Saturday, May 21, 2011

Jaylie - 18 months - Vigabatrin Month 5

Jaylie is doing well. She is crawling around a lot, very talkative, making lots of different audible ah, ha, ma, na, da kind of sounds with an occasional dada, mama, nana but no real word association yet, that I have seen.

We went to Children's hospital at the end of April to switch over Jaylie's care to Children's. The visit went very well. The Dr's are great and very through. We are really pleased with Children's.

While we met with the neurological Dr at Children's, he gave us some very good advice and some encouraging reminders.

One of the key points I took from the neurologist at Children's was one of his comments on Jaylie's two week intensive therapy session and the results we saw during the session. The Dr advised not to take the two week intensive therapy sessions results as a sign advising we need to have Jaylie in therapy very day to see results. The Dr advised studies have shown what we are currently doing (Jaylie's twice weekly therapy sessions) were more then enough and exactly what we needed to be doing. What I found amazing about these recommendations and advise is it came unsolicited -- Kristina nor I had any discussion about Jaylie's intense therapy sessions nor discussion how we felt about them nor how these events made us feel post completion of the session. The Dr just knew what to say and what issues to address before we even knew they were there -- that is really cool to me and the sign of a someone whom is excellent at that they do.

The Dr advised not to compare Jaylie to other children of the same age. The Dr explained it this way, Jaylie is on her own track in this race. While racing, all the other kids are traveling 100 miles an hours, hitting growth and developmental milestones at certain intervals due to the speed being traveled. Jaylie is hitting those same developmental milestones but at her own space, say like traveling at 60 miles an hour instead of 100 miles an hours. The Dr went on to explain he is more concerned with children that completely stop developing, or start to go backwards. The Dr stated growth and development is a good thing no matter what the pace may be. This feedback from the Dr came not because we expressed any concern with Jaylie's development but came from the Dr's insight into these issues and experience. This information was another very valuable piece of information and very helpful perspective to adopt.

These two keys pieces of information (Jaylie's therapy scheduling and developmental path) were two major issues of which were not at the forefront of my conscientiousness. They were there amongst all the other day-to-day issues we face. The neurologist strategically chose these issues to address at the perfect timing before any negativity or wrong thinking sunk in and started to root. The meeting with the neurologist was very good and crushed some ill thinking before it even started, which I find very cool and awesomeness -- thank you Jesus!

At the end of April, the neurologist advised, from what he could see of Jaylie's development, overall she had matured into the 6-9 month range. He was pleased with her growth and development and encouraged us to continue to do exactly what we were doing with Jaylie.

Jaylie is crawling all around the house now. She is crawling up to things and pulling her self up to stand. She is still a really happy social baby. She's got ton's of teeth. Her attitude and personality is developing more and more each day. She gets frustrated with some not being able to move things or herself around into the positions she wants to at times but is a fighter and ultimately gets where she wants or moves on to something else.

Jaylie is scheduled to end the vigabatrin treatment in June. We meet with the neurologist at Swedish within the next couple of weeks to do another EEG and discuss or treatment plan for the infantile spasms. At this time Jaylie is doing great, growing and developing and seizure free, praise God!

Thank you so much for your prayer and support! It is priceless and most-of-all, effective! Thanks again!

Nathan, Kristina and Jaylie

Some recent pictures:

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