Saturday, September 20, 2008

This week we had our genetics appointment, which went well. They talked to us a little more in depth about the type of Chondrodysplasia Punctata, but still can't give us any absolutes as far as Chase's prognosis because the condition is so rare. They weighed and measured Chase. He's up to 10 lbs now, and when plotted on the growth curve he's within the 3rd percentile for his adjusted age. We talked about what it means that I'm a carrier for this gene deletion and who in my family should get tested to see if any other females are carriers.
This week Chris and I were able to have a date night for the first time since Chase came home. Our friend Amy who is a nurse was kind enough to watch Chase for a couple hours while we went to dinner. It was great, and Chase had a good time with Amy. We also took Chase to the Plaza Art Fair for a little while last night. It was crowded and not the best place for a stroller, so we didn't last too long. We got stopped several times by people wanting to see Chase, and wondering how old he is. Most people think he is a newborn and seem surprised when I say he's five months old. So then I usually feel the need to explain that he was born two months premature. It's always interesting to see how people react to his trach too. Most people seem to think nothing of it and maybe don't even notice, others ask about it, and some aren't quite sure how to react. It's definitely something you don't see everyday, so it's completely understandable for people to act differently. Most people ask how long he'll need to have the trach. I wish we knew!
He's still not doing that great with the bottle feedings. We've tried different things, but nothing seems to make a difference. So we've just kind of accepted it for now and will continue to pray he turns a corner soon.
Chris and I start work soon, and we're trying to get everything in place. We spoke with a nursing agency, Maxim, who will try to match us up with a nurse as soon as they get the go-ahead from Medicaid and our case worker. Hopefully the timing of everything will work out between jobs, moving, and nursing services! We're trying to enjoy every second with Chase and love on him as much as we can before we go back to work soon. That reality is starting to set in.

From Chase's Journey

From Chase's Journey

From Chase's Journey

2 comments:

Anonymous said...

Hey guys,

Chase looks great! Glad to hear you are doing well and that you got time for a date (we understand how hard that can be). We also remember those days of "how old are they" when our boys were still pretty little... we finally would just say "6 months but they were a little early". People are so funny. Anyway, we think of you guys often and hope to talk with you soon. Glad to hear the move went well. Just let us know if you need ANYTHING!

Love,
The McFarland Party of Five

Anonymous said...

L00KS like Chase is doing well. No matter what you are doing, he seems to be thriving.

I have been resting and recuperating from my dbs(deep brain stimulation) surgery. I am anxious to finish the last procedure on Sept 26 and then like Chase, it's wait and see how quickly I heal and then it's adjustment time as the batteries are turned on.

I can identify with all the testing and comments on how I am doing. Hey, Chase, let's just play it by ear and have fun.