'With God, All Things Are Possible'!

MEDICAL UPDATES

Since there have been so many people asking about how I’m doing, my family and I have decided to include a page that has some of the procedures, tests, accidents, conditions, etc. that I’ve had. Through them all, even when things seem the darkest, God’s light always shines through. And every time something ‘bad ‘ has happened there is always a miracle around the corner for me! Kinda like a rainbow at the end of a storm. God sure is good – all the time!

August 6, 2012  For about 6 months I have been having decompression headaches.  They     really hurt and even wake me up at night.  I am getting them because my shunt is draining too much fluid from my brain.  I have been on prescription medication to help with the pain.  My mom and dad and my doctors have been trying to figure out what to do and today they decided that I needed a new shunt.  Dr. Joseph removed my 2nd shunt (the one he put in last year) and put in a new one. He said the one he took out was clogged – just like my mom said!!..People should really listen to her – she knows what she is talking about! The new port he used is different from the old one.  This one isn’t supposed to drain as much fluid.  We just hope it drains enough.  That is one of the main things that will have to be watched.  But so far so good!.. I had to stay in the hospital so long because I started running a high fever.  They gave me IV antibiotics and did a lot of blood tests.  Since nothing showed up that would cause that high of a fever for so many days, they decided I must have had a virus.  By Friday my fever started to drop enough that it was decided I could go home.  I will just need to be on oral antibiotics for another 10 days. And the best news is my headaches are gone!

!!

May 19, 2012  I had a really bad seizure this morning.  God was looking out for me cause my mom happened to be in my bedroom with my brother and I was able to get her attention.  My dad had to call 911 and my mom had to give me this really strong seizure medicine.  I thought I was done with ambulance rides but I had another one today.  I had to spend the week-end in the hospital and my neurologist said I needed to double the dose of one of my seizure medicines.  My mom is now thinking that I might have been having some break through seizures and not hypoglycemic episodes like the doctors thought. Since she has been checking my blood sugar, my levels have been perfect.  It was decided that I am prone to having low blood sugar if I am sick or I don’t eat like I should.  But the good news is that I am not hypoglycemic like they thought.

February 5, 2012  My mom and dad had to take me to the emergency room this week-end. As usual the doctors had to make sure that my shunt wasn’t giving me trouble.  They decided that I had a stomach virus and became dehydrated and my blood sugar got too low.  They gave me fluids so that my glucose levels would go up.  I will now have to see an endocrinologist to make sure I’m not hypoglycemic and my mom will have to check my blood sugar levels every day.

June 29, 2011  It’s back to the drawing board – or at least the operating room.  Looks like the top third of my new shunt got clogged and had to be replaced.  Since they didn’t have to put in a whole new shunt, this surgery was easier on me.  I still had to have that weird haircut but they didn’t make me wear the turban thing on my head like the last time.

March 14, 2011     It was determined today that I was definitely having shunt failure which started last Thursday with a trip to the ER. Extreme headaches, throwing up, and the CT scan that showed fluid on my brain proved it.  My neurosurgeon decided it was safer for me if he put a new shunt on the other side of my head instead of taking out or trying to repair the old one. He said now I would be like a twin engine plane with 2 shunts instead of one. The old one seems to be working, just not as good as it should. I had to be given morphine for a few days to help with the pain. But then it wasn’t so bad. My head had to stay wrapped for a few days with bandages. Also, the doctor who performed the part of the surgery to put the tubing in my belly said he moved all of my organs there around and put them where they should be. It seems they were each in their own ‘compartment’ and he said he cleaned my belly out of scar tissue and now the organs are all part of one big ‘compartment’.  I think it hurts more to move my belly than it does to move my head. I have two places on my belly where they made incisions and then a big one on my head. They let me out of the PICU after a few days and then moved me to a really nice, really big room. And after just a day or so there, I got to go home.  I’ll have to miss a few weeks of school, but then it will be back to normal!

December 30, 2010     You should see my eyes! Everywhere that use to be white is now REALLY red, and with my sorta green eyes, I am definitely fitting in with the red and green colors of the Christmas season. It’s cause I had surgery on my eyes today. I have been wearing glasses to help my eyes  stay straight but they weren’t doing the trick. When one of my eyes floats to the side,  my brain then can’t make both eyes work at the same time, so it shuts one down. Otherwise, I would be looking in two different directions at the same time. That could be kinda cool to do if you think about it. It would be a special “power” – like superman or spiderman! Oh well, guess it wasn’t meant to be. Anyway – I have Jesus – and that’s all the special power I need!!

That’s the “eye thing” I was talking about. You can really see it when I get excited like I am now

 

 

 

 

 

 

 

 

 

 

February 10, 2010     Today I had a procedure called a heel-chord release on both my ankles.  It’s where the doctor makes slits in the achilles tendon in order to stretch it.  They decided to do this because I kept having to get casts put on my feet. It always worked for a while then my feet would go back to where the doctor didn’t want them to be. He said it was because my achilles tendons were too tight. The procedure was no big deal – I didn’t feel a thing!! Of course it helps that I don’t have a whole lot of feeling – YET- in that part of my body. The worst part is that I have to have casts on while the surgery is healing. But once those casts come off; I plan to have them off for good!

December 8, 2009     Since I have been getting a lot of ear infections, the doctors decided to have tubes put in my ears and my adenoids taken out.  I had it done today and did great. I had a little trouble with dehydration so I had to stay a little longer than planned but I still got to go home the same day.  I’m glad ear infections will be a thing of the past!

 

Guess having surgery wasn’t too bad. I got to find out what a popsicle tastes like… Really good!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

June 23, 2009     Had my first real accident today while my mommy was packing for us to go to the beach.  I fell and hit my head – right where my shunt is. My mommy said my eyes did a funny thing so she took me to the ER. I seemed fine at first but then I had a really bad seizure.  The doctors had to give me a lot of medicine that made it hard for me to breathe on my own. They had to stick a tube down my throat and let a machine breathe for me. By the next morning they were able to take out that nasty tube. Now I sound like a frog croaking! Since I’m doing much better they are letting us go on our trip to the beach!! I’m so excited cause some of my good buddies are going there with me!

January 21, 2009      My wheelchair came in last night and I’m such a fast learner that I’m already 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. (On my blog you can check out the video of me walking.)  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.

November 2, 2008     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!

September 2008        There’s been a nasty intestinal virus going around and it looks like I caught it. My mommy and daddy didn’t realize how quickly I can dehydrate. It happens for me a lot faster than for your typical kid. – I’m just special that way I guess. –  Anyway, it landed me a few days in the hospital until the doctors made sure it was just a virus and that my blood levels were back to where they should be. I guess all the excitement from Hurricane Gustav wasn’t enough – I had to add a little of my own!

June 10, 2008     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.

November 2, 2008     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!

March 25, 2008     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.

March 2, 2008     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

December 1, 2007     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.

November 1, 2007  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!

October 17, 2007  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 with my casts on.

ROUND TWO

MY FIRST SET OF CASTS

 

 

 

 

 

 

 

 

 

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

progress-of-back-incision-2-091607.jpg

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.

right-foot.jpg

just-chillin-2.jpg

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.

Comments on: "MEDICAL UPDATES" (1)

  1. Anonymous said:

    Our prayers and thoughts are with you and your wonderful family! Love, The Albrechts

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