Children of the Promise ~Joanna S.

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Joanna S.

UPDATE: 11-9-07

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

UPDATE: 8-18-07

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!

UPDATE: 8-17-07

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.

UPDATE: 7-17-07

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!

UPDATE: 7-9-07

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!

UPDATE: 4-3-07

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.

UPDATE: 3-29-07

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!

UPDATE: 3-28-07

Joanna Has A New Fan Mail Address! Other P.O. Box Has Been Closed!! Please Send To:

P.O.Box 3123
Hampton, Va 23663

UPDATE: 3-5-07

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))

UPDATE: 2-8-07

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!

UPDATE: 1-2-07

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

UPDATE: 11-8-06

JUST WANTED TO DROP A QUICK LINE AND LET YOU KNOW THAT I ADDED A NEW JOURNAL ENTRY TO JOANNA'S WEBSITE! WHEN YOU GET A CHANCE CHECK IT OUT AND SIGN HER GUESTBOOK! HOPE YOU ARE HAVING A GREAT WEEK SO FAR!

UPDATE: 9-21-06

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.

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.

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

UPDATE: 9-8-06

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!

UPDATE: 8-25-06

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!

UPDATE: 8-17-06

Hello! Joanna is doing well! Still attending physical and occupational therapy weekly! Aquatic therapy has been her favorite so far! New braces were ordered for her a week ago! The doctor had them made alittle higher on the other left side to keep her foot from rolling out! So far her vesticostomy & cycostomy are doing well. She did spend a week in december and a week in June in the hospital. Some infection are normal with these procedures! Her VP Shunt is still a waiting game. She will see the neurosurgeon in November for that! I would again like to thank everyone for thinking of Joanna! The encourging letters are wonderful! You guys are all heaven sent!

UPDATE: 8-9-06

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

UPDATE: 8-7-06

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

UPDATE: 7-28-06

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!

UPDATE: 7-15-06

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!

UPDATE: 7-10-06

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!

UPDATE: 7-04-06

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

UPDATE: 6-28-06

Hello All! Sorry it has been so long since I have updated. I tell you what since school has beeen 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.

UPDATE: 6-19-06

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!

UPDATE: 6-13-06

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!

UPDATE: 6-12-06

Just wanted to type quick note and let everyone know that Joanna has been in the hospital since friday. She has a staph infection in her bladder! I have not beable to post to her website because the program is on my pc at home. I am just using the one in the resource center at CHKD! Please pray that she will go home soon. We are hoping for today but we have to see what the doctor thinks. She has been fever free for 24 hours so that is a good thing! Thanks for signing her guestbook. Knowing that everyone cares has been great!

With Love,
Lorie Sibert

Joanna is at:

Children's Hospital Of the Kings Daughters
Norfolk, VA 23507
7th Floor
Room 736

UPDATE: 6-8-06

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. Below are some pictures from today. I always take my camera with me. Each visit is a landmark in Joanna's journey with Spina Bifida. Take care and I will post as soon as I get that culture back!

UPDATE: 6-7-06

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!

UPDATE: 6-6-06

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!

UPDATE: 6-1-06

Hello All! What a hot day! It has to be 90 degrees here. This mornign was very busy! As soon as Joe gor home from work we all got ready; fropped 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 you rbody underwater to watch yourself on the screen. The therapist even seaid for motivation they will put in the chid's favotite momovie 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

UPDATE: 5-26-06

Joanna is doing pretty good. We have been blessed the last few months with great health! Thanks to all the prayers! She is still in need of a brace change due to the left foot turning out. We are puzzled on what to do for that! Aquatic eval was done and she should start that therapy within the next couple of weeks. Her sensory issues are still the same. She can be very affected by our normal daily activities. Thanks again for all the fan mail! You guys have done wonders for my little girl!

UPDATE: 5-25-06

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

UPDATE: 5-19-06

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.

ADDED:4-27-06

Condition:

Spina Bifida

Comments:

I was 15 weeks pregnant with my 3rd child. A routine AFP test during the pregnancy was fine. I never thought in a million years there was anything wrong with my baby. At my 20 week ultrasound appointment when usually you find out the sex of your unborn baby and how much it weights, I found out that my baby had some kind of neurotube defect. I thought to myself, "a neurotube defect, what is that?" My little one was already fighting for survival and she wasn't even born yet. This is the moment in my life when my world took a complete 360. Not only did my 4 year old daughter Brittany have a heart defect known as a bicuspid aortic valve, my one year old Faith was suppose to be born with down syndrome, and now I am about to face another nightmare. So all the testing began. That 20 week routine checkup turned into the complete opposite. No I didn't get to go home and tell my girls, parents, family and friends indeed I was having another little girl. I had to explain to everyone even myself my unborn baby had the #1 disabling birth defect. Spina Bifida.

http://www.chkd.org/neurology/spibif.asp What an ugly word. A word I never thought would even be part of my vocabulary. Well indeed it is. Over the remaining 19 weeks of my pregnancy I went to checkups upon checkups and ultrasounds galore. Doctors trying their best to find out exactly how big my baby's spine opening was. Spina Bifida is when the fetus spine doesn't form correctly. There is three forms of this. Joanna was born with the worst form, myelomeningcele. S1 L4 region of her spine. The spine forms outside the back in a sac were all the tissue and nerves growth.

