Guess what, friends? I FINALLY found my digital camera cable so that I can upload some new photos to this site! Sorry it's taken me forever. I seem to having difficulty keeping track of lots of things these days!
Ezra is fantastic and cutting more teeth. Definitely molars on the bottom are coming in even though he still has no teeth on the top. Maybe dentures are in order?????? (ha, ha) Surely he'll be able to take a bite of something someday . . . In the mean time, he'll continue gumming things to death.
He still enjoys most of what we feed him and he is still refusing to drink much of anything at all. We had a video feeding study yesterday and learned . . . nothing new. He is using his tongue in "unusual ways" to compensate for the lack of strength and motor control. I am amazed how God is giving him all sorts of "coping mechanisms" along the way. He may not be "developing as a typical child," but he is on his way to independence, nonetheless! We serve a great BIG God, do we not????
Ezra continues to love his parapodium (see new pics) and his scooter board (see new pics). We are continuing to work on sitting, to see if he can sit un-supported or not . . . And, we are working heavily on communication skills. He still has only a few sounds that he makes, yet he is able to clearly communicate most of his wishes! We are just trying to make that "communication" more "socially acceptable", if you know what I mean. For example, we want him to say, "All Done" either verbally or with sign language INSTEAD OF slapping our hands and knocking his food on the floor. Does anyone know any 16-month-old who does that politely???????
On Thursday this week, Ezra has another hearing test and an Upper GI test. The hearing test is just another in our plethora of trying to determine if he is "able to hear well enough to develop normal speech" or, if he is in need of hearing aides. Up to date, I've been told . . . "child cannot be assessed developmentally" -- translation: "b/c your child has Down Syndrome, we can't determine if this test is accurate for him because he may be just too delayed for it." HOWEVER, the Developmental Pediatrician and I are in agreement that this "excuse" is a "cop-out" at this point! Pray for me this Thursday as I may have to firmly, yet lovingly, assert . . . "IF MY CHILD IS FAILING YOUR HEARING TEST, IT IS BECAUSE HE CANNOT HEAR!!!!! NOT BECAUSE HE HAS DOWN SYNDROME!!" I wouldn't want to step on anyones toes, ya know . . . . but I will be like a Mama Bear ready to pounce on her cub's foe, if need be . . . in Jesus' name, of course :) :)
The Upper GI test is so that we can take a better look at his swallowing/reflux issues and get a handle on the "degree" of his reflux. It seems that the only explanation for the fact that he is refusing liquids (even thickend like pudding) is that his reflux is just horendous. Please pray for some definitive information in this area.
As time goes by, I learn more and more about the idiosyncracies of Down Syndrome. This week, I learned that kids with DS commonly have sensory issues in their hands. I've been seeing this, but didn't have any confirmation that what I was seeing had validity. For Ezra, this means that he doesn't like "holding hands" and he often acts like he wants to touch something and then when you try to give it to him, he immediately pulls his hands back . . . way back! He won't hold his cup to drink (not that he likes to drink, anyway); he won't touch food, he won't hold a spoon, etc, etc.
Today, we got Ezra to tear a kleenex into pieces and we thought that was a major milestone. Imagine . . . having to TEACH your child to destroy a box of tissues left at his disposal . . . it amazes me that I've worked 13 years to try to get my kids NOT to do such things . . . and that I may be working the next 13 years just trying to get Ezra to do it. It's enough to make a Mama crazy!!!!
What choice do I have but to say, "His ways are higher than our ways." "His strength is perfected in our weakness." "I know Whom I have believed and I am convinced that He is able to guard that which I've entrusted to Him until that day." Come quickly, Lord Jesus!!! I'm ready to go home!
