Monday, April 09, 2007

Done with the diet

After several days of tossing pros and cons back and forth, feeling frustration, crying, praying, etc. we decided to stop the diet on Friday. I have meant to let everyone know sooner, but the weekend has been busy. In the wee hours of the morning Friday, Micah was awake for nearly three hours crying and screaming for food, we believe. So, we were all awake and after a couple of hours decided “Let’s give the boy some food!” He was much more content and has been since we have been back to our old, normal ways of feeding him.

As you saw in the last posting, it was just too difficult and the drinking was not getting better. We had visions of a continuing pattern of blood draws to see if he was close to dehydration followed by hospital visits for IV fluids...not our idea of a fun way to spend time. We also felt Micah was just miserable because he wasn’t getting enough to eat. After talking with one of Dr. Raja’s nurses on Friday to let them know we were ending the diet she said she felt like we had gone above and beyond, tried as long as we could to stick with it, and that we deserve a reward! She also has suspicions that maybe the diet was not calculated correctly for our little tall boy. She said he should have been hungry, but not hysterical.

Micah has been much happier and energetic since Friday, so it’s good to see him smiling, laughing, and moving around again. He's also drinking just fine now! One thing that’s happening that we feel like is a repercussion of the diet is that he is still getting upset after meal times, even when we KNOW he’s had enough. I think he was getting used to little food and getting upset and so we hope it is a pattern that will soon fade. He has had a huge appetite! I think he’s trying to say “you people starved me for two weeks and now I’m going to eat you out of house and home.” Not really, it’s just amusing how he can’t seem to get enough food!

Another weird thing is that he is starting to throw major temper tantrums at nap and bed time or if he wakes up in the night and we try and lay him back down. He can literally scream for half an hour before he will settle down. When he used to wake up he was just wide awake and ready to play, but not fussy. Anyway, kids are a mystery sometimes!

Thanks so much for your encouragement, prayers, phone calls, emails, etc. We love it. We’ll continue to keep you updated!

Wednesday, April 04, 2007

Hard days

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.