on the floor in pain. In Oct she broke completely thru her tib & fib bones in her leg from simply walking, tripping and fell.....So after testing thru Endo they discovered Joanna not only has a growth hormone defecency, she produces NO growth hormones. Which explains her being the size of a 3 year old. She has been taking shots for that for several months......after more testing they are thinking she has some kinda RARE bone disease, they believe is genetic....they wont tell us what yet...her bone scan came back real bad...she is gonna have to go to CHKD every 2 months and get infusions of this medicine....she will stay 3 days at a time....until she is seen by genetics we dont know what exactly is wrong. He said they are looking at to things but cant discuss them right now. Sooooo my concern is he has only treated 3 kids with this.....his partner only 12 in his career....I called MCV hoping to find a more experienced Dr and in the past 5 years they have only treated 2. The medication is called Pamidronate. When I researched it I didnt like what I read....It is used for cancer patients with Bone Marrow Cancer and other cancers. Also used to treat patients with Pagets disease. Only 1% of adults get that. It causes enlarging of the bones which Jojo def doesnt have. I am not saying my daughter has cancer by no means. I am saying we are clueless at this point. He first admission for infusion will be the last week of December we hope. At that time Genetics will see her in house. Outside of that I cant get in until March 16th. Sorry but I am Jojo's only advocate and I will not wait 2 months to get this ball rolling. Until things are on the way for the better she is on strick physical limatations. WALKING and thats it....Please prayer for my lil girl. It can truely move mountains.....xoxo
March 16, 2009
Wow! Yea its been way to long since I have updated. Life has been a roller coaster to say the least. We have not forgot anyone that has EVER been apart of Joanna's journey through life with Spina Bifida. I am back now and hope to get on top of things again. Recently losing My Dad very unexpectly Sept 1, 2008 has opened my eyes big time. Jojo has had a hard time losing her Papa and the other girls to. Children suffer more than you think. Jojo is growing like a weed. Very successful in school and therapy! She still takes Ot, Pt and loves them both. Above is a scroll of new pictures of her. I am changing the site little by little. Keep checking back. And dont forget to sign her guestbook. Miss you all!! xoxo,
Lorie
APRIL 3, 2008
WOW!! I cant believe this day is here. My baby girl is turing 5! I feel so blessed & thankful to have this day with her. It has been a very hard 5 years traveled but she has accomplished more than we could have ever imagined. I only hope and look forward to watching her excel for years to come.
She has been doing really good. Loving preschool and playing with all the other children! She continues PT & OT and is exceling very well. She just got her 5th pair of AFO'S and this time she picked hot pink. Imagine that..haha. If it's pink then Joanna is good to go! I would like to apologize for not having her address up for cards and things sooner. Finally it is posted below! Please sign her guestbook! I will update soon!
December 23, 2007
Hello Everyone! First I would like to start off by saying I have missed each and everyone of you over the past few weeks. Unfortunately due to some financial issues Im going through right now. Joanna's site along with her mailbox got closed. The site is now back up and running thank goodness and a new mailbox will be started at the first of the year! It was so odd this year because normaly Joanna and her sisters are overflowed with gifts from people around the world, but this year things came up and the box was closed. I appreciate everyone's emails concerning what was going on.
Joanna is doing remarkable right now. Other than struggling with some new or should I say increased leg weakness she is doing well! We continue her therapy every week for pt and ot. She was casted for new braces the middle of this past week and she is so excited abotu getting new pink ones! She has enjoyed preschool this year. Excelling in everything. Even showing interest in P.E. At first the thought of P.E. had her in tears.....She is learning that she can atleast try things before she gives up!
I hope everyone has a wonderful MERRY CHRISTMAS and A Happy New Year! I will post again soon after the holidays!!! Love You All!
November 7, 2007
Wow you guys it's been awhile. I havent forgot about anyone. Just alot going on right now in my life. Joanna is doing soooo good. She started pre-school this year and loves it.
She is excelling right along with all the other little boys and girls. Joanna's health is good also. I am so thankful for that! Nero surgeon still wants to hold off on surgery and wait things out. She continues with physical and occupational therapy. Doing very well in both. She goes this week to be casted for new braces and shoes. She is so excited about that! Her sisters Brittany and Faith are doing great! Enjoying school and their friends right now. I will post again real soon! I miss talking to each and everyone of you!!!!!!!!
With Love Joanna's Mommy & Biggest Fan,
Lorie
July 17, 2007
Ok everyone sorry it took me so long to get back to you guys! Joanna's surgery went well. They did a cystoscopy and excision of polyp in appendicovesicostomy tract. NO HERNIA AND NO STONES. The doctor said we have taken care of things very well.
Joanna and her sisters continue to enjoy the summer at the beach and pool. Hope everyone is doing the same!! Ill update soon! Thanks for all the wishes!
July 9, 2007
HEY YOU GUYS! JUST WANTED TO LET YOU KNOW THAT JOANNA IS HAVING OUT PATIENT SURGERY ON THURSDAY. WE HAVE TO BE IN RICHMOND AT 6:30 am. SHE HAS BEEN HAVING SOME TROUBLE WITH HER VESTICOSTOMY! (Doctors removed her appendix, colon and part of her stomach July 2005 to make a tunnel from her bladder to her belly button where we catherized her) The wanted to check her for scar tissue, hernia in the site and kidney stones. They also think it could be pilups. If so they will remove them then. If it is a hernia I am not sure at this time what they will do. I would imagine that would have to be fixed at a later date! Anyways just wish her luck for the best outcome. The smaller problem is easier to fix!
June 13, 2007
My goodness its been forever since I let a journal entry. Shame on me and My busy busy life. I swear it seems like yesterday it was Joanna's birthday! Anyhow things are going good. Joanna is growing like a weed. Her social anxiety seems to be improving everyday. That in itself is a very big step. She is getting to know people alot for easier and enjoying the outside alot more. She has been spending most her time outside on the playground. Imagine that. LOL........Joanna continues her phyical and ot therapy every week. Making great strides to improve her skills. She is registered for pre-school starting in Sept. She is so excited about that!!! Brittany just passed the 3rd grade. She is growing up to fast for me. Ms. Grown Pants. She is into her friends and music. Faith just pasted kindergarden and boy is she a mess. She is a pistol to say the least. She loves getting into anything her sisters are.
Anyhow I just wanted to write and give an update. I will make sure I dont keep such a distance between my hournal entires. Everyone have a good day and talk real soon!
With Love,
Lorie
APRIL 3, 2007
TODAY IS MY LITTLE ONES 4th BIRTHDAY. HAPPY BIRTHDAY PEANUT!! TODAY IS A WONDERFUL DAY FOR ME. I HAVE LOOKED AT HER THIS AM IN ABOUT TEARS. THOSE ARE HAPPY TEARS!!!! I CANT BELIEVE SHE IS 4 YEARS OLD. I AM THE LUCKIEST MOMMA ALIVE. SHE HAS BEEN THROUGH SO MUCH IN HER LITTLE 4 YEARS. MORE THAN MOST WILL EVER GO THROUGH IN THEIR ENTIRE LIVES. I THANK GOD FOR TODAY!! I PRAY THAT JOJO WILL CONTINUE TO STRIVE IN HER JOURNEY THROUGH LIFE WITH SPINA BIFIDA! SHE IS ONE STRONG LITTLE GIRL. FROM DAY ONE SHE HAS ALWAYS KEPT HER HEAD UP HIGH. I CHERISH TODAY, TOMORROW AND ALWAYS!TODAY IS ANOTHER DAY WHEN I REALIZE THE MOST IMPORTANT THINGS IN LIFE. LIKE THE QUOTE SAYS "LIFE IS NOT MEASURED BY THE NUMBER OF BREATHS WE TAKE, BUT THE NUMBER OF MOMENTS THAT TAKE OR BREATH AWAY!! IF YOU GET A MINUTE OUT OF TODAY PLEASE SIGN HER GUESTBOOK.
March 28, 2007
Hello Everyone! Man these last two days have been beautiful. Joanna has enjoyed playing outside like crazy. The home page photo was taken the other day. She loves spring time. Playing in that sand box is her #1 priority! Thanks Dave ;-)....The photo above was taken at the Make A Wish Annual Golf tournament. He is the president and Ceo of chartway bank & We promise foundation. They work together to raise money for children! This picture is being used on the Coin Drop containers at the banks. Anyhow I thought it was neat!
Joanna has been doing good the last few weeks. Still struggling to go to physical therapy but once she gets there she does excellent. We live day by day with her social anxiety! The girls will be on spring break this coming week. Joanna is going to enjoy spending time with her sisters. And Im sure it will be spent right in the back yard on that wonderful playground. Thanks to Make A Wish. Hope everyone has a great week...Joanna's Birthday is Tuesday the 3rd. If You Get A Minute Drop Her A Note!
March 5, 2007
Hello Everyone! How is things going?? We are doing pretty good. I swear if the flu doesnt's stop traveling around my house I am going to go nuts. Faith was out of school Thursday and Friday and now Brittany is out today. I sure hope Joanna doesn't get it.She has enough problems already. Joanna had her antibiotic allergy testing done on Monday and we got some good results. It seems to be ok to start introducing her body back to the pencillin's but under good watch! Poor baby hated having that done and I hated having to hold her down for them to do it. 12 prikes on her back and 4 on each arm. She was ready to go postal on those nurses. Anyways she is still continuing with therapy. We breifly hard her speak tested again and it seems that she may have a developmental delay. Which at this point until she turns 4 they are not going to worry about it. The things she is doing are normal for kids under the age of 4. So we shall see....Joanna has been struggling terrible with her sensory and anxiety issues. Poor little has gotten to where she doesn't want to leave the house. Noise, sight and anything strange seems to make her extremely uncomfortable. Infact it is affecting her everyday activites. The OT gave me some got things to try at home. Once we weed some of this out we are going to see the doctor about discussing medication for treatment. I have always been a firm believer of not giving kids so young medication for things like this, but she is suffering in more ways than one way. She is so afraid of everything. Its so unfair that she have to live every second in fear of the unknown. We want the best for her. We want her to beable to enjoy everything all other kids do. Please wish us well as we try some brushing therapy & pressure massaging. The therapist recomends doing this 30 minutes prior to leaving the house or going into a situation that we think may make her uncomfortable. Thanks again for everyone's thought and guestbook entries. I will post again soon. I know it hasn't been as often but I am trying hard to stay on top of things! Take Care ((hugs))
Feb 6, 2006
Hello Guys! Ok Ok I know it's been a whole month since I have been on here to update. Things are going rather well. A couple weeks ago Joanna had a kidney check up and everything looked great! To be honest I have been sick off and on since before christmas. Finally got some results yesterday. I have asthma. A couple of my others breathing test results were abnormal to. They want to check me for hypothyroid & anemia. So we shall see. Anyhoo the girls are enjoying school and Joanna is finally enjoying therapy. Joe is working as usual. But I am so glad he loves his job.
Well I will go for now, but I hope everyone is enjoying this cold weather. I personal LOVE it. Take care until next time!
January 1, 2007
Just wanted to check in and wish everyone a Happy New Year. Joanna has been doing pretty good. All 3 girls have been battling ear infections for the past month. Joanna was rather sick on christmas morning. She didnt even want to open her presents. After some tylenol she started to perk up.....I would like to take a minute to thank each and everyone of you that sent Joanna and her sisters xmas cards and gifts. You guys gave them your own little xmas and it was so amazing. They were so excited. I thank all of you for your continued support for Joanna & Our Family. It really means alot to us. I wish you all a wonderful New Year! I will post again very soon!
Take Care,
Lorie
December 4, 2006
Hello All! I know its been a while since my last update. Nothing has changed much and I guess that would be a good thing. Joanna continues therapy twice a week and is starting to get back in the swing of things with physical therapy. She had hit a rut recently and thank goodness is pulling through that. She continues to make strides in OT and Mrs. Dana is very proud of her for that. For those of you that are from around here Joanna is going to be featured in two magazines for Make A Wish; Inside Business and also Portfolio. We are excited about that. She thinks she is alittle star. They have truely made her feel like one. I couldnt thank them enough....We have been getting ready for the holidays lately. Got the xmas tree all up and Joe is putting out the outside lights as we speak. I cant wait this xmas. My favorite holiday. I tell you what the weather today make it feel like more the season. 28 degrees tonight!....Please continue to pray for Joanna. Your thoughts are so appreciated. We thank each and everyone of you that take the time out to do that and also all the folks that continue to send her fan mail. She really enjoys it all! God Bless and I will be back sooner next time to post!
November 7, 2006
Hello Guys I know it's been a bit but things have been crazy crazy around here. Joanna is doing a little better as far as the sensory stuff is concerned. Friday we tried PT at a different location other than the office and she handled it rather well. The therapist is going to see her a few more times outside of the office and then we are going to have to try and get here back there. Wish us lots of luck.
We saw the orthopedic surgeon today concerning her gait. And the doctor said he doesnt even want to xray them. Children with spina bifida are know for hips problems including popping them out of joint. He said no matter how many sugeries he would do they will still go back to the same place they are now due to all the weak muscle tone and tendens. Joanna also had a knot on the side of her foot that she had xrayed and it turns out just to be inflamation from direct trauma all the time. She rolls it out really bad, so without braces she walks on her ankle basically! Anyhow he said it was just like a calus and for us to keep an eye on that. Later on if it becomes bothersome he can sometimes do surgery to move tendons, but honestly there is no need since she has no feeling there. We just dont want the skin to break down.
Faith has been very sick with her ashtma. We have been in the Er for the past two nights. Poor baby also has double ear infections. Pray that she will fell better soon.
Brittany is doing good. Miss Thang! LOL She started swim lessons and is loving that! Faith did to but wasnt able to go tonight! Hope all is well. I will post again soon!
October 24, 2006
Hello Everyone!! Hope your week is off to a good start! Joanna is doing ok. Her sensory issues have gotten maybe a tiny bit better. She saw Dr. Winslow the Urologist last week and everything looked good. He is alittle concerned about Joanna's gait when she walks. She walks very wide in the hips which is natural for kids with low trunk strenght but he wants her to be evaluated by an othropedic surgeon. That appointment is scheduled for November 7, 2006. We will go from there.
Joe has been working hard at the fire house and the girls have been very busy with school. Faith is finally starting to show great improvement with her writing. I am proud of them for doing so well so far this year. Brittany got all A's and i B on her progress report. Anyhow I am still here and you guys that follow our journey are not forgotten. Sometimes it takes me a few days to get something posted on here. Between normal life, PTA Secretary and A Girl Scout leader this mom of 3 stays very busy! Just remember..........
October 8, 2006
Hello Everyone! I know it's been a bit since the last update and I appoligize. Joanna has had a crappy to weeks off and on with her sensory isssues. You all know she has Sensory Integration Dysfunction. These past two weeks have been Joanna's worst experience since she was born with this. Everything is bothering her. She even is scared to death to go to physical therapy, which is a hard thing for both me and the therapist to deal with. Joanna is in constant iritation with everything lately. For those of you who are not familiar with sensory integration dysfunction let me explain:
Our mind and body are superbly interwoven to meet the demands of today's world. The feelings, thoughts and actions we experience occur through the complex actions of our brain. How we process environmental and internal information has a major impact on our feelings, thoughts and actions. The slightest change in our brain processes can influence how we manage daily living skills, academic progress and social interaction. Sensory integration dysfunction is one example of what can go wrong in the processes of the brain.
Interoceptive: "Sensory system of the internal organs (e.g., heart rate, hunger, digestion, state of arousal, mood, etc.),
Tactile Sense: Processing information about touch received primarily through the skin,
Vestibular Sense: Processing information about movement, gravity and balance, primarily received through the inner ear, and
Proprioceptive: Processing information about body position received through the muscles, ligaments and joints
The brain locates, sorts and orders sensations--somewhat like a traffic policeman directs moving cars!
Sensory integration dysfunction is the inability to process certain information received through the senses. When an individual has sensory integration dysfunction, he or she may be unable to respond to certain sensory information to plan and organize what he or she needs to do in an appropriate and automatic manner. This may cause the individual to resort to the primitive survival techniques of fright, flight and fight located in the "primitive" brain. This fright, flight and fight response can appear extreme and inappropriate for a particular situation.
Sensory integration dysfunction is a disruption in the process of intake, organization and output of sensory information. Inefficient sensory intake is taking in too much or too little information. With too much information, the brain is on overload and causes an individual to avoid sensory stimuli. With too little information, the brain seeks more sensory stimuli. Neurological disorganization can occur in three different manners. One way is when the brain does not receive messages because of a disconnection in the neuron cells. A second manner is sensory messages are received inconsistently. The third way is sensory messages are received consistently but not connect properly with other sensory messages. Inefficient motor, language or emotional output occurs when the brain poorly processes sensory messages, which deprives us of a motor response in order to behave in a purposeful way.
Hope that explained some of what Joanna is experencing right now! Other than this issue all is well. She has missed the girls since they have started school, but we seem to stay busy anyhow! I try to get her up and going. She is not thrilled about going anywhere outside the home unless it is to go to the school to pick up the girls! Have a great day and I will update again soon!
September 20, 2006
Hello guys! Sorry it's been a bit since I updates. Joanna was sick all last week complaining of headache and abdominal pain. After a week of that I had her seen by the neurosurgeon to check her
shunt. Read Below To Understand This:
The brain floats in a protective cushion of cerebrospinal fluid (CSF). It also surrounds the spinal cord and fills open spaces (ventricles) inside the brain. The amount of CSF that circulates around the brain normally stays the same, replenished by the body, and helps to maintain a constant pressure inside the skull, known as intracranial pressure (ICP).
Hydrocephalus, which means "water brain" occurs when too much CSF accumulates within the ventricles of the brain and increases intracranial pressure. Unfortunately, increased pressure within the colosed, rigid box of the skull cannot be released on its own by the body. Sometimes a shunt is necessary to relieve pressure on the brain from the excess fluid. Without treatment the brain will be damaged as pressure inside the skull enlarges the ventricles, causing compression and, ultimately, death of sensitive brain tissues.
Surgery is preformed to treat hydrocephalus directly, by removing the cause of CSF obstruction, or indirectly, by implanting a device that can "shunt" the excess CSF elsewhere in the body where it can be tolerated - most often into the abdomen. Once inserted, the shunt usually remains in place for life and continuously regulates intracranial pressure.
She had a CT scan done on thursday and the upper part of the shunt looked ok. She still of course has slit ventricles which could be causing the headaches. They come and go! When symptons begin to develope it goes from having slit ventricles to slit ventricle syndrome.
What is slit ventricle syndrome?
Slit ventricle syndrome is a constellation of symptoms which, for example, can appear in patients with a functioning shunt and in whom the brain has lost part of its elasticity. The symptoms consist of headaches, vomiting, drowsiness etc. Infuriatingly enough, these symptoms resemble those of shunt malformation.
The appearance of the symptoms is very cyclical, often with the regularity of a clock for example, the patient is well for three weeks, then violently ill and sleepy for 24 hours and then well again. There is more often than not no cause for the symptoms, although a minor viral illness can kick off the symptoms. Often the patient is taken to hospital and imaging is done which shows the ventricles to be small, or even unchanged, compared to previous imaging. Then treatment would go from there.
So anyhow we just wait and see what happens. Everyday we wake up to the unknow of what the day may bring.
I have been sick with my sinuses for the past 4 days. Today is actually the first day that I have felt beter! Thank goodness. I added alot of pictures to the Thanks page from the car wash we had for Joanna in June 2005. Check them out when you get a chance! Thanks again for all the prayers and support!
Sept 11, 2006
Remembering The Victims Of 9-11
When I'm called to duty God
wherever flames may rage
give me strength to save a life
whatever be its age
Help me to embrace a little child
before it is too late
or save an older person from
the horror of that fate
Enable me to be alert
to hear the weakest shout
and quickly and efficiently
to put the fire out
I want to fill my calling and
to give the best in me
to guard my neighbor and
protect his property
And if according to your will
I have to lose my life
bless with your protecting hand
my children and my wife.
This is dedicated to the memory of all fallen firefighter's
who made the ultimate sacrifice.
Sept 8, 2006
Good Morning Everyone! We attended The 8th Annual Charity Golf Classic for Make A Wish. We Had A Blast! Amazing group of people. Including the Volunteers, Make A Wish kids, their families, Chartway, We Promise Foundation...Just everyone was wonderful. Go to the Make A Wish page on here and read all about it!
Sept 4, 2006
Just a quick note before I hit the bed. The girls head to school tomorrow. Brittany in the 3rd grade and my little Faith in K. I cant believe another one leaving me. Wish them luck for the first day. They both seem excited.
Joanna is doing good. She is going to miss them like crazy. Tomorrow she has her long awaited allergy appointment. They are going to do the testing for the antibiotics. Not sure if they will actually test her tomorrow or consult and then set up the testing. I will let you know. And then Thursday we have the Make A Wish golf tournament. We are pretty excited about that! I will post again soon! Take care to you all!
