Our son is almost 5 years old and weighs 20 lbs. We have spent almost two years desperately trying to get him to gain weight. Nothing seems to be working for him. For us it's a constant stress in our lives, and alarms us very much. I know CP kids are small, but Eli really needs a few pounds on him for a healthier life!
- Continuous Drip Feeds over 20+ hours (I've been dreading this because Eli is now tethered to a backpack)
- Giving him his fiber in "doses" instead of putting it in his daily formula.
- Giving a suppository every day for a few days, and then giving one if he hasn't had a BM in 36 hrs. Dr. Wahbeh specifically said, "The money's in the poops!" :)
He didn't really want to discuss anything else (like changing formula, finding out what his body digests best, or the Nissen Fundo), until we give Eli a chance to succeed on this new regimen.
We go back the end of July to follow-up. Let's hope he gains weight! And that we can keep his poops a movin'!
_______________________
Tuesday was the BUSY day!
First we saw a Metabolics/Genetics doctor. Upon physical examination my beautiful son has no visible signs of a genetic disorder. He ordered bloodwork and a urine sample....and he'll need a couple weeks to put together his report.
Next, we saw an Audiologist. She did an AOE test....and discovered that Eli has a large mass of wax in his right ear and couldn't get a response from that eardrum. His left ear was fine. He hears. Imagine that!? Of course he can hear...music is his life!
At the end of this appt...it was time for a nap....
We went and found a quiet place by the gift shop and my cousin Love'e sat with him while I went and got trained on the new feeding pump we are using for his continuous feeds. (I'll post more about all that later)
Eli slept for 45 minutes :) When he woke, we went and grabbed a quick lunch, and headed to his next appt - with the Opthamologist - we'll just call him Dr. W, OK?
Oh, my! I had forgotten how different this guy is! He's one of those people who I believe is absolutely brilliant, but totally missed out on getting any people skills!
He said to me, "I don't see that the MRI (done when Eli was about 3 weeks old) shows much"
I said, "All I remember is that is showed his brain damage was deep in his Basal Ganglia."
AND THEN HE ACTUALLY SAID, "Well, there must be more damage than that, I mean..." as his eyes enlarged and he tilted his head, sideways, towards Eli.
Seriously. I couldn't make this up! But, I forgave him because he is very interested in kids like Eli, and is actually writing a paper about them. Unfortunately, he's not really interested in getting the information OUT of them....he's a scientist type who wants to understand the anatomy and inner workings of it all....
...He's calling it SENSORY-MOTOR DISCONNECT. Yay. Another label for my boy.
His professional opinion of Eli is that he is "Locked In" his body. "He receives visual input, but just can't generate motor responses consistantly to give a physical response." "He can't use eye movement for visual accuity". "His brain activity down to his Thalamus may be impaired because his BG is impaired."
Eli doesn't track well. He has a huge delay in responding to requests. It took him 8-10 seconds to make eye contact with the little panda bear on a pencil he was using for tracking purposes.
He doesn't turn his head when you say his name. He doesn't flinch when there is a loud noise. He loves to watch his movies. We have a DVD player on the floor next to him, and a big TV up in an entertainment center. Both have his shows playing on them when he is awake. This is the ONE choice in the world he consistantly gets to make. Which show does he want to watch.
We know he likes a show when he rolls on his side, and hardly moves, so he can watch it. His newest favorite is Curious George on PBS. :)
WE KNOW ELI IS IN THERE. We just need to keep him healthy, and continue working on how to get him out of there!
