Busy, busy....

First off let me start by sending condolences to Majken & Dale (our dear friends and 2 of Jaime's nurses). Majken's mother passed away yesterday after a very long illness. We're keeping all of you in our thoughts and prayers during this difficult time!

It's been nearly two weeks since I've posted...a lot has happened! Jared started the 2nd grade...other than a few too many trips to the nurse's office, so far so good! He recieved an "A" on his first test....sooooo hoping this trend continues! Here's a pic of him on the bus his very first day of school! :)

Nana and Papa came to town for a "surprise" visit, it was fun to see them. They took Jared aboard the William G. Mather Ship for a tour...they really wore him out! :)

I started working my "real" shift at work, then was put into a nearly two week 8 hours a day training class! This has been VERY challenging! We're still in the process of waiting for one of our nurse's paperwork to go through so that she can start...it should be literally any day now! In the meantime...Dale, Darlene...and "baby-sitter" Debbie have been caring for Jaime. Dale was over on Monday and Tuesday...Monday was OK, but Tuesday...not so much! Dale actually tripped at my house injuring his ankle, causing a trip to the ER...it's a bad sprain. Darlene was over on Wednesday, and Jaime spent the last two days at "baby-sitter" Debbie's house. Both days I left him crying. :( It's so sad! He's just not used to being out of his element! This has also caused him not to nap for two days! Poor, stubborn sleepy-head! He's going to go back to Debbie's on Tues. and Thurs. next week, so hopefully he'll start to get used to being over there...she's our "back up plan."
We did manage to have some fun this week...I took the boys to the city pool for one last "hurrah." It was 89 degrees when we went and it was after dinner! CRAZY weather! The boys had a great time! Here are some pics we took...if you're on Facebook, I posted all of them there and a video of Jared jumping, too...so check it out!

As far as eating...................I don't even know what to say, he's almost stopped eating completely. He's only been eating a few pieces of cereal here and there and very minimal amounts of fruit. And when I say minimal, I mean like a 1/2 piece (about 1 inch in size) of fruit cut up. He's back to throwing up at least once a day, too. It's not "reflux" as much as it is provoked by something like him choking, coughing, gagging on food, crying...etc. CDH in itself SUCKS, but feeding....oh my gosh...who knew that something so instinctive for all of us could be SOOO hard for Jaime (and lots of other CDH'ers, too)?!?

To make matters worse, we're back to fighting with the feeding company to get Jaime's proper formula mix. He's supposed to be on a 1:1 ratio of Pediasure and Kids Boost Essentials 1.5 Cal. We can't just buy the Boost in stores, as they do not sell the 1.5 calorie formula here. I special ordered it from Target's pharmacy last month paying out-of-pocket for it thinking that by now we'd be getting it from the feeding company. That is not the case, so we're back to having to go to Target to order more. It's just so darn expensive for me to buy on our own...this is something insurance should be paying for, it's so frustrating! The mix of the two formulas puts Jaime at 37 K/Cal, he really needs the higher calorie formula for growth. Depending on what dr. you talk to, Jaime's slowly slipping off of the charts! :( As Tom puts it, Jaime shouldn't still be wearing the same clothes he wore last year now that he's nearly 17 months old, kind of sad, but good in the fact that I don't have to buy him new stuff and he's getting a lot of wear out of his clothes!

Some BIG news to share...Jaime thinks he can walk! He has been caught taking steps around the living room. (I have yet to get it on video, but when I do, I will post it!) His walk isn't very functional, as he walks forward, sideways. It's hard to explain, but every few feet, his ankles buckle under him and he collapses. Sometimes he's really determined and gets up again...other times he gets mad and stops. Either way walking is very strenuous for him; he peters out about half way through his PT session. We're hoping his leg braces will help him, we're still waiting for them to come in...perhaps they'll be in next week?!?

Two Silly Brothers, taken tonight!

Other "good" news is that I received my very first pay check since December 2008 in the mail today! That was pretty cool...a silly milestone to celebrate-perhaps, but nonetheless, one I'm very excited about! It was cool to see that we have "real" benefits again, too...no more COBRA! :)

That's about all for my update...school starts again for me on Monday, between work, school and life...the posts may be few and far between, but I'll do my best to keep everyone updated on Mr. Jaime! This is my LAST semester....Graduation Day is January 9th....I CAN'T WAIT!!!! :)

Wishing everyone a wonderful, safe Holiday weekend...looks like it's going to be a beautiful one here! :) Good night, all!!