August 24, 2006
JOANNA GOT HER NEW BRACES TODAY! I THINK THEY ARE SO CUTE!!!
SEPT 7TH JOANNA WILL BE ATTENDING THE CHARTWAY GOLF TOURNAMENT! THROUGH THE WE PROMISE FOUNDATION, CHARTWAY CONTINUES TO LEAD THE CHARGE IN FUNDRAISING FOR THE MAKE A WISH FOUNDATION OF EATERN VA. THE MAKE A WISH CHILDREN WILL MEET AT THE OFFICE, BE TAKEN IN A LIMO TO THE GOLF COURSE, THEY ARE GREETED WITH RED CARPET AND CHARTWAY VOLUNTEERS WILL WHISK THEM AWAY IN GOLF AND TAKE THEM ALLOVER THE COURSE TO MEET THE SPONSORS. DINNER IS SERVED AND FESTIVITIES! THE KIDS SHOULD HAVE A BLAST! PICS BELOW! PLEASE ALLOW TIME TO LOAD!!
August 18, 2006
I am so excited! Joanna was featured on the Make a Wish Website! If you go to the *New * Make A Wish Page on here you will see a link!
August 8, 2006
Today has been sooo crazy! Celebrating my 29th birthday has been impossible.Glad we went to dinner last night! Joe got up this am to head to work and his back was killing him! He hurt it at work last wednesday lifting on a patient! He thought it was feeling better. Anyhow I had to take him to the emergency room. Poor thing was in such pain! They gave him some good meds so hopefully he will start feeling better soon. He doesnt go back to work till saturday! After we left the ER we grabbed some Wendy's to take back home. My Mom and Granny were there watching the girls for us! Then 30 minutes after I got hom the computer guy called to come look at the pc.It had to have a new mother board! A new computer. My luck! Anyways then I had to leave an hour later to take Joanna to the doctor to be casted for her new braces.I picked red foam with hibicious flowers on the straps!. I think it will look cute!! He is building the side of the left brace up to try and keep her foot from turning out! Anyways.... It has been a busy day! Just wanted to say hello! CLICK HELLO KITTY TO SEE THE CASTING PICTURES!August 6, 2006
Hello Again! Hope everyone had a great weekend. I had a good one. A group of my girlfriends took me out for my 29th birthday which is actually the 8th! We had such a good time! Joe stayed home with the girls and took them out to dinner! Of course they missed me like crazy! Acted like I had been gone for a year!This week is a busy one! Tuesday we have Joanna's casting appointment for her new braces! That should be exciting. Dont think she is going to like it to much! Wednesday she has a urology appointment in Richmond. Just a checkup. Thursday is therapy in Suffolk and friday is therapy in Newport News! So anyhow wish us luck on these upcoming days and I will defintely let you know how it all goes and add photos from the casting! They are always super cute! Take care! Until next time.....xoxo
July 28, 2006
Hello All! I havent for one minute forgot about updating! Everyday it seems like we have been going to the pool at my good friend's house. Joanna loves it! The girls can't get enough of it either! Joanna saw her kidney doctor last week and she was so impressed at how well she was doing. In January we are scheduled for a kidney ultrasound. Check again to see how her kidney's are doing since the surgery. By the way the 26th was our 1 year anniversary of that! WOW!! I can't beleive it's been a year! I am so blessed at how Joanna is doing. I would like to thank Dr. Winslow again for all he has done for my little girl! The hands of a surgeon like him are heaven sent!
July 14, 2006
Hello All! Well it’s Friday thank goodness! What’s everyone got planned for the weekend?? We are going to do nothing! Yesterday day was all day therapy appointments! We left the house at 12:30 for therapy in Suffolk at 1:30. That went very well. Check out the new pictures on the About Me page! Then we had to go to physical therapy to meet a man that does the ordering for Joanna’s new chair. She had to be fitted and measured! It’s not called a wheel chair, but an adaptive stroller. Its rather nice and is going to be pink. I am so excited. This umbrella stroller is getting on my nerves! Plus this thing will last forever! Anyhow we didnt get home till almost 6 oclock, so today we have done absoultely nothing! Below is a picture of her new stroller, but it will be pink! Take care and have a great weekend! **We just received sad news! One of Joanna's wish grantor's passed away July 6th. (Toby Vaught) We have added a page called Loving Memory of Toby. Please check it out and pray for his family. We are in shock!
July 8, 2006
Hello All! We got back from vacation really late last night! Joanna was defintley on a sensory overload for the trip. The sight of the mountains scared her to death and the water park, well you can imagine how that went. Me and Joe carried her for 5 1/2 hours. Our arms are still sore from carrying her around. Brittany & Faith had a blast. Yesterday we got to spend the day with Joe's Grandma. We only get to see her maybe once a year. So that was nice. She lives about 40 minutes from the resort. That worked out great! Anyhow We have lots of pictures to show you! Please Click on Hello Kitty to see them all.
July 4, 2006
Just wanted to wish everyone a wonderful 4Th! We are leaving in the morning for 4 days on a little vacation. Just to get away from the everyday schedule, appointments & therapy! The two older girls are so excited, Joanna on the other hand has no idea, but I sure hope she enjoys it. We are really concerned that is going to be a complete over load on her sensory sysytem. Wish us lots of luck!! I will post as soon as we get home and I promise to show you guys a load of new pictures. XOXO
JUNE 30, 2006
Hello All! Sorry it has been so long since I have updated. I tell you what since school has been out we have been super super busy! The girls have been wanting to go somewhere or have someone over every single day, what happen to resting as a family. LOL They dont know what rest means. Joanna had another great week at aquatic therapy. I am still just shocked at how well she has done for Dana. I am so proud of her. She goes again tomorrow. We are planning on taking a little vacation the first of July. Just to get away for a few days with the girls. I hope everyone is having a great week and I will post again soon.
June 18, 2006
Hello! To all the Father's Out there I would like to say "Happy Father's Day"!...Joanna is starting to get back to her old self again. Therapy on thursday was alittle hard. She has become rather weak from her 5 day hospital stay. The therapist could'nt beleive how weak she was. She will get stronger as the day past! Brittany & Faith are doing great. Both glad school is out! Joe is working hard on Father's Day. I hate that he had to work but what can you do. Me & the girls are going to make his favorite; chocolate chip cookies and take them to the station! Hope everyone has a great day and I will post again soon!
JOANNA WAS ADMITTED JUNE 9, 2006 for a staph infection!
JUNE 12, 2006
Hello Everyone! We are finally home. Joanna was fever free for 24 hours so they discharged her today about 3p.m. Joanna had a acute staph (staphylococcal) infection in her bladder making her feel very sick. She received the antibiotic Rocephin at the Sentara emergency room Thursday night which caused extreme itching and hives all over. After being admitted to CHKD on friday she was given the antibiotic Cefotaxime which she was also allergic to this one causing the same symptons including what hey call read man syndrome ( Red man syndrome is an infusion-related reaction. It typically consists of pruritus, an erythematous rash that involves the face, neck, and upper torso. Less frequently, hypotension and angioedema can occur. Patients commonly complain of diffuse burning and itching and of generalized discomfort. They can rapidly become dizzy and agitated, and can develop headache, chills, fever, and paresthesia around the mouth.) Joanna ran low blood pressure about the whole time she was there. The 3rd antibiotic they gave her was called Vancomycin. Vancomycin is often used in intensive care units. It is the drug of choice for the treatment of infections due to methicillin-resistant staphylococc. Vancomycin is an alternative drug for serious staphylococcal and streptococcal infections when allergy precludes the use of penicillins and cephalosporins. Anyhow, Joanna is feeling much better and has come home on oral antibiotics and a neosporn wash for her bladder! Soon will be having allergy testing done on her. The kidney doctor recommends this so next time we know exactly what is safe to treat her with and what is not safe! That will be rather interesting to find out! Thanks to everyone who signed Joanna's guestbbok while she was in the hospital. That really means alot to us! Take care and I will post again soon!
June 8, 2006
Well today has been a bad day for little Joanna! Last night was pretty rough. She woke up at 5am burning up, I did get some tylenol in her. Anyhow she really felt terrible today so I called urology this am to let them know what was going on and they said that since she is still running a 102 fever they recommended having her seen to make sure nothing else was going on. The pediatrician didnt have anything available today so I took her into the Hospital ER about 2p.m. They placed her in the critical care unit just because of her history. The doctors decided that 24 hours isnt really long enough to get a urine culture in so they wanted to do some blood work to check her white blood count and bacteria level. Poor baby had a time getting blood drawn! The nurse was so sweet. I requested them take in in her left foot since she has no feeling there. She tried to get some blood but after 3 sticks she gave up. She said even though she didnt feel it she still hated to keep poking on here. She said she could tell that the left foot was defintely her IV foot, all the pin marks are there from previous draws. Anyhow she had someone else come in to try, and that just happen to be a great friend of ours; Josh! He got it in her arm the first try and she didnt even cry. After that was in the doctor went ahead and gave her a dose of rocefin! Its a strong antibiotic. Then once the blood work came back they would go from there. Her WBC was 14,100; which is alittle high. A normal person should be around 10,000, someone with an augmented bladder should run on a normal day about 12,000. So they were elevated but not way to much. One reason was because she started the cipro yesterday and that is pretty strong. Her uranalysis same back with 1+ bacteria which is also alittle high. And her blood work also showed signs of dehyration. So she gave here a round of fluids as well. Another concern I had was that her cycostomy stoma was leaking feces. Which is not normal. That has only happen twice in the past year! I ask the doctor about it tonight and she said I am not sure, you will have to go back to the doctor that did that! Is that the way to answer a question or what??? I swear she didnt even know what a cycostomy was. I truely hate taking her to hospital that arent familiar with Spina Bifida and the things that go along with it. Her nurse had never seen someone cath through the belly button. Anyhow, so before I left there I called the urologist that was on call and explained to him everything that was going on at the hospital. He ask her blood results and I told him! He said that because her culture was negative he was leaning more towards a intestinal virus! He said that all the results did come back as if she had an infection but the counts were what they range for a normal person not someone thats had a augmented bladder. An augmented bladder produces bacteria at the levels stated in her blood work. Maybe not quit that high, but can run that high if they have a virus. So he told me to push the fluids, continue the antibiotic and call tomorrow and see if the culture has grown anything since today! So we left it at that! The ER doctors were doing there job, but were not very knowledgeable about Joanna's situation. So anyhow after a ER visit of 8 hours we are back home giving tylenol and waiting till tomorrow to see what happens! He suggested Joanna return to the ER asap if she started to vomit or have fever chills. Wish us luck and I will post tomorrow!
June 7, 2006
Hi! It is 3:55p.m. here and we are just now getting home from Richmond. What a long day it was. We left the house at 8:30 am. and went to cariologist appointments first. We were so please with the visit. Dr. Moskowitz was certain that what he heard was not any different than a year ago. Which is great news. The valve has not done any changing yet! Still we are left with the same precautions as before. Brittany and Joanna must receive a round of antibotics prior to any bloody procedure. Which is usually dental work. When you have dental work you can get infection rather easy. When infection gets into your blood stream if goes to the weakest part of your body, which in their case is the heart! He doesn't need to see them back for 3 years unless we see anything concerning before that. Puberity is still our biggest concerned right now for both girls. Brittany is 8 and Joanna is just 3 so we have a while on that one. I hope anyways. After leaving MCV we went over to Dr. Winslow's office to have Joanna checked. The fever is still present today which now we know is from a kidney infection. He ran a urine sample and also sent off a culture, which usually takes about 48 hours to come back. This way we know exactly what type of bacteria is growing.Being that we flush Joanna's bladder twice daily with Gent the bacteria is evidently resistent to it. So he put her on a much stronger antibiotic, Cipro. He also did an ultrasound on her kidney's and he was quit please with them. They looked great! A year ago we couldnt of said that. This appointment was rather rewarding to us as parents. Knowing we did the right thing for Joanna going through everything she went through in July. WOW July will be the one year anniversary of such a big step for her and her independence. While we were their we also got to meet one of Dr. Winslow new partners. He is from New Orleans. Very nice man, he is the ONLY doctor in North America that treats patients of which his son has the same disability; Spina Bifida. I do beleive he said his son is in his 20's. Anyhow between Dr. Winslow and his partners and staff they make a wonderful practice that I would recommend to anyone. Take care and I will post as soon as I get that culture back!
June 5, 2006
Hello! Just thought I would give a quick update before I hit the bed. Joanna is on day 3 of a fever so tonight I called urology and spoke with the wonderful Dr. Winslow! I explained to him what was going on. The fever, leaking cycostomy, blood in the urine, backache & stomach pain. He said that a intestinal virus like we get can be very complicated for a little one like Joanna! Because Joanna's big bladder is now made up of her intestines and bowels; when she gets a stomach bug it can cause nasty urine because her bladder is now made up of those same things. Anyhow, her and Brittany have their cariology appointmens in the morning, which I was going to cancel but since Dr. Winslow wants to see her we mines well take her there first! He wants to take a look at her and check her urine and things! So please pray for good luck tomorrow for good echoes and help her to feel better! I will post again tomorrow night!
June 4, 2006
Hello All! Good news and bad! Faith cholesterol came back great! Thank goodness. One less thing I have to worry about! I have not gotten Brittany's back yet! Joanna started wirh a fever yesterday, and then today her cycostomy has been leaking. I have no clue what is going on with that! I called urology and they said her bowels could be backed up or she could have a virus going on... Time is going to tell. When she gets sick my mind starts going 90 miles an hour. You just never know what is going on or what is trying to brew. I worry so much about her. The shunt issue always freaks me out. I guess because we have never experienced a malfuction. I always worry about her vesticostomy and cycostomy going bad. I guess I just worry about everything! Not knowing what to expect has got to be my biggest worry of all! Anyhow please say alittle prayer for her tonight. Hope that she feels better in the morning. You can tell by the picture above she just feels bad. I will post again soon. Aquatic therapy was cancelled for tomorrow. I have also got to call and ok Joanna being in water that has Bromine vs. Chlorine. I know it is better for you rskin but not sure the effects on open wounds. Like her stomas. Anyhow I will post again soon!
P.S. Please take a minute and say alittle prayer for Joanna's Pediatricans Husband. He has taken very ill. Dr. Fuste has had to take a leave of absence from the office for a while. Things are not looking well right now. I beleive that love and pray can move mountains so lets move some for him.
June 1, 2006
Hello All! What a hot day! It has to be 90 degrees here. This morning was very busy! As soon as Joe got home from work we all got ready; dropped Faith off at school and headed to Suffolk for Joanna's first aquatic therapy session. Brittany stayed home from school today after going to the ER last night due to a viral throat infection. The doctor seemed to think it was at the end of it's course. So anyhow she got to go with us! The room the pool is in is beautiful. The artist did an amazing job. I just couldn't beleive the technology a pool could have. Camera to see your body underwater to watch yourself on the screen. The therapist even said for motivation they will put in the chid's favotite movie and when the child starts to walk on the treadmill which is in the pool the movie will start to play and if the child stops there movements the movie will stop! What a great modivator! Joanna went in the room this a.m. with her ears covered, fussing and very hesitant about what was going on today! She took right to Mrs. Dana and only took maybe 10 mintes to get completely in the water! I think this is going to be wonderful for her muscles and excellent for her sensory issues! Anyhow there is new pictures from today on the about me page! It may take a few minutes for the pictures to load.
I hope everyone has a great weekend and enjoys this warm weather! Joanna wants to be in her kiddie pool everyday! She is so funny. Joe also finished her bridge for her playground. She was having a hard time getting over the timber to get into the play area so Daddy decided to build a little bridge. Here's a picture of that! Take care!
May 24, 2006
Hello All! Joanna was in complete shock yesterday! Brittany & Faith had to have their well checks and Joanna was shocked that she didnt have to be checked! Well Faith's cholesterol was out of this world. Her total TC was 222 and her TRg was 358. That is terrible. We are going to take her for bloodwork the beginning of the week and the doctor said if they get another bad result she is going to have to go to a specialist at Children's Hospital! Brittany's Trg were alittle elevated so she is going to have her's rechecked again! Both are going to have a recheck after they are fasting! Brittany's checkup over all went pretty good. Doctor was able to hear alittle more thickening in the aoric vavle this time. Both Brittany & Faith will have another ecocardiogram done the first week in June! Hopefully thing will not look much different! Below is some information about Brittany & Joanna's defects:
The normal aortic valve, as shown in the drawing, has three leaflets (flaps, cusps) that move flexibly, opening and closing to control the flow of blood into the aorta from the left ventricle of the heart as it beats. When the cusps come together as the valve closes, the shape is that of a trisected circle.
In contrast, a BAV has only two leaflets, also shown in the diagram on the left. It is sometimes described as resembling the mouth of a fish as it opens and closes. Depending on the degree of malformation and associated malfunction, blood flowing through the valve may make an abnormal sound, called a murmur. While some bicuspid aortic valves are silent, the detection of a murmur may be the first indication of abnormality of the aortic valve.
Over time a bicuspid valve may lose its ability to open widely, close properly or both. As previously described, a murmur may develop. Regardless of how the valve is failing, it should be monitored and a surgical solution planned appropriately before any lasting damage is done to the heart.
Bicuspid Aortic Valve Insufficiency (Regurgitation)
If the cusps (leaflets) of the valve fail to come together tightly when closing, blood leaks back into the heart. Either of two terms may be used to describe this leakage: insufficiency or regurgitation. Depending on its severity, this condition may place a strain on the heart, which is forced to re-pump the additional backflow of blood (overloaded left ventricle). In time an overloaded ventricle may have permanent stretching of the muscle fibers, and even if corrective surgery is done may not fully regain its pumping efficiency.
Bicuspid Aortic Valve Stenosis
Some bicuspid aortic valves lose the ability to open widely and often have calcium deposits on the cusps. This condition is called stenosis. As the valve opening becomes narrower, the heart must work harder to force blood through the small opening. This stresses the heart, and with time the wall of the left ventricle may thicken (over pressurized heart). As a result the heart is unable to relax during diastole, and the heart muscle becomes very stiff and inefficient (diastolic dysfunction).
May 19, 2006
Hello! How is everyone doing?? We are good. I finally got a call from the aquatic therapy and Joanna has her OT evaluation this thursday. So after that I would imagine services will start soon. I am so excited about that. I think once we get her in the water and over that fear she will really enjoy it.
I took a big step this week and registered Joanna for pre-school. I sure hope I made the right decision. It will only be Tues & Thurs from 9a.m- noon! She will start in Septemeber like the regular schhol. I am just so nervous. They also do gymnastics on thrudays and the therapist said that part is out for Joanna. To many risks for her. Anyhow I always said I would wait till she turned 4 but everyone seems to think she needs the social skills and would love it! We will see.
May 14, 2006
The beauty of a woman
Is not in the clothes she wears,
The figure that she carries,
Or the way she combs her hair.
The beauty of a woman
must be seen from in her eyes,
Because that is the doorway to her heart,
the place where love resides.
The beauty of a woman
is not in a facial mole,
But true beauty in a woman
Is reflected in her soul.
It is the caring that she lovingly gives,
The passion that she shows,
And the beauty of a woman
With passing years-only grows!
You don't stop laughing because you grow old;
you grow old because you stop laughing
Happy Mothers Day!
Love,
Lorie S.
May 12, 2006
Hey! Therapy went great again today! Joanna has done so good on her squats!!! Great Job JoJo! Hope everyone has a great mothers day! My gift was family pictures. Visit the My Family Page and check them out! Have a great weekend!
HAPPY MOTHER'S DAY MOM!! I LOVE YOU!
May 8, 2006
Hey! The weekend was extremely busy! Brittany's Birthday is Tomorrow!! HAPPY 8th BIRTHDAY BRITTANY! WOW! ........Aquatic therapy called me friday and Joanna is the 3rd on the waiting list, so she should start within 2 weeks. I am so excited about that! Another neat thing is, she said alot of times they let the siblings get into the pool to help calm the other. I thought that was very neat! I have a feeling Joanna is going to be scared out of her mind. We were so proud of her on saturday. She got up into the standing position without crawling over to something to pull up on. Kathy is going to be so excited about that! We have been telling her over and over again "put your hand on one knee and push yourself up" She finally got it! Bless her heart she went all over the house showing us how she could get up. So Proud Of Herself. I hope her strides continue to be strong. She is working so hard at therapy on fridays! I mean she really gets a workout and loves JUST about every second of it! Have a great week and I will post again soon! Please continue to visit all the sites Joanna has been featured on. The love you have given her can sure be spread to other little ones in need! We thank everyone that has signed her guestbook! Your thoughts and prayers are a blessing!
