Thursday, July 31

7/31/08 Lots of new stuff...

And in this corner, weighting in at 18 POUNDS!!!!!! Anya Jackson!!!  (in the pink shorts of course).  That's right, Anya now weighs 18lbs.  She is definitely heading in the right direction again..

She has been doing really well lately.  Katie and I recently returned from a two week trip to Arizona where we took Anya for some "intensive" therapy.  Not so much intensive with respect to effort on Anya's part but more intensive in time and sensory input.  We took her to a place called Futures Unlimited (www.futuresaz.com) where they practice CCDT (Chronologically Controlled Developmental Therapy).  We've said time and time again that we'll try anything within reason (and as some of you know, not-so much within reason).  We were referred to Futures from Dr. Klinghart in Seattle, and after learning more about it and speaking with James and Susan Snapp, siblings who's father Ed Snapp developed the CCDT protocol, we just felt it was a fit for Anya and worth a try.

We are very happy with the results we've seen.  The biggest breakthrough for us is that Anya now tolerates being placed in prone position (on her belly).  She used to just HATE this.  We'd been trying to get her to do this for two years.  She would cry, twist, squirm and ferociously bite her hands (it's an Anya thing) the minute you placed her in that position.  Today, she will hang out in that position for 30 minutes (perhaps more if we tried) with out fuss.  No only is she not fussing but she is bringing her head up, looking around, smiling.  I wouldn't say she loves it but it is night and day from where she was at. 

She also no longer bites her hands like she used to.  She's been known to draw blood (her own or any one brave or stupid enough to get their fingers near that mouth).  One improvement that we'd seen recently, even before the therapy, is that she would appropriately respond to us telling her to get her hands out of her mouth.  It took her a moment but she would pull it away.  Although sometimes, if we weren't watching or if she was acting like her brothers and not listening to us, she would get a hold of a hand an just chomp.  She would just let out a huge scream and cry with a confused and frustrated look on her face with tears streaming down her cheeks.  After the therapy we've noticed she doesn't bring her hands to her mouth nearly as much (perhaps 10% of what she used to do).  And now when she does, she just mouths it a little.  She hasn't bitten since we've returned.

We actually planned on going to Arizona several months ago but canceled because she was sick and puking so much.  We finally just decided that if we don't do it just because she is puking, we may never get to do it.  Prior to the therapy she was getting sick nearly every 3-4 days.  She was pretty sick the first day of therapy but then each of the days following that she would maybe vomit once or twice throughout the day but never fell into her typical episode where she was completely lethargic.  Since we've returned I think she's only had two very mild episodes that where over within a few hours compared to a few days.

So much more to add to this... we've been doing a lot with her and just haven't had much time to write about it.  We had a couple great appointments today actually that could offer us much more potential.  Just know, Anya is doing better than ever.  She has a long, long, long way to go but SHE WILL GET IT!!  We really feel we are finally on the right track...

Saturday, July 12

July 12 All is good.....

 
I know it has been a really long time since I have last updated so I wanted to quick add an entry. Everything is going really well. Anya, Pete and I just got back from Arizona where we did a 2 week intensive therapy treatment that was very interesting. I will update later about the treatment but it went really well. We missed the boys like crazy but was nice to spend 2 weeks with just Anya, giving her our full attention:) She continues to vomit every couple days but at least we are able to get most of her feeds in.
 
We will update later about her treatment and new pictures but I wanted to let you all know she is doing fine!
 


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