update

Today we saw Dr. Wirrell, a child neurologist at the clinic. After she had a chance to review all of Jacob's records and prior MRI's, we talked a lot about his development, his seizures and the white brain matter abnormalities. She agreed with all of the work up done by our local doctor and was pleased at how thorough he has been.

EEG - The results of yesterday's EEG were normal, which was great news. The only thing to note was that Jacob's anti-seizure medication could be working so well that it is completely blocking all the possible seizure activity. The only way to truly know there is no seizure activity is to take him off the meds and repeat the EEG, which we'll do once he's been seizure free for 2 years (1 more year to go).

Development - The white brain matter has caused Jacob to struggle with language, fine and gross motor skills and social skills. The doctor agreed with all the assessment we've already had done on Jacob and agreed that speech and language therapy and occupational therapy will help mature those skills. Jacob's overall level is more of a 3-4 year old, more likely on the 3 side.

White brain matter abnormality - This is the main reason we took Jacob to Mayo. The doctor explained to us that there are 3 diagnosis for white matter abnormalities: progressive Leukoenuphaloparnye (good luck saying that one!), demyelinating and non-progressive. The progressive Leuko would be if we saw deterioration in Jacob. For example, he could walk one day and then the next he couldn't. Or he could talk one day and then not the next... A very sudden deterioration. We have not seen this at all (thankfully). There is one additional lab test she will run on him to rule this diagnosis out. This is the worst one of the three with an outcome I don't even want to think about. The second - demyelinating - relates to Multiple Sclerosis and ADEM. Again, this has to do with the deterioration, but this is a little different in that it would be an up and down deterioration... he can walk one day, but not the next, but then he could again the next day. This is definitely out for Jacob. She feels there are no signs or symptoms of MS or anything else in this category. So that leaves the non-progressive white matter. This is the most common diagnosis and if you're going to have any one of the three, this is the one you want to have. This has usually occur ed due to some sort of insult or injury to the brain. In most cases, the person was born prematurely. This is not true for Jacob. Some times it can be genetic and/or somehow related to his immune system. If this is the type of abnormality he has, there is no "fix" for it. He will always have it. It's kind of like a scar - it will always be there, but it's up to us to know how to help him along the way (therapies, Neuropsychology, etc).

So, what now? Well, tomorrow he'll have another MRI. The doc wants to verify there has been no progression in the white matter since it has been 1 year since the first one. He'll have another spinal tap. He'll have blood drawn to test for some chromosomal and genetic things, as well as test his immune system. He'll be under anesthesia for all of it. We check in to St. Mary's Hospital at 9:30 and should be done by 12:30 (our time - 2 hrs ahead of CA time).

Here is Jon sitting with Dr. William Mayo and his brother (also a doctor but I don't remember his name!) who founded the Mayo Clinic.

More tomorrow!

Swimming

We swam twice yesterday at the hotel pool. It's a really neat pool totally designed for kids. It's one of the reasons I picked this hotel. It has a kids wading pool only 2 ft deep with 2 water spray features and a lion's mouth slide. Perfect for Jacob. They also have a larger pool 5 feet deep with a big dolphin water slide. Oh, and don't forget the hot tub! There are a lot of kids staying here and Jacob has made a few little friends. We met a family with 1-yr-old twins and a 3-yr-old big brother. Of course, we started chatting with them! We also met a really nice family from Nebraska. They are here with their 4-yr-old Carson. He is being seen at Mayo because last year he had a brain tumor and had brain surgery. My eyes well up with tears just thinking about something like that. He is such a sweet and adorable little boy! He doesn't really talk. Mom says he only says a handful of words. Him and Jacob have a lot in common... speech and language therapy, IEP's, developmental delays, behavior issues, they both LOVE swimming, etc. It was great to talk with another mom who knew exactly what you've been going through. They are here all week too so I'm sure we'll get more opportunities to chat with them.

We'll be heading to the clinic in about 2 hours. Jon and I are doing well. Just trying to find fun things to do to keep busy. I even got a 2 hour nap in yesterday! I can't remember the last time that happened! Oh, and did I mention we all got up at 9:20 this morning?? I guess we needed to catch up on some sleep. We've been talking to Fran and Amy every day... some times twice a day. Megan, Ryan and Dylan are doing great at home. Enjoying playing in the backyard, going to the park and keeping daddy's plants watered. I miss them so much! We've talked to them each night before bedtime and their little voices seem so far away! Lots of "I love you's" and "miss you's" but they sound like they are doing great. Keep up the good work Grandma and Auntie! Love you guys!!

I'll post more later today after our visit with the doctor. This is the appointment I'm most nervous about. She'll review all the medical info we have and either tell us what's wrong or recommend further testing. Keep those prayers coming! Thanks everyone, we are feeling your love and support!