May 3, 2006
Hello All! Joanna is doing prettty good! Poor thing acts like she is trying to come down with a cold. I hope not! I still havent heard back from aquatic therapy. I am going to give them a call tomorrow and see what is going on! She needs to get back into that OT bad. Her sensory issues need help! Brittany went to the doctor yesterday! She had a sinus infection again, ear infection and wheezing. The doctor put her on an antibiotic for 3 weeks. Goodness! We started some yogurt to help with the upset stomach from all the antibiotics. Faith had a great birthday..........Me and Joanna have been getting up in the mornings and walking. LOL she rides in her stroller. I am trying to loose some wait. That in slim fast, I hope I loose alittle! I will post again soon!
May 1, 2006
HAPPY BIRTHDAY TO FAITH! 5 YEARS OLD TODAY! BOY TIME FLYS!
Joanna is doing good. Still waiting to hear from the aquatic therapy for her appointment. Hopefully that will start soon. I got a jogging stroller yesterday that accomadates Joanna's needs alittle better! Please continue to pray that her health will remain good. I will post again soon! Thanks for everything!
April 20, 2006
Today was beautiful! We took the girls to the Portsmouth Children's Museum and they had a blast! I added some new pictures to Joanna's Misc Pics page! Check them out! I will post again soon!
April 14, 2006
Hello! Joanna's therapy went great again today! I hope everyone has a great weekend! Happy Easter to you and your family! God Bless You All! I will post again soon!
April 12, 2006
Hello! Sorry it's been a bit since I posted. Joanna is doing good! She had a rehab appointment Monday and the doctor is still concerned about her fine motor skills and speech. We have put in a request for occupational therapy, but the waiting list's around here are crazy. Anyhow hopefully aquatic therapy will call this week to get her in to start! They can also treat her for occupational, but I'm not sure how much they can do in the water for that! Anyhow, other than those issues the doctor thinks Joanna is doing very well!.....Me on the other hand feel like crap today. I have had this chest cold for over a week and today my chest is killing me. I just feel like I can't get a good breath in.........Brittany and Faith are doing great. Faith's asthma is starting to act up just a little but not to bad. Brittany got her new school picture in! Sooooo Cute! My big girl! Anyhow I will post again soon!
April 5, 2006
Hello! Today has been a great day! Joanna received her quilt from Love Quilts today. www.lovequilts.com. Check out Misc Pics page to see how beautiful it is.... Joanna had her 3 year old checkup today and everything looks good. She was in the 5th % for her height and 25% for her weight. This is normal for kids with spina bifida. The doctor wants Joanna to start some aquatic therapy. I am going to check into that!
~Lorie~
April 2, 2006
Joanna celebrated her 3rd birthday yesterday, and it turned out wonderful! She has been blessed over the past month being sick free. She continues to struggle with her gross motor skills from being unable to feel her feet & her hip strenght. Weekly therapy still remains. Joanna still struggles with sensory integration dysfunction daily. Her shunt still isn't working properly so we just take that day by day!
She received her wish from The Make A Wish Foundation this past weekend. A super duper playground. Thanks to to all how made that happen.
March 31, 2006
Hello All! Joanna is loving her new playground! We have been outside everyday, even if it was freezing. There are stills some finishing touches that need to be done. Hopefully Joe will get to then this weekend. Joanna will be 3 years old the 3rd, so tomorrow we are having her birthday party! A wonderful celebration. She has brought us 3 years of love and joy!
Joanna is on a poet's website for the month of April. It is www.todays-woman.net. Check it out! Have a great weekend!
~Lorie~
March 24, 2006
We are so excited!!!! Make A Wish Starts first thing in the morning. Rain or Shine!! I sure hope it doesn't rain. We have been waiting for this day, so I hope everything works out well.
Joanna is doing great! Getting so anxious about swinging. She had a breakdown tonight over losing her pacifier. I had to search and search the house until I found it. She just cried and said "I LOST IT, I LOST IT". Poor baby! That is her comfort zone. Anyways.....I will post pics as soon as I can!
~Lorie~
March 23, 2006
Hey Everyone! Bare with me as I am working on this new website! Please feel free to sign Joanna's new guestbook! All past entries were printed for her scrap book! Thanks Again!
March 20, 2006
Hello! Hope everyone had a great weekend! Brittany is doing much better. I sent her back to school today. Joanna is been feeling GREAT! Thank Goodness. I Hope this continue's. Make A Wish and loads of our family and friends will be here bright and early Saturday morning to start construction! I will be posting pictures that night to show you guys. Have a good day, & enjoy the first day of spring! I will post again tomorrow!
~Lorie~
March 17, 2005
Hello Again! How is everyone tonight?? Make A Wish called tonight and the playground has found it's way to Tenn.; so it should arrive in Va soon! We are so excited..... Joe toke Brittany to the emergency room. She has had a sore throat since Monday and tonight her fever spiked so he took her in. I was going to take her but she wanted her Daddy! I thought that was sweet. She has become a bit of a Daddy's girl lately. Anyhow, she has strep throat! Poor baby, she feels like crap! I will keep everyone updated over the weekend! Take Care!
March 17, 2006
Happy St. Patrick's Day!
Hello All! We are doing great! Joanna is all better now!! Therapy today went well; Cathie sent her braces off to be fixed. Adding some support and toe strap for her. Faith saw dermatology yesterday and come to find out she does not have excema. She has Keratosis Pilaris. A skin disease that you are born with. It is inheriated. Click on the word to get more info........ We are counting down the days for Make A Wish to start and Joanna's birthday. I can't beleive she will be 3 years old in a couple weeks! Anyhow hope you all have a great weekend, I will post again this weekend!
March 12, 2006
Hello Again! Just wanted to wish everyone a wonderful, relaxing Sunday! I would also like to Thank Lizabeth Stavenski-Bell for continously signing Joanna's guestbook! Your entries are so sweet! I know when I see your name alittle sunshine is flying our way! Everyones guestbook entires are wonderful. I print each and everyone of them for Joanna's scrapbook!........
Last but not least I would like to Wish Gavin, Joanna's Good Friend A Very Very Happy 3rd Birthday! We Love You & This Scooby's For You!!
March 11, 2006
Hello Everyone! It is absouletly beautiful outside today! Joanna is finally feeling her old self again! Yesterday afternoon she started to perk up alittle and start playing. This morning she is a bright little sunshine. Thank Goodness.....Today we are going to my parents house for my Dad's birthday. He is 59 today. Hope everyone has a great weekend and I will post again soon! Take Care!
HAPPY 59th BIRTHDAY DAD!!! WE LOVE YOU!!!
March 8, 2005
Hello Again! Just wanted to drop a line before I hit the bed. Joanna is running a fever again. I just don't know what is going on. No symptoms yet! Only thing I have noticed over the last couple of days is gaging. Sometimes due to the * Chiari Malformation in the brain can cause gag reflux. I spoke with the doctor tonight and she said that if she still has a fever in the morning than I need to bring her in. Again tomorrow Make A Wish is coming out to start some little things in the back yard. They brought her sand table today and when I took her out there she just cried and cried. Thats just one of those things. Joanna gets very scared and nervous about new things. She went with me to school yesterday to eat lunch with Brittany, well all the little girls in the class were so excited to see her. They started crowding around her and she started to gag. Bless her heart, her senses just don't know how to flush those things out. Anyhow, I will post again tomorrow night. Hopefully we will wake up fever free!
March 7, 2006
Hello! It's 2:30 in the morning, I just got done working on this website. I added pictures of Joanna when she was born in the NICU! What I had to do to get them on here was the hard part. After tonight I need to take a couple days off. LOL... Brittany & Faith are doing great. Brit got a wonderful progress report today. I am so proud of her. This year has been a tough one for her, but she is hangin gin there!Joanna is finally getting back to herself again after that nasty flu. She has been eatting well and starting to play alot more. Thank Goodness! So far everyone else is flu free. We will keep are fingers crossed on that one. This week will be the normal busy one. Make A Wish is coming out Thursday & Friday for some yard preperation for the playground. We are pretty excited about this. Construction is stilled planned for the 25th. I will update again soon.
~Lorie~
March 4, 2006
Hello! Just wanted to drop a quick line! Hope you get a chance to check out the new page I added on here. *New Pics* page. Joe got his new fire gear in yesterday and the girls had to try it out. Just some silly pictures to look at! Anyhow, Joanna is feeling better. She still has the runs unfortunately. It has caused her a terrible diaper rash. I am going to try an oatmel soak tonight to help her with the burning. I am using wet paper towels to clean her off when I change her and diaper cream. It just isn't helping! I started with the throwing up thursday night and running to the bathroom all day yesterday. Today I have just felt yucky in the tummy. Hopefully this will all soon pass.
I got an email from Make A Wish yesterday inviting Joanna to the Arena Racing at the Coliseum to go up in the stands with the car drivers and use their helmets to help raise money for Make A Wish. I was honored by the invite and think it is such a neat thing, but due to Joanna's sensory problems it would be entirely to loud for her to handle. It would be very overwhelming to her. Maybe next time she would be old enough to understand she could wear ear plugs.
Have A Great Saturday Night! I'll Post Again Soon!
~Lorie~
March 2, 2006
Hello Again! Joanna ran a high fever through out last night. I called the doctor and she was seen in the office today at 10a.m. They tested Joanna for the flu. I never even knew they could test for that. The nurse swabbed her nose and then they have to wait about ten minutes for a positive result. Well Joanna's came back positive in about 1 minute! Poor baby. She lost 3/4 pound in one day! The pediatrician put her on Tamiflu. Joanna has already thrown up the first dose. I waited a hour and tried it again and she threw that right up to. So hopefully she will hold it down tonight! She was alittle dehydrated, but not enough yet to give IV fluids. She wants me to try to push the liquids and protein. I will post again tomorrow with an update! Have a great night!
March 1, 2006
Hello! Joanna did pretty good at the dentist, they did not clean her teeth because they didnt want to scare her. Joanna's two front teeth are rotting due to the mass amount of antibiotics. We go back March 16 for him to seal them. Hopefully this will slow down the process. If that doesnt work then he said he will have to do something else!
I got back Joanna's urine culture yesterday and everything looks great! I was sooo glad. Then after she is finally feeling herself again, she woke up this morning at 6a.m. with 102.7 fever and diarrhea. Poor baby! I spoke with the doctor and she seems to think it is just a virus. She said if her temperature goes over 103 then she will need to be seen inb the ER. I hope this soon passes. I will keep you updated! Have a great day!
~Lorie~
February 26, 2006
Hello Everyone! Well the weekend is over, back to the grind tomorrow! Just wanted to fill you in alittle. Joanna had a great therapy session again friday! Therapist is still concerned about her left leg bowing out and her foot turning in. We are hoping she can find a othro that will try to adjust her dafo's instead of having to order a new pair. Braces can be a hard fit, especially when you have such little ankles. We had thought about going with a taller brace but the therapist is concerned that it could cause atrophy. When muscles are inclosed it cause the muscle to become very weak and small due to unworking them! She is also considering a night brace for her left leg to help keep her muscles stretched out behind her knee. They are very tight due to lack of movement. Anyhow we shall she. It will all work it's way out one way or another!
Friday I dropped off another urine culture to recheck since we stopped the antibiotics. They were making her so sick. Hopefully she got enough to knock that staph infection out. To be honest with you, when I cathed her today her urine looked remarkable. The best it's looked in a couple months. Hopefully it will come back ok. Tomorrow I have to take all three girls to the dentist. Routine cleaning for Brittany & Faith. Joanna's first dentist visit. Her front teeth defintely need some attention! They are so worn and deteriated, from all the antibiotic. Now that she has the same heart defect as Brittany they have to take antibiotic one hour before their dental appointment, this prevents infection from going to the blood stream. Anytime you get an infection it goes to the weakest part of your body! Well I will close for now, but I will update again soon.
P.S. Make A Wish Project is suppose to start March 25th. They will be breaking ground on the playground. We are so excited. Joanna is going to love it!
February 17, 2006
Just wanted to drop aline and give a new update! Joanna is still feeling really crappy from the infection. Hopefully she will start to feel better in the next few days! Faith has been struggling with her eczema. I made her a dermatology appointment today! Anyhow have a great weekend and I will post again soon!
Happy Valentines Day
February 14, 2006
Just wanted to say "Hello & Happy Valentine's Day!" Joanna's urine culture came back today and she has a staph infection. (staphylococcus) Joanna's Ped's doctor called the kidney doctor and they just changed her antibiotic to Seproflaxin. She was on Bractrim but the infection is resistant to Gentamicin, Pencillin, Oxicillin and Trimeth something! Anyhow hopefully this will get her feeling all better! She is alittle better just not back to herself yet. Brittany and Faith were so excited about Valentine's Day. Anxious to go to school this morning. I have to tell you kids have a mind of their own. I went yesterday to walmart to buy these little sweet tart candy's to tape to their valentine's cards and Brittany wanted to tape her's all by herself, so I let her while I helped Faith. Meanwhile their Nanny stopped by and I gave her the rest of the candy to put in her candy jar at home. Well this morning when Brittany got up she said "Mom I accidently forgot to put candy on the boys cards", I just laughed...especially when she neatly had all the boys cards in one bag and the girls in another. The bad thing was I had given the remaining candy to Nanny, so poor thing had to take off all the candy on the girls cards. Anyways, I just thought that was awful cute. Have a great week!
February 6, 2006
Today was a busy day! Joanna has been alittle crabby the last few days. We had therapy appt today at 9a.m. I think we may put Joanna back into the taller dafo's (braces) her left foot still turn out terrible and he leg bows a little bit. Therapist thinks she may need a little more support. We are hoping to get by with a short brace on the right foot. We shall see....... Then I had some errands to run. When we came home I cathed her and her urine just didn't look good, so I took the sample to the doctor and sure enough she has a bladder infection. This explains her feeling bad. This is usually what comes out of her feeling bad. Because Joanna's bladder was augmented with part of her bowel it naturally produces mucus, which can lead to bacteria. Anyhow this is one of the things we have to deal with. It is definitely better than losing two kidneys to severe reflux.
February 3, 2006
Hello! Joanna is doing good. These past two weeks she has had some great therapy sessions! She hasn't cried at all. Cathie said today that she has pushed Joanna a little harder over the past couple of weeks and she has done fine with it. She was going at 9am. On Fridays until a few weeks ago. We rescheduled at 11:30am. And Joanna actually did much better at this time. When she goes at 9am. She is the only child there at that time. We think she really likes it better when their are other kids there. I think she likes to watch them. Maybe showoff for them! Anyhow I am so proud of her.
By the way Joanna is February's featured child on the Hugs & Hope web site. We are pretty excited about that to! People are so kind and caring. If I could hug everyone that has put a little sunshine in Joanna's life I would!
January 13, 2006
Joanna saw Urology today for a surgery followup. The doctor was also impressed with the ultrasound results. He said that now we just need to watch for changes in vestocostomy & cycostomy. The procedures she had are NOT maintance free. We need to watch for pain when cathing, which can indicate kidney stones. Kidney stones are common in a augmented bladder. He also told me to restart her vitamins. She needs those to build her strenght. He said that she may just not be use to formed stools. Without the iron its kinda runny. He said to not worry if she gets constipated; just put some mineral oil in her cycostomy. He said its not good to give it by mouth like the old days because it absorbs all the water through the GI trac and not the vitamins. If you give it directly through the cycostomy it bypasses the GI trac so the child stills receives its nutrients. Anyhow we are soooo happy about the good news. It is nice for a change to have something go in Joanna's favor!
January 12, 2006
GREAT NEWS FROM THE DOCTOR TODAY!
We received wonderful news today! Joanna's renal Ultrasound looked great. Her kidney's weren't dilated anymore, no reflux present and great texture. May sound like a simple visit to some, but today was a big day for us as parents. Knowing that putting her through major surgery was definitely worth it. It's hard as a parent to sometimes grasp the decisions we make to give our children the best quality of life. Always in the back of your mind you wonder, "Did I do the right thing?" "What should I have done differently?" As Joanna's mommy I have tried my best to make all the right decision's. So today made me feel like we took a big step in the right direction of making our baby girl better.
January 10, 2006
Hey! Hope everyone had a great New Year! We didn't do to much for new year's eve. Just hung out at the house! The girl's went to their Nanny's house for their own New Year's Eve party. Joanna stayed till about 10p.m. She couldn't make it any later. That's late for her. She has been doing good besides alittle bit of constipation due to her viatimins. She has been anemic since she was born. She has been taking the poly visol drops since she was born, but when she has her surgery we had to stop them for the 2 weeks we were in the hospital and so now she wont dare take them. The liquid drops are pretty nasty. So I bought her some Flinestone vitamins and she refused them also. Finally about 2 weeks ago I got her to eat one and she liked it. Well they made her sooo constipated that when I flushed her cycostomy she would cry of pain. So anyhow she has been off them a week and her bowel flushing is turning back to normal. Thank Goodness. She was starting to hate potty time.
She see's Dr. Restaino thursday for her kidney ultrasound. I am pretty anxious to see what that looks like. Hopefully good! Keep your fingers crossed! I will post thurday night with the ultrasound results. Lorie
December 30, 2005
Hello All! Christmas was great for all of us! What about you? Joanna was so excited.She actually opened all her presents by herself. Her favorite gift was definitely her new Dora dolls. She has fell in love with Dora The Explorer! Dora everything. She recently graduated to a toddler bed, which is Dora with Dora sheets and blankets. By the way she also graduated to a big girl cup. Thank goodness. I was so tired of those dang bottles. The next step will be getting rid of that binky. Good luck on that one. Hopefully it will find itself in the trash can soon.
Anyhow! Joanna has being doing good lately. She hasn't had therapy for the past two weeks due to the holidays. Therapist took a well needed vacation. So next week may be alittle hard on her. Joanna can get out of a routine real quick. You have to stay on top of things so she follows through. Next Friday will probably be a crying session. We shall see.Joanna has a renal ultrasound January 12th to check and see how her kidney's are looking since the surgery. Hopefully that will look a 100% better. I sure hope. The kidney doctor at CHKD will see her following the test!
Take care and have a great weekend!
December 18, 2005
Well it's one week before Christmas! I sure hope my kids start feeling better before Santa. Joanna is still not feeling all that great... weather it's the infection or she is coming down with something. I'll just wait and see. Faith's ashtma is kicking her tail. I have had her on the neb machine with albuterol and pulmicort going on two weeks and she sounds terrible. I am going to run her to port warwick er as soon as my mom gets here to watch Brit & Jojo. Brittany is the only one that feels ok. Just alittle cough!
Merry Christmas To Each And Everyone One Of You! I would like to thank several people for sending Joanna and the girls Christmas presents in the mail. It's amazing how someone you don't even know reaches out to you! The girls were so excited! God Bless You & Your Families!
December 12, 2005
Hello! How are you? I am actually sick with a sore throat, headache, cough and runny nose. LOL What a terrible hospital stay! We just got home today around noon! I am so tired. Joanna has a kidney infection with 103 fever, so she had to be admitted for IV antibiotics. She is feeling so much better. Thank goodness!! She is still alittle pale, but defintely better. She was alittle upset yesterday because she didnt get to go the brunch with Santa. We go every year. Joe stayed with her at the hospital and I drove back home and took the girls. I promised they would get to go. Needless to say I think we are all beat! I will post again soon! Thanks for all the prayers, Lorie
December 10, 2005
Just wanted to drop a line and say that we are on our way to St. Mary's ER in Richmond. Joanna has been on a strong antibiotic since the 4th for a bladder infection, but tonight she started with 201 fever, Urology seems to think the uti has turned into a kidney infection, or something else is going on! They will possible need to treat the infection with iv antibiotics. Please say alittle pray tonight that there is nothing major going on!
With Love, Lorie
December 10, 2005
Hello! Is everyone ready for christmas? I am as ready as I am going to get! Joanna has felt yucky all week due to another bladder infection. We are now on the antibiotic wash for her bladder daily verus the Septra by mouth at bedtime. I guess the septra just isnt strong enough. The antibiotic Gent is usually fairly strong. Today will be day 5 on it and she still isnt having the best urine. I am going to give it till Monday. if it's not better I am going to call the doc....Between Joanna feeling bad and poor Faith's asthma it has been a crazy week. Faith has just been weazing and coughing terrible. She just can't take that cold air. Since her inhaler's weren't doing the trick we started using the steriod & albuterol in the neb machine. It seems to be heping better. Thank goodness Brittany isn't sick. Not yet anyways.
Well I hope you have a great weekend! Santa will be here soon..... We are going to a brunch with Santa Sunday. I am curious how Joanna will due with that! Probably freak out. The whole noise thing surely gets the best of her.Very sensitive.
Last but not least I know alittle girl that needs everyone pray's right now. Only two years old, she is battling for her life. Diagnosed with cancer several months ago. We got bad news the other day that she wasn't doing very well at all. Please take a minute out of you day and say a little pray for Jenna & her family. Pray that God will put her under his wing and make her feel better, give her mommy strenght to make it through another day of watching her little girl suffer. Just give them the strenght to stay strong and help through this difficult time...... Eveyone should stop for a second today and remember Jenna and hug your babies. Life is to short to let the little things go by! When you think you have it bad, just remember Jenna! JENNA STAY STRONG SWEETIE! YOU HAVE ALOT OF PEOPLE THAT ARE PRAYING THAT YOU FEEL BETTER SOON! WE LOVE YA!
