Nathan Update #1

I'm trying to keep the blog a little more updated with info on Nathan and how he is doing. So, here goes a nice ramble.....

Have I mentioned how much we love his neurologist??? Love this man. He is probably in his mid to late 40's (that or he is older and ages really well), is very kind, a good listener, spends time answering questions, is too the point in a very nice way, is soft spoken, not too proud to ask his colleagues for their opinions, etc. etc. I could go on, but you get the picture. Actually, he reminds me of our good friend Connor (are you blushing, Connor?). Very intelligent, very helpful and really caring. What a great combination for a doctor!

Anyway, for a while we were seeing him every week, but at the moment we are weaning Nathan off a steroid (Prelone) and increasing his Topamax (or Topiramate* - click here for more info), so we won't see the doc again until N's Topamax dosage is at a more therapeutic level. Topamax is not a steroid so it won't interfere with Nathan's immune system. He should be off the steroid by June 1st, then after a couple of weeks his immune system should be back to normal. That means we will be out of quarantine! That makes me really happy.

*a note about Topiramate: while it is not listed as a treatment for infantile spasms (what N has), some recent studies out of the UK have found it to be very helpful in stopping this type of seizure disorder. Just in case you read the link above and noticed that IS was not listed. :)

How is Nathan doing? He is still having seizures. It's different everyday and I've stopped trying to figure out a pattern in them. The doc said I would drive myself crazy trying to figure it out and he was right, so I'm not doing that anymore! He has good days with just a few or sometimes even no seizures, and he has bad days with many clusters of seizures throughout the day and night. Some days he is very restless and has trouble getting comfortable or napping, while other times he sleeps the day away. I know he is exhausted and never really feels good. I wish I could switch places with him and take all of it for him. (Makes me love Jesus even more knowing that's what He did for all of us.)

Nathan is still growing (several people have asked). He weighs somewhere around 14 pounds and is over 25 inches long. He is small for his age according to regular growth charts, but if you look at growth charts specifically for kids with Down Syndrome, he is right in the 50th percentile. He has extra chubby cheeks right now from the steroids, but they go nicely with his chubby arms and hands. You can't really tell from the pictures, but he has the most beautiful vivid blue eyes, and his complexion is to die for - so milky and smooth. And I love his hair - it has a hint of red in it and it's so pretty in the sunlight. :) In short, he is adorable, what can I say? :)

So there you have it. Things are a little bit different everyday, which is ironically the same. We're waiting to see what will make the seizures stop for good. Thank you so much to everyone who has asked about Nathan, emailed, called etc. And thank you so much for praying for him and for us too!