July 9, 2006
July 9, 2006 | Updates
Some weeks, I feel like I don’t know what I’ll write when I update and others, I can barely wait to post. This week is one of those weeks where I can barely wait and I hope I don’t leave anything out!Samuel has been so smiley the past week. Ben kept saying over and over again that all he had to do was look at Samuel and smile and Samuel would smile back. Then it started happening with me and Tom and all the other boys. Now all you have to do is walk in the room or call his name or play with him or pick him up and you get a smile. It is SO AWESOME! And we have been able to make him laugh probably 10 different times this week. If I could wish for something, it would be that that never changes. No matter how hard things are, we can get through them as long as we have that beautiful smile!
This week was a busy one. Samuel was fitted for a different neck brace since the one we originally bought just wouldn’t do the job. The problem is that Samuel does not hold his head still at all. And with all his moving and wiggling, the original neck brace couldn’t hold him and would end up choking him. This new brace is actually a full trunk and neck brace. It will be used while he is in his walker and possibly in his crawler. We won’t use it too often, however, because if we did, it would eventually cause him problems with his jaw from too much pressure on it over extended periods of time.
I didn’t mention before, but I asked for an aid for Samuel while he goes to preschool. The school, of course, doesn’t want to provide Samuel his own aid and said that they would just ensure there were enough aids in the classroom to deal with Samuel and the other children. I told them I was mostly concerned because of his lack of head control, his feeding tube and his inability to communicate if something is wrong. Their suggestion was that he could just “wear his neck brace everyday to school.” Yea, right! First of all, he will have to be watched more closely with the neck brace on because it can choke him if he wiggles out of it and second, it will cause jaw problems if he wears it too often and third, why are we even considering making him uncomfortable the entire time he’s at school just so it will be easier and less expensive for the school (i.e. government). Well, enough said. I’m afraid it will be a bit of a fight to get what we want, but we’re getting used to that :).
I took all the boys to the dentist this week. No cavities for anyone! And Samuel actually let the dentist clean his teeth. He cried a little, but he let him clean them. That was a miracle in itself. And I was so worried he had done a lot of damage to his teeth from all the grinding. But strangely enough, Ben’s teeth are much flatter than Samuel’s! (What?) Apparently, Ben grinds his teeth much more than Samuel does and I had no idea he did at all! So the dentist said that Samuel’s teeth look good just like the other boys. Yea!
We also let Samuel try out a motorized wheel chair this week. They are going to bring it to our house this coming week. They will fit it with a switch that he just has to push to make it go forward. It will be interesting to see how he does with it. I think he will really enjoy it. But regardless, it is much more comfortable for him than the wheelchair the hospital originally loaned us. We don’t even use that wheelchair because Samuel constantly picks his head up off the headrest and drops it back behind it. And he is constantly pushing against the footrests and I’m afraid he will hurt his feet. So a new comfy wheelchair he can chase his brothers with should be fun!
What else? Well, each and every one of Samuel’s therapists said this past week that they have seen a dramatic change in him. He is smiling more. He is trying more. And he is progressing more. He is really, really trying to crawl. He is really, really trying to hold up his head. He is making more sound with his voice.
And he is starting to push through his legs when standing up. The other day, I held him up like you would a toddler trying to learn to walk. I’ve done that many times before, and he would just arch his back and posture. But that day, he stood there (obviously with lots of support). So I bumped the back of his foot and he took a step. Then I bumped the back of his other foot and he took another step. We went halfway across the patio and then he did it again later and another day also. It wasn’t “pretty”, but he was trying to walk. Amazing. What else? No seizures. I did not see one seizure this week. You know, I might wish for those to never return as much as I’d wish for the smiles to never disappear. It’s a toss up :)! And he is getting better at eating. Not major strides, but little ones. He watches us eat like a hawk. So I ask him if he wants some, and he will smile. Then I say, “My turn,” and I take a bite and show him how much I’m enjoying it. Then I say, “Your turn,” and give him a very small bite. And amazingly enough, he tolerates it. And he’ll tolerate 4 or 5 small bites in a row before he gets upset. Those are huge strides for him!Both Samuel & Nathan are still sleeping well. Nathan wakes Samuel up during the night sometimes, but Samuel will just sit and chat with himself until he falls back to sleep. The other day, Samuel was laying in his bed, looking in the mirror, talking to himself and smiling at himself. Pretty cute! And I also saw Samuel this week watching his hand move just like a new baby discovering their hand for the first time. It was pretty interesting.
Quick update on Nathan. Anyone who ever worried he wouldn’t be able to eat enough was crazy. The kid is always hungry. He now weighs 6 lbs 6 oz (up 6 oz from last week). He does spit up more than he used to, but maybe his eyes are just bigger than his stomach :)! He has peed and pooped on me this week. I have officially declared myself as in the “P zone”. If I’m not being peed on or pooped on, I’m being puked on! Between Nathan and Samuel, that’s my life and I actually love it. (Pretty scary, huh?)
Samuel loves Nathan and watches him closely. He loves it when you put Nathan right up against his face. I tell Samuel he’s “holding” Nathan when I do that and Samuel seems to really enjoy it. And I have a little sleeping buddy at least part of every night because Nathan gets lonely sometimes, I guess :).
Sorry this update was so long. There was just so much to tell. Keep praying! We are seeing so much progress, pray it continues. And especially pray that Samuel will learn to crawl soon. How wonderful it would be if he could just be mobile somehow.
Love,
The Jewkes
P.S. Don’t miss the new pics full of smiles!
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