I will post again soon!
SATURDAY, NOVEMBER 26, 2005 12:40 PM, CST
TODAY WE GOT A VISIT FROM MAKE A WISH! What a group of truly amazing people. Joanna took to them like she had known them forever. It was definetly hard not to. They were so sweet and caring. She walked them around the house showing them her room, her sisters room and even sat in the floor and played with them. They showered her with gifts, including her own crown and wand!! It was a great pleasure to meet them. Joanna even ended the morning visit with a kiss for Dave. After a great morning of playing and questioning they came to the conclusion that Joanna wishes for a super duper playground . Joanna loves outside the most, and it is very difficult for her to enjoy it at home or at playgrounds due to the safety issues from her disabilities! So now we wait and hear from them again! I sure hope it is accompanied by the group that came out today. I would love to spend the wish day with them! I will post again soon! XOXO Lorie (Joanna's Mommy)
NOVEMBER 21, 2005
I just wanted to write and share some very exciting news for Joanna and our family! What happened yesterday was truly god sent! I received a call sunday afternoon from The Make A Wish Foundation. Yes the real Make A Wish Foundation. I couldn't believe it either. When that wonderful lady on the other end of the line said "Mrs. Sibert, this is Make A Wish Foundation and I just wanted to call you and tell you that your little girl Joanna will be granted a wish from our foundation. Soon you will be hearing from the Make A Wish Team that will come to your home and start her dream project"
Anyhow I just wanted to share my joy with all of you! I called on Tuesday to the foundation out of curiosity. They faxed her doctor paper work that had to verify that Joanna has a life threatening illness. And Sunday I received the call. This goes to show you love can move mountains!
My heart literally felt like it hit the floor. The tears started to roll down my cheeks when I told this lady what this meant to our family. People don't realize that not only was Joanna born with Spina Bifida. Our family was born into Spina Bifda. Such a different lifestyle we have learned to live. But when I look into Joanna's big beautiful blue eyes my heart melts with happiness. She has brought so much joy and love into out hearts. Such a little girl has been through sooo much! Through her struggles with life and all the everyday things we take for granted, it has been hard as parents to watch your child hurt from pain, and cry from fear of the unknown. But there is two other little girls that are babies to and have had a very difficult time dealing with Joanna's struggles. Brittany & Faith. They have stayed so strong for their little sister, when I know deep down their hearts ache from the sadness we have had to go through the past 2 and half years. Not only does Joanna deserved this granted wish, her two sister's will tag team right beside her in the glory. Something to make them all three smile with pure happiness! Because Joanna is to young to realize what exactly a wish is and the meaning behind it, we as parent's have sat down and truly thought about what Joanna would love to have. Yes of course most kids would love to go spend 7 days at Walt Disney World, but for Joanna that would be a week of misery. Due to her sensory issues Walt Disney World would be entirely to much for her to handle. So we have decided to wish for a privacy fence with a super duper playground. Customized for Joanna! We have visited many many parks and playground around here and they just weren't built for kids with disabilities. It is heart breaking when you take them to the playground and she has to set back and watch all the kids run around and have fun. Only thing she can do is the baby swings. The slide steps are to tall, the slides don't have high enough sides etc. The privacy fence will help her with the sensory and sight issues. The old saying is out of sight out of mind. What she cant see around her, cant scare her. Brittany and Faith will also love this wish. They to will get to pick something from the pot.Anyhow I just wanted to share my joy with all of you! I will post again soon!
NOVEMBER 11, 2005
Hello! WE GOT GREAT NEWS! Neurology wants to wait alittle while longer before they operate on Joanna's shunt! He still seems to think that it will malfunction sooner than later! He said the problem with slit shunt syndrome is that the brain gets really stiff do to the lack of fluid. If it is left like that for to long it could be very dangerous. But because her's has only been like that for about 6 months he wants to continue to wait it out. He said we will defintely know when she develops a syndrome from it. Thanks for all your prays and thought!
She started her new PT today! Great woman. She will defintely give Joanna a work out. She is a super sweet lady. She pushes Joanna to atleast try it once. When we left therapy today Joanna was so proud of her self. She cried near about the whole session but left with a smile. It's hard work, but will defintely pay off one day! I will post again soon! Lorie
The evaluation of a possible shunt malfunction should include an imaging study of the brain (most commonly a CT scan or, for children under 1 year, a head ultrasound). Although MRI scans can also show a shunt malfunction, they generally are not necessary and are more expensive and may require sedation or anesthesia. An increase in the size of the ventricles is consistent with a shunt malfunction. It is vital to understand, however, that between 5 and 15 percent of people with spina bifida and shunt malfunction may have subtle or even no visible change in the size of the ventricles. At the extreme, some people with shunted hydrocephalus can develop the slit (or stiff) ventricle syndrome. In these people over-drainage of CSF leads to very small (or slit) ventricles; it is thought that the walls of the ventricles temporarily block the ventricular shunt catheter leading to repeated episodes of temporary shunt malfunction without any visible increase in the size of the ventricles. Families and health care providers must therefore pay particular attention to the patient’s symptoms, particularly if they are similar to those that were present with previous shunt malfunctions.
Shunt infection is the other major complication of shunt operations. On average, about 5-10 percent of people will develop a shunt infection following each shunt operation; shunt infection rates are higher in babies than in older children and adults. Seventy percent of shunt infections appear within the first two months after a shunt operation, and 80 percent develop within 6 months. Skin bacteria (Staphylococcus epidermidis) are the most common types of shunt infection. Half of people with shunt infections present with symptoms of shunt malfunction. Additional problems may include fever or neck stiffness; pain, tenderness, redness, or drainage from the shunt incisions or tract; or abdominal pain. The diagnosis can be confirmed by performing a shunt tap — inserting a small needle into the valve or a tapping chamber of the shunt and withdrawing CSF for study.
Infections are generally treated both with antibiotics and with removal and replacement of the shunt system. There are two approaches to treatment. In the first, the shunt is removed and a temporary external drainage tube placed at the same time as antibiotic treatment is introduced, the temporary tube is then removed and a new shunt is re-inserted at the end of antibiotic treatment. This approach almost always eliminates the infection, but requires two operations. The second approach (assuming that the shunt is working) is to keep the infected shunt in place until the end of the antibiotic treatment, then remove and replace the infected shunt with a new one in a single operation. Although requiring fewer operations, this treatment is unfortunately less successful in treating the infection.
OCTOBER 27, 2005
Hello All! My household is finally over the sickness. Thank goodness. It stinks when all three of them are feeling bad. Things are back to normal.
We go tomorrow morning to meet Joanna's new physical therapist. She will also receive a new evaluation for PT. We already know it is a definate needed thing, but Joanna is new to this therapist so she is going to set Joanna some new gross motor skill goals. I am pretty siked about meeting her. Remember to wish us luck for thursday. Joanna will be put to sleep to have her shunt series and CT scan. Following the testing we will meet with her wonderful neurologist. I will update next weekend to fill you in on his plans. Take care and have a great weekend! Lorie
OCTOBER 20, 2005
Hello All! This past week has been quit a mess. All three of the girl's have been sick. Brittany with Bronchitis, Faith with asthma and Joanna has had Bronchitis and also been fighting a bladder infection. I got her into the pediatrician Monday morning and they first thought she had pneumonia because of the fever lasting over a week. We had been to the ER on the Saturday before and they said she had a virus because her chest x ray was normal. Anyhow she had continued to get worst so I took her in on Monday. She was wheezing quit a bit so they gave her a neb treatment with a steroid. Boy that helped. The doctor was going to have some blood work done to see why she has the fever, but she decided to check her urine just incase. I had no clue. Wow thats a first. I am usually on top of the infections, but it went right by me. I felt horrible for not knowing. The only thing I had noticed was a decrease in her urine output, but I thought that was from no drinking as much since she was sick. The pediatrician put her on omnicef for 10 days. I followed up with urology that next day and he wanted to treat the infection differently. He has me injecting antibiotics directly into her bladder! I must say that today has been one of the better days. She is beginning to feel better! Brittany & Faith are perking back up to. Thank goodness. It stinks when 1 of them is sick, but when all of them are sick it is terrible. Boy have I had some sleepless night lately. Anyhow I just wanted to post a little something. I think I am going to hit the bed a little early tonight! Take Care! LORIE
OCTOBER 14, 2005
Hello all! Sorry it has been awhile since my last update. Joanna is doing well. We just had another speech evaluation. She is still delayed in her expressive speech. No worry's on my part. She has come along way! She is alittle shy so when she is at speech she tends to be quite. At home is is a total different story. She chatters away. We will continue to see speech so her language and social skills improve. Right now we are still waiting to get back into physical therapy and also waiting for a new OT evauluation. We are alittle concerned with her being sooo over sensitive to new enviroments, and change. She doesn't tolerate noise at all unless she is very use to it. November is our next step as far as up coming surgeries. She meets nuero surgery November 3rd for shunt concerns. Then we will go from there! Hope eveyone is doing well, please continue to post on her site. It brings me much happiness to see that people care! XOXO Lorie
SEPTEMBER 24, 2005
Hello All! Hope everyone is having a good weekend. Joanna is doing well. We saw urology yesterday and everything is looking good. A big part of Joanna's surgery is her independence. Since the surgery I have been working on putting Joanna in underwear. I have been cathing her every 4 hrs since she came home. Around the 3rd hour she will begin to wet her underwear. So urology wants me to now cath every 3 hours. He doesn't want her bladder under pressure. He wants it relaxed. Give it a chance to grow and expand. This doesn't happen overnight. So we are going to try cathing every three hours and hopefully she will sucessfully be in underwear. WOW something I never thought I would see. Alot of children with Spina Bifida are in diapers their whole lifes. Thanks to a remarkable urologist Dr. Boyd Winslow he has given Joanna a life of independence!! I can't thank this man enough. He holds a very special place in our hearts for what he has done for Joanna and other children all over the world. He is a doctor that does the gift of healing. He flies children to the U.S from many different countires to operated on them. FOR FREE! Recently he operated on alittle girl who had double everything from the waist down. He is just amazing.
Please take time today, tomorrow and always to remember SPINA BIFIDA AWARENESS. Pass Joanna's story on to other's who could maybe learn about Spina Bifida!! www.chkd.org
SEPTEMBER 12, 2005
Hello! I am sorry it has been so long since I updated her site. We have just been so busy. Getting ready for school to start. Brittany started the 2nd grade & Faith started preschool. Faith loves it. Joanna wont start anything for a bit. After she turns 4 I will start her in preschool to. Anyways Joanna is still on her road to recovery. She has started walking again without the walker. I am sooo happy about that. Her legs are very weak. I am trying to get her back into therapy but she is now on a waiting list. Which I think is rediculous. You would think knowing she went out for surgery and being so weak they would want to get her in sooner. We have been doing really good flushing the cycostomy. She is finally starting to get use to it. Cathing is sooo much easier through the belly button. She goes back for another recheck to urology the end of this month. She is sheduled for a CT scan and shunt series with her neuro surgeon the 3rd of November. We will she from there what the next step will be. Take care and I will try to update sooner!
AUGUST 13, 2005
Hello All! Joanna is doing better! Our visit to Richmond again went well. The doctor went ahead and removed the stitches from the cecostomy tube and taught me how to insert a cath to flush her bowels! I will continue to update! Take a minute and look at Joanna's new surgery photos. Talk to everyone soon!
AUGUST 09, 2005
Hello All! Please wish us lots of luck for tomorrow!! Joanna's super pubic tube stitches came out yesterday and then tonight her cecostomy tube came completey out. So back to Richmond we go in the morning! I spoke with the Doctor tonight and she needs to be seen. Not sure if they will replace with a new tube or teach us how to do it when needed. We are not sure the tube traces are healed enough to keep the tube out..Anyhow I will update tomorrow night and let everyone know how it went. Joanna is going to hate this visit. Anytime we even touch her belly she cries! I hate to see her go through that tomorrow, but we have no choice! Talk to you soon!! Lorie
AUGUST 08, 2005
Hello All! We are finally home!!! Joanna's surgery went better than we ever imagined. Her recovery was quite hard but she is pulling through very nicely!! She has actually gained two pounds since we left! Joanna's still need's all the prays she can get. Recovery will take about 2 months. She has lost her ability to walk right now. I beleive she is just weak from being in the bed for 2 weeks. Please check her photo's out this weekend. It will take me that long to get them on here! I will continue to update you! By the way Joanna came home with 4 tubes and over 300 stitches inside! Her poor little belly!! Ohhh sooo sore! Her G Tube, Super Pubic Tube, Vesicostomy Tube & Cecostomy Tube! Hopefully in a month or so she should get them out! We shall see!............................ Thanks For All The Support, Lorie
JULY 22, 2005
Hello All! I just wanted to post one more time. We are leaving sunday morning around 10a.m. to head to Richmond. I am going to try my best to keep everyone updated while she is there! These are going to be some of the hardest days of my life!!! Lorie, Joanna's Mommy
PlEASE ASK THE LORD ABOVE TO TAKE EXTRA SPECIAL CARE OF ME! Please let him give the doctor's the knowledge & strenght to do their best as I go through my long operation! Please let him keep my Mommy, Daddy & Sister's strong as they await my recovery! Lord Keep Me Close Under Your Wing~ Amen
Joanna Lee Sibert
I will be on Make a Child Smile Through July & I will be added to Love Quilts on July 23rd.
Go To My Links Above To Visit These Sites!
JULY 09, 2005
Hello Everyone! I spoke with urology yesterday concerning Joanna's bowel prep before surgery. They informed me that we will have to start clear liquid diet on Saturday the 23rd. I wasn't to happy about this. If she has to be starved I would rather them do that at the hospital. She would not understand if we did this at home. I told the nurse that I didn't think she would need this long of clear liquids to clear her bowel. Joanna already has completely loose stools due to all the laxatives. Anyhow she is suppose to call me Monday and let me know what the doctor decides. Pray he says Sunday only! Poor little thing will be sooo hungery. She will be admitted July 25th at 7a.m. to start antibiotics & NG tube with bowel cleanout. Her surgery is July 26th at 7:30 a.m.
We took the kids to Busch Garden's Thursday to have alittle fun. To say the least Joanna didn't have a very good time. With her sensory issues everything was alittle overwhelming. Wish there was somewhere else around here I could take the girls that they would really enjoy. Anyone have any ideas???............. Well hope you all have a great weekend and I'll post again soon! Don't forget to check out her photos & Make a Child Smile Site!
JULY 02, 2005
Hello All! JOANNA IS OFFICALLY WALKING INDEPENDENTLY!!! She runs the roost around here. lol. She is such a blessing......We just went on a mini vacation to Great Wolf Lodge. The girls loved it. I am so glad they got to do something fun before Joanna's has her surgery! Please visit links below to see photo's!
JUNE 23, 2005
Hello Everyone! Hope you all are well. Joanna has been walking independently more and more everyday! We are so proud of her. I sure hope this surgery doesn't knock her back to much! I got great news tonight!! Joanna got accepted for Make A Smile Smile Organization. This is when they feature 3 children per month on their website. The child receive lots of love & prays. Please visit the site July 1, 2005 to see Joanna and all the other very special children! www.makeachildsmile.org
JUNE 17, 2005
Hello All! Just wanted to drop a line and say Joanna is hanging in there! We are all waiting to get this surgery done and over with. I think the waiting is the hardest thing. It is driving me crazy! Joanna took 48 independent steps yesterday at therapy!! We are so proud of her. Little miss wont walk at home any more. She knows she can get by without doing it at home. At therapy she has no choice. I will keep everyone updated! HAVE A GREAT WEEKEND!
JUNE 10, 2005
Just wanted to post a special thank you to everyone for being so caring and supportive as our family goes through this difficult time! Thanks for everything!!! Please keep the prayers going!!!
JUNE 08, 2005
Today was a pretty rough day for me! Brittany & Joanna had their cardiology appointment today!! Thank goodness Brittany's heart hasn't gotten any worse from last year! The doctor listened to Joanna and thought that hers was an innocent murmur. He did an echo and found out the opposite! Joanna has a heart defect. A bicuspid aortic vavle. They exact same defect Brittany has but Joanna's vavle is leaking more than Brittany's. The good news is that he gave her the ok for surgery with antibiotics. The bad news is that it will just be a waiting game. Hopefully Joanna's heart will due ok! Please continue to Pray for her!
Today was a wonderful day for me!!! Tonight around 7:30p.m while we were visiting with Grandma, Uncle Jimmy, Aunt Ang & Cousin Tyler........ Joanna took off walking. We were all totally surprised & so excited. Daddy even rode over in the firetruck with his friends to see his baby walk! This was the greatest feeling ever! We have worked so hard to get to this point. She walked all the way down the hallway to her sister's room. BY HERSELF!! The girls were so excited. I sure can't wait to go to physical therapy tomorrow to show Dawn. She is going to be shocked!!!!
INFO ON BICUSPID AORTIC VAVLE:
JUNE 05, 2005
Hello All! Caring Bridge Contacted Me Concerning The Guestbook Today! They Are Going To Fix The Sign In Problem ASAP! Please Still Sign Joanna's Guestbook; You Just Have To Enter Your Email Address!
JUNE 02, 2005
Hello Everyone! Joanna saw her kidney doctor today! Just a checkup before surgery! She is really pleased that Joanna is having the augmentation. She did say to prepare ourselves because this is a very long operation. She will remian in PICU for a while! So please continue to say those prayers!!!
Urology Doctor called me today to just go over my concerns about everything. Just a few medical questions I needed to ask. The Bowel procedure Joanna is having is called a Appendicocecostomy! This is were he will put an opening from the bowel to the appendix to the skin. For the Bladder Augmentation he will use part of her segmod colon with is already impaired from the spina bifida and a patch of her stomach wall. He uses a piece of stomach because it produces acids that will help absorb some of the puss the bowel creates, but for the first month after surgery she will have to take Pepcid to keep the acid down so it wont absorb the stitches in the stomach!
JUNE 01, 2005
Hello All! Joanna saw her gastrologist today! He thinks that Joanna's surgery will be a great option for her bowels! He even spoke with the urologist himself to get all the details! He wasn't sure that a urologist could surgically reroute the bowels! After talking to urology he then realized this is one of many he has done! Joanna's urologist is highly talked about in Virginia! We are so glad she has a great doctor!
MAY 28, 2005
Urology called today and they scheduled Joanna's surgery for July 26, 2005. We will head to Richmond on the 24th to get settled in. She has to be at the hospital on the 25th at 8:00a.m. She will be admitted 24hrs before surgery to prep her bowel.
I was alittle concerned about waiting so long but the nurse said he is very booked. Being that Joanna will take an entire scheduled day the first openning is in July. She spoke with the doctor and he said as long as I continue to give Joanna her antibiotics it will be ok to wait.
I will update again soon! Lorie
MAY 27, 2005
We are waiting on urology to call with Joanna's surgery date. I spoke with them this morning. Joanna has to have her heart murmur checked before they can ok her for anesthesia. Especially since this is such along procedure. Joanna's heart murmur was discovered by Rehab a few weeks ago. I had the pediatrican listen. She seems to think it is innocent but because Brittany has a heart defect it is better to be safe. She is scheduled to see a cardiologist June 8th in Richmond.
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My Mommy's Journal
July 25, 2011
Where do I even begin.....Its taken me 2 weeks to have the strength to get on here and update whats going on with my Jojo. May 12, 2001 she had a shunt revision that went very well. A couple days after surgery I noticed a droopy eyelid. I called doctor after doctor and had test after test and finally on July 14, 2011 we had a diagnosis. Joanna had not only been living a life of ups and down with Spina Bifida & brital bones......my baby has now been diagnosed with cancer. Rhabdomyosarcoma to be exact. Click here and it will explain to you exactly what it is. Jojo had surgery the 14th of July to have the tumor removed. Biopsy showed that all the cancerous cells were not completely removed. Today I did find found out that the cancer is no where else in her body at this time. Thank God!! So for those of you who have followed Jojo's for years or just came across her you will know that my baby girl is one strong trooper. My tearducts are full of happy tears, sad tears and tear of disbelief! After everything this little girl has been thru why this??? I guess we will never know. She will start chemo on Wed 27th. She is going to undergo 22 weeks of chemo therapy & 6 weeks of radiation. This cancer is aggressive & rare so we must fight it agressive & full force. We Will Beat This & When She Does I Want The World To Know Nothing Is Impossible! Thru God, Faith & Love We Can All Overcome! Until I post again please continue to pray for my little girl. I honestly have no words to describe to anyone how I feel as a mother. My heart feels like its been ripped out of my chest! Regardless of how I feel, I will keep my chin up & fight like hell with my baby girl! Cancer will not win!Lots of family & freinds are holding benefits to raise money for Jojo's new journey. You may contact me via email at perfectlyinked@yahoo.com or if you have facebook please add her benefits page by clicking here
Janurary 8, 2011
So where do I begin??? A year has gone by since I last updated. After a year of paperwork and fighting for what Jojo needed I got her seen in Canada for her bone issues. Thank god she does not have O.I. She just has ostepenia pretty bad caused by the lack of muscle tone and lack of good physical activity. She is currently receiving infusions to help harden her bones......also know as "liquid concrete". She goes to Shriner's Hospital In Montreal, Quebec every six months to get these. Hope soon it will help her alot!
