January 2nd - hoping for a better year :-)

Well our family made it to a new year - it sure was an eventful 2008. Brextin ended up having to be air lifted twice and almost a third time - for more seizures. Just yesterday the first of the year - Brextin had a date with the ER doctor. He has been doing nothing but sleeping and coughing and I wanted to make sure it wasn't anything serious - and the doctor reported that Brextin is showing some bacteria in his lungs and beginning to get croup. (a cough that sounds like a seal) What a wonderful way to begin our new year.

We are seeking out any therapy or alternative therapy that will help our son - so earlier this week - we headed down to Madison and checked out Hyberbaric Oxygen Therapy - or also known as HBOT - it costs about $4,000 to try the procedure - and he will need to do 40 dives in a row - so I am so lucky to have a first cousin who is allowing me to stay with her - during the summer month (we will begin the treatments on June 10th and end on July 7th) http://www.wisconsinhyperbarics.com/ here is the link to check out their facility and to read more about the therapy - we might try a fundraiser to help us out financially. While at the appointment - Brextin had the worst seizure that we have ever seen - he actually turned blue during this one - his eyes veered to the left, his lip started to tremble, his body got stiffed and then he vomited - luckily the doctor was right there - but didn't seem to concerned - we then drove him back with a wet cloth on his head to help try to lower his fever - his fevers were as high as 104.8 - which was pretty scary.

We also had another EEG done the day after - and a chest X-Ray but they didn't see any bacteria building up - the EEG - was clean - still high spikes appeared and slowing of the waves also appeared -(no hypps) but until he goes 3 months without any seizures our neuro doctor won't change his meds - he is currently on topamax and viagabitran. So my guess is that we won't see any meds change until at least the Summer months.

However we have seen a huge success with him within the past 5 months - it all began when he turned about 14 months - he is now able to sit up, bite his socks off with his teeth while on his back, roll over from belly to back, and hold some toys with his hands. We still use a neck ring on him while in the tub (water therapy), he is on nutritional supplements (Reliv - Kids now and Inerergize) - plus seeking out additional therapy - at a center that is about 60 miles away. I am always looking for additional ideas to try to help him in his areas in which he is delayed - He has the largest smile while trying to stand while holding onto our hands - plus he just started to apply weight to his arms while on tummy time - he actually keeps them straight until he gets tired (usually it is about 5 minutes) This is BIG progress for him - It is hard to believe but just 5 months ago - my son wouldn't even sit up - you would put him in the position and he would just lean to the side and flop forward - so we are continuing to believe in prayer, hope, faith, and love to encourage our son to move forward and to have a positive future.

Brextin's story

Brextin was a Mother's day baby - in 2007 - He was about 1 week late and was delivered by a V-BAC - I was so ready to have another child - and was excited to be able to have him on my chest as soon as he was delivered - however he had swallowed some fluid so he was taken from me right away to get suctioned out and then put on oxygen for about 2 hours - and we took home our son -

From day one we noticed he had a very poor suck - but he also had a terrible reflux - so I just assumed that was the reason why he didn't want to eat was because it kept coming up - when he was about 2 months old he was taken to the hospital for dehydration for not wanting to eat and from throwing up so much - we spent two weeks in a hospital - getting test after test done - but everything came up "normal" except he was labeled failure to thrive and having Microcephaly (smaller head than the norm) His test for reflux even came back up negative - even though he wasn't able to keep hardly any bottles down - and sometimes it would take him 1 hour to drink 4 ounces.

So once we arrived back home with no answers we went to a different hospital for a second opinion and they indicated that it appeared that our son Brextin could very easily have seizures at any given time - the brain pattern was there - but the seizures were not yet - so they sent us on our way - back home.

Then in about 1 month - my husband and myself thought we noticed him staying off into space and so we asked for another EEG study done and sure enough he was having seizures so he was placed on phenabarbital -

Then in about 1 month later we noticed some odd behavior and went back to the hospital where is was admitted again for another 24 hour EEG study and we found out he was seizuring all night - so he was airlifted the next day to a larger hospital - we still don't know why they didn't take action until the next day -

Then when we arrived to the hospital it was brought to our attention that we needed to up his dosage of phenobarbital but add topomax as well. We stayed for about 4 days in the hospital.

Then about one month later - I had noticed that Brextin was sleeping A LOT so we had another EEG done and it showed that he had hypsarrhythmia (abnormal, chaotic brain wave patterns) - which was a form of West Syndrome or Infantile Spasms (IS) the worst case of epilepsy in an infant. We have been told the worst outcome- that our son will not walk or talk. (We will not believe this - God does perform miracles - and we are hoping that one will be given to Brextin- he is just on his own time schedule)

Currently our son is 11 1/2 months old and functions around a 4 month level - he is unable to roll over, sit up, grab a toy for purpose or hug his mommy. Each day has been a struggle - just last month we did receive some good news the chaotic brain wave has disappeared - which is a bonus - our son is currently on the following medication - topamax, vigabitran, a reflux med, and a steroid for breathing problems.

We are scheduled in a couple of weeks for another eye exam - we have been told he is legally blind - he has optic nerve hypolashia (small optic nerve) and CVI - Cortical Vision Impairment. We will listen to the doctors but will only take the information with a grain of salt - God works in wonderful ways and I am praying for the best for our son and our family - he is an adorable child and I pray everything will turn out ok - thanks to the prayers of friends and relatives.

I am new to the blogging world and hope that this will help me cope as well - if anyone has any questions about Infantile Spasms - please contact me - I have meet some wonderful people through the yahoo list serve.