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Wednesday, January 27, 2010

BIG NEWS!



I think that it is safe to officially say out loud to the general public now that the boys are finally Sleeping Through the Night. They go to bed between 6pm and 7pm and get up like clockwork at 5am and no one makes a peep all night long. It's a beautiful thing. Hopefully it will improve with them sleeping at least until 6am on a regular basis, but for now we're pretty happy with the way things are going. It's going to take Drew and I a very long time before we feel like we've finally caught up with our own sleep, but it is much better now.

And now for the really big news:



Evan has officially been discharged from Physical Therapy!

Because he has met his gross motor skills at an appropriate level within two months of his actual age Evan no longer needs Physical Therapy services. At his discharge we went over the last six months because it was the regular six month re-evaluation of services to see if the boys have reached their goals and for PT he's right on track. Six months ago, at the age of 16.5 months actual age and 13mos adjusted age, Evan's gross motor skills goals were to roll over in both directions, push up on his arms to a crawl, rock back and forth while in the crawl position, sit up unassisted, and pull to a stand. Two months after that evaluation was written Evan was pulling to a stand, free standing, and walking across the room without assistance. Today he actually got air under both feet at the same time while jumping, attempted to do a somersault on his own, climbs on furniture, crawls through long tunnels, and runs at every opportunity even if it's only to go a few feet. He can do anything that a kid his age should be doing, with the exception of things that are just not within his reach or at a height to tall for him because he's still very short for his age (in the 10th percentile). He got a little award from his PT and a sweet note congratulating him on all his hard work. I love Miss Linda, the best PT ever!

Evan is continuing to get OT services every week and will add Speech Therapy services twice a month because while he's saying words, he's not imitating as much and as frequently as we would like to see, and is also allowing Cameron to speak for him which delays him further.

Cameron has been discharged from both Physical Therapy (back in December) and Speech Therapy for the purposes of communication but not for the feeding aspect though the OT will work with him on communication as well.

We are no longer going to be getting ST for communication because if you've read my earlier posts about all his new words, there is no concern about his social skills and his ability to communicate, either by talking or gestures and signing. He's a veritable chatter box and sponge.

Both boys are eligible for continued EI services after the age of three, for right now based on their current track, and we are very lucky to live in the county we do because there are a whole lot of programs to participate in that are free and fun and very close to home. And both our OT and ST will be visiting the feeding clinic with us to observe the techniques that are used so that once we graduate from that program we can continue to work with the boys on improving their ability and desire to eat.

It's been such an incredibly long road and I am overwhelmed with the emotions and exhaustion we have all been dealing with from the last 20 months. I was sure for the longest time that there was irreparable damage done to them from their prematurity, and while we're still not sure of that, we are sure that they will walk and talk and interact in society on a normal scale without concern. It's one huge boulder lifted off my shoulders. More Happy Tears.

But to cap off a good day, I got to listen to Cameron talk himself to sleep saying "Mommy. Tahm-ron. Eban. Daddy." over and over. So incredibly sweet, especially since he gets confused when we ask him "What's your name?" and he responds by patting Evan's leg saying "Tahm-ron." then patting his chest and saying "Ebon." Still not exactly sure what his name is. LOL!









That was then... Fresh from the NICU and we were pre-bottling the boys food for the next 14 hours. Each bottle had to be meticulously labeled for each specific feeding for each baby and all the different medications they were on. Literally every bottle was different.


This is now... We've switched the boys from Neocate to Peptamin Jr premixed formula. It comes in cans which totally brings back memories from when the boys were little and had just come home from the NICU and eating 2oz every 2hours.



My poor little sickos sleeping peacefully.









Since the boys were sick we've had a complete setback in their willingness to eat and put food in their mouths beyond milk. And even the amount of milk they consume is much less now too. On Sunday night we went out to dinner to Red Robin and I let Evan have my fork covered in blue cheese dressing. He put it to his lips and must have liked it because he refused to give up the fork and attacked it when I put more dressing on it. I had to take a picture. But then we noticed that his face was turning splotchy and bright red and his left eye got a little puffy.


This is what it looked like about 30min after he'd eaten and smeared the teeny tiny bit of blue cheese on his face. It was completely gone about an hour later. We've decided that this was just a topical reaction to something in the blue cheese dressing and it seems to be pretty common among other children, especially with ranch dressing. Honestly, if he wants to eat it, then I'll keep giving it to him. I'll just keep a washcloth handy.




And here's a video of Cameron sampling the chocolate milk from Drew's Coco Pebbles cereal on Sunday morning. It's a beautiful thing.

video

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