Jojo is in the 2nd grade doing amazing in class. Her sister Brittany is in the 7th grade and her other sister Faith is in the 3rd grade. They are all growing like weeds. We have starting going to church and I have meet another awesome group of people. Thanks FLC! I want to get back into updating this site and spreading the word on Spina Bifida Awareness! I continue to cath Jojo every 4 hours thru her vesticostomy, her shunt is still holding its own so we go yearly for that. Hopefully soon she will beable to start physical therapy again. I wanna wish each and everyone of you a very Merry Christmas & a Happy New Year! Thanks for everyone's support & for checking on Joanna. More to come soon, adding pictures daily also. Keep checking back & dont forget to sign her guestbook.
With Love, Lorie
Jojo's fundraiser Link: http://bit.ly/exOgM3
December 9, 2009
Well lets start by saying Im sorry its been forever since I updated! Over the past year she has broke 3 major bones from simple accidents. Collar bone from falling out a short chair, femur which is the biggest bone in the body by who knows. She walked around with it broke for 2 weeks b4 they figured out what was wrong. A grown man would have been laid out on the floor in pain. In Oct she broke completely thru her tib & fib bones in her leg from simply walking, tripping and fell.....So after testing thru Endo they discovered Joanna not only has a growth hormone defecency, she produces NO growth hormones. Which explains her being the size of a 3 year old. She has been taking shots for that for several months......after more testing they are thinking she has some kinda RARE bone disease, they believe is genetic....they wont tell us what yet...her bone scan came back real bad...she is gonna have to go to CHKD every 2 months and get infusions of this medicine....she will stay 3 days at a time....until she is seen by genetics we dont know what exactly is wrong. He said they are looking at to things but cant discuss them right now. Sooooo my concern is he has only treated 3 kids with this.....his partner only 12 in his career....I called MCV hoping to find a more experienced Dr and in the past 5 years they have only treated 2. The medication is called Pamidronate. When I researched it I didnt like what I read....It is used for cancer patients with Bone Marrow Cancer and other cancers. Also used to treat patients with Pagets disease. Only 1% of adults get that. It causes enlarging of the bones which Jojo def doesnt have. I am not saying my daughter has cancer by no means. I am saying we are clueless at this point. He first admission for infusion will be the last week of December we hope. At that time Genetics will see her in house. Outside of that I cant get in until March 16th. Sorry but I am Jojo's only advocate and I will not wait 2 months to get this ball rolling. Until things are on the way for the better she is on strick physical limatations. WALKING and thats it....Please prayer for my lil girl. It can truely move mountains.....xoxo
March 16, 2009
Wow! Yea its been way to long since I have updated. Life has been a roller coaster to say the least. We have not forgot anyone that has EVER been apart of Joanna's journey through life with Spina Bifida. I am back now and hope to get on top of things again. Recently losing My Dad very unexpectly Sept 1, 2008 has opened my eyes big time. Jojo has had a hard time losing her Papa and the other girls to. Children suffer more than you think. Jojo is growing like a weed. Very successful in school and therapy! She still takes Ot, Pt and loves them both. Above is a scroll of new pictures of her. I am changing the site little by little. Keep checking back. And dont forget to sign her guestbook. Miss you all!! xoxo,
Lorie
APRIL 3, 2008
WOW!! I cant believe this day is here. My baby girl is turing 5! I feel so blessed & thankful to have this day with her. It has been a very hard 5 years traveled but she has accomplished more than we could have ever imagined. I only hope and look forward to watching her excel for years to come.
She has been doing really good. Loving preschool and playing with all the other children! She continues PT & OT and is exceling very well. She just got her 5th pair of AFO'S and this time she picked hot pink. Imagine that..haha. If it's pink then Joanna is good to go! I would like to apologize for not having her address up for cards and things sooner. Finally it is posted below! Please sign her guestbook! I will update soon!
December 23, 2007
Hello Everyone! First I would like to start off by saying I have missed each and everyone of you over the past few weeks. Unfortunately due to some financial issues Im going through right now. Joanna's site along with her mailbox got closed. The site is now back up and running thank goodness and a new mailbox will be started at the first of the year! It was so odd this year because normaly Joanna and her sisters are overflowed with gifts from people around the world, but this year things came up and the box was closed. I appreciate everyone's emails concerning what was going on.
Joanna is doing remarkable right now. Other than struggling with some new or should I say increased leg weakness she is doing well! We continue her therapy every week for pt and ot. She was casted for new braces the middle of this past week and she is so excited abotu getting new pink ones! She has enjoyed preschool this year. Excelling in everything. Even showing interest in P.E. At first the thought of P.E. had her in tears.....She is learning that she can atleast try things before she gives up!
I hope everyone has a wonderful MERRY CHRISTMAS and A Happy New Year! I will post again soon after the holidays!!! Love You All!
November 7, 2007
Wow you guys it's been awhile. I havent forgot about anyone. Just alot going on right now in my life. Joanna is doing soooo good. She started pre-school this year and loves it.
She is excelling right along with all the other little boys and girls. Joanna's health is good also. I am so thankful for that! Nero surgeon still wants to hold off on surgery and wait things out. She continues with physical and occupational therapy. Doing very well in both. She goes this week to be casted for new braces and shoes. She is so excited about that! Her sisters Brittany and Faith are doing great! Enjoying school and their friends right now. I will post again real soon! I miss talking to each and everyone of you!!!!!!!!
With Love Joanna's Mommy & Biggest Fan,
Lorie
July 17, 2007
Ok everyone sorry it took me so long to get back to you guys! Joanna's surgery went well. They did a cystoscopy and excision of polyp in appendicovesicostomy tract. NO HERNIA AND NO STONES. The doctor said we have taken care of things very well.
Joanna and her sisters continue to enjoy the summer at the beach and pool. Hope everyone is doing the same!! Ill update soon! Thanks for all the wishes!
July 9, 2007
HEY YOU GUYS! JUST WANTED TO LET YOU KNOW THAT JOANNA IS HAVING OUT PATIENT SURGERY ON THURSDAY. WE HAVE TO BE IN RICHMOND AT 6:30 am. SHE HAS BEEN HAVING SOME TROUBLE WITH HER VESTICOSTOMY! (Doctors removed her appendix, colon and part of her stomach July 2005 to make a tunnel from her bladder to her belly button where we catherized her) The wanted to check her for scar tissue, hernia in the site and kidney stones. They also think it could be pilups. If so they will remove them then. If it is a hernia I am not sure at this time what they will do. I would imagine that would have to be fixed at a later date! Anyways just wish her luck for the best outcome. The smaller problem is easier to fix!
June 13, 2007
My goodness its been forever since I let a journal entry. Shame on me and My busy busy life. I swear it seems like yesterday it was Joanna's birthday! Anyhow things are going good. Joanna is growing like a weed. Her social anxiety seems to be improving everyday. That in itself is a very big step. She is getting to know people alot for easier and enjoying the outside alot more. She has been spending most her time outside on the playground. Imagine that. LOL........Joanna continues her phyical and ot therapy every week. Making great strides to improve her skills. She is registered for pre-school starting in Sept. She is so excited about that!!! Brittany just passed the 3rd grade. She is growing up to fast for me. Ms. Grown Pants. She is into her friends and music. Faith just pasted kindergarden and boy is she a mess. She is a pistol to say the least. She loves getting into anything her sisters are.
Anyhow I just wanted to write and give an update. I will make sure I dont keep such a distance between my hournal entires. Everyone have a good day and talk real soon!
With Love,
Lorie
APRIL 3, 2007
TODAY IS MY LITTLE ONES 4th BIRTHDAY. HAPPY BIRTHDAY PEANUT!! TODAY IS A WONDERFUL DAY FOR ME. I HAVE LOOKED AT HER THIS AM IN ABOUT TEARS. THOSE ARE HAPPY TEARS!!!! I CANT BELIEVE SHE IS 4 YEARS OLD. I AM THE LUCKIEST MOMMA ALIVE. SHE HAS BEEN THROUGH SO MUCH IN HER LITTLE 4 YEARS. MORE THAN MOST WILL EVER GO THROUGH IN THEIR ENTIRE LIVES. I THANK GOD FOR TODAY!! I PRAY THAT JOJO WILL CONTINUE TO STRIVE IN HER JOURNEY THROUGH LIFE WITH SPINA BIFIDA! SHE IS ONE STRONG LITTLE GIRL. FROM DAY ONE SHE HAS ALWAYS KEPT HER HEAD UP HIGH. I CHERISH TODAY, TOMORROW AND ALWAYS!TODAY IS ANOTHER DAY WHEN I REALIZE THE MOST IMPORTANT THINGS IN LIFE. LIKE THE QUOTE SAYS "LIFE IS NOT MEASURED BY THE NUMBER OF BREATHS WE TAKE, BUT THE NUMBER OF MOMENTS THAT TAKE OR BREATH AWAY!! IF YOU GET A MINUTE OUT OF TODAY PLEASE SIGN HER GUESTBOOK.
March 28, 2007
Hello Everyone! Man these last two days have been beautiful. Joanna has enjoyed playing outside like crazy. The home page photo was taken the other day. She loves spring time. Playing in that sand box is her #1 priority! Thanks Dave ;-)....The photo above was taken at the Make A Wish Annual Golf tournament. He is the president and Ceo of chartway bank & We promise foundation. They work together to raise money for children! This picture is being used on the Coin Drop containers at the banks. Anyhow I thought it was neat!
Joanna has been doing good the last few weeks. Still struggling to go to physical therapy but once she gets there she does excellent. We live day by day with her social anxiety! The girls will be on spring break this coming week. Joanna is going to enjoy spending time with her sisters. And Im sure it will be spent right in the back yard on that wonderful playground. Thanks to Make A Wish. Hope everyone has a great week...Joanna's Birthday is Tuesday the 3rd. If You Get A Minute Drop Her A Note!
March 5, 2007
Hello Everyone! How is things going?? We are doing pretty good. I swear if the flu doesnt's stop traveling around my house I am going to go nuts. Faith was out of school Thursday and Friday and now Brittany is out today. I sure hope Joanna doesn't get it.She has enough problems already. Joanna had her antibiotic allergy testing done on Monday and we got some good results. It seems to be ok to start introducing her body back to the pencillin's but under good watch! Poor baby hated having that done and I hated having to hold her down for them to do it. 12 prikes on her back and 4 on each arm. She was ready to go postal on those nurses. Anyways she is still continuing with therapy. We breifly hard her speak tested again and it seems that she may have a developmental delay. Which at this point until she turns 4 they are not going to worry about it. The things she is doing are normal for kids under the age of 4. So we shall see....Joanna has been struggling terrible with her sensory and anxiety issues. Poor little has gotten to where she doesn't want to leave the house. Noise, sight and anything strange seems to make her extremely uncomfortable. Infact it is affecting her everyday activites. The OT gave me some got things to try at home. Once we weed some of this out we are going to see the doctor about discussing medication for treatment. I have always been a firm believer of not giving kids so young medication for things like this, but she is suffering in more ways than one way. She is so afraid of everything. Its so unfair that she have to live every second in fear of the unknown. We want the best for her. We want her to beable to enjoy everything all other kids do. Please wish us well as we try some brushing therapy & pressure massaging. The therapist recomends doing this 30 minutes prior to leaving the house or going into a situation that we think may make her uncomfortable. Thanks again for everyone's thought and guestbook entries. I will post again soon. I know it hasn't been as often but I am trying hard to stay on top of things! Take Care ((hugs))
Feb 6, 2006
Hello Guys! Ok Ok I know it's been a whole month since I have been on here to update. Things are going rather well. A couple weeks ago Joanna had a kidney check up and everything looked great! To be honest I have been sick off and on since before christmas. Finally got some results yesterday. I have asthma. A couple of my others breathing test results were abnormal to. They want to check me for hypothyroid & anemia. So we shall see. Anyhoo the girls are enjoying school and Joanna is finally enjoying therapy. Joe is working as usual. But I am so glad he loves his job.
Well I will go for now, but I hope everyone is enjoying this cold weather. I personal LOVE it. Take care until next time!
January 1, 2007
Just wanted to check in and wish everyone a Happy New Year. Joanna has been doing pretty good. All 3 girls have been battling ear infections for the past month. Joanna was rather sick on christmas morning. She didnt even want to open her presents. After some tylenol she started to perk up.....I would like to take a minute to thank each and everyone of you that sent Joanna and her sisters xmas cards and gifts. You guys gave them your own little xmas and it was so amazing. They were so excited. I thank all of you for your continued support for Joanna & Our Family. It really means alot to us. I wish you all a wonderful New Year! I will post again very soon!
Take Care,
Lorie
December 4, 2006
Hello All! I know its been a while since my last update. Nothing has changed much and I guess that would be a good thing. Joanna continues therapy twice a week and is starting to get back in the swing of things with physical therapy. She had hit a rut recently and thank goodness is pulling through that. She continues to make strides in OT and Mrs. Dana is very proud of her for that. For those of you that are from around here Joanna is going to be featured in two magazines for Make A Wish; Inside Business and also Portfolio. We are excited about that. She thinks she is alittle star. They have truely made her feel like one. I couldnt thank them enough....We have been getting ready for the holidays lately. Got the xmas tree all up and Joe is putting out the outside lights as we speak. I cant wait this xmas. My favorite holiday. I tell you what the weather today make it feel like more the season. 28 degrees tonight!....Please continue to pray for Joanna. Your thoughts are so appreciated. We thank each and everyone of you that take the time out to do that and also all the folks that continue to send her fan mail. She really enjoys it all! God Bless and I will be back sooner next time to post!
November 7, 2006
Hello Guys I know it's been a bit but things have been crazy crazy around here. Joanna is doing a little better as far as the sensory stuff is concerned. Friday we tried PT at a different location other than the office and she handled it rather well. The therapist is going to see her a few more times outside of the office and then we are going to have to try and get here back there. Wish us lots of luck.
We saw the orthopedic surgeon today concerning her gait. And the doctor said he doesnt even want to xray them. Children with spina bifida are know for hips problems including popping them out of joint. He said no matter how many sugeries he would do they will still go back to the same place they are now due to all the weak muscle tone and tendens. Joanna also had a knot on the side of her foot that she had xrayed and it turns out just to be inflamation from direct trauma all the time. She rolls it out really bad, so without braces she walks on her ankle basically! Anyhow he said it was just like a calus and for us to keep an eye on that. Later on if it becomes bothersome he can sometimes do surgery to move tendons, but honestly there is no need since she has no feeling there. We just dont want the skin to break down.
Faith has been very sick with her ashtma. We have been in the Er for the past two nights. Poor baby also has double ear infections. Pray that she will fell better soon.
Brittany is doing good. Miss Thang! LOL She started swim lessons and is loving that! Faith did to but wasnt able to go tonight! Hope all is well. I will post again soon!
October 24, 2006
Hello Everyone!! Hope your week is off to a good start! Joanna is doing ok. Her sensory issues have gotten maybe a tiny bit better. She saw Dr. Winslow the Urologist last week and everything looked good. He is alittle concerned about Joanna's gait when she walks. She walks very wide in the hips which is natural for kids with low trunk strenght but he wants her to be evaluated by an othropedic surgeon. That appointment is scheduled for November 7, 2006. We will go from there.
Joe has been working hard at the fire house and the girls have been very busy with school. Faith is finally starting to show great improvement with her writing. I am proud of them for doing so well so far this year. Brittany got all A's and i B on her progress report. Anyhow I am still here and you guys that follow our journey are not forgotten. Sometimes it takes me a few days to get something posted on here. Between normal life, PTA Secretary and A Girl Scout leader this mom of 3 stays very busy! Just remember..........
October 8, 2006
Hello Everyone! I know it's been a bit since the last update and I appoligize. Joanna has had a crappy to weeks off and on with her sensory isssues. You all know she has Sensory Integration Dysfunction. These past two weeks have been Joanna's worst experience since she was born with this. Everything is bothering her. She even is scared to death to go to physical therapy, which is a hard thing for both me and the therapist to deal with. Joanna is in constant iritation with everything lately. For those of you who are not familiar with sensory integration dysfunction let me explain:
Our mind and body are superbly interwoven to meet the demands of today's world. The feelings, thoughts and actions we experience occur through the complex actions of our brain. How we process environmental and internal information has a major impact on our feelings, thoughts and actions. The slightest change in our brain processes can influence how we manage daily living skills, academic progress and social interaction. Sensory integration dysfunction is one example of what can go wrong in the processes of the brain.
Interoceptive: "Sensory system of the internal organs (e.g., heart rate, hunger, digestion, state of arousal, mood, etc.),
Tactile Sense: Processing information about touch received primarily through the skin,
Vestibular Sense: Processing information about movement, gravity and balance, primarily received through the inner ear, and
Proprioceptive: Processing information about body position received through the muscles, ligaments and joints
The brain locates, sorts and orders sensations--somewhat like a traffic policeman directs moving cars!
Sensory integration dysfunction is the inability to process certain information received through the senses. When an individual has sensory integration dysfunction, he or she may be unable to respond to certain sensory information to plan and organize what he or she needs to do in an appropriate and automatic manner. This may cause the individual to resort to the primitive survival techniques of fright, flight and fight located in the "primitive" brain. This fright, flight and fight response can appear extreme and inappropriate for a particular situation.
Sensory integration dysfunction is a disruption in the process of intake, organization and output of sensory information. Inefficient sensory intake is taking in too much or too little information. With too much information, the brain is on overload and causes an individual to avoid sensory stimuli. With too little information, the brain seeks more sensory stimuli. Neurological disorganization can occur in three different manners. One way is when the brain does not receive messages because of a disconnection in the neuron cells. A second manner is sensory messages are received inconsistently. The third way is sensory messages are received consistently but not connect properly with other sensory messages. Inefficient motor, language or emotional output occurs when the brain poorly processes sensory messages, which deprives us of a motor response in order to behave in a purposeful way.
Hope that explained some of what Joanna is experencing right now! Other than this issue all is well. She has missed the girls since they have started school, but we seem to stay busy anyhow! I try to get her up and going. She is not thrilled about going anywhere outside the home unless it is to go to the school to pick up the girls! Have a great day and I will update again soon!
September 20, 2006
Hello guys! Sorry it's been a bit since I updates. Joanna was sick all last week complaining of headache and abdominal pain. After a week of that I had her seen by the neurosurgeon to check her
shunt. Read Below To Understand This:
The brain floats in a protective cushion of cerebrospinal fluid (CSF). It also surrounds the spinal cord and fills open spaces (ventricles) inside the brain. The amount of CSF that circulates around the brain normally stays the same, replenished by the body, and helps to maintain a constant pressure inside the skull, known as intracranial pressure (ICP).
Hydrocephalus, which means "water brain" occurs when too much CSF accumulates within the ventricles of the brain and increases intracranial pressure. Unfortunately, increased pressure within the colosed, rigid box of the skull cannot be released on its own by the body. Sometimes a shunt is necessary to relieve pressure on the brain from the excess fluid. Without treatment the brain will be damaged as pressure inside the skull enlarges the ventricles, causing compression and, ultimately, death of sensitive brain tissues.
Surgery is preformed to treat hydrocephalus directly, by removing the cause of CSF obstruction, or indirectly, by implanting a device that can "shunt" the excess CSF elsewhere in the body where it can be tolerated - most often into the abdomen. Once inserted, the shunt usually remains in place for life and continuously regulates intracranial pressure.
She had a CT scan done on thursday and the upper part of the shunt looked ok. She still of course has slit ventricles which could be causing the headaches. They come and go! When symptons begin to develope it goes from having slit ventricles to slit ventricle syndrome.
What is slit ventricle syndrome?
Slit ventricle syndrome is a constellation of symptoms which, for example, can appear in patients with a functioning shunt and in whom the brain has lost part of its elasticity. The symptoms consist of headaches, vomiting, drowsiness etc. Infuriatingly enough, these symptoms resemble those of shunt malformation.
The appearance of the symptoms is very cyclical, often with the regularity of a clock for example, the patient is well for three weeks, then violently ill and sleepy for 24 hours and then well again. There is more often than not no cause for the symptoms, although a minor viral illness can kick off the symptoms. Often the patient is taken to hospital and imaging is done which shows the ventricles to be small, or even unchanged, compared to previous imaging. Then treatment would go from there.
So anyhow we just wait and see what happens. Everyday we wake up to the unknow of what the day may bring.
