Monday, January 25, 2010

An official update

It's been a while since I've updated.



Last week we had a follow up visit at Phoenix Children's Hospital. This was not a normal clinic visit, but a study visit - regarding the hypertonic saline study Samuel is participating in. We were expecting the normal news and events so you can imagine the surprise when the scale revealed a weight loss. A 0.6 pound weight loss. Now, for myself, I'd be delighted to lose this amount of weight and it's not difficult for me to do so. It's also that much easier for me to gain it back. In one afternoon.

But it's not so easy for Samuel. In fact, I often feel like we fight for every ounce he gains. I remember when he was stuck at 22 pounds for about 6 months. (Not sure if it was exactly 6 months but it sure felt like it!)

That very day I came home and started in on the "pink" milkshakes. He likes drinking strawberry milk so I enjoy making him some strawberry milkshakes. Yes, I eat vicariously through Samuel. Gotta problem with that? :)

He must have picked up on my stress (who wouldn't have?!?!) and almost immediately started refusing his ezymes. Talk about frustrating! What good is eating high-fat/high-cal if he can't process it?

Then, it wasn't too much later when the only thing he wanted to eat was Cheetos. Boys can't live on Cheetos alone but he sure tries. Luckily, the enzyme and eating strike has lasted only a few days but I'm feeling like we can't afford to lose any days! We have a clinic visit on the 26th where his weight will be taken and it will count then. I'm fearful we are having a repeat of the last weight plateau. He had a pseudomonas infection then. I *really* hope this is not the case. Aside from our high co-pay for Tobi, the time it takes to administer is just a little over our sitting-still time limit. It takes about 25 minutes just for that one medicine to be administered, making his twice-daily routine well over an hour.

Besides all the medical updating, Samuel is a fun two year old! He is such a sponge and is learning more than I realize. He says things like "I don't know!" and "What happened?" The other evening, as we were driving, Kevin and I realized that we were in the wrong lane to pass straight through an intersection and would have to sit at the light for another cycle. Kevin said "Oh, fiddlesticks" I said "rats!" and Samuel chimed in from the backseat with an appropriately and equally disappointing "Oh MAN!" And it was at that moment I was thankful we don't have, nor generally spend time with, potty-mouths.

He is also really enjoying spending time with me in the kitchen, which has become more frequent since my recent, uh, status change. Working at home means working in the kitchen! When he thinks something is happening at the stove, he wants to be held to see what's going on. And let me say, in addition to being dangerous, cooking with one hand is just about impossible. So last night I got smart. I brought his high chair in the kitchen, set it a few feet behind me, gave him some cereal to throw in the floor for the dog snack on, and he sat (mostly) in the high chair and watched me make dinner so I could cook.

Lately we've been having trouble with him not wanting to sleep and not wanting to stay in his bed. Just one more reason I have yet to transition to a big-boy bed. Last night, midnight, this was happening again. Kevin and I wanted to go to sleep and Samuel wanted to play the piano/our foot board and sing us some songs. A few nights ago I attempted an new strategy and it worked then and again last night. If you are having issues with your little one not wanting to go to sleep, I highly recommend trying it. Instead of saying "You have to go to sleep now" I said "Mommy and Daddy have to go to sleep but you can stay up as late as you want. You just have to stay in your bed. What story would you like me to read to you before I go to sleep?" Last night we read about Hermie, he had some toys, I left the closet light on and was only awakened a few times by a singing, playing little boy. It was wonderful.

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