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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Tuesday, March 15, 2011

Eye Dr/Ice Cream

Jaime had his 6 month eye doctor appointment today. He did well. He still has his lazy left eye, the dr. said that it didn't look bad today, but he could definitely make Jaime's eye drift by doing different things. Having said that...he will most likely be needing an eye patch to correct it. He said it's a 50/50 chance of us using the patch, but he'd be leaning towards trying it in the future if it's not better in a few months. He also said that Jaime does have some vision loss on the left side. This may or may not get better with time. We have another appointment scheduled for 6 months...the ophthalmologist said that he'll monitor Jaime over a few visits to decide whether or not Jaime's vision is going to need intervention...ie, glasses-no surgery though, so that's good! :)

Who needs a spoon when you have hands?
(Ummm, yea, that's ice cream he's holding in his hand, brrr!!!)
Jared's FAVORITE, Vanilla Bean ice cream with crystal sprinkles!
Jaime moved by Jared, spoon still in hand, ice cream still in fingers and all over his face! HA!

In other Jaime news...he got his Synagis shots yesterday, we're still trying to determine if they will be his last ones ever....OR if he'll be getting shots next month. I'm not up on how RSV has been in our town, so I don't know for sure. I guess the state determines diagnosed cases and the need to give shots in April later in the month of March. Jaime shouldn't be receiving shots next year, as the typical treatment is through age 1 and possibly age 2 with chronic heart or lung issues. I'd LOVE to push it another year, but only time will tell if that will ACTUALLY happen. RSV in a kid who already has significant respiratory issues is super bad news, so we'll see if I can get him to get a third year, I mean he'll STILL be 2 during "flu/RSV" season next fall right?!?
The Synagis saga is to be continued.....

On a final note...the Synagis nurse weighed Jaime and said that he was 24.1lbs. I HOPE this is due to her scale being inaccurate as Jaime was 25.1 in Cincy last week! Funny story, while at the Cole Eye Institute, Jaime was in the "kid" waiting room with another toddler. Jaime pointed to him and said "baby." I said "no, he's probably the same age as you." (simply because he was bigger than Jaime. The boy's mom said no, that Jaime was probably older because he was talking much better. I asked how old he was, she said 14 months old. WOW! OK, sooooo, either he was HUGE for 14 months, or Jaime is TINY for almost 2. (He'll be 23 months tomorrow). Jaime's face looks older and he's talking a lot, actually, he's becoming a "parrot," but his body is so tiny. He has very tiny features! That's OK, he's super cute and that's all that matters! ;)

Boys will be boys! Silly boys in this case! Tee, hee!
Just a little note on Jared...he's been taking private ice skating lessons and doing well. He's in level 4-5 of classes, but he's doing level 6 "tricks" in his private lessons. He will be going to his first competition on March 26th. He's not doing a "giant" routine, it's more of a "skills" competition where everyone gets medals. It's a mini competition just to get the little kids familiar with the style of "real" competitions. He did very well during today's lesson. He was so excited with some of the things he was doing that he called me into the rink to watch him. I usually sit on the outside of the rink looking in, but this time I went right next to him on the rink. He's super cute! I'm glad he found something that he enjoys, especially in the winter. Can't wait for summer to get here so he can get outside swimming, playing tennis and going to hemophilia camp...he'd also like to play golf "just like Poppy" he says! We'll see how that goes! HA!
So, that's the latest on the boys!
Here's to Jaime's "23rd month birthday" tomorrow! Woohoo!!!!

P.S. Don't forget to sport your turquoise on March 31st in honor of CDH Awareness Day! If you do were turquoise, take pics and send them my way to make my annual CDH awareness day slide show! Thanks!

2 comments:

  1. I have a tiny active boy too (he will be 2 on Friday)! If he is 25 lbs, I will be shocked! My son has no health issues connected to his size, he just never stops and is a grazer rather than an eater. He eats just enough several times a day to get him through to his next "mini meal"! Good luck!

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  2. ugh I cant stand the big deal with the RSV shots. I mean, they had severe CDH problems, that should be enough. My insurance gave me probs for the first shot, not they are getting delivered to my ped w/o me having to deal with it. Ya just never know!!
    Camden was about 25 lbs, yesterday..he is 25th % in height and weight.
    Love Jaime eating the icecream w his hands...who cares, right? He is eating! =)

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