25 June 2009

Despite the extra time I have outside of work, it really hasn't amounted to much relaxation. It has been great getting to spend more time with Isaiah as he's growing so fast! Tomorrow its 3 weeks until he is one year old! This year has somehow simultaneously dragged and flown by. It's hard to imagine him being in the NICU, being tube fed and on oxygen. It all seems so long ago, but then again we've been through 2 surgeries since then, 4 or 5 different trips to the ER, a trip to Orlando, 2 to Dallas to see Dr Fearon and countless other Doctor's visits here. The dragging seems to be all of the waiting we've done in Doctor's offices and the like, but everything else has flown by.
His birthday falls on the first day of the Apert meet-up in Myrtle Beach, SC and we had originally planned to go up there for the weekend but because of the job situation, we just can't spend the money right now. We've been really lucky to this point to have met so many different people, both young and forever young, with Apert Syndrome, and I'm sure we'll get more out of it if we go next year. He'll just be that much more stable (and probably that much more hyper by then too since he'll be mobile we hope!)
In family news, my Dad is coming down from Racine, WI tomorrow for the weekend to see Isaiah before his B-day. I haven't seen him since New Years when he was last here. We're going to head out to the Thrasher's draft party tomorrow night since its one of the last bits of hockey related anything until September training camps, but it should be fun.

13 June 2009

Weekend Update

Isaiah is doing great lately. We had a little scare where he tumbled himself onto his noggin, but it turned out to be nothing. He didn't even have a bump. We watched him closely the rest of the night to see if he got nauseous or crabby, but nothing popped up and he acted like nothing happened within about 15 minutes. He's been squawking more and more lately and I'll try to get a video up here if my computer wants to cooperate. Lately the 5+ year old box has been putting up a fight with me lately. We've been planning to buy a new one for a while here, but were definitely waiting until my job situation gets figured out.

On top of the computer the Toyota is acting up again. Its emissions system keeps tripping the check engine light and so far every time we've brought it in and they smoke the car to find where the problem is it has somehow reset itself so all they have is a generic code that there's something wrong with the emissions system, but they can't figure out what to fix it. Hopefully it can get figure out soon because A. we don't really enjoy polluting the already smog filled ATL air with our 11 year old Corolla, and B. It's due for a registration renewal in early August and we need to pass the emissions test, which I'm fairly certain we won't right now. Just more stress that we need on top of everything else right?

I'm sure things will work their way out, as God has taken care of us to this point with all of the help from family, friends, and the luck of continuing long term disability payments for Rachel. After all, Isaiah's surgery stuff is working out and we're still on schedule for his second stage of syndactyly release surgery on July 30th.

09 June 2009

May Pictures
































So now that I've got a bit more time on my hands I've finally gotten a chance to post the pictures from the month of May. Fun things in this batch of photos include the casts coming off, a visit to the Atlanta Botanical Gardens with Grandma Kolis, bathtime fun, and some pictures of his new fingers and toes at the end. You can view all the pictures here on our Picasa Web Gallery

05 June 2009

Busy Weekend!

I didn't want to make the last post super long, but we've got a big weekend this weekend. Tonight we're heading over to Johns Creek to have dinner with the Maxwell's who we met with back in January. They've got a 21 year old daughter with Apert Syndrome. We're also going to meet Liz Saylan, a grown adult with Apert Syndrome, and Don and Cathy Sears and their daughter Teeter who run Apert.org. Tomorrow we head down to Newnan, GA to meet the Hills who have an annual get together of Apert families from around the metro area so we may even meet more families and/or see some of the friendly faces we met in Birmingham!

We're excited to see familiar faces and meet new friends as well! Hopefully the little squawk-a-box can make it through all the excitement with out too big of a meltdown. Oh yeah squawk-a-box is a new nickname for Isaiah that Rachel came up with since he's been really vocal lately and 'squawking' at us quite a bit as he tries to talk - Hence squawk-a-box (which is much easier to say than type!)

Somebody really wants to crawl...

Isaiah's been doing pretty well lately. His demeanor is as happy as ever the majority of the time and we've finally got him taking naps in his crib rather than our arms. He's been flipping over to his tummy much more lately too. Unfortunately he still hasn't mastered getting back to his back yet so for the last week or so we've woken up to a crying baby 'stuck' on his belly. All we have to do most times is put him back on his back, he gives a little whimper or two. Nine times out of 10 goes right back to sleep which is great. All in all it's not so bad except for the fact that some nights it happens 5 or 6 times which puts a bit of a wrinkle into our sleep schedules, but doesn't that happen to all parents? From what I understand we've been pretty lucky compared to most parents.
With him being on his tummy more and not throwing as bit of a fit as soon as he used to we've been trying to encourage him to crawl more. He's slowly getting the hang of it. We've been putting him on one end of our bed on his tummy and a toy on the other end and encouraging him to come and get it. He's figured out the whole lift his butt up and move the legs part, but not so much about using his arms yet. Most of the time he's kind of been leading with his forehead, but on the odd occasion he's figured out how to use his arms to get his head up. The more we work at it the better he's getting.
On the work front we've got the insurance figured out and they've expedited the COBRA paperwork so we don't have all the hang ups with the prescriptions and appointments we normally need to have. I'm still looking for part time or contract work, but since it just happened Monday and I've only got 4 days into this we're not too worried yet. Come three months from now it would be a different story. I'm just happy we've got the insurance figured out so we can proceed with Isaiah's surgeries as scheduled.

01 June 2009

Fun Fun Fun

Well it finally happened, while I didn't outright lose my job, I have been reduced to part time which also means I've lost health care coverage for the family. We're getting the COBRA paperwork soon and hopefully that will cover things for a bit. So I'm home looking for part time work right now and possibly full time work if the right position comes along. Rachel and I are okay financial wise for right now as we were saving up for Isaiah's surgeries and something like this happening so we've got some money to last us a few months. The stuff I'm more worried about is the health care coverage for him. I'm hoping that the COBRA coverage doesn't reset our deductible because we've already paid out the $5K already and to start over would just suck. We're looking into Medicare now too since I have a feeling we'll qualify since we were only a few thousand above the cutoff from benefits before. Its a bunch of fun things right now, and hopefully this is only temporary, but we'll know more as things go along.