30 January 2009

We're going to Dallas!

So we had a phone consult with Dr Fearon in Dallas this afternoon and we've decided to go meet with him to have a more full consult and possibly to take over Isaiah's coordination of care and his major surgeries. Its still early on for the final decision which is why were going to Dallas. We were figuring there would be a long wait to get in as a new patient but somehow we got squeezed in on February 6th. That's 1 week from today!! Its still sort of sinking in a bit that were going so fast, but it'll slow down once we have to try and petition our insurance to have him actually do the surgeries.

One additional great thing is that my cousin Angie lives just outside Dallas in Coppell, TX so we're able to stay with her while we're there which should help us save some money.


ACK!

25 January 2009

Weekend Update

So here's the weekly wrap up. We had a relatively busy week this week. Wednesday was our trip up to Shriner's in Greenville, SC and after our visit we've pretty much eliminated that as an option for his hand surgeries. Nothing against Shriner's hospital, after all free care is free care, but their idea of what they could give Isaiah for functioning hands just didn't meet with our approval and we weren't comfortable going to a place without a pediatric ICU in case something serious happened. It was a bit of a bummer, but at least we went and we know now.

Thursday Izzy had his weekly Physical Therapy (PT) visit. His therapist showed him how to knock over blocks and he seemed to have a good time doing it. Maybe it had something to do with the fact he was given licks off of a cherry dum dum sucker as reward, but he liked doing it. His face is hillarious when he has the sucker though. After he gets his lick in he closes his mouth all cute and pulls his lower lip under his upper lip and makes a little raspberry like noise.

Saturday we met the Maxwells, a family with a grown Apert child here in the metro. It was great to meet Susie and her parents Ron and Pam and see first hand that everything has its way of working its way out. Sure there are difficulties along the way, but they've got a great daughter who's made it through it all and is currently in college so we know there's great hope for Isaiah.

Its been a busy week and now we're looking at going to Dallas to consult with Dr Fearon there who's literally written chapters of books on Apert to get his opinion on Isaiah's hands. People from all over the country go see him and we might end up doing the same for his hands at least.

That's it for now.

20 January 2009

6 mo checkup / solid food!

So Rachel took him in for his 6 month checkup yesterday and he ended up weighing in at 17lbs 10oz - exactly 50% in weight. I forget how tall she said he was but he was in the 95th percentile for that, but only 10th percentile for his head circumference. These are against typical babies which explains the height and head circumference differences. We're off thr Zantac cold turkey to see if he will have any acid reflux, but still on the flonase. We also started him on solid food purees yesterday.

He had his first spoonfuls of pureed squash and seemed to enjoy it. Considering it was his first time being spoon fed anything, he did pretty good. He doesn't quite open his mouth all the way yet, but I think he'll get the hang of it pretty soon. He nearly ate the whole gerber package and we were hoping to maybe get him to eat half of it.

Tomorrow we head up to Greenville, SC for our intake interview with the Shriner's hospital to see if he'll qualify for care. Its not too bad of a drive and we'll be heading up and back the same day.

17 January 2009

Tax Deductible Donations!

So we finally have something organized that you can donate money to us in a way that's tax deductible!

One of the websites we've had in the links sidebar since the very beginning has been Apert.org / Teeter's page which is run by Cat and Don Sears up in Columbia, SC. They run Apert International which has a general fund you can donate to but if you put Isaiah's Fund or Isaiah Kolis in the memo portion of your check or the paypal website set up we'll get 100% of the money. They are a 501(c)3 charity so it's fully tax deductible to the donor as well!

You can donate online with a credit card if you're comfortable through their website here (www.apert-international.org) or to be sure it gets to us directly you can send a check made out to "Apert International" with "Isaiah's fund"or "Isaiah Kolis" in the memo line to the following address:
Apert International
1900 Shadowood Drive
Columbia, SC 29212

We won't get the money instantly, but we will get it and now you can get the added benefit of a tax deduction when helping us.

Happy 6months!

Today Isaiah is 6 months old!! (well at 10:07 pm EDT tonight he will be)

We're planning on going to the Georgia Aquarium with him since we have some coupons for discounted admissions from when my Dad, Becca and Anthony were here around Labor Day. We're planning on bringing the video camera. I'm still trying to figure out if we can download from it to our current computer as of yet so that's why there's been a relative lack of pictures and videos lately. Our current computer is over 5 years old and while it generally works just fine I think its out of date to support all the video stuff but I haven't had much of a chance to sit and check all the compatibility issues yet.

It's still a bit cold for us down here, but tolerable. As Mat and Malia said in their comment from our last post we'll have Isaiah bundled up like the little brother in "A Christmas Story" (I can't put my arms doooown!)

In other news we got the money from the benefit concert fully now and it was enough to almost completely cover our $5,000 HSA deductible for this year which is just great! Thanks to everyone at the American Legion, everyone who came out and especially Karlee for getting it all set up.

15 January 2009

It's cold here, but it could be worse...

So we're expecting our coldest day of the winter so far today and tomorrow with lows around 10 and highs around 30. I'm not complaining really as I know it could be much worse. I looked at Minneapolis' weather today and they're currently 20 below zero air temperature with a -42 windchill. Part of me is glad we're not up there dealing with a newborn in that kind of cold anymore, but with the holidays coming and going and tough times at work with the constant fear of being laid off really makes me miss my friends up there and all the support I know they can give us. Sorry we haven't posted in awhile. Isaiah's been a handful lately. Nothing serious, just fussy because he's teething and he always wants to stand up and we have to steady him. We're going to go look at walkers this weekend and see if there's one right for him.

05 January 2009

Happy New Year

Well happy 5th day of the New Year to be exact. Things are going here. He's been really crabby the last couple weeks, probably from being paraded around so much and with all of the going to visit family and family to coming visit us we think he's been a bit overstimulated. We completely love that he got to spend so much time with family and I'm sure he'll be better in a few days now that things have died down some.

Not much news in the way of hand surgery stuff. We're still sitting at the same place we were before but Rachel and her Dad have started to see what help some of his contacts can help us out with so there's a reasonable amount of hope. Rachel and I are both a little worried about waiting until April for his surgeries which is the soonest the Shriner's up in Phila. could get us in. For lack of a better term his pinky pads (the areas of skin where his pinky fingers would be) are very sensitive and we think it may be preventing him from crawling since whenever we put pressure there or try to have him try to push up he almost always gets hysterical. We don't know if its his one gigantic fingernail digging into the fleshy areas or if he's just got a concentration of nerves there that are very sensitive, but its one of our (many) worries.

One other thing to note we haven't talked about much is the fact he loves to stand up. He's working on his balance, but his legs are so strong he can essentially support himself and we have our arms around his torso just to steady him. Who knows maybe he'll go straight to walking, but it might be kind of hard if he can't push himself up when he falls. We'll see. Everything else is going well though!