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.