Sunday, October 10, 2010

The Good with the Bad

We had our 2 week clinic visit on Monday, the 7th....what to say, what to say...
Perhaps these pictures can illustrate how the doctor's visit went...





6 centimeters of growth so far!!!!
Okay, so let's just say Jeffrey was not a happy camper. He's been crying and anxious at the mention of a shower or pincare. He's also been crying going into therapy at home.
We mentioned this to Dr. Standard and his PA. One idea was to try the diazepam (med similar to valium). We were a little leery about giving a child valium, but we decided to try it. It has really helped him be his silly self. He still cries loudly during showers and pincare, but he's able to calm himself down more easily.
On a knee flexion note, aka "the good', he got 70 degrees! Awesome!
However, "the bad" is that his hip extension is -35 degrees. He basically can't lay flat or stand up straight. He arches his back and bends at the hip when standing/walking or lying down. It's painful, but we got rid of the crying knee hangs in exchange for crying hip stretches. We have belly time and the bugger knows just how to compensate by twisting a little so it doesn't hurt him. When he does that though it doesn't stretch his hip.
So...good that we got 6cm growth. Good that we are estimating like 4 more weeks of turning. He have slowed down our turns from 3 a day to this week alternating 2, 3 turns. Next week all 3's. We are doing this in hopes that the bone will fill in and consolidate a little easier. Dr. Standard related it to pulling taffy, if you pull too fast and don't give it a chance, the taffy gets flimsy and thin. We don't want taffy bone.
Not good is the hip extension or lack thereof. Plus, not good that we had to start antibiotics AGAIN yesterday for the pinsite infection at his knee. It was red and warm to the touch. Ugh!
He continues to be losing weight. The good doc recommended letting him eat when he wants. We usually only let the kids snack once between lunch and breakfast. Now, anytime he mentions he could go for a snack, we suggest crackers with cheese, or pretzels, or animal crackers...eat, boy, eat.
To sum it up, our goal is to calm, straighten, lengthen, and fatten our big boy!

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