Robby's Appt & Maddys Dress

On Tuesday Robby had his followup appt with Dr. Boo (our local neurologist)
She is an amazing Dr. who tries her best to assure me Robby will do "nromal" things in his own time. When we got there she put down a therapy mat on the floor and Rob and I sat down with Robby and her on the mat and played and talked. She again told me this Leukodystrophy was caused by a virus that basically attacked Robby's brain and that it was not caused by an enzyme dysfunction like a normal Leukodystrophy. She told me it was still their opinion (hers and Kennedy Kriegeer/Hopkins) that this was in no way a Mitochondrial disease and that there was nothing that we could have done differently to prevent it. The Drs. believe that Robby had a genetic predisposition to something in his body that caused his body to not be able to fight off the virus.

I cried and cried and cried until I think she may have thought I was nuts! Plus I just kept asking questions not wanting our appt to end because Dr. Boo has a way of making me feel like everything is going to be ok and she is so good with Robby.
I asked looking back on his birth if there was anything we could have done differently, maybe antibiotics right away... but it was a virus and antibiotics would not have worked. She even said antiviral medicine probably would not have worked. There was nothing we could have done to change it and it is basically "God's will." That is a hard thing to swallow because I just want him better.

We are not going to do any new MRI's or EEG's because at this point she feels there is really no reason too. His seizures are very well controlled (knock on wood). We are going to do a Lamictel level to make sure it is at a good point and we are also going to do a Levocarnitine level to see how that is in his system. We may stop the Levocarnitine for a while and then do another level in a few weeks to see if he really needs the Levocarnitine or if his body produces it naturally. The hope is we can take him off of it. But we'll have to wait and see. Such guessing games when it comes to medications !

I asked if he would have still been autistic even if he didn't have this Leukodystrophy. She said it could have been possible but there is no way to really have known. We will be attending an Autism conference in Feburary which Dr. Boo is on the panel of experts. She told me she is also attending as a parent too because her child has autism. I think that is the one thing that makes me feel so good about having her as our doc. She just gets it because she is a mom too dealing with some of the same issues and feelings we have!

We have to focus on what we know now with him to help him succeed and improve his life. He is really coming along and she said he will talk. One day he will start talking and he won't stop (especially if he is like me). She also said he will play baseball and walk. (Sorry Dr. Boo but I won't believe that until I see it) I guess that is my mindset about alot of things these days. That I don't believe it until I see it. All in all it was a very good appt and as usual (even though this is only the second appt with Dr. Boo) she made me feel good about Robby.

Now onto Madison, She is preparing for her first Holy Communion on May 1 and we are trying to catch her up because she just started prep this month. (oops mom missed the first four months!)
She is working on the Rosary and prayers and also on the Ten Commandments. She is doing very well and asking lot of good questions. I am learning too, which is helping me with my faith journey!  Soon she will have her first penance and I am looking forward to going to confession after she has hers.

Last night we looked at lots of dresses online and started to think about what type of dress she would like. We have chosen a few and I am going to try to post our three favorites here and let our family and friends vote for which one they like.

So all in all it has been a crazy and busy week as usual. I have a Neuro appt tomorrow for myself and hope to have more answers. I also meet with my new family doctor tonight and hope that I like her and that she is willing to help me more than the last family doc. Talk to you all soon!