a good appointment

We (Me, Jason, and Evelyn) took Jack to see the orthopaedic specialist today. The reason for the trip? Jack isn't bearing weight. We needed to rule out hip subluxation. We also needed to view Jack's spine to rule out pediatric scoliosis.
The results? Good! Jack's hips look good. No problems. His spine looks good as well. No scoliosis. However, because Jack has pectus carinatum, we'll need to come back in a year to be sure that the rib cage isn't causing the spine to form incorrectly.

Jack has been cleared to start using a standing frame
for physical therapy, along with AFO's. We have the script for the AFOs and we will be talking to the physical therapist in the morning about what step needs to be taken next.
We're so happy that Jack's hips are fine!

it's here, it's here!

Jack got his new chair today! Here are some pictures!

I just love the new chair! It's completely adjusted to fit Jack, and only Jack. The new chair has a clear tray for play and food. Jack got a kick out of being able to see through it! Sadly, I'll have to call the company to get the tray replaced. I took off the protective film, which is supposed to keep scratches away until use, and there was a large, deep scratch on the other side. Shouldn't be a problem. . .

wiggles and giggles and messes

So the past week, or two, have been questionable with Jack. He keeps having these screaming fits, day or night. Most of the time, well for the past two nights, it's been gas. Last night Jack projectile vomited all over me around 12:30am. He seemed completely out of it, in a different world, during the vomit and directly after as well. Then a few minutes after the interesting event, he was all wiggles and giggles. Jack spit up once today and this evening he's been screaming and terribly gassy again.

On the up side of everything, Jack says "mom, Bob, BoBob", and tonight it sounded like he intentionally repeated the word "bed".

start light. start bright.

This evening the four of us took a trip to Lowes and Kroger. Jack was acting like a little 18 month old! I was soooooooooooo cute! He was sitting in the shopping cart, swinging his legs, laughing, pestering his sister, babbling. . .Such a pleasure to have him with these little moments! I took Jack to the zoo this afternoon with all of his cousins, aunt, and grandma, and of course his sister. He wasn't very comfortable at all. He was sweaty, uncomfortable, squinting, kept covering his eyes. And it's not like he'll keep sunglasses on. And when its too warm, I can't keep the hat on his head too long. He seemed to enjoy looking around, but was also obviously uncomfortable. Luckily, he didn't scream much at all!

On the way home Evie saw the first star and I recited the poem. She then made her wish. "I wish that Jack will get bigger soon!" She's such an angel.
We read a wonderful children's book the other night.

Evie has heard the story before, but she was especially interested with lots of questions this particular time. The book is titled "We'll Paint the Octopus Red." Here's the notes from the book so you understand what it's about.

As six-year-old Emma anticipates the birth of her new baby brother or sister, she vividly imagines all of the things they can do together. They'll go to Grandpa's farm to feed the calves, ride in the back of the mini-van making faces at the cars that go by, fly on airplanes, and someday, they'll even go to Africa on a safari to see elephants and rhinos. And she can't wait to go to the art festival and show the baby how to paint a picture with a rubber octopus. Emma feels ready to be a big sister!
Then when the baby is born, her dad tells her that it's a boy named Isaac, and he has something called Down syndrome. As her dad shares this news, Emma senses his concern and wonders if Isaac will be able to go on all those adventures after all. While they talk, they come to the conclusion that he will certainly be able to do everything she's imagined. Finally she asks, "If Isaac has this Down thing, then what can't he do?" Her dad thinks about it, then tells her that as long as they are patient with him, and help him when he needs it, there probably isn't anything Isaac can't do.
In this touching story, Emma helps her father as much as he helps her to realize that Isaac is the baby they dreamed of. The book concludes with a set of commonly asked questions about Down syndrome with answers for children and how it might affect their sibling and family. The wonderful color illustrations help make We'll Paint the Octopus Red a beautiful, reassuring book for siblings of children with Down syndrome that's sure to become a family favorite. (Stuve-Bodeen, 1998).

 

I think I'll be purchasing the sequel very soon!

finally. . .some pics!

Here's a quick note with some pics I've been trying to share. Backyard before and after fence.

The terrible carpet that was torn out. Unfortunately, we'll need to have the new carpet removed and replaced, free of charge. . . so bummed about that.

Oh, and that's a picture of Jack in his swimming trunks and top. He likes to blink at my camera flash every single time! I have got to get a better camera!!! I took Jack out to Evelyn's pool and put his feet in. BAD IDEA! "Like I didn't know that was going to happen!"

It's coming!

I received a call from Jack's physical therapist Monday morning. He'll be getting his chair on Tuesday afternoon. The picture above is what his will look like. I'm really looking forward to it! I know we've been borrowing the green and blue Kid Kart Xpress since the end of April, but the one coming will be made to Jack's specifications.

We love our new house. Jack seems to like it as well! He's had A LOT of screaming sessions, but is such a joy to have around. Can't wait to post some pics if I ever get the chance to sit at the computer for more than a couple of minutes!

giggle giggle

We have been in the new house for a little more than a week now. Every moment has been great! I am so happy in this house. I just love it!
I am writing today because I want to share Jack's recent accomplishment! LAUGHING! A true, full belly laugh. Every time I hear it I get tears in my eyes. It's such a wonderful sound. 17 months is a long time to wait for that first laugh. . .a true blessing from God.
I hope to record the laugh at some point so everyone can hear it.

Jack is also playing with big boy toys. He really enjoys his shape sorter Pots and Pans set. He can put all of the shapes into the correct openings with guidance. He can do the circle on his own. He also understands the 'drop it, pick it up' game. His developmental therapist will be happy to hear this!

Bang!

So we had this AMAZING crew of family that helped with our painting and move over the weekend! THANKS! We couldn't have done it without you! And then, Tuesday evening, I got hit on the back of my head with two VERY THICK AND HEAVY closet doors. I don't know how it happened, or even what I was doing when it happened, but Jason ran me to the emergency room shortly after. I didn't get knocked out, thank God, but what a scare. All I remember is hearing this scream and thinking,"oh my goodness, who's screaming like that? Oh. It's me!" I also remember this odd movement-like sensation inside of my head. I sort of remember sitting on the floor by the bed in my room, and then just flashes of events here and there until the CAT Scan in the ER. I have a mild concussion, which I find odd. I got hit on the back of my head but had terrible pressure at the front of my head. I couldn't see straight with my glasses, was very sleepy but couldn't sleep well, and couldn't walk around well. Even sitting upright was a problem. I am much better today but still feel odd if I work too much. There are still times when I can't see straight. I also seem to have moments when I can't think 'right'. I don't like this. Never get hit on the head by solid closet doors.
Jack, on the other hand, is adjusting to the new house just fine. I hope to have some pictures once we get everything straightened. He's had some moments where he just can't be calmed. My mom has been here for more than a week now and has been such a help. She's been fully trained on Jack and his feeding pump. Jack gladly accepts my mom if I'm not around. Phew. Thanks Mom!