Dates and Times

Just so everyone will know we have our IVIG dates set. Dray will be going up to Primary Children's on December 30 & 31st for his blood infusions. I am hoping to know more details about this process when I call up there. No fun for needles... poor boy, it breaks my heart. But, he really is a tough guy. We got his blood drawn yesterday, and he did put up somewhat of a protest, but overall he took it like a man. He is just so sweet and tries to do everything we ask of him. He has gotten very good at giving himself his own medication. I give him the syringe and he takes care of his business, and that is impressive because he takes a lot of different things. Steroids, fish oil, and some other nutrients that help with various aspects of his condition.

Oh, and just FYI Dray had an awesome Christmas!! He knew exactly what was going on. He told everyone that Santa Claus was coming to his house to give him presents. He remembered to put out cookies and milk. Actually, that was the first thing he noticed in the morning, not the presents, but that Santa ate the cookies and drank the milk. He is really into airplanes, rockets, etc. Anything that moves fast. So, we got him a 3 foot rocket. He loved it and told me he wanted to hug it. I will have to put up some pictures of our Christmas. What a sweet little boy!! Keep him in your thoughts and prayers this week. We just keep praying to find something that will help him. I know so many of you already do... so thank you!

Here's the plan...

I talked to Dr. Thompson last week and we decided on a plan for Dray going forth. My biggest concern expressed to him was that at least on the steroids he has been able to maintain some stability. He hasn't lost his ability to talk completely, which has happened before. He struggles so much to understand us, but for whatever reason he has maintained a manageable level of expressive language. Like for example we'll ask him in a book where Santa Claus is and he'll change the subject or give us the blank stare. But then 2 seconds later he'll say, "That's Santa Claus," so he can say the words, but not understand others when they say it. So strange what's going on in that brain. Anyway, I didn't want to lose that speech again. So, the next step was IVIG (intravenous immunoglobulins). It's a blood infusion that they will do once every 3-4 weeks. I was just freaking about trying it and having any worse results than we are currently having. Dr. Thompson said that we could keep him on the steroids and do IVIG simultaneously. Thank goodness and what a relief!!

Dr. Thompson has become such a source of peace for me. He is never discouraged and always gives me encouragement. One thing in particular that he said was great. I asked him what I'm looking at for the seizures ending, jr. high or high school. His reply was, "Good heavens no. You're looking at months to a couple of years". He also added that we'll have to see what pieces we are left to pick up after the seizures are done, but at least I can look forward to that part being in under control in a reasonable amount of time. Anyway, he is awesome, and makes himself so available by giving me his cell phone number. I don't think anyone can appreciate that until you need to talk to a doctor on a regular basis and you're left leaving messages with an office assistant every time. We'll have another EEG after the holidays... just to be sure, and then we'll do the IVIG after that. We need lots of prayers that something will work for Dray. Thanks to all who offer constant support and prayers for Dray... it is very appreciated!