Sunday, November 14, 2010

Jaylie - 11 months 3 weeks - ACTH day 36

Jaylie has been happy and active this week. Jaylie has had a couple of mild seizures but nothing major and even more important, Jaylie is not having seizures on a regular nor daily bases.

Though Jaylie is doing well, she still has an abnormal EEG pattern and intermittent seizures associated with Infantile Spasms. What this means is we need to try another method to bring the EEG patterns and seizures under control. There are several options available to address the irregular EEG patterns and IS (Infantile Spasms) related seizures. The two of options we are looking at are Vigabatrin and the ketogenic diet. Any medication approaches we take to address IS will have serious, some being permanent, side-effects. You can read about all the currently documented medications and treatments for IS here: Infantile Spasms (BTW, this link is the most comprehensive site on Infantile Spasms I have found thus... )

We meet with the neurologist on Monday to discuss the next steps treatment steps we are going to take to treat the IS Jaylie is experiencing.

Jaylie's blood pressure is still high, high enough to be seen several times a week by the Dr's and to have to take two different blood pressure medications daily. Though Jaylie's blood pressure is high, it has come down just a coupe of points over the last weeks which is good. We are slowly decreasing the amount of ACTH we are giving Jaylie daily. I believe we have roughly another week of the ACTH and then we are done. If you recall, the pulmonary Dr advised the ACTH has roughly a two week ramp-up period before the individual starts to experience high blood pressure. The pulmonary Dr also advised it takes the same amount of time (roughly two weeks) for the high blood pressure side-effect of ACTH to ware off. So hopefully these blood pressure issues we are battling right now will be complete resolved three weeks from now.

We reach a major mile stone this Thursday. This Thursday will be Jaylie's first birthday! Can you believe it!

It's been 64 weeks (roughly 1 year and 2 months) since the Dr's advised Jaylie's placenta was failing and she most-likely would only last a couple more days and then pass away. Well, here it is 434 days later and Jaylie's very much alive, growing, learning, maturing, developing and living! Within the last +400 days, we have witnessed true miracles and awe-inspiring gifts from God! The icing on the cake being we get to celebrate Jaylie's 1st birthday on Thursday - is that amazing or what!?! God it good! Thank you Lord!

Jaylie's immune system is still suppressed due to the ACTH and so we are not able to do the typical things you would do for a 1 year birthday party but just the fact we have made it to this point is worth celebration is whatever capacity available!

Jaylie is making good progress with eating on her own, making noises, rolling over, sitting up and other motor skill movements.

Jaylie is currently 16 lbs 10 oz.

Over all this last week has been a good week. We are coming to the close of the ACTH treatment and are pleased with the overall results we have experienced thus far.

Please keep us in your prayer as we continue on with treating Infantile Spasms (IS) and working with Jaylie's growth and development.

Thank you all for your prayers and support! They are greatly appreciated and needed!

Happy Holidays!

Nathan, Kristina and baby Jaylie

1 comment:

  1. Hello Nathan,

    I just want to say that I am very happy that Jaylie is doing so well. I'm from babycenter birth club and when Jaylie was born I started following your blog. Then in January, I had my baby, then my computer crashed and lost the link to your blog.

    Just about few weeks ago, I had to ask the ladies at Jan 2010 birth club, and I found your blog again. I read all of your posts since January and I'm amazed at how well she's been doing. She really is a miracle.

    I applaud you and your wife for being so faithful, courageous and strong. Jaylie is a warrior. She's so beautiful.

    I'll keep you, Kristina and Jaylie in my thoughts and prayers.

    Hoso Eggleston