Wednesday, November 28

Tuesday talk

Well, there's a lot happening for us lately, but I'm sure that's true for just about everybody! Today is the day that the transplant team is meeting and discussing Jonathan's case. We are hopeful that we'll hear something from our coordinator very soon. His appointment went well last week. He felt a lot more confident and comfortable with everything after talking with everyone. Even though it was better than we were anticipating, the worst part of the day was definitely meeting with the financial people. I mean, there's no question that he should have a transplant, but the real question is how are we supposed to afford it? This is a $130,000 surgery which is bad enough, but it's the monthly cost of the medicines he will have to take FOR THE REST OF HIS LIFE that's really depressing. What are you supposed to do when your life is dependent on medicines, but you can't afford them? It's one thing to talk about it, but it becomes reality when the director of Shand's pharmacy sits in front of you and gives you their renal transplant medications table with costs. It's like Newton's law (if I'm wrong and it's another law, I'm sure someone will correct me)...for every action, there is an equal and opposite reaction. So now we're trying to figure out how we're supposed to deal with all of the opposite reactions that come with the territory.

In other news, the kids have had a pretty big week. On Sunday, Abigail sat up all on her own! She is one strong, determined little girl! She's also enjoying her new baby einstein exersaucer we got from Craigslist - it can drive you crazy, but somedays you strike it lucky and either make a great sale or find a great deal. Anyhow, she's been having a ball with it and William likes it too. She's also learned how to blow bubbles and raspberries and keeps herself quite entertained with all of the new found noises coming from her mouth.

This morning was filled with excitement as William, Abbey and I sat at the Ear, nose, throat doctor's office for 2 hours waiting to get confirmation that she has a condition called laryngomalacia. We've already been to 2 doctors who have told us that she has this and that only an ENT can truly confirm it by putting an endoscope down her throat through her nose and look at her voice box. And even then, there's nothing they can do to "fix" it. Well, this genius didn't do anything but listen to her chest and say, "It doesn't look like she's in any distress now!" I was thinking, I can't believe I wasted our morning and our specialist co-pay to have this guy do nothing! So, while baby girl does have this condition, she is supposed to grow out of it. Unfortunately, it causes some problems, like for her, bad wheezing and trouble with feeding, which explains why she's such a messy eater! Hopefully at the rate she's growing and developing, she will be done with this soon!

There was 1 good thing about this morning and that's the fact that I had the kids in our new stroller. Yeah, we had a nice Maclaren double stroller, but we had wanted the Peg Perego Aria Twin from the start. There are 2 reasons that we didn't get it to begin with, but well, that's a whole other story... Anyway, the Maclaren was hard to open & close, it was heavy, didn't have a cup holder, etc., etc., So, 2 weeks ago, we sold the Maclaren and some other stuff on craigslist and got the Peg Perego. I LOVE IT!! If you have or are going to have 2 little kids (Angela, take note!) - this is the stroller to get! Don't even mess with anything else - you'll sell it and get this one!

Well, this is long enough, and I haven't even gotten to William's stuff, but oh well. Here are some new pictures, which is probably the real reason you're here anyway.

The kids with their new Christmas tree.

Both of them loving Abbey's exersaucer!
And these pictures were too cute not to put on here - Abbey in her little hat and some of our favorite outfits. It's been chilly lately, so it's a good excuse to get the kids all bundled up!

Jonathan stuck both of the kids in the bath so of course, we had to get a picture! It was Abbey's first time in the BIG tub!

And here's William being a good big brother and checking on sister. That or he just likes climbing on the crib!


Angela said...

Thanks for the stroller advice, we will be shopping soon for those things again.

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