Today Feels Like A Monday

Apparently we can never have a dull moment.

Wednesday we had a good early intervention session in the morning. Amber is really coming along with her head control and gross motor skills! We had two hours to feed and get ready and then it was off to hand therapy. Her splints are working great! We won't have to change them until she grows out of them. That should give us a month or so before we need to see them again. She is now wearing them for 2 hours on and 2 hours off all day long! She's doing so well with it that we can have her wear them for a little bit longer! Our goal is to get her to wear them for most of the night and eliminate day wearing. We also tried to have her blood taken that day. That was an epic fail! They didn't have the right stuff to do babies but they wouldn't let us just go to another place. So it took forever with poor baby crying and screaming and guess what! We have to go again because they couldn't get anything. I don't know why people can't admit to the fact that they can't help you and just send you to someone who can.....is it really that hard?

After our last appointment with our geneticist and hearing yet again that they have no idea what she has or what to do we decided that we would make the switch and go to Childrens. I called our Dr to let him know and switch our referral from a 2nd opinion to going there permanently and found out that our insurance won't pay for us to go there. Ugh I'm beyond frustrated at this point. So I guess we're going to try Mass General and if that doesn't work we'll try Tuffs or Shriners. I have heard that if Mass General can't help her that they'll admit it and send us somewhere that can (that would be amazing)!

Sorry to sound upset I'm really not just a little frustrated but I think I'm allowed to be. Some more good news; our tax money came in, people might actually buy our car and Amber doesn't seem to be getting constipated anymore!!

But really how could anyone stay upset for long when you're looking at this face all the time

Finally!

We have Splints!! It's only taken about 4 months but we got them on Wednesday!

Never in my life have I been more excited to bring Amber to the Dr.'s! Oh yes and we braved the elements...which turned out to be not that bad at all and we were taken early yay no waiting! The lady had even done a baby before; a one pound baby so miss beanie looked like a hippo to her :) It’s so nice to hear "you have a big baby!" Yes I would like to think that in munchkin land Amber is a giant. Well the first material just wouldn't do "she has such big hands"! Yes, we're thinking basketball or bassooning heehee. The next stuff worked fine and we now have "functional" splints for her giant baby hands :) Just so you can get an idea of the size here they are on a standard card sized envelope with a pen in front of them.

She really is a good sport about wearing them. Although at this point they are still interesting and confusing to have on. We'll see how it goes; she does seem to be in a little pain when we put them on for additional wear time and when we take them off. We’re working up to wearing them for 2 hours and having them off for 2 hours throughout the day.

The good thing is she can now chew/suck her thumb. She's never been able to properly do this before. The material is also pretty good for teething.

The bad news is it kind of hurts when she whacks you in the face with them

We are so happy with them! We've even begun to notice her hands being more "relaxed" for an hour after they've been off and it seems like she's getting more use of her thumbs! We go back this coming Wednesday to make sure they are still fitting properly. She will need new ones as she progresses and grows.

This is such an answer to prayer!

By the way any post that has to do with Amber's journey will be labeled Amber's Adventure. I'll be going back to label all our previous posts on her condition.