My Spina Bifida Progress

Several people have asked about my condition since I was diagnosed with Spina Bifida.  I will show you guys how God works miracles as I get older.  (START AT THE BOTTOM OF THIS PAGE)

01/21/2009

As you can see, I am a FAST learner. I getting around pretty well in my wheelchair. It just came in last night and already I am pushing myself where I need to go. I am still using my stander with my walker. I go so fast that I am almost tipping over. I am still in OT twice a week, Speech once a week, and PT three times a week. I am still not sitting up. I am trying so hard but it just hasn’t happened yet. Last week I had a very low fever and I had a couple of seizures. Mommy took me to the doctor and while I was there I had another one. That one lasted for 45 minutes. My pediatrician had to call 911 and I had to ride in an ambulance to the ER. They had to give me some pretty strong drugs to stop my seizure. I had to spend one night in the PICU and one night in a regular room. I went to have another EEG done today, and the doctor said that she had some good news and bad news. According to the EEG’s that I have had, my ‘background’ brain activity is not normal. The doctors say that it looks like I am in a constant state of seizure activity. So, the bad news is that my EEG today still showed a bad ‘background’ and I am going to have to add another drug called Zonegran to my meds. I will take this once a day in addition to my Keppra. We also had to increase my Keppra level to 3.25 mls twice a day. The good news is that I had several spots on my EEG that looked “normal”. The doctor is very optimistic that with the right medication, my brain will “fix” itself. One of the reasons why I am in so much therapy is because I am pretty behind on some things. Once my EEG’s can look a little better I should be able to learn things a lot quicker. Well, that’s all for now. Keep checking back for some more updates.

 

11/02/08

WOW! A lot has happened over the past 6 months. Some good, some not so good. The BIGGEST news is that God prevailed through it all. The last time my Mommy wrote to you, I was still having seizures. The doctors were trying to figure out why, and switched my meds. I am still on Keppra. I take 2.5mls twice a day. I still have no real side effects, and it seems to do the trick for me and my seizures. In august, right before my first birthday, I spiked a fever to 104.5 in the middle of the night. I had a febrile seizure, which is a fever induced seizure. It lasted for about 5 or 6 minutes, so Mommy and Daddy called 911. Long story short, I had my first ambulance ride to the ER. I thought it was kinda fun, cause we were going so fast, but Mommy and Daddy didn’t like it at all. After one week in the hospital, the doctors said that I had my first UTI. The doctors put me on an antibiotic that I take once a day. In addition, Mommy has to cath me three times a day now. The good news is that as soon as my bladder get better, I seemed to progress in every area of my development. I have not had a seizure since August. In late August I started to say…This, That, dada, and mama. In October, I started to say Baby! I am still in OT twice a week and PT three times a week. I re qualified for Speech, which I take twice a month. Because I am talking so much, I don’t think that I am going to qualify for Speech much longer. I just really LOVE my Speech Therapist. Actually, I love ALL of my therapist. They are all in agreement that I am going to walk. I am still not sitting up by myself yet, but I am REALLY close. The BIG NEWS is that I am rolling EVERYWHERE. I am also COMMANDO CRAWLING! If I see something that I want….. I GET IT! I graduated from my big stander to a parapodium. Its pretty much the same thing, just not so big and it has less straps. I also use a walker to help me move around the house. Well, I will make sure to keep updating you on all of my progress. Things are going so great right now, Mommy and Daddy sometimes forget that I was even born with Spina Bifida!

6/10/08

I am no longer in Speech because I am talking NON STOP. I am saying BABA, DADA, NANA, NENE, and this morning MAMA!! I am still in PT and OT and things are going well. I am still not sitting up, but I am working really hard at it. My therapist tell Mommy that I have very low muscle tone and that is why I am a little behind. I am going to start aqua therapy this Saturday. I’ll go every Saturday in June and if I do well, Mommy will let me go for the whole summer. Unfortunately, I have had more seizures so I had do get another EEG. That EEG showed some abnormal activity so the doctors put me on a drug called Trileptal to stop the seizures from happening. They went away for a while, but then they came back. Then my left foot started to twitch, so my doctors wanted me to have a MRI. I had to be put to sleep for the test, which I did not like. Because I couldn’t eat the night before and the day of, I got a little dehydrated, but I was able to go home later that day. The MRI showed us three things. First, my Spina Bifida level is L3. Second, they found two Syrinx’s on my spine. A Syrinx is a fluid filled pocket on the spine. I have one on the thorassic level and one on the lumbarregion of my spine. However, they are very small and we won’t have to do anything about them for now. Lastly, the doctors discovered that I was born without a Corpus Callosum. If you do research on this, things can lookalittlescary. However, it seems like my brain has done a great job at compensating. We were told that I could have severe learning difficulties and problems with clumsiness, but we are standing on God’s Word that I will be just fine. The doctors have taken me off of Trileptal and put me on Kepra to keep me from having seizures. So far I am really not having any side effects from the drug. Mommy and Daddy only have to cath me in the morning and at night. I really think that when I go back to the doctor in October, they will say that Mommy and Daddy won’t have to cath me at all. My feet are totally straight and are doing great.  We won’t have to get any other tests for a while. I’ll make sure to keep you all updated.

