Friday, February 19, 2010

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 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

1 comment:

  1. Oooh MommaSkye... I feel like you're where I've been. I found a post I'd written about "all of that" called "Lessons Learned in the Absence of Answers". At that time I tied it in to something related to homeschooling. You can read it here if you're interested:

    but - in a 4-5 yrs later, we have a lot more information (mostly test results!) but no solid answers. For a while it seemed that the more info I had/the more I "knew", the more questions I had! By most anyone's standards my daughter is a thriving/healthy/beautiful young lady - very active/athletic...tho' one Doctor is sure she has "this" ... another at Children's Hospital said there's no evidence of that or anything else on a long list of possibilities - a conclusion he based on TONS of tests.

    I finally kinda resigned myself to the fact that only God knows & if/when He wants us to know for sure what she has, He will make sure I do. I'm not suggesting by any means that you resign yourself to that too...but I would encourage you to consider that God likely has so much teach you in your pursuit of answers - perhaps He wants to show you that you are capable of things you never imagined you could do - or what true love really "looks like" (something tells me it looks a lot like the adorable pic you've posted here :) ... or any number of other things. My guess is that no one on earth was even capable of being the vessel He needed in order to show you all of that in a way that would help you really understand the things HE wants you to know (Among them...What you know isn't nearly as important as Who You Know)- Sooo...He created Amber. From my vantage point it seems already, in such a short time(!), she is doing a remarkable job. Either that - or you're a very fast learner.

    Hugs & prayers.