Jaime Albert Trost was diagnosed with Right-Sided Congenital Diaphragmatic Hernia at 19 weeks gestation. He was born at 34 weeks gestation on 4/16/09 as a hemophiliac with his liver and intestines in his chest. Jaime had his 1st repair surgery at 23 days old. He re-herniated in September 2009, causing his bowels, kidney and liver to be up in his chest. He had his 2nd repair surgery at 194 days old. Though Jaime still has many medical challenges ahead of him, today he is a thriving KINDERGARTENER who has beaten the odds!

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Friday, December 11, 2009

Boom-bah!

Jaime had quite the restless night last night. He was up from 3:00 A.M. until 7:00 A.M., so this meant that Tom and I were up all night, too. He wasn't crying, just restless. I don't know what the deal was, but I know that we are all very tired today. Once back asleep, Jaime slept until 10:15 A.M., he woke up literally 15 minutes before Ellen (PT) came. I must admit, I am sooooooo glad he slept that long, too because Ellen's patient after Jaime canceled and she stayed for 2 whole hours! :)
Now, some of this 2 hour time period was spent updating Jaime's goals. In the process of doing this, we had to go back and see what goals he had achieved. This didn't start off so well. As Ellen read the list of goals we were both saying "no, nope, not even close...etc." So, when writing new goals, we decided to "play" with Jaime, while doing so, he must have been listening to Ellen and I because he was making a liar out of both of us.
When put on his tummy, he extended both arms and "held" this position for a long period of time, then rolled over onto his back and laughed. We thought this was funny, I was so glad that I had my camera close by to capture him on "all fours" and just after he rolled over.

Jaime on all fours with extended arms.

Jaime after he rolled to his back.

Repositioning Jaime on his tummy for a quick cell phone picture to show Daddy.

After the rolling thing, we went back to writing new goals and one of them is sitting. When Ellen wrote it, we both kind of laughed, knowing full well, this won't be happening for a very long time...again, Jaime made liars out of us! And again, I had the camera close by to get my Mamarazzi milestone shots! :)

Like this, right?!? HA! I LOVE the face! Ellen said this is Jaime's "if I do it, Ellen, will you leave?" face.

Ellen holding up a toy for Jaime to grab.

Here's the "Boom-bah" part.
So I entitled this post "Boom-bah" because that's what I say when he "falls" over. Jared and I make a "diamond" with our legs and Jaime's in the middle. We sit him up and when he goes to "fall" we take turns "catching" him and rolling him to the floor saying "Boom-bah." We actually have to roll him the way he would roll himself to get in and out of a sitting position. Make a game of it and therapy is no longer therapy, instead it's just something fun to do with Mommy and Jared. By this evening he was sitting and reaching for toys in front of him...actually, he wanted Jared's pretzels! HA! We are so excited that Jaime may actually be sitting up by himself for his first Christmas! This is a HUGE milestone, especially for someone who just before his second repair surgery and fascia closure, couldn't even move his right side at all, let alone have the abdominal and arm strength to hold himself up.
Another big thing I mentioned yesterday is Jaime discovering his feet. Ellen was impressed by Jaime's ability to get himself into this position today, considering he had two major abdominal surgeries!
Another Mamarazzi shot during therapy.
Jaime had a GREAT therapy session. That "nap" before sure did help him! He was in a wonderful mood, then Joy (RN) showed up! At first he really liked her. She weighed him....15lbs, 3oz! He gained weight since last week. Woohoo, it's the small victories that really count in CDH World. His weight was done to see how much Synagis (RSV Immunization) Jaime would need. She said she's giving Jaime an early Christmas "gift," as only 1 shot was needed...this time! She said it would be the last time he'd get only one shot from her, from here on out, it's 2 doses for the little man! He, of course, screamed and cried. Then, he was calling out for his "aboo." I didn't have anymore Good Start formula left from our little trial on it, so I decided to give him some squash with butter and cinnamon instead. He LOVED it and gobbled down 2 1/2 tablespoons without choking. After "lunch" I ran to Target to pick up some more Good Start. So far he's done OK on it, he spit up twice today...once during therapy (go figure we were rolling him all over the place) and once after Jared and I were playing "Boom-bah" with him, neither time was a giant projectile vomit like he usually does. He did poop 3 times today, that's something we're going to have to watch. Jaime sees Dr. Hellerstein on Monday, so we'll keep him on the Good Start until then. We are also going to keep the NG in until then, even though today he drank MORE than his 28oz a day, I think it was more like 34oz., almost all of it was by mouth. Oh and per Marcia (SP) we are to start adding rice cereal into his bottles. He actually had 3 bottles like this today. The last one being just before bed...God willing the boy will sleep tonight! He's still restless as I type this, though! ARGH!
Speaking of "sleeping" here's a pic of each boy after I put them to bed! Don't they look like sweet, innocent little boys? Wait, neither one of them are asleep in these pics...they aren't sweet or innocent at all....HA! At least I can safely say, that currently, both boys are asleep.



On that note, I'M off to bed! If anyone runs into Santa, can you please tell him that all I want for Christmas this year is one night of uninterrupted sleep?!? Thanks!

And to all a good night!

3 comments:

  1. Yay!!!! Congratulations! So exciting! Nothing better than reaching milestones!!! I am also asking Santa for a full night of sleep .... although I don't know if I would be able to sleep through the night at this point even if I had the opportunity =)
    Hugs,
    Jennifer

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  2. I roll over when someone puts me on my tummy too. Maybe its a chubby tummy thing. Good looking kid you are raising. Glad "things" are moving along. I'll ask Santa to bring some "majic powder" to sprinkle on Jamie to promote sleeping. Little Joe puts a lot of faith in majic powder (something to do with that Conductor on Thomas the Train.

    Love you all, Dale and Majken and Mom's

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  3. Jaime sure is making progressing. These are wonderful achievments. I'm vey proud of him. Mom, you're doing a great job with Jaime, I know it's not always easy, but you are making it look that way!
    Waiting to hear that Jaime's crawling around the Christmas Tree!

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