I have been sick with my sinuses for the past 4 days. Today is actually the first day that I have felt beter! Thank goodness. I added alot of pictures to the Thanks page from the car wash we had for Joanna in June 2005. Check them out when you get a chance! Thanks again for all the prayers and support!
Sept 11, 2006
Remembering The Victims Of 9-11
When I'm called to duty God
wherever flames may rage
give me strength to save a life
whatever be its age
Help me to embrace a little child
before it is too late
or save an older person from
the horror of that fate
Enable me to be alert
to hear the weakest shout
and quickly and efficiently
to put the fire out
I want to fill my calling and
to give the best in me
to guard my neighbor and
protect his property
And if according to your will
I have to lose my life
bless with your protecting hand
my children and my wife.
This is dedicated to the memory of all fallen firefighter's
who made the ultimate sacrifice.
Sept 8, 2006
Good Morning Everyone! We attended The 8th Annual Charity Golf Classic for Make A Wish. We Had A Blast! Amazing group of people. Including the Volunteers, Make A Wish kids, their families, Chartway, We Promise Foundation...Just everyone was wonderful. Go to the Make A Wish page on here and read all about it!
Sept 4, 2006
Just a quick note before I hit the bed. The girls head to school tomorrow. Brittany in the 3rd grade and my little Faith in K. I cant believe another one leaving me. Wish them luck for the first day. They both seem excited.
Joanna is doing good. She is going to miss them like crazy. Tomorrow she has her long awaited allergy appointment. They are going to do the testing for the antibiotics. Not sure if they will actually test her tomorrow or consult and then set up the testing. I will let you know. And then Thursday we have the Make A Wish golf tournament. We are pretty excited about that! I will post again soon! Take care to you all!
August 24, 2006
JOANNA GOT HER NEW BRACES TODAY! I THINK THEY ARE SO CUTE!!!
SEPT 7TH JOANNA WILL BE ATTENDING THE CHARTWAY GOLF TOURNAMENT! THROUGH THE WE PROMISE FOUNDATION, CHARTWAY CONTINUES TO LEAD THE CHARGE IN FUNDRAISING FOR THE MAKE A WISH FOUNDATION OF EATERN VA. THE MAKE A WISH CHILDREN WILL MEET AT THE OFFICE, BE TAKEN IN A LIMO TO THE GOLF COURSE, THEY ARE GREETED WITH RED CARPET AND CHARTWAY VOLUNTEERS WILL WHISK THEM AWAY IN GOLF AND TAKE THEM ALLOVER THE COURSE TO MEET THE SPONSORS. DINNER IS SERVED AND FESTIVITIES! THE KIDS SHOULD HAVE A BLAST! PICS BELOW! PLEASE ALLOW TIME TO LOAD!!
August 18, 2006
I am so excited! Joanna was featured on the Make a Wish Website! If you go to the *New * Make A Wish Page on here you will see a link!
August 8, 2006
Today has been sooo crazy! Celebrating my 29th birthday has been impossible.Glad we went to dinner last night! Joe got up this am to head to work and his back was killing him! He hurt it at work last wednesday lifting on a patient! He thought it was feeling better. Anyhow I had to take him to the emergency room. Poor thing was in such pain! They gave him some good meds so hopefully he will start feeling better soon. He doesnt go back to work till saturday! After we left the ER we grabbed some Wendy's to take back home. My Mom and Granny were there watching the girls for us! Then 30 minutes after I got hom the computer guy called to come look at the pc.It had to have a new mother board! A new computer. My luck! Anyways then I had to leave an hour later to take Joanna to the doctor to be casted for her new braces.I picked red foam with hibicious flowers on the straps!. I think it will look cute!! He is building the side of the left brace up to try and keep her foot from turning out! Anyways.... It has been a busy day! Just wanted to say hello! CLICK HELLO KITTY TO SEE THE CASTING PICTURES!August 6, 2006
Hello Again! Hope everyone had a great weekend. I had a good one. A group of my girlfriends took me out for my 29th birthday which is actually the 8th! We had such a good time! Joe stayed home with the girls and took them out to dinner! Of course they missed me like crazy! Acted like I had been gone for a year!This week is a busy one! Tuesday we have Joanna's casting appointment for her new braces! That should be exciting. Dont think she is going to like it to much! Wednesday she has a urology appointment in Richmond. Just a checkup. Thursday is therapy in Suffolk and friday is therapy in Newport News! So anyhow wish us luck on these upcoming days and I will defintely let you know how it all goes and add photos from the casting! They are always super cute! Take care! Until next time.....xoxo
July 28, 2006
Hello All! I havent for one minute forgot about updating! Everyday it seems like we have been going to the pool at my good friend's house. Joanna loves it! The girls can't get enough of it either! Joanna saw her kidney doctor last week and she was so impressed at how well she was doing. In January we are scheduled for a kidney ultrasound. Check again to see how her kidney's are doing since the surgery. By the way the 26th was our 1 year anniversary of that! WOW!! I can't beleive it's been a year! I am so blessed at how Joanna is doing. I would like to thank Dr. Winslow again for all he has done for my little girl! The hands of a surgeon like him are heaven sent!
July 14, 2006
Hello All! Well it’s Friday thank goodness! What’s everyone got planned for the weekend?? We are going to do nothing! Yesterday day was all day therapy appointments! We left the house at 12:30 for therapy in Suffolk at 1:30. That went very well. Check out the new pictures on the About Me page! Then we had to go to physical therapy to meet a man that does the ordering for Joanna’s new chair. She had to be fitted and measured! It’s not called a wheel chair, but an adaptive stroller. Its rather nice and is going to be pink. I am so excited. This umbrella stroller is getting on my nerves! Plus this thing will last forever! Anyhow we didnt get home till almost 6 oclock, so today we have done absoultely nothing! Below is a picture of her new stroller, but it will be pink! Take care and have a great weekend! **We just received sad news! One of Joanna's wish grantor's passed away July 6th. (Toby Vaught) We have added a page called Loving Memory of Toby. Please check it out and pray for his family. We are in shock!
July 8, 2006
Hello All! We got back from vacation really late last night! Joanna was defintley on a sensory overload for the trip. The sight of the mountains scared her to death and the water park, well you can imagine how that went. Me and Joe carried her for 5 1/2 hours. Our arms are still sore from carrying her around. Brittany & Faith had a blast. Yesterday we got to spend the day with Joe's Grandma. We only get to see her maybe once a year. So that was nice. She lives about 40 minutes from the resort. That worked out great! Anyhow We have lots of pictures to show you! Please Click on Hello Kitty to see them all.
July 4, 2006
Just wanted to wish everyone a wonderful 4Th! We are leaving in the morning for 4 days on a little vacation. Just to get away from the everyday schedule, appointments & therapy! The two older girls are so excited, Joanna on the other hand has no idea, but I sure hope she enjoys it. We are really concerned that is going to be a complete over load on her sensory sysytem. Wish us lots of luck!! I will post as soon as we get home and I promise to show you guys a load of new pictures. XOXO
JUNE 30, 2006
Hello All! Sorry it has been so long since I have updated. I tell you what since school has been out we have been super super busy! The girls have been wanting to go somewhere or have someone over every single day, what happen to resting as a family. LOL They dont know what rest means. Joanna had another great week at aquatic therapy. I am still just shocked at how well she has done for Dana. I am so proud of her. She goes again tomorrow. We are planning on taking a little vacation the first of July. Just to get away for a few days with the girls. I hope everyone is having a great week and I will post again soon.
June 18, 2006
Hello! To all the Father's Out there I would like to say "Happy Father's Day"!...Joanna is starting to get back to her old self again. Therapy on thursday was alittle hard. She has become rather weak from her 5 day hospital stay. The therapist could'nt beleive how weak she was. She will get stronger as the day past! Brittany & Faith are doing great. Both glad school is out! Joe is working hard on Father's Day. I hate that he had to work but what can you do. Me & the girls are going to make his favorite; chocolate chip cookies and take them to the station! Hope everyone has a great day and I will post again soon!
JOANNA WAS ADMITTED JUNE 9, 2006 for a staph infection!
JUNE 12, 2006
Hello Everyone! We are finally home. Joanna was fever free for 24 hours so they discharged her today about 3p.m. Joanna had a acute staph (staphylococcal) infection in her bladder making her feel very sick. She received the antibiotic Rocephin at the Sentara emergency room Thursday night which caused extreme itching and hives all over. After being admitted to CHKD on friday she was given the antibiotic Cefotaxime which she was also allergic to this one causing the same symptons including what hey call read man syndrome ( Red man syndrome is an infusion-related reaction. It typically consists of pruritus, an erythematous rash that involves the face, neck, and upper torso. Less frequently, hypotension and angioedema can occur. Patients commonly complain of diffuse burning and itching and of generalized discomfort. They can rapidly become dizzy and agitated, and can develop headache, chills, fever, and paresthesia around the mouth.) Joanna ran low blood pressure about the whole time she was there. The 3rd antibiotic they gave her was called Vancomycin. Vancomycin is often used in intensive care units. It is the drug of choice for the treatment of infections due to methicillin-resistant staphylococc. Vancomycin is an alternative drug for serious staphylococcal and streptococcal infections when allergy precludes the use of penicillins and cephalosporins. Anyhow, Joanna is feeling much better and has come home on oral antibiotics and a neosporn wash for her bladder! Soon will be having allergy testing done on her. The kidney doctor recommends this so next time we know exactly what is safe to treat her with and what is not safe! That will be rather interesting to find out! Thanks to everyone who signed Joanna's guestbbok while she was in the hospital. That really means alot to us! Take care and I will post again soon!
June 8, 2006
Well today has been a bad day for little Joanna! Last night was pretty rough. She woke up at 5am burning up, I did get some tylenol in her. Anyhow she really felt terrible today so I called urology this am to let them know what was going on and they said that since she is still running a 102 fever they recommended having her seen to make sure nothing else was going on. The pediatrician didnt have anything available today so I took her into the Hospital ER about 2p.m. They placed her in the critical care unit just because of her history. The doctors decided that 24 hours isnt really long enough to get a urine culture in so they wanted to do some blood work to check her white blood count and bacteria level. Poor baby had a time getting blood drawn! The nurse was so sweet. I requested them take in in her left foot since she has no feeling there. She tried to get some blood but after 3 sticks she gave up. She said even though she didnt feel it she still hated to keep poking on here. She said she could tell that the left foot was defintely her IV foot, all the pin marks are there from previous draws. Anyhow she had someone else come in to try, and that just happen to be a great friend of ours; Josh! He got it in her arm the first try and she didnt even cry. After that was in the doctor went ahead and gave her a dose of rocefin! Its a strong antibiotic. Then once the blood work came back they would go from there. Her WBC was 14,100; which is alittle high. A normal person should be around 10,000, someone with an augmented bladder should run on a normal day about 12,000. So they were elevated but not way to much. One reason was because she started the cipro yesterday and that is pretty strong. Her uranalysis same back with 1+ bacteria which is also alittle high. And her blood work also showed signs of dehyration. So she gave here a round of fluids as well. Another concern I had was that her cycostomy stoma was leaking feces. Which is not normal. That has only happen twice in the past year! I ask the doctor about it tonight and she said I am not sure, you will have to go back to the doctor that did that! Is that the way to answer a question or what??? I swear she didnt even know what a cycostomy was. I truely hate taking her to hospital that arent familiar with Spina Bifida and the things that go along with it. Her nurse had never seen someone cath through the belly button. Anyhow, so before I left there I called the urologist that was on call and explained to him everything that was going on at the hospital. He ask her blood results and I told him! He said that because her culture was negative he was leaning more towards a intestinal virus! He said that all the results did come back as if she had an infection but the counts were what they range for a normal person not someone thats had a augmented bladder. An augmented bladder produces bacteria at the levels stated in her blood work. Maybe not quit that high, but can run that high if they have a virus. So he told me to push the fluids, continue the antibiotic and call tomorrow and see if the culture has grown anything since today! So we left it at that! The ER doctors were doing there job, but were not very knowledgeable about Joanna's situation. So anyhow after a ER visit of 8 hours we are back home giving tylenol and waiting till tomorrow to see what happens! He suggested Joanna return to the ER asap if she started to vomit or have fever chills. Wish us luck and I will post tomorrow!
June 7, 2006
Hi! It is 3:55p.m. here and we are just now getting home from Richmond. What a long day it was. We left the house at 8:30 am. and went to cariologist appointments first. We were so please with the visit. Dr. Moskowitz was certain that what he heard was not any different than a year ago. Which is great news. The valve has not done any changing yet! Still we are left with the same precautions as before. Brittany and Joanna must receive a round of antibotics prior to any bloody procedure. Which is usually dental work. When you have dental work you can get infection rather easy. When infection gets into your blood stream if goes to the weakest part of your body, which in their case is the heart! He doesn't need to see them back for 3 years unless we see anything concerning before that. Puberity is still our biggest concerned right now for both girls. Brittany is 8 and Joanna is just 3 so we have a while on that one. I hope anyways. After leaving MCV we went over to Dr. Winslow's office to have Joanna checked. The fever is still present today which now we know is from a kidney infection. He ran a urine sample and also sent off a culture, which usually takes about 48 hours to come back. This way we know exactly what type of bacteria is growing.Being that we flush Joanna's bladder twice daily with Gent the bacteria is evidently resistent to it. So he put her on a much stronger antibiotic, Cipro. He also did an ultrasound on her kidney's and he was quit please with them. They looked great! A year ago we couldnt of said that. This appointment was rather rewarding to us as parents. Knowing we did the right thing for Joanna going through everything she went through in July. WOW July will be the one year anniversary of such a big step for her and her independence. While we were their we also got to meet one of Dr. Winslow new partners. He is from New Orleans. Very nice man, he is the ONLY doctor in North America that treats patients of which his son has the same disability; Spina Bifida. I do beleive he said his son is in his 20's. Anyhow between Dr. Winslow and his partners and staff they make a wonderful practice that I would recommend to anyone. Take care and I will post as soon as I get that culture back!
June 5, 2006
Hello! Just thought I would give a quick update before I hit the bed. Joanna is on day 3 of a fever so tonight I called urology and spoke with the wonderful Dr. Winslow! I explained to him what was going on. The fever, leaking cycostomy, blood in the urine, backache & stomach pain. He said that a intestinal virus like we get can be very complicated for a little one like Joanna! Because Joanna's big bladder is now made up of her intestines and bowels; when she gets a stomach bug it can cause nasty urine because her bladder is now made up of those same things. Anyhow, her and Brittany have their cariology appointmens in the morning, which I was going to cancel but since Dr. Winslow wants to see her we mines well take her there first! He wants to take a look at her and check her urine and things! So please pray for good luck tomorrow for good echoes and help her to feel better! I will post again tomorrow night!
June 4, 2006
Hello All! Good news and bad! Faith cholesterol came back great! Thank goodness. One less thing I have to worry about! I have not gotten Brittany's back yet! Joanna started wirh a fever yesterday, and then today her cycostomy has been leaking. I have no clue what is going on with that! I called urology and they said her bowels could be backed up or she could have a virus going on... Time is going to tell. When she gets sick my mind starts going 90 miles an hour. You just never know what is going on or what is trying to brew. I worry so much about her. The shunt issue always freaks me out. I guess because we have never experienced a malfuction. I always worry about her vesticostomy and cycostomy going bad. I guess I just worry about everything! Not knowing what to expect has got to be my biggest worry of all! Anyhow please say alittle prayer for her tonight. Hope that she feels better in the morning. You can tell by the picture above she just feels bad. I will post again soon. Aquatic therapy was cancelled for tomorrow. I have also got to call and ok Joanna being in water that has Bromine vs. Chlorine. I know it is better for you rskin but not sure the effects on open wounds. Like her stomas. Anyhow I will post again soon!
P.S. Please take a minute and say alittle prayer for Joanna's Pediatricans Husband. He has taken very ill. Dr. Fuste has had to take a leave of absence from the office for a while. Things are not looking well right now. I beleive that love and pray can move mountains so lets move some for him.
June 1, 2006
Hello All! What a hot day! It has to be 90 degrees here. This morning was very busy! As soon as Joe got home from work we all got ready; dropped Faith off at school and headed to Suffolk for Joanna's first aquatic therapy session. Brittany stayed home from school today after going to the ER last night due to a viral throat infection. The doctor seemed to think it was at the end of it's course. So anyhow she got to go with us! The room the pool is in is beautiful. The artist did an amazing job. I just couldn't beleive the technology a pool could have. Camera to see your body underwater to watch yourself on the screen. The therapist even said for motivation they will put in the chid's favotite movie and when the child starts to walk on the treadmill which is in the pool the movie will start to play and if the child stops there movements the movie will stop! What a great modivator! Joanna went in the room this a.m. with her ears covered, fussing and very hesitant about what was going on today! She took right to Mrs. Dana and only took maybe 10 mintes to get completely in the water! I think this is going to be wonderful for her muscles and excellent for her sensory issues! Anyhow there is new pictures from today on the about me page! It may take a few minutes for the pictures to load.
I hope everyone has a great weekend and enjoys this warm weather! Joanna wants to be in her kiddie pool everyday! She is so funny. Joe also finished her bridge for her playground. She was having a hard time getting over the timber to get into the play area so Daddy decided to build a little bridge. Here's a picture of that! Take care!
May 24, 2006
Hello All! Joanna was in complete shock yesterday! Brittany & Faith had to have their well checks and Joanna was shocked that she didnt have to be checked! Well Faith's cholesterol was out of this world. Her total TC was 222 and her TRg was 358. That is terrible. We are going to take her for bloodwork the beginning of the week and the doctor said if they get another bad result she is going to have to go to a specialist at Children's Hospital! Brittany's Trg were alittle elevated so she is going to have her's rechecked again! Both are going to have a recheck after they are fasting! Brittany's checkup over all went pretty good. Doctor was able to hear alittle more thickening in the aoric vavle this time. Both Brittany & Faith will have another ecocardiogram done the first week in June! Hopefully thing will not look much different! Below is some information about Brittany & Joanna's defects:
The normal aortic valve, as shown in the drawing, has three leaflets (flaps, cusps) that move flexibly, opening and closing to control the flow of blood into the aorta from the left ventricle of the heart as it beats. When the cusps come together as the valve closes, the shape is that of a trisected circle.
In contrast, a BAV has only two leaflets, also shown in the diagram on the left. It is sometimes described as resembling the mouth of a fish as it opens and closes. Depending on the degree of malformation and associated malfunction, blood flowing through the valve may make an abnormal sound, called a murmur. While some bicuspid aortic valves are silent, the detection of a murmur may be the first indication of abnormality of the aortic valve.
Over time a bicuspid valve may lose its ability to open widely, close properly or both. As previously described, a murmur may develop. Regardless of how the valve is failing, it should be monitored and a surgical solution planned appropriately before any lasting damage is done to the heart.
Bicuspid Aortic Valve Insufficiency (Regurgitation)
If the cusps (leaflets) of the valve fail to come together tightly when closing, blood leaks back into the heart. Either of two terms may be used to describe this leakage: insufficiency or regurgitation. Depending on its severity, this condition may place a strain on the heart, which is forced to re-pump the additional backflow of blood (overloaded left ventricle). In time an overloaded ventricle may have permanent stretching of the muscle fibers, and even if corrective surgery is done may not fully regain its pumping efficiency.
Bicuspid Aortic Valve Stenosis
Some bicuspid aortic valves lose the ability to open widely and often have calcium deposits on the cusps. This condition is called stenosis. As the valve opening becomes narrower, the heart must work harder to force blood through the small opening. This stresses the heart, and with time the wall of the left ventricle may thicken (over pressurized heart). As a result the heart is unable to relax during diastole, and the heart muscle becomes very stiff and inefficient (diastolic dysfunction).
May 19, 2006
Hello! How is everyone doing?? We are good. I finally got a call from the aquatic therapy and Joanna has her OT evaluation this thursday. So after that I would imagine services will start soon. I am so excited about that. I think once we get her in the water and over that fear she will really enjoy it.
I took a big step this week and registered Joanna for pre-school. I sure hope I made the right decision. It will only be Tues & Thurs from 9a.m- noon! She will start in Septemeber like the regular schhol. I am just so nervous. They also do gymnastics on thrudays and the therapist said that part is out for Joanna. To many risks for her. Anyhow I always said I would wait till she turned 4 but everyone seems to think she needs the social skills and would love it! We will see.
May 14, 2006
The beauty of a woman
Is not in the clothes she wears,
The figure that she carries,
Or the way she combs her hair.
The beauty of a woman
must be seen from in her eyes,
Because that is the doorway to her heart,
the place where love resides.
The beauty of a woman
is not in a facial mole,
But true beauty in a woman
Is reflected in her soul.
It is the caring that she lovingly gives,
The passion that she shows,
And the beauty of a woman
With passing years-only grows!
You don't stop laughing because you grow old;
you grow old because you stop laughing
Happy Mothers Day!
Love,
Lorie S.