3/25/08

Ok, I have added OT and Speech Therapy to my weekly routine! Ot is really hard work, and to be honest I really don’t like it very much. Mrs Michelle works all of my upper body. She makes me reach for toys over my head and she stretches my neck and belly area. I am really stiff at times so that’s why she needs to stretch me out. All in all, it’s not that bad, it is just going to take some getting used to. Mrs Nicole is my Speech Therapist and I really like her. She is helping me try to babble and say little things like dada, mama, and gaga. She uses cool instruments that look like toothbrushes to help stimulate my vocal cords. She also told Mommy that she needed to start to use some sign language to help me communicate. I think that’s going to be fun. So far Mommy is only doing a few words like, eat, more, drink and please. I am sure that she will add some more words later on. My PT is still going great. Keep praying for my big Urodynamics test on the 7th of April. I’ll make sure to update you on the results. 

3/02/08

I have had a TON of doctor’s appointments lately! First let’s start with my brain. My shunt is working fine! I haven’t had any swelling, and even after an EEG there is NO sign of abnormal brain activity. I keep trying to tell the doctor’s that I am going to be one smart kid, guess I just need to grow up and show them. I also had my eyes checked and all is well, 20/20 vision! I got my hearing test done and passed with flying colors! As for my bladder, Mommy still needs to cath me every four hours during the day, but we are all really praying hard that the doctor tells us we can go to twice a day very soon. Eventually, we are all believing that I won’t need any help! The Urologists feels like I need to be on a mild antibiotic to help prevent reflux in my kidneys. Mommy gives it to me every night before I go to bed. To be honest, it’s not all that bad, it taste like bubble gum  My first set of Dennis Brown shoes (the ones with the bar) are now too small. Mommy and Daddy are going to order a bigger pair for my growing feet! I have also started PT with Mrs Krista. I LOVE her. She comes to my house twice a week. I still see Mrs Gala every other Wednesday too. Mommy REALLY wants me to get strong so she is starting PT and Speech Therapy as well. My weeks are pretty booked up. But that’s ok, because all of that practice and hard work is paying off. I am rolling over from my belly to my back! I am really trying to stand up on my own. I am slowly starting to feel my legs trying to work. It wears me out, but I am starting to get the hang of it. Mrs Gala thinks that I am ready for my first “stander”. It’s a stationary walker that will help me learn to stand up on my legs. They are still a little wobbly. As soon as it comes in, I’ll get Mommy to post some pics! Keep praying for me. God is good all the time and ALL THINGS ARE POSSIBLE

12/1/07

I went and had my urodynamics test done and we found that my sphincter muscle that releases the urine from my bladder is spastic so it doesn’t empty my bladder when it gets full.  I have the feeling of my bladder being full and I can urinate on my own, but I can’t completely empty on my own.  We’re still having to catheterize to get all of the urine out although I can stream when I go to the bathroom.   

11/1/07   NO MORE CASTS!!

I went to the doctor today and when he looked at my feet after removing the casts, he said that I didn’t need casts any more!  After a prognosis of 1 year with casts being changed out to get my feet corrected, I went only 3 weeks and I’m done.  My feet look great.  Now, I’ve graduated to the Ponzettimethodwhich is the booties with the bar in between.  They mark up my feet a little because I have to wear them so tight, but anything is better than those casts! 

10/17/07

I started the process of getting my feet fixed so that I can walk.  The doctor is doing some ’serial casting’ and changing out the casts once a week, putting more pressure on my feet to align correctly at every casting .  I’m 10 lbs. 2.5 ozs. (10 lbs. 8 ozs. withmy casts on).  I’m eating 4 – 5 ounces per feeding.  I just started smiling this week and responding to all of mommy and daddy’s ‘quirky’ sounds and faces.  My legs are trying to move, but I’m limited withmycastson.  Here’s a pic of me with my second set of casts on….

9/16/07

A little over a month and three surgeries later (1-closing of the back and a temporary resovoir, 2-installation of the shunt, 3-repair of two bilateral inguinal hernias):

Head size has decreased drastically….

  

Also on 9/16/07, progress of my incision on my back.

Here’s me in the hospital during the first two weeks of my life.

One of the side effects of Spina Bifida is Hydrocephalus causing excess fluid build up in the head.  When this pressure is more than normal in Spina Bifida children, the eyes look down which is called ’sundowning’.

I did have club feet when I was born, but they tell me that this will be fixed through casting, splints, braces, etc.

The bandage on my back was where the actual defect was.  It was kind of like an overgrown blister at the bottom of my spine.  The bandage was kept on to keep the defect moist and sterile until Dr. Joseph perfomed surgery to close my back up.  You can also see how swollen my head was once you see later pictures.