Wednesday, May 6, 2009

How's William? - Another Successful Infusion

Many people ask about William and the report is typically the same. Here's the latest, though not much has changed in a few months.

William is doing well. He has infusions of IVIG every 3 weeks at a doctors office. Yesterday was his day. It takes 7 hours to administer the whole dose, but they make it pretty comfortable there and we come prepared. He doesn't really experience any bad side effects, just a short-lived headache 1-2 days later. It all keeps him from weakening. By doing it every 3 weeks we keep his immune system out of the loop completely so it doesn't have a chance to attack the nerves again. He relies on the perfected cocktail of donated antibodies to keep him from getting sick and to trick his immune system into submission. The upside is that he hasn't been ill since all of this started. He can not have further immunizations (though he is up to date for now), lest we trigger his immune system to attack, but he's covered for all of those illnesses with the IVIG. He's got better immunity than I do right now. He fights everything off within a day or less. He regained all his prior strength in physical therapy, so he's back to his normal self. He is weaker when he is tired and is still uncoordinated at times, but he's able to enjoy a lot of activities still.

After finishing 90 days of anti-biotic treatment for Lyme Disease, we have increased the dose and will continue, hoping to see signs of improvement. He tolerates the medicine well, so we'll continue with patience and perseverance.

The next thing people ask, and even William asked today, is how long will we continue these infusions? The short answer is that we don't know. They are working for now and we won't rock the boat until he has been symptom-free for 6 months.

He's learning to read and can read simple sentences and books now. He's a good kid and gives us a run for our money everyday. The report is good overall.

Saturday, May 2, 2009

Oh Mr. Sun, Sun, Mr. Golden Sun

Please shine down on me!!

I'm tired of these overcast, humid days. They are absolutely wrecking the beautiful, natural light thing we had going in our house. Not to mention how crabby I get when it's so muggy outside. It's time to stop hiding and come on out to play!!

Mr. Sun, these little children are asking you, to please come out so we can play with you!