May 12, 2006
Hey! Therapy went great again today! Joanna has done so good on her squats!!! Great Job JoJo! Hope everyone has a great mothers day! My gift was family pictures. Visit the My Family Page and check them out! Have a great weekend!
HAPPY MOTHER'S DAY MOM!! I LOVE YOU!
May 8, 2006
Hey! The weekend was extremely busy! Brittany's Birthday is Tomorrow!! HAPPY 8th BIRTHDAY BRITTANY! WOW! ........Aquatic therapy called me friday and Joanna is the 3rd on the waiting list, so she should start within 2 weeks. I am so excited about that! Another neat thing is, she said alot of times they let the siblings get into the pool to help calm the other. I thought that was very neat! I have a feeling Joanna is going to be scared out of her mind. We were so proud of her on saturday. She got up into the standing position without crawling over to something to pull up on. Kathy is going to be so excited about that! We have been telling her over and over again "put your hand on one knee and push yourself up" She finally got it! Bless her heart she went all over the house showing us how she could get up. So Proud Of Herself. I hope her strides continue to be strong. She is working so hard at therapy on fridays! I mean she really gets a workout and loves JUST about every second of it! Have a great week and I will post again soon! Please continue to visit all the sites Joanna has been featured on. The love you have given her can sure be spread to other little ones in need! We thank everyone that has signed her guestbook! Your thoughts and prayers are a blessing!
May 3, 2006
Hello All! Joanna is doing prettty good! Poor thing acts like she is trying to come down with a cold. I hope not! I still havent heard back from aquatic therapy. I am going to give them a call tomorrow and see what is going on! She needs to get back into that OT bad. Her sensory issues need help! Brittany went to the doctor yesterday! She had a sinus infection again, ear infection and wheezing. The doctor put her on an antibiotic for 3 weeks. Goodness! We started some yogurt to help with the upset stomach from all the antibiotics. Faith had a great birthday..........Me and Joanna have been getting up in the mornings and walking. LOL she rides in her stroller. I am trying to loose some wait. That in slim fast, I hope I loose alittle! I will post again soon!
May 1, 2006
HAPPY BIRTHDAY TO FAITH! 5 YEARS OLD TODAY! BOY TIME FLYS!
Joanna is doing good. Still waiting to hear from the aquatic therapy for her appointment. Hopefully that will start soon. I got a jogging stroller yesterday that accomadates Joanna's needs alittle better! Please continue to pray that her health will remain good. I will post again soon! Thanks for everything!
April 20, 2006
Today was beautiful! We took the girls to the Portsmouth Children's Museum and they had a blast! I added some new pictures to Joanna's Misc Pics page! Check them out! I will post again soon!
April 14, 2006
Hello! Joanna's therapy went great again today! I hope everyone has a great weekend! Happy Easter to you and your family! God Bless You All! I will post again soon!
April 12, 2006
Hello! Sorry it's been a bit since I posted. Joanna is doing good! She had a rehab appointment Monday and the doctor is still concerned about her fine motor skills and speech. We have put in a request for occupational therapy, but the waiting list's around here are crazy. Anyhow hopefully aquatic therapy will call this week to get her in to start! They can also treat her for occupational, but I'm not sure how much they can do in the water for that! Anyhow, other than those issues the doctor thinks Joanna is doing very well!.....Me on the other hand feel like crap today. I have had this chest cold for over a week and today my chest is killing me. I just feel like I can't get a good breath in.........Brittany and Faith are doing great. Faith's asthma is starting to act up just a little but not to bad. Brittany got her new school picture in! Sooooo Cute! My big girl! Anyhow I will post again soon!
April 5, 2006
Hello! Today has been a great day! Joanna received her quilt from Love Quilts today. www.lovequilts.com. Check out Misc Pics page to see how beautiful it is.... Joanna had her 3 year old checkup today and everything looks good. She was in the 5th % for her height and 25% for her weight. This is normal for kids with spina bifida. The doctor wants Joanna to start some aquatic therapy. I am going to check into that!
~Lorie~
April 2, 2006
Joanna celebrated her 3rd birthday yesterday, and it turned out wonderful! She has been blessed over the past month being sick free. She continues to struggle with her gross motor skills from being unable to feel her feet & her hip strenght. Weekly therapy still remains. Joanna still struggles with sensory integration dysfunction daily. Her shunt still isn't working properly so we just take that day by day!
She received her wish from The Make A Wish Foundation this past weekend. A super duper playground. Thanks to to all how made that happen.
March 31, 2006
Hello All! Joanna is loving her new playground! We have been outside everyday, even if it was freezing. There are stills some finishing touches that need to be done. Hopefully Joe will get to then this weekend. Joanna will be 3 years old the 3rd, so tomorrow we are having her birthday party! A wonderful celebration. She has brought us 3 years of love and joy!
Joanna is on a poet's website for the month of April. It is www.todays-woman.net. Check it out! Have a great weekend!
~Lorie~
March 24, 2006
We are so excited!!!! Make A Wish Starts first thing in the morning. Rain or Shine!! I sure hope it doesn't rain. We have been waiting for this day, so I hope everything works out well.
Joanna is doing great! Getting so anxious about swinging. She had a breakdown tonight over losing her pacifier. I had to search and search the house until I found it. She just cried and said "I LOST IT, I LOST IT". Poor baby! That is her comfort zone. Anyways.....I will post pics as soon as I can!
~Lorie~
March 23, 2006
Hey Everyone! Bare with me as I am working on this new website! Please feel free to sign Joanna's new guestbook! All past entries were printed for her scrap book! Thanks Again!
March 20, 2006
Hello! Hope everyone had a great weekend! Brittany is doing much better. I sent her back to school today. Joanna is been feeling GREAT! Thank Goodness. I Hope this continue's. Make A Wish and loads of our family and friends will be here bright and early Saturday morning to start construction! I will be posting pictures that night to show you guys. Have a good day, & enjoy the first day of spring! I will post again tomorrow!
~Lorie~
March 17, 2005
Hello Again! How is everyone tonight?? Make A Wish called tonight and the playground has found it's way to Tenn.; so it should arrive in Va soon! We are so excited..... Joe toke Brittany to the emergency room. She has had a sore throat since Monday and tonight her fever spiked so he took her in. I was going to take her but she wanted her Daddy! I thought that was sweet. She has become a bit of a Daddy's girl lately. Anyhow, she has strep throat! Poor baby, she feels like crap! I will keep everyone updated over the weekend! Take Care!
March 17, 2006
Happy St. Patrick's Day!
Hello All! We are doing great! Joanna is all better now!! Therapy today went well; Cathie sent her braces off to be fixed. Adding some support and toe strap for her. Faith saw dermatology yesterday and come to find out she does not have excema. She has Keratosis Pilaris. A skin disease that you are born with. It is inheriated. Click on the word to get more info........ We are counting down the days for Make A Wish to start and Joanna's birthday. I can't beleive she will be 3 years old in a couple weeks! Anyhow hope you all have a great weekend, I will post again this weekend!
March 12, 2006
Hello Again! Just wanted to wish everyone a wonderful, relaxing Sunday! I would also like to Thank Lizabeth Stavenski-Bell for continously signing Joanna's guestbook! Your entries are so sweet! I know when I see your name alittle sunshine is flying our way! Everyones guestbook entires are wonderful. I print each and everyone of them for Joanna's scrapbook!........
Last but not least I would like to Wish Gavin, Joanna's Good Friend A Very Very Happy 3rd Birthday! We Love You & This Scooby's For You!!
March 11, 2006
Hello Everyone! It is absouletly beautiful outside today! Joanna is finally feeling her old self again! Yesterday afternoon she started to perk up alittle and start playing. This morning she is a bright little sunshine. Thank Goodness.....Today we are going to my parents house for my Dad's birthday. He is 59 today. Hope everyone has a great weekend and I will post again soon! Take Care!
HAPPY 59th BIRTHDAY DAD!!! WE LOVE YOU!!!
March 8, 2005
Hello Again! Just wanted to drop a line before I hit the bed. Joanna is running a fever again. I just don't know what is going on. No symptoms yet! Only thing I have noticed over the last couple of days is gaging. Sometimes due to the * Chiari Malformation in the brain can cause gag reflux. I spoke with the doctor tonight and she said that if she still has a fever in the morning than I need to bring her in. Again tomorrow Make A Wish is coming out to start some little things in the back yard. They brought her sand table today and when I took her out there she just cried and cried. Thats just one of those things. Joanna gets very scared and nervous about new things. She went with me to school yesterday to eat lunch with Brittany, well all the little girls in the class were so excited to see her. They started crowding around her and she started to gag. Bless her heart, her senses just don't know how to flush those things out. Anyhow, I will post again tomorrow night. Hopefully we will wake up fever free!
March 7, 2006
Hello! It's 2:30 in the morning, I just got done working on this website. I added pictures of Joanna when she was born in the NICU! What I had to do to get them on here was the hard part. After tonight I need to take a couple days off. LOL... Brittany & Faith are doing great. Brit got a wonderful progress report today. I am so proud of her. This year has been a tough one for her, but she is hangin gin there!Joanna is finally getting back to herself again after that nasty flu. She has been eatting well and starting to play alot more. Thank Goodness! So far everyone else is flu free. We will keep are fingers crossed on that one. This week will be the normal busy one. Make A Wish is coming out Thursday & Friday for some yard preperation for the playground. We are pretty excited about this. Construction is stilled planned for the 25th. I will update again soon.
~Lorie~
March 4, 2006
Hello! Just wanted to drop a quick line! Hope you get a chance to check out the new page I added on here. *New Pics* page. Joe got his new fire gear in yesterday and the girls had to try it out. Just some silly pictures to look at! Anyhow, Joanna is feeling better. She still has the runs unfortunately. It has caused her a terrible diaper rash. I am going to try an oatmel soak tonight to help her with the burning. I am using wet paper towels to clean her off when I change her and diaper cream. It just isn't helping! I started with the throwing up thursday night and running to the bathroom all day yesterday. Today I have just felt yucky in the tummy. Hopefully this will all soon pass.
I got an email from Make A Wish yesterday inviting Joanna to the Arena Racing at the Coliseum to go up in the stands with the car drivers and use their helmets to help raise money for Make A Wish. I was honored by the invite and think it is such a neat thing, but due to Joanna's sensory problems it would be entirely to loud for her to handle. It would be very overwhelming to her. Maybe next time she would be old enough to understand she could wear ear plugs.
Have A Great Saturday Night! I'll Post Again Soon!
~Lorie~
March 2, 2006
Hello Again! Joanna ran a high fever through out last night. I called the doctor and she was seen in the office today at 10a.m. They tested Joanna for the flu. I never even knew they could test for that. The nurse swabbed her nose and then they have to wait about ten minutes for a positive result. Well Joanna's came back positive in about 1 minute! Poor baby. She lost 3/4 pound in one day! The pediatrician put her on Tamiflu. Joanna has already thrown up the first dose. I waited a hour and tried it again and she threw that right up to. So hopefully she will hold it down tonight! She was alittle dehydrated, but not enough yet to give IV fluids. She wants me to try to push the liquids and protein. I will post again tomorrow with an update! Have a great night!
March 1, 2006
Hello! Joanna did pretty good at the dentist, they did not clean her teeth because they didnt want to scare her. Joanna's two front teeth are rotting due to the mass amount of antibiotics. We go back March 16 for him to seal them. Hopefully this will slow down the process. If that doesnt work then he said he will have to do something else!
I got back Joanna's urine culture yesterday and everything looks great! I was sooo glad. Then after she is finally feeling herself again, she woke up this morning at 6a.m. with 102.7 fever and diarrhea. Poor baby! I spoke with the doctor and she seems to think it is just a virus. She said if her temperature goes over 103 then she will need to be seen inb the ER. I hope this soon passes. I will keep you updated! Have a great day!
~Lorie~
February 26, 2006
Hello Everyone! Well the weekend is over, back to the grind tomorrow! Just wanted to fill you in alittle. Joanna had a great therapy session again friday! Therapist is still concerned about her left leg bowing out and her foot turning in. We are hoping she can find a othro that will try to adjust her dafo's instead of having to order a new pair. Braces can be a hard fit, especially when you have such little ankles. We had thought about going with a taller brace but the therapist is concerned that it could cause atrophy. When muscles are inclosed it cause the muscle to become very weak and small due to unworking them! She is also considering a night brace for her left leg to help keep her muscles stretched out behind her knee. They are very tight due to lack of movement. Anyhow we shall she. It will all work it's way out one way or another!
Friday I dropped off another urine culture to recheck since we stopped the antibiotics. They were making her so sick. Hopefully she got enough to knock that staph infection out. To be honest with you, when I cathed her today her urine looked remarkable. The best it's looked in a couple months. Hopefully it will come back ok. Tomorrow I have to take all three girls to the dentist. Routine cleaning for Brittany & Faith. Joanna's first dentist visit. Her front teeth defintely need some attention! They are so worn and deteriated, from all the antibiotic. Now that she has the same heart defect as Brittany they have to take antibiotic one hour before their dental appointment, this prevents infection from going to the blood stream. Anytime you get an infection it goes to the weakest part of your body! Well I will close for now, but I will update again soon.
P.S. Make A Wish Project is suppose to start March 25th. They will be breaking ground on the playground. We are so excited. Joanna is going to love it!
February 17, 2006
Just wanted to drop aline and give a new update! Joanna is still feeling really crappy from the infection. Hopefully she will start to feel better in the next few days! Faith has been struggling with her eczema. I made her a dermatology appointment today! Anyhow have a great weekend and I will post again soon!
Happy Valentines Day
February 14, 2006
Just wanted to say "Hello & Happy Valentine's Day!" Joanna's urine culture came back today and she has a staph infection. (staphylococcus) Joanna's Ped's doctor called the kidney doctor and they just changed her antibiotic to Seproflaxin. She was on Bractrim but the infection is resistant to Gentamicin, Pencillin, Oxicillin and Trimeth something! Anyhow hopefully this will get her feeling all better! She is alittle better just not back to herself yet. Brittany and Faith were so excited about Valentine's Day. Anxious to go to school this morning. I have to tell you kids have a mind of their own. I went yesterday to walmart to buy these little sweet tart candy's to tape to their valentine's cards and Brittany wanted to tape her's all by herself, so I let her while I helped Faith. Meanwhile their Nanny stopped by and I gave her the rest of the candy to put in her candy jar at home. Well this morning when Brittany got up she said "Mom I accidently forgot to put candy on the boys cards", I just laughed...especially when she neatly had all the boys cards in one bag and the girls in another. The bad thing was I had given the remaining candy to Nanny, so poor thing had to take off all the candy on the girls cards. Anyways, I just thought that was awful cute. Have a great week!
February 6, 2006
Today was a busy day! Joanna has been alittle crabby the last few days. We had therapy appt today at 9a.m. I think we may put Joanna back into the taller dafo's (braces) her left foot still turn out terrible and he leg bows a little bit. Therapist thinks she may need a little more support. We are hoping to get by with a short brace on the right foot. We shall see....... Then I had some errands to run. When we came home I cathed her and her urine just didn't look good, so I took the sample to the doctor and sure enough she has a bladder infection. This explains her feeling bad. This is usually what comes out of her feeling bad. Because Joanna's bladder was augmented with part of her bowel it naturally produces mucus, which can lead to bacteria. Anyhow this is one of the things we have to deal with. It is definitely better than losing two kidneys to severe reflux.
February 3, 2006
Hello! Joanna is doing good. These past two weeks she has had some great therapy sessions! She hasn't cried at all. Cathie said today that she has pushed Joanna a little harder over the past couple of weeks and she has done fine with it. She was going at 9am. On Fridays until a few weeks ago. We rescheduled at 11:30am. And Joanna actually did much better at this time. When she goes at 9am. She is the only child there at that time. We think she really likes it better when their are other kids there. I think she likes to watch them. Maybe showoff for them! Anyhow I am so proud of her.
By the way Joanna is February's featured child on the Hugs & Hope web site. We are pretty excited about that to! People are so kind and caring. If I could hug everyone that has put a little sunshine in Joanna's life I would!
January 13, 2006
Joanna saw Urology today for a surgery followup. The doctor was also impressed with the ultrasound results. He said that now we just need to watch for changes in vestocostomy & cycostomy. The procedures she had are NOT maintance free. We need to watch for pain when cathing, which can indicate kidney stones. Kidney stones are common in a augmented bladder. He also told me to restart her vitamins. She needs those to build her strenght. He said that she may just not be use to formed stools. Without the iron its kinda runny. He said to not worry if she gets constipated; just put some mineral oil in her cycostomy. He said its not good to give it by mouth like the old days because it absorbs all the water through the GI trac and not the vitamins. If you give it directly through the cycostomy it bypasses the GI trac so the child stills receives its nutrients. Anyhow we are soooo happy about the good news. It is nice for a change to have something go in Joanna's favor!
January 12, 2006
GREAT NEWS FROM THE DOCTOR TODAY!
We received wonderful news today! Joanna's renal Ultrasound looked great. Her kidney's weren't dilated anymore, no reflux present and great texture. May sound like a simple visit to some, but today was a big day for us as parents. Knowing that putting her through major surgery was definitely worth it. It's hard as a parent to sometimes grasp the decisions we make to give our children the best quality of life. Always in the back of your mind you wonder, "Did I do the right thing?" "What should I have done differently?" As Joanna's mommy I have tried my best to make all the right decision's. So today made me feel like we took a big step in the right direction of making our baby girl better.
January 10, 2006
Hey! Hope everyone had a great New Year! We didn't do to much for new year's eve. Just hung out at the house! The girl's went to their Nanny's house for their own New Year's Eve party. Joanna stayed till about 10p.m. She couldn't make it any later. That's late for her. She has been doing good besides alittle bit of constipation due to her viatimins. She has been anemic since she was born. She has been taking the poly visol drops since she was born, but when she has her surgery we had to stop them for the 2 weeks we were in the hospital and so now she wont dare take them. The liquid drops are pretty nasty. So I bought her some Flinestone vitamins and she refused them also. Finally about 2 weeks ago I got her to eat one and she liked it. Well they made her sooo constipated that when I flushed her cycostomy she would cry of pain. So anyhow she has been off them a week and her bowel flushing is turning back to normal. Thank Goodness. She was starting to hate potty time.
She see's Dr. Restaino thursday for her kidney ultrasound. I am pretty anxious to see what that looks like. Hopefully good! Keep your fingers crossed! I will post thurday night with the ultrasound results. Lorie
December 30, 2005
Hello All! Christmas was great for all of us! What about you? Joanna was so excited.She actually opened all her presents by herself. Her favorite gift was definitely her new Dora dolls. She has fell in love with Dora The Explorer! Dora everything. She recently graduated to a toddler bed, which is Dora with Dora sheets and blankets. By the way she also graduated to a big girl cup. Thank goodness. I was so tired of those dang bottles. The next step will be getting rid of that binky. Good luck on that one. Hopefully it will find itself in the trash can soon.
Anyhow! Joanna has being doing good lately. She hasn't had therapy for the past two weeks due to the holidays. Therapist took a well needed vacation. So next week may be alittle hard on her. Joanna can get out of a routine real quick. You have to stay on top of things so she follows through. Next Friday will probably be a crying session. We shall see.Joanna has a renal ultrasound January 12th to check and see how her kidney's are looking since the surgery. Hopefully that will look a 100% better. I sure hope. The kidney doctor at CHKD will see her following the test!
Take care and have a great weekend!
December 18, 2005
Well it's one week before Christmas! I sure hope my kids start feeling better before Santa. Joanna is still not feeling all that great... weather it's the infection or she is coming down with something. I'll just wait and see. Faith's ashtma is kicking her tail. I have had her on the neb machine with albuterol and pulmicort going on two weeks and she sounds terrible. I am going to run her to port warwick er as soon as my mom gets here to watch Brit & Jojo. Brittany is the only one that feels ok. Just alittle cough!
Merry Christmas To Each And Everyone One Of You! I would like to thank several people for sending Joanna and the girls Christmas presents in the mail. It's amazing how someone you don't even know reaches out to you! The girls were so excited! God Bless You & Your Families!
December 12, 2005
Hello! How are you? I am actually sick with a sore throat, headache, cough and runny nose. LOL What a terrible hospital stay! We just got home today around noon! I am so tired. Joanna has a kidney infection with 103 fever, so she had to be admitted for IV antibiotics. She is feeling so much better. Thank goodness!! She is still alittle pale, but defintely better. She was alittle upset yesterday because she didnt get to go the brunch with Santa. We go every year. Joe stayed with her at the hospital and I drove back home and took the girls. I promised they would get to go. Needless to say I think we are all beat! I will post again soon! Thanks for all the prayers, Lorie
December 10, 2005
Just wanted to drop a line and say that we are on our way to St. Mary's ER in Richmond. Joanna has been on a strong antibiotic since the 4th for a bladder infection, but tonight she started with 201 fever, Urology seems to think the uti has turned into a kidney infection, or something else is going on! They will possible need to treat the infection with iv antibiotics. Please say alittle pray tonight that there is nothing major going on!
