So I referred to a "motivational" talk from the pediatricians office last time I blogged and the family meeting that ensued. At some point after that we decided to switch Simon to a higher calorie formula. We switched from Complete to Boost. The boost offered us a flavor and also 360 calories per 8 ounces rather than the 250 of complete. The results the first day were sensational, Simon was opening his mouth wide and keeping his hands out of our way. He finished one of those in 15 minutes, which was a feeding miracle and record for us!! That day he had 1800 calories!!! Things continued on pretty good for about 2 weeks maybe...but then the feedings got hard again.
We had been battling the pressures we were feeling to get a feeding tube from every angle. Finally after a few months of feeding him Boost only (3 a day) and prunes (we have to give him this to balance the constipation that comes from the boost) the feedings weren't going much better. We were still spending too much time and now, instead of spending time getting purees of good stuff (the avocados, coconut oil, nuts and other protein sources, fruits, veggies, supplements) we were spending almost the same amount of time and only getting, synthetic food in him....sadly with lots of sugar (that is what helped him like the taste!) So the idea of getting him the feeding tube so that we could actually blend REAL food and put it into his belly with NO STRUGGLE started to sound great.
So we decided, with much grief at first to get him a feeding tube. So far, he still doesn't have the tube because of bazare illnesses striking each time we have had it scheduled. But currently, he seems pretty healthy and we have the proceedure set for July 11th. Please pray that we are able to get it done that day. Also pray for wisdom for us as we look into spending a large chunk of money on a blender that will liquify things for us.
In other fronts, Simon oddly, while taking a break from most therapies (we only go once a week now for 30 min of speech and 30 of OT) is in a developmental heyday. He is now rolling over on the floor onto all fours. He likes to stop there and look around a bit and giggle. I think he is pretty proud of himself. He will also scoot over to things he is INTERESTED in EXPLORING. (I put those in all caps because those statements are HUGE) Yes I just said he is showing interest in things and exploring!!! Right now he will grab toys and bring them up to his chin, I think he likes to check to see if ANYTHING will vibrate for him as vibrating objects bring him comfort and calming like nothing else. He is also in an oral phase. He will grab our finger and pull it into his mouth. Sometimes he will suck on it, which is huge since until now he has shown no ability to drink from a bottle (perhaps now is the time to see if he will take a cup with a straw??) He has also bit down on our fingers but most of the time he just wants to show us how to flick his lip. When he was at the orphanage he spent a lot of time in the crib alone, as you know, and he played with his hands. One of his things to do was to play with his lip. So he finds it amazing that he can show us how to play with his lip and while we are doing this for him, he has both of his hands free to wring (he rubs his hands like a devious chartoon character). It brings him great joy....it makes me happy that he has "communicated" his desires to us and also that he is asking US to bring him comfort....which I think is a pretty huge deal.
In April, while Simon was under for some testing, we checked his hearing again. (we had done a few tests that were always inconclusive while he was awake) Well, this time we found out a few things....some of which were hard to hear. Firstly, they thought he might have liquid behind his ears because they couldn't get a reading, so we gave them the go ahead to put tubes in his ears. Well, it turns out that wasn't the problem. The problem was that for years he had ongoing ear infections, most likely from being fed on his back. The ear infections were never treated, and as a result, created "resessed pockets". At this point they told us that this could lead to a cyst in there that would lead to an infection in his bone that would cause hearing loss. (AHHHH, I did not see any of this coming) So that was hard, but fast forward, it turned out fine on this front, he didn't have a cyst, he didn't have the bone infection hearing loss. But then when the test was complete the audiologist came in and told us the "great news" that our child was a canadate for hearing aides, oh, and she mentioned that he wasn't hearing much of what we were saying to him. The pictorial graph showed us he could hear motorcyles, loud pianos and airplanes. Her exctiement about the hearing aides was very tainted for me, as 1. she had never met Simon awake and was saying things that would NOT work about how they would set the hearing aides up. (I was being way to practical and thinking, how would he ever keep them in, and how could they possibly test them?) 2. She just told me my child had profound, permanent hearing loss....that was a big deal to me. At this point I thought it was alll related to untreated ear infections....insert anger and grief and frustration at the NEGLECT during the first 8 years of his life. However, we still don't know, he could have been born with hearing loss....or we could put this in the pile with all the "incidents" that happened, you know the "incident" that harmed his brain, and the "incident" that is causing his right eye to die....The not knowing is hard for me. SHould I be angry at a person for beating this helpless child?? Or should I chalk it up to birth defects? Does it matter....?
Okay, so anyway, the good news. Simon got hearing aides last week and he LOVES them. He LOVES having them in and while we haven't seen huge strides in the understanding or speech department, and really we shouldn't for like a year, he is chattering at lower volumes so we KNOW that he is hearing himslef and I think he is looking at us like he is hearing more as well. I forgot to add above on his devleopmental heyday, that Simon has been tracking us with his eyes and "tuning" in on what is going on around him a lot more. He is making more eye contact and people are noticing :) This was even before he had his ears on :)
Last but not least, Simon sat up for the first time EVER. He held himself there for nearly one minute. It was amazing!!
Here are a couple of pictures off this ipad. I will do my best to add some pictures to this post from my computer very soon :)
