Monday, October 5, 2009

MIxed emotions

We took Paige to her team cleft meeting today. Here's how it went...

Met with Matt (speech pathologist), Dr. Grunwaldt (plastic surgeon) first.
Dr. Grunwaldt talked to us about her surgery and how things would progress. She said it's a 4.5-5 hour surgery. That she will do her best to make Paige's scar look it's best but that really is up to Paige's body on how she heals. She also said that her cleft is pretty "typical" and that it isn't all that bad. The first thing that Matt said when he came in is "oh I guess we won't have to wait the full 6 months with Paige." That made us have a sigh of relief. And the first thing they asked was when Dr. V said she could probably have her surgery. I told them that she told us 3-4 months. Matt said he would go check and came back and said Paige will have her surgery at 4 months. SO JANUARY! We were hoping before Xmas but the first of Jan sounds good too!! We are looking foward to Jan now!!

Then, the ENT came in to talk to us about her stridor. They all agreed that she sounds so much better! We are still going ahead with the scope Thursday unfortantly. They are not sure about the tubes but are pretty sure they are going to just go ahead with it. They said that if she still does not pass her hearing, she will have a more intense test done. Hopefully she passes!! Mommy is going to start sign language with Paige soon. Good thing her mommy knows quite a bit! And what I don't know, I can find out. I took classes in college, and have friends who are deaf and have taught me a great deal. I could probably spend an entire week just signing and not have a problem. :) We are lucky in my training in this area as I was going to get my masters in deaf education but decided it was too difficult to find a job.

We then met with Regina (nurse practioner). She was impressed with Paige's weight gain! She is now 12 solid pounds! This is a huge milestone for cleft babies who tend to gain weight slowly. Paige has NO difficulties eating! She is in the high 95th percentile for height and weight! We also talked about increasing Paige's zantac to help with recent increase in spitting up.

We met with the social worker who talked to us in more detail about how we were feeling about things and also about health insurance information.

Then, Dr. V took us into her office to do the NAM adjustment and to add the nose shunt! We were excited for this because it really is helping Paige to be able to breath out of her left nostril. She has not been bothered AT ALL by it and could care less. Owen was a little freaked out when he first saw it because he thought it was a "hook" in his sisters nose. I explained that it helps to mold her nose and he was okay but was really freaked out at first.

So all in all, Paige is doing well with the NAM and everything is progressing. I was a little upset this visit though. When Matt and the other doctors were in the room, Matt began to talk about all these conditions my daughter has and he never explained them. So I have no idea what he's talking about. They did make note that Paige has a small chin. This is usually associated with some conditions related to a cleft. She also rolls her tongue so I was worried about Pierre Robin Sequence ( which Paige has many of the symptoms for. But they didn't seem to think it was an issue at this point. This condition is rare and therefore I doubt Paige has it but it definitly is a concern if it is diagnosed. I doubt it though. Many of the things I have read says you do NOT have a cleft lip with this disorder. Matt said that no one has seen a signal of PRS so I'm hoping this is not the case.

Paige had to take her first trip to the Lab too. They had to take 4 vials of blood before her surgery on Thursday to check for blood disorders. I'm close to be anemic and Hal's sister has the carrier for Blood Pole platelet disorder. While I'm told Hal can't be a carrier, it's better safe than sorry in my opinion.

So right now I'm sitting here thinking about all the questions I had and forgot to ask! Like

How are we on the bone graph? Is it likely Paige will still need one or is the NAM working well enough we won't.

Can Paige go swimming with the tubes in her ears?

What happens if Paige's nose is molded and it's NOT January? Can we have the shunt removed or will it always remain?

Just a few questions I wish I had asked. I have Thursday off to go to her surgery but after that Hal will be on NAM duty alone. I will be at work for the next few appointments. I'm praying they have Paige's surgery early on Thursday also because she can NOT eat prior. Not quite sure what I'm going to do about Owen and Madison. Plan on taking them to daycare but boy is that an early day. I feel bad for those two! They love hanging out at daycare, truthfully I get yelled at for not letting them go. But it makes for such a long day. I feel bad because I feel like we are neglecting their needs. I know we are not and this doesn't happen often but I love being able to have Hal take the kids to school and not have them there at 6am.

So as you can tell, I think I have rambled enough. :)