Well it's been 19 weeks since my precious baby girl was diagnosed with Spina Bifida. On April 3, 2003 at 1:00p.m., 40 minutes from home I traveled to have my planned cc-section. What a scary day. What a happy day. Finally get to meet my little one for the first time. Being able to tell her I love her and everything is going to be all right. A few minutes before 2:00p.m. Joanna Lee was born! She came out screaming. What a great feeling. I then knew she was finally here. The doctors surrounded her from Children's hospital. Checking ever inch of little body. Putting her into a clear plastic bag. Which was sterile wrap to keep the defect free from germs and infections. Before I could even lay one eye on her she was rolled away in the incubator to Children's NICU. And at this point her struggle begins!

...................

Weighing 6lbs 13oz and 20 1/2 inches long she was known as the Giant to all the nurses. Laying there next to all those preemies weighing in at about one pound. Her Daddy went to see her and brought me back a Polaroid picture. My baby girl! At 12 midnight after recovering from my c-section I was finally allowed to see Joanna. I have never cried so hard in my life. Seeing her lay there with tubes. Watching every movement to see if she had any leg movement. Joanna barely even moved her legs. It was like she didn't even know she had feet. Over the next day I was over whelmed by all the doctors......

April 5, 2003 She went in for surgery to close her defect. One of the scarcest days of my life. What a long surgery. After the surgery she looked pitiful. Laying there on a ventilator. Worst thing I have ever seen, the best thing I had ever seen! Joanna gained use of her legs even though her feet were still lifeless. That was ok though they were still cute.............................Then comes another problem Joanna developed hydrocephalus. Build up of the spinal fluid in the brain. Because of the damaged spine the fluid is unable to circulate properly. http://www.chkd.org/neurology/hydro.asp So now Joanna will have surgery again. On April7, 2003 Joanna had a VP shunt placed in her brain. This is a valve that pumps the spinal fluid from the ventricles to her belly where it is then absorbed. Having a patch of her hair shaved. It was terrible, but Joanna did very well for this surgery. Next step was to check her bladder and kidney's for complications. Everything seemed to check out ok. After 13 days in the NICU we can finally take our little one home..............................

3 months have gone by with no complications. Time for the routine checkups. Her back healed well, her head looks great, but now we have another problem. Joanna has a neurogenic bladder, hydronephrosis, & grade 5 reflux of the left kidney. Which means her bladder doesn't function properly from the nerve damage. It doesn't empty correctly so the urine backs up into her kidney's. We were told to put her on preventive antibiotics to prevent any infections............Over the next few months Joanna has struggled with kidney infections............9 months have gone by and Joanna has been to the emergency room 13 times, and spent several nights in the hospital. Between kidney infections and bowel issues. She has no control of her bowels what so ever. She went in the hospital several times to have an NG tube ran down her nose to push medicine to clean out her bowel. We were irrigating her bowels at home. Terribly painful to her causing UTI's from the cleanouts. So the doctors decided that we needed to start catherizing Joanna. This would keep her blader empty, help with infections, and protect her kidney's.... She was seen by her neuro surgeon to check possible shunt malfunction. Joanna shunt has what they call slit shunt syndrome. This is when the shunt is working to well, draining her ventricles to almost nothing. Which is not a good thing. Her doctor said that we should be looking at replacing her shunt the first of the year 2006, if the shunt functions till then!!......... Thank goodness it is now May 2005 and Joanna's bowels have been finally controlled by a load of laxatives. So it's the runs or nothing. We dont care. She is finally having regular bowel movements and few UTI's......................

A few weeks ago Joanna was seen for her routine Rehab appointment. She has been receiving physical therapy since she was around 6 months old. She wears pink and purple braces up to her knees. This gives her good support. After countless hours, alot of crying and Dawn her excellent physical therapist Joanna has began walking with a walker. Something I never thought I'd see. She has been through so much. OT therapy with Andrea for tactile issues and social anxiety! Thanks to Andrea's hard work she graduated out of OT about a month ago! Speech therapy with Mia for delayed language. Thanks to Mia she has showed great inprovement over the past month. Her language has exploded!!........... What can go wrong now? Some of Joanna's doctors are concerned about her kidney's. The reflux is at its worst. Concerned that she will damage her kidney's....... May 13, 2005 we went to Hanover, Va! I hour and a half from home to have a urodynamics study. This shows her bladder pressures, how well it functions and how the kidney's react. This test was going to determine if my baby girl was going to have a baldder augmentation. This is when the doctor's use part of the bowel and stomach to enlarge her baldder. This will help keep the pressures down and preserve her kidney's.......................

Well my nightmare was true. Joanna is going to now undergo a major operation to save her kidney's. May 20 we meet with the doctor to explain our options, and risks. We have decided to go through with the operation.

I will end on this note for now. Joanna has done more than I could ever imagine. She is a bright, loving, beautiful little girl. I will always due what is best for her. Joanna has Spina Bifida, Spina Bifida Does Not Have Her! She is one strong little girl. Please pray for her and our family! I will update as soon as we find out anything. Hopefully the date soon. Please feel free to email me if you have advice or questions. mommyof3girls@verizon.net

With a lot of Faith and Prayers,
Joanna's Mommy,