It's Kristen here, sending you...
Words from Jill:
This morning bright and early we moved up to the epilespy unit. All the nurses welcomed Matthew and told us how happy they were to see us again. No new med changes were made, but his IV's were all unhooked (the line will stay in, and it is flushed with heparing to keep it patent). Without the 3 lead heart monitor, the pulse monitor, the oxygen tubing and the IV tubing, I was able to cuddle my baby for the first time in 28 days. Sure, I've held him, but not comfortably. We walked around the unit, rode in the stroller and got plenty of snuggle time. We had the dietician come in today, and tomorrow is the big day. Tomorrow we start the ketogenic diet!! I am so ready! All his meals will come from dietary and be measured precisely. I will go to education classes tomorrow for 5 hours to learn the ins and outs of this diet. This is a very precise diet, and I have a lot of learning to do. This diet requires strict following; and will even be restrictive to what lotions, toothpastes and baby wipes we use. I will be able to post more tomorrow about what I learn. Here's hoping to a restful night.
7 comments:
I prayed specifically that you will have a clear mind to take in all that information tomorrow.
I am still blown away by your use-to-be routine for Matthew's well balanced nutrition. I know you will do a great job at following all the instructions for this diet so well. You are one smart lady!!
I miss you and Matthew terribly...more so as I come to reality that your planned trip back here is just around the corner, and most likely won't happen now. I'm keeping a positive attitude though. With all the prayers going up for Matthew, I am convinced God is working things exactly according to His will. There must be a reason for all this. Right now, my biggest prayer, more than wanting to see you again, is for the Soldatke family to be together at home. That's most important.
Oh and I think Steve and Mike enjoyed their xbox time together. I heard Mike talking to him about doing it again. I decided that this is a very good thing for you and me. See, if the boys spent hours playing video games, they can't say a word to us about our hours of phone conversation anymore. It works out splendidly. :)
Love ya Jill!
I am so glad to hear that you are back on the epilepsy floor! I am praying for you to be able to take away everything you want tomorrow about the new diet! I know you hear this alot but you are a great mom doing a great thing! I hope you know readying your words everyday has truely touched our family!
It is a hard diet to follow....but with dedication it can be done.
Will he be on Ketocal formula? Will insurance cover it?
I hope that all goes well as you start the diet, that you have a clear understanding of the ins and outs of it, that Matthew won't mind the fasting part too much, and most of all that it works!
Sweet thoughts from Washington....
i am so relieved that you are able to cuddle your boy again! 28 days is too long with out a snuggle. Prayers going out for a smooth transition to the new diet. Its ounds complicated, but I am confident that you can do it!
Lots of good news! yay! Can't wait to hear all of the info from your class! We are praying for all of you and rejoicing that there have been such positive updates :)
Yippeeee! It's great news that he is stable enough to be moved - and it's probably a lot more comfortable there for Mommy too -PICU's are not exactly spas :-)
We will certainly pray that the ketogenic diet will work wonders for Matthew.
That snuggle time you had with Matthew was well overdue and I am sure it felt great. I pray that the diet goes smoothly.
Diane, Tyler's mom
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