With Love, Lorie
December 10, 2005
Hello! Is everyone ready for christmas? I am as ready as I am going to get! Joanna has felt yucky all week due to another bladder infection. We are now on the antibiotic wash for her bladder daily verus the Septra by mouth at bedtime. I guess the septra just isnt strong enough. The antibiotic Gent is usually fairly strong. Today will be day 5 on it and she still isnt having the best urine. I am going to give it till Monday. if it's not better I am going to call the doc....Between Joanna feeling bad and poor Faith's asthma it has been a crazy week. Faith has just been weazing and coughing terrible. She just can't take that cold air. Since her inhaler's weren't doing the trick we started using the steriod & albuterol in the neb machine. It seems to be heping better. Thank goodness Brittany isn't sick. Not yet anyways.
Well I hope you have a great weekend! Santa will be here soon..... We are going to a brunch with Santa Sunday. I am curious how Joanna will due with that! Probably freak out. The whole noise thing surely gets the best of her.Very sensitive.
Last but not least I know alittle girl that needs everyone pray's right now. Only two years old, she is battling for her life. Diagnosed with cancer several months ago. We got bad news the other day that she wasn't doing very well at all. Please take a minute out of you day and say a little pray for Jenna & her family. Pray that God will put her under his wing and make her feel better, give her mommy strenght to make it through another day of watching her little girl suffer. Just give them the strenght to stay strong and help through this difficult time...... Eveyone should stop for a second today and remember Jenna and hug your babies. Life is to short to let the little things go by! When you think you have it bad, just remember Jenna! JENNA STAY STRONG SWEETIE! YOU HAVE ALOT OF PEOPLE THAT ARE PRAYING THAT YOU FEEL BETTER SOON! WE LOVE YA!
I will post again soon!
SATURDAY, NOVEMBER 26, 2005 12:40 PM, CST
TODAY WE GOT A VISIT FROM MAKE A WISH! What a group of truly amazing people. Joanna took to them like she had known them forever. It was definetly hard not to. They were so sweet and caring. She walked them around the house showing them her room, her sisters room and even sat in the floor and played with them. They showered her with gifts, including her own crown and wand!! It was a great pleasure to meet them. Joanna even ended the morning visit with a kiss for Dave. After a great morning of playing and questioning they came to the conclusion that Joanna wishes for a super duper playground . Joanna loves outside the most, and it is very difficult for her to enjoy it at home or at playgrounds due to the safety issues from her disabilities! So now we wait and hear from them again! I sure hope it is accompanied by the group that came out today. I would love to spend the wish day with them! I will post again soon! XOXO Lorie (Joanna's Mommy)
NOVEMBER 21, 2005
I just wanted to write and share some very exciting news for Joanna and our family! What happened yesterday was truly god sent! I received a call sunday afternoon from The Make A Wish Foundation. Yes the real Make A Wish Foundation. I couldn't believe it either. When that wonderful lady on the other end of the line said "Mrs. Sibert, this is Make A Wish Foundation and I just wanted to call you and tell you that your little girl Joanna will be granted a wish from our foundation. Soon you will be hearing from the Make A Wish Team that will come to your home and start her dream project"
Anyhow I just wanted to share my joy with all of you! I called on Tuesday to the foundation out of curiosity. They faxed her doctor paper work that had to verify that Joanna has a life threatening illness. And Sunday I received the call. This goes to show you love can move mountains!
My heart literally felt like it hit the floor. The tears started to roll down my cheeks when I told this lady what this meant to our family. People don't realize that not only was Joanna born with Spina Bifida. Our family was born into Spina Bifda. Such a different lifestyle we have learned to live. But when I look into Joanna's big beautiful blue eyes my heart melts with happiness. She has brought so much joy and love into out hearts. Such a little girl has been through sooo much! Through her struggles with life and all the everyday things we take for granted, it has been hard as parents to watch your child hurt from pain, and cry from fear of the unknown. But there is two other little girls that are babies to and have had a very difficult time dealing with Joanna's struggles. Brittany & Faith. They have stayed so strong for their little sister, when I know deep down their hearts ache from the sadness we have had to go through the past 2 and half years. Not only does Joanna deserved this granted wish, her two sister's will tag team right beside her in the glory. Something to make them all three smile with pure happiness! Because Joanna is to young to realize what exactly a wish is and the meaning behind it, we as parent's have sat down and truly thought about what Joanna would love to have. Yes of course most kids would love to go spend 7 days at Walt Disney World, but for Joanna that would be a week of misery. Due to her sensory issues Walt Disney World would be entirely to much for her to handle. So we have decided to wish for a privacy fence with a super duper playground. Customized for Joanna! We have visited many many parks and playground around here and they just weren't built for kids with disabilities. It is heart breaking when you take them to the playground and she has to set back and watch all the kids run around and have fun. Only thing she can do is the baby swings. The slide steps are to tall, the slides don't have high enough sides etc. The privacy fence will help her with the sensory and sight issues. The old saying is out of sight out of mind. What she cant see around her, cant scare her. Brittany and Faith will also love this wish. They to will get to pick something from the pot.Anyhow I just wanted to share my joy with all of you! I will post again soon!
NOVEMBER 11, 2005
Hello! WE GOT GREAT NEWS! Neurology wants to wait alittle while longer before they operate on Joanna's shunt! He still seems to think that it will malfunction sooner than later! He said the problem with slit shunt syndrome is that the brain gets really stiff do to the lack of fluid. If it is left like that for to long it could be very dangerous. But because her's has only been like that for about 6 months he wants to continue to wait it out. He said we will defintely know when she develops a syndrome from it. Thanks for all your prays and thought!
She started her new PT today! Great woman. She will defintely give Joanna a work out. She is a super sweet lady. She pushes Joanna to atleast try it once. When we left therapy today Joanna was so proud of her self. She cried near about the whole session but left with a smile. It's hard work, but will defintely pay off one day! I will post again soon! Lorie
The evaluation of a possible shunt malfunction should include an imaging study of the brain (most commonly a CT scan or, for children under 1 year, a head ultrasound). Although MRI scans can also show a shunt malfunction, they generally are not necessary and are more expensive and may require sedation or anesthesia. An increase in the size of the ventricles is consistent with a shunt malfunction. It is vital to understand, however, that between 5 and 15 percent of people with spina bifida and shunt malfunction may have subtle or even no visible change in the size of the ventricles. At the extreme, some people with shunted hydrocephalus can develop the slit (or stiff) ventricle syndrome. In these people over-drainage of CSF leads to very small (or slit) ventricles; it is thought that the walls of the ventricles temporarily block the ventricular shunt catheter leading to repeated episodes of temporary shunt malfunction without any visible increase in the size of the ventricles. Families and health care providers must therefore pay particular attention to the patient’s symptoms, particularly if they are similar to those that were present with previous shunt malfunctions.
Shunt infection is the other major complication of shunt operations. On average, about 5-10 percent of people will develop a shunt infection following each shunt operation; shunt infection rates are higher in babies than in older children and adults. Seventy percent of shunt infections appear within the first two months after a shunt operation, and 80 percent develop within 6 months. Skin bacteria (Staphylococcus epidermidis) are the most common types of shunt infection. Half of people with shunt infections present with symptoms of shunt malfunction. Additional problems may include fever or neck stiffness; pain, tenderness, redness, or drainage from the shunt incisions or tract; or abdominal pain. The diagnosis can be confirmed by performing a shunt tap — inserting a small needle into the valve or a tapping chamber of the shunt and withdrawing CSF for study.
Infections are generally treated both with antibiotics and with removal and replacement of the shunt system. There are two approaches to treatment. In the first, the shunt is removed and a temporary external drainage tube placed at the same time as antibiotic treatment is introduced, the temporary tube is then removed and a new shunt is re-inserted at the end of antibiotic treatment. This approach almost always eliminates the infection, but requires two operations. The second approach (assuming that the shunt is working) is to keep the infected shunt in place until the end of the antibiotic treatment, then remove and replace the infected shunt with a new one in a single operation. Although requiring fewer operations, this treatment is unfortunately less successful in treating the infection.
OCTOBER 27, 2005
Hello All! My household is finally over the sickness. Thank goodness. It stinks when all three of them are feeling bad. Things are back to normal.
We go tomorrow morning to meet Joanna's new physical therapist. She will also receive a new evaluation for PT. We already know it is a definate needed thing, but Joanna is new to this therapist so she is going to set Joanna some new gross motor skill goals. I am pretty siked about meeting her. Remember to wish us luck for thursday. Joanna will be put to sleep to have her shunt series and CT scan. Following the testing we will meet with her wonderful neurologist. I will update next weekend to fill you in on his plans. Take care and have a great weekend! Lorie
OCTOBER 20, 2005
Hello All! This past week has been quit a mess. All three of the girl's have been sick. Brittany with Bronchitis, Faith with asthma and Joanna has had Bronchitis and also been fighting a bladder infection. I got her into the pediatrician Monday morning and they first thought she had pneumonia because of the fever lasting over a week. We had been to the ER on the Saturday before and they said she had a virus because her chest x ray was normal. Anyhow she had continued to get worst so I took her in on Monday. She was wheezing quit a bit so they gave her a neb treatment with a steroid. Boy that helped. The doctor was going to have some blood work done to see why she has the fever, but she decided to check her urine just incase. I had no clue. Wow thats a first. I am usually on top of the infections, but it went right by me. I felt horrible for not knowing. The only thing I had noticed was a decrease in her urine output, but I thought that was from no drinking as much since she was sick. The pediatrician put her on omnicef for 10 days. I followed up with urology that next day and he wanted to treat the infection differently. He has me injecting antibiotics directly into her bladder! I must say that today has been one of the better days. She is beginning to feel better! Brittany & Faith are perking back up to. Thank goodness. It stinks when 1 of them is sick, but when all of them are sick it is terrible. Boy have I had some sleepless night lately. Anyhow I just wanted to post a little something. I think I am going to hit the bed a little early tonight! Take Care! LORIE
OCTOBER 14, 2005
Hello all! Sorry it has been awhile since my last update. Joanna is doing well. We just had another speech evaluation. She is still delayed in her expressive speech. No worry's on my part. She has come along way! She is alittle shy so when she is at speech she tends to be quite. At home is is a total different story. She chatters away. We will continue to see speech so her language and social skills improve. Right now we are still waiting to get back into physical therapy and also waiting for a new OT evauluation. We are alittle concerned with her being sooo over sensitive to new enviroments, and change. She doesn't tolerate noise at all unless she is very use to it. November is our next step as far as up coming surgeries. She meets nuero surgery November 3rd for shunt concerns. Then we will go from there! Hope eveyone is doing well, please continue to post on her site. It brings me much happiness to see that people care! XOXO Lorie
SEPTEMBER 24, 2005
Hello All! Hope everyone is having a good weekend. Joanna is doing well. We saw urology yesterday and everything is looking good. A big part of Joanna's surgery is her independence. Since the surgery I have been working on putting Joanna in underwear. I have been cathing her every 4 hrs since she came home. Around the 3rd hour she will begin to wet her underwear. So urology wants me to now cath every 3 hours. He doesn't want her bladder under pressure. He wants it relaxed. Give it a chance to grow and expand. This doesn't happen overnight. So we are going to try cathing every three hours and hopefully she will sucessfully be in underwear. WOW something I never thought I would see. Alot of children with Spina Bifida are in diapers their whole lifes. Thanks to a remarkable urologist Dr. Boyd Winslow he has given Joanna a life of independence!! I can't thank this man enough. He holds a very special place in our hearts for what he has done for Joanna and other children all over the world. He is a doctor that does the gift of healing. He flies children to the U.S from many different countires to operated on them. FOR FREE! Recently he operated on alittle girl who had double everything from the waist down. He is just amazing.
Please take time today, tomorrow and always to remember SPINA BIFIDA AWARENESS. Pass Joanna's story on to other's who could maybe learn about Spina Bifida!! www.chkd.org
SEPTEMBER 12, 2005
Hello! I am sorry it has been so long since I updated her site. We have just been so busy. Getting ready for school to start. Brittany started the 2nd grade & Faith started preschool. Faith loves it. Joanna wont start anything for a bit. After she turns 4 I will start her in preschool to. Anyways Joanna is still on her road to recovery. She has started walking again without the walker. I am sooo happy about that. Her legs are very weak. I am trying to get her back into therapy but she is now on a waiting list. Which I think is rediculous. You would think knowing she went out for surgery and being so weak they would want to get her in sooner. We have been doing really good flushing the cycostomy. She is finally starting to get use to it. Cathing is sooo much easier through the belly button. She goes back for another recheck to urology the end of this month. She is sheduled for a CT scan and shunt series with her neuro surgeon the 3rd of November. We will she from there what the next step will be. Take care and I will try to update sooner!
AUGUST 13, 2005
Hello All! Joanna is doing better! Our visit to Richmond again went well. The doctor went ahead and removed the stitches from the cecostomy tube and taught me how to insert a cath to flush her bowels! I will continue to update! Take a minute and look at Joanna's new surgery photos. Talk to everyone soon!
AUGUST 09, 2005
Hello All! Please wish us lots of luck for tomorrow!! Joanna's super pubic tube stitches came out yesterday and then tonight her cecostomy tube came completey out. So back to Richmond we go in the morning! I spoke with the Doctor tonight and she needs to be seen. Not sure if they will replace with a new tube or teach us how to do it when needed. We are not sure the tube traces are healed enough to keep the tube out..Anyhow I will update tomorrow night and let everyone know how it went. Joanna is going to hate this visit. Anytime we even touch her belly she cries! I hate to see her go through that tomorrow, but we have no choice! Talk to you soon!! Lorie
AUGUST 08, 2005
Hello All! We are finally home!!! Joanna's surgery went better than we ever imagined. Her recovery was quite hard but she is pulling through very nicely!! She has actually gained two pounds since we left! Joanna's still need's all the prays she can get. Recovery will take about 2 months. She has lost her ability to walk right now. I beleive she is just weak from being in the bed for 2 weeks. Please check her photo's out this weekend. It will take me that long to get them on here! I will continue to update you! By the way Joanna came home with 4 tubes and over 300 stitches inside! Her poor little belly!! Ohhh sooo sore! Her G Tube, Super Pubic Tube, Vesicostomy Tube & Cecostomy Tube! Hopefully in a month or so she should get them out! We shall see!............................ Thanks For All The Support, Lorie
JULY 22, 2005
Hello All! I just wanted to post one more time. We are leaving sunday morning around 10a.m. to head to Richmond. I am going to try my best to keep everyone updated while she is there! These are going to be some of the hardest days of my life!!! Lorie, Joanna's Mommy
PlEASE ASK THE LORD ABOVE TO TAKE EXTRA SPECIAL CARE OF ME! Please let him give the doctor's the knowledge & strenght to do their best as I go through my long operation! Please let him keep my Mommy, Daddy & Sister's strong as they await my recovery! Lord Keep Me Close Under Your Wing~ Amen
Joanna Lee Sibert
I will be on Make a Child Smile Through July & I will be added to Love Quilts on July 23rd.
Go To My Links Above To Visit These Sites!
JULY 09, 2005
Hello Everyone! I spoke with urology yesterday concerning Joanna's bowel prep before surgery. They informed me that we will have to start clear liquid diet on Saturday the 23rd. I wasn't to happy about this. If she has to be starved I would rather them do that at the hospital. She would not understand if we did this at home. I told the nurse that I didn't think she would need this long of clear liquids to clear her bowel. Joanna already has completely loose stools due to all the laxatives. Anyhow she is suppose to call me Monday and let me know what the doctor decides. Pray he says Sunday only! Poor little thing will be sooo hungery. She will be admitted July 25th at 7a.m. to start antibiotics & NG tube with bowel cleanout. Her surgery is July 26th at 7:30 a.m.
We took the kids to Busch Garden's Thursday to have alittle fun. To say the least Joanna didn't have a very good time. With her sensory issues everything was alittle overwhelming. Wish there was somewhere else around here I could take the girls that they would really enjoy. Anyone have any ideas???............. Well hope you all have a great weekend and I'll post again soon! Don't forget to check out her photos & Make a Child Smile Site!
JULY 02, 2005
Hello All! JOANNA IS OFFICALLY WALKING INDEPENDENTLY!!! She runs the roost around here. lol. She is such a blessing......We just went on a mini vacation to Great Wolf Lodge. The girls loved it. I am so glad they got to do something fun before Joanna's has her surgery! Please visit links below to see photo's!
JUNE 23, 2005
Hello Everyone! Hope you all are well. Joanna has been walking independently more and more everyday! We are so proud of her. I sure hope this surgery doesn't knock her back to much! I got great news tonight!! Joanna got accepted for Make A Smile Smile Organization. This is when they feature 3 children per month on their website. The child receive lots of love & prays. Please visit the site July 1, 2005 to see Joanna and all the other very special children! www.makeachildsmile.org
JUNE 17, 2005
Hello All! Just wanted to drop a line and say Joanna is hanging in there! We are all waiting to get this surgery done and over with. I think the waiting is the hardest thing. It is driving me crazy! Joanna took 48 independent steps yesterday at therapy!! We are so proud of her. Little miss wont walk at home any more. She knows she can get by without doing it at home. At therapy she has no choice. I will keep everyone updated! HAVE A GREAT WEEKEND!
JUNE 10, 2005
Just wanted to post a special thank you to everyone for being so caring and supportive as our family goes through this difficult time! Thanks for everything!!! Please keep the prayers going!!!
JUNE 08, 2005
Today was a pretty rough day for me! Brittany & Joanna had their cardiology appointment today!! Thank goodness Brittany's heart hasn't gotten any worse from last year! The doctor listened to Joanna and thought that hers was an innocent murmur. He did an echo and found out the opposite! Joanna has a heart defect. A bicuspid aortic vavle. They exact same defect Brittany has but Joanna's vavle is leaking more than Brittany's. The good news is that he gave her the ok for surgery with antibiotics. The bad news is that it will just be a waiting game. Hopefully Joanna's heart will due ok! Please continue to Pray for her!
Today was a wonderful day for me!!! Tonight around 7:30p.m while we were visiting with Grandma, Uncle Jimmy, Aunt Ang & Cousin Tyler........ Joanna took off walking. We were all totally surprised & so excited. Daddy even rode over in the firetruck with his friends to see his baby walk! This was the greatest feeling ever! We have worked so hard to get to this point. She walked all the way down the hallway to her sister's room. BY HERSELF!! The girls were so excited. I sure can't wait to go to physical therapy tomorrow to show Dawn. She is going to be shocked!!!!
INFO ON BICUSPID AORTIC VAVLE:
JUNE 05, 2005
Hello All! Caring Bridge Contacted Me Concerning The Guestbook Today! They Are Going To Fix The Sign In Problem ASAP! Please Still Sign Joanna's Guestbook; You Just Have To Enter Your Email Address!
JUNE 02, 2005
Hello Everyone! Joanna saw her kidney doctor today! Just a checkup before surgery! She is really pleased that Joanna is having the augmentation. She did say to prepare ourselves because this is a very long operation. She will remian in PICU for a while! So please continue to say those prayers!!!
Urology Doctor called me today to just go over my concerns about everything. Just a few medical questions I needed to ask. The Bowel procedure Joanna is having is called a Appendicocecostomy! This is were he will put an opening from the bowel to the appendix to the skin. For the Bladder Augmentation he will use part of her segmod colon with is already impaired from the spina bifida and a patch of her stomach wall. He uses a piece of stomach because it produces acids that will help absorb some of the puss the bowel creates, but for the first month after surgery she will have to take Pepcid to keep the acid down so it wont absorb the stitches in the stomach!
JUNE 01, 2005
Hello All! Joanna saw her gastrologist today! He thinks that Joanna's surgery will be a great option for her bowels! He even spoke with the urologist himself to get all the details! He wasn't sure that a urologist could surgically reroute the bowels! After talking to urology he then realized this is one of many he has done! Joanna's urologist is highly talked about in Virginia! We are so glad she has a great doctor!
MAY 28, 2005
Urology called today and they scheduled Joanna's surgery for July 26, 2005. We will head to Richmond on the 24th to get settled in. She has to be at the hospital on the 25th at 8:00a.m. She will be admitted 24hrs before surgery to prep her bowel.
I was alittle concerned about waiting so long but the nurse said he is very booked. Being that Joanna will take an entire scheduled day the first openning is in July. She spoke with the doctor and he said as long as I continue to give Joanna her antibiotics it will be ok to wait.
I will update again soon! Lorie
MAY 27, 2005
We are waiting on urology to call with Joanna's surgery date. I spoke with them this morning. Joanna has to have her heart murmur checked before they can ok her for anesthesia. Especially since this is such along procedure. Joanna's heart murmur was discovered by Rehab a few weeks ago. I had the pediatrican listen. She seems to think it is innocent but because Brittany has a heart defect it is better to be safe. She is scheduled to see a cardiologist June 8th in Richmond.
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