Quick Update & Pictures

All is good... just a quick update and I wanted to share some pictures. I love this one taken over the weekend of all the kids.
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Lucas has a nasty cold that he graciously shared with me this week, but with any luck it will not turn into anything more in his lungs. A little wheezing and we're on nebulizer treatments again, but not enough to head to the doctor just yet.

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One new thing... we added speech/feeding therapy recently to his long list therapists and doctors. She did two feeding evals, and will come back in early June to do a speech eval. For feeding, he needs some work but she said he improved within the two weeks she saw him. I think her description of his chewing was, "the skills are there, but he's not very efficient." Apparently he moves the food too much from side chewing to smashing it against the front teeth to breat it up, which is tiring him out... and thus, not eating as much as he probably could. We are also trying to get him onto the sippy cup or straw, but that has been very slow going. I think I have every brand of sippy cup that is made. Bran always makes jokes when I bring another one home, "do we really need another sippy cup?" But I haven't tried this one! It seems like everything with a micro-preemie truly has to be "taught" to them. Not just instructed or shown... but weeks of "teaching" the skill. Nothing seems to come easy. She brought a special bottle and straw last week (which is actually an old honey bear bottle) with a very hard tubing as a straw that is actually used for aquariums (the things they come up with). We are supposed to teach him by squeezing some in his mouth as he puts his mouth around the straw. He actually put his mouth around and sucked on it the first time I tried it and I was so proud of him... but then smarty pants figured out that he didn't like the liquid, so he's not falling for that anymore. He hasn't done it since, he just bites the straw now. Our double challenge with the drinks is that he only will drink HOT Pediasure... no room temp or cold drinks for this prince. So, he's not keen on water, or juice, or regular milk. We've always been instructed by our GI to only give him Pediasure for the calories, so this is the first time he's trying new things. She wanted me to try a milkshake, but he is very sensitive to cold things, I can't even give him fruit that is really cold. ...She's never seen his reaction to ice cream when we've let him try it! He's coming along though, I have no doubt he'll get the hang of it. After all, he's only been on real table foods for a couple of months.

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We started swimming lessons this past week, aquatics can be great for a weak trunk. Everything he's working on right now is held back because of his low tone in his stomach and back. Several months ago we tried to find a PT that specialized in aquatics, but believe it or not with all the resources here in DC/MD/VA, I couldn't find one! My friend tried to get us to join her with her daughter at these swim lessons, but I just felt that he wasn't strong enough physically for a non-therapeutic class, or ready for all that sensory input--from the water and the other children (he cries a lot now when he hears loud squeals from other babies due to his sensory/neurological issues). But, now I feel like he's ready and he seems to like it. I would call it more of an acclaimation class than swim lessons, singing songs and getting him familiar with the water. And guess what... the instructor is not a PT, but she has years of experience working in aquatics with special needs children. She and I talked for awhile about his challenges and she was kept telling me how great this will be for him in multiple areas. How great is that to have stumbled an instructor that understands what we're dealing with? Sometimes things just have a way of working out!

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The coolest part of this is that when I hold him on his belly and tell him to "kick," he does and he get so excited! He really kicks hard, which is incredible. Since he's still a long way from crawling or walking, its awesome to see him use his legs the right way in the water... he kicks perfectly, right-left, right-left. Its been confirmed that he has triplegic Cerebral Palsey, meaning three of his limbs are not functioning normally due to neurological damage (the level we don't know yet, hopefully we learn that it is on the mild side). We have learned that CP is a VERY broad term to mean only that... that "typical development has been disrupted by a neurological injury at birth." It doesn't automatically mean wheelchairs and leg braces, it is a term that has a very large spectrum. I used to relate CP to only severe situations, but many children with it do walk and go on to live typical lives. This is why all these early intervention strategies are SO, SO important the first few years of life when the brain is mapping itself. Everything we are doing now in these first 3 years has so much influence on his future. I guess that's why I've become obsessed with finding the best methods and resources in this field! :-)

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I'll end on a high note... his left arm continues to improve. Its just simply amazing to stand by and watch the progress as it happens... you can see that new connections are occuring in his brain around the missing tissue. It used to be that he needed the air splint on to start using the left. Now, when you say "where's your nose?" He starts to point with his right, but as soon as we say, "no, with your other hand," he stops and uses his left hand to touch his nose! He does this for many of the others too... head, ears, eyes, and mouth. He doesn't have the fine motor skills to "point" yet, but he raises the back of his hand to touch the body part. It goes without saying, SO proud of Little Man!
I should mention too that its heart warming to watch the kids get excited at his accomplishments. While they don't know or understand the complexity of his situation, they understand that he has challenges and is behind the other babies. They are so supportive and encouraging to help him learn and genuinely excited when they see him doing something new, like using the other hand. Anna called me yesterday at work just to tell me that when she says "Lucas, roll over" that he does it (she hadn't seen it before). And I can hear Abby so clearly as I type this, in her high pitched voice saying, "Good job, Lucas! Good job!" She is also the first one to run up to us to say "I just got Lucas to do (fill in the blank)!" Or, Nicholas standing him on his feet (something new Lucas is also doing, for about 10 seconds at a time), and singing "You're standing, You're standing!" (Exactly like he hears me sing it, and with the same excitement!) We're pretty lucky that they are all so good with him. I know he is getting a lot from their stimulation and he absolutely lights up when they walk in the room! The more chaotic it is with them laughing and carrying on with each other... the more he giggles at them. He thinks they are all hysterical.

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Ok, not such a "quick" update, but here are some pictures from Mother's Day weekend and last weekend...

Lucas and I with Matt (my brother), Misty, & Lyla

Remember my last entry talking about Lyla making

Lucas crack up by jumping? Check out that face!

Playing with Grandma

When exactly did my boy turn into a toddler?

Getting some sugarBuddies

There he goes again, jumping does it every time!Playing with Abby

LOVES to be thrown!