It's hard to believe we've been home with the Pope for almost 9 months now. We're doing okay. Much better than when were facing cancer in March and additional eye surgeries during the summer. I would never want to go back there again. And although Pope lost one eye to cancer, he gained a lot of vision in the other eye, thanks to the very talented Dr. Alex Levin at Wills Eye Hospital.
Pope's progress has been slow, but he is making progress. He is no where as developmentally advanced as we hoped and thought he would be by now. His delays are significant, and as he approaches his 4th birthday, those delays become more and more apparent.
Pope is growing, but not gaining weight. He started out at below the 3rd percentile for height and weight in March. He is now at the 10th percentile for height, but still well below the 3rd percentile for weight. He has not gained any weight, not one single pound since he arrived in March. Our pediatrician isn't too worried. She suggested trying Pediasure, which he refuses to drink. We've got him on a calorie rich diet and are using cream and butter in place of lowfat milk and margarine. He also gets a couple tablespoons of peanut butter at almost every meal. Hoping that will help him gain a little weight.
His total communication skills are better. He will gesture and take our hand to show us what he wants, but he's still not talking. He's trying; we think he "wants" to speak. He's got a handful of words and, if you're familiar with his language, you can understand most of what he is saying. He loves to sing and hum and he can mimic, musically, just about anything you play for him.
His social skills are WAY behind. He's attending preschool at our regular public school in the preschool disabled class. Unfortunately, there is only one other child in the 3-year-old classroom, so it doesn't make for a good environment for socialization. We do love that he's getting physical therapy, occupational therapy and speech therapy several times a week, but he really needs social interaction time as well.
Pope has a new developmental pediatrician at AI DuPont Hospital for Children. Her name is Dr. Jones and we simply adore her! She's very interested in doing what is best for Pope. Next Wednesday, Pope is scheduled for a MRI under anesthesia. I like to limit Pope's exposure to anesthesia as much as possible. I asked his ophthalmologist and oncologist at Wills if it would be possible to do the MRI at the same time as his next EUA (examination under anesthesia) and the answer was "no", due to a MRI machine being a giant magnet and the special equipment the doctors need for his exam. So we scheduled it for next week. That way we can get the MRI done before the end of the year. God knows we've met our deductible many times over!
So, we're forging ahead, trying to better help change the things we can, trying to accept the things we can't. Always learning the difference between the two.
You might be able to get the two tests done at the same time if you push them a bit. Elena has had 3 MRI's and after every one she's asleep for at least 30 minutes before they MAKE me wake her up, which still takes like an hr. She'll be aslseep longer if she's had the IV anesthesia the whole time during the MRI, which happened last time (3rd one) because she moved a little on her 2nd one. While he's out, have them take him to whatever room they need to do the other test. I'm sure they won't like it but if you throw a big enough fit they might do it. (I just noticed when this was posted so it's probably too late now to change things but maybe next time.)
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