Tuesday, April 12, 2011

Jaylie 16 months - vigabatrin month 4

Hello, it's been a while, my apologizes. I started this blog towards the end of March but as many of you know, life moves so fast - days, weeks and months flash by before you realize it...

Jaylie is doing awesome considering she was born @ 1lb 3 oz almost 17 months ago! As a reminder of how good God is and how amazing He is, He has helped us to battle extreme prematurity, Infantile Spasms (a catastrophic form of epilepsy) and cerebral palsy just to name a couple of major mountains we've face in the last 17 months - wow, yah!?!

What's happening now:

Things are well overall :). We are overjoyed to report Jaylie is now crawling, yay! Jaylie participates in physical therapy at home with a therapist twice a week to work on oral eating and mobility. Jaylie was recently selected as a candidate to participate in a two week long daily therapy training for therapists. This event happens once a or twice a year (I don't recall off the top of my head) during which top Dr's and therapists come in and train our local therapists on new training techniques. During this two week therapist training session Jaylie learned to crawl. We can't thank the therapists enough for all their hard work these last two weeks - most of all we can't thank grandma Debbey enough for taking Jaylie and working with Jaylie during therapy for the last two weeks. This last two weeks of training has been a priceless gift. Many many thanks to all that participated and most of all thank you Lord for giving us the opportunity and helping Jaylie grow and develop!

Jaylie's bubbly personality is starting to come out more. She laughs and gives out full faced smiles all the time. She was the life of the therapy sessions with her positive and infectious laughter and smiles.

Jaylie is not eating yet but is starting to play with solid foods biting and chewing on them - go Jaylie go!

We recently switched a majority of Jaylie's Dr's over to Children's in Seattle based on Dr's recommendations. Our first visit to the children's GI Dr was a huge relief. The GI Dr advised as to why Jaylie has been spitting up, explained all the current available surgeries and medications to address the problem and them explained why we did not need to do any of them. He explained the reason Jaylie has reflux the way she does is due to her stomach not being stretched out due to her not eating and the sphincter muscle at the top of her stomach not contracting to hold her food in. The Dr explained this is a common problem even adults face of which Jaylie should grow out of over the next couple of years, yes years. The Dr said it usually take 2-3 years to completely overcome this problem and that the reflux will start to get better after Jaylie starts to eat solid foods.

The GI Dr adjusted Jaylie's night intake through the feeding pump we have her on to give Jaylie more food at night and less volume during the day. This adjustment has helped quite a bit with Jaylie spitting up.


Jaylie is on the vigabatrin, zonisamide and a couple anti acid medications. The vigabatrin has worked well to control the infantile spasms. We are slated to taper of the vigabatrin in May and June.


Overall things are going well. We thank you for your continued prayer and support. We really value and appreciate your prayer and support! We could not do it without you!

Nathan, Kristina and Jaylie

PS: I mentioned in my last blog my dad was battling colon cancer. He went through surgery during which the Dr's were able to remove the cancer. He now is going through 6 months of chemotherapy. He is in good spirits and doing as well as one can. Thank you for your prayer and support!

Here are a couple of new pictures of Jaylie:

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