Since my last posting, the days have been long and not easy! I know people are praying because people have told me, but I also sense it and am so thankful for it. God is using your prayers to sustain me in these days! Micah is still not drinking well and as a result we have had to take him to the hospital twice to get re-hydrated. We went last Friday and again late yesterday afternoon. Micah has blood taken every few days, they check it out in the lab and then let us know what his levels are (if he’s too dehydrated, how his blood sugar is, etc.) and then have us bring him in for an IV. It’s such a mystery to most of the drs. and nurses as to why he isn’t drinking. It has been six days since the Topomax was stopped (refer to the last post) and he still isn’t drinking much better. Wayne and I think it’s because he wants food. The portions are very small because of the high fat content, you would be shocked if you saw them (even for a two year old). So, when a meal is coming to an end, he knows it and starts getting upset. He starts peering into the container and realizes there isn’t much left. It’s very hard to take; he cries before ( because he’s hungry) and after every meal (because he is still hungry) and sometimes I cry too.
We’ve been told it takes the stomach a week or two to adjust, but one nurse also told us it is NOT typical the way he is behaving and getting so upset. He cries a lot and doesn’t seem to be as happy. I’ve been thinking about how since I was a small child, my mom, Mom Johnson (mom's mom), grandma Whiteside, granny Johnson, and now my mother-in law in recent years have always wanted to make sure I’ve had enough food. There are many other women in my life who’ve done the same. “Did you get enough? Are you sure? There’s more...” It’s one way of showing love and making sure your children are taken care of. So, now I understand on a small scale even though Micah is only two. It is very painful to know he is hungry. I don’t know how much more I can take. I feel like I have to decide, do I want to starve my child, or do I want him to have seizures?
So, I would ask for wisdom for Wayne and myself how much longer we should continue this diet. We have only noticed one seizure in a week, and that was yesterday. Honestly, if he doesn’t start drinking better, we won’t be able to continue because we can’t be going to the hospital twice a week for an IV, it’s hard on him and hard on us.
I know things could be much harder, our child isn’t terminally ill, or anything close to that. I know God is giving us grace and strength in these days. I read Psalm 27:14 last night “Wait for the LORD; be courageous and let your heart be strong. Wait for the LORD.” Thanks for praying for us as we wait on Him.