Saturday, February 27, 2016

The next prayer requests...

Yesterday was amazing!  Serenity's reactions to the hearing aids were so precious.  We had timed "sprints" in them yesterday as it is very overwhelming for her to hear EVERYTHING at once.  Even the printer printing was a new sound for her. 

We realized after talking with the wonderful audiologist that we should have been color coding the pieces of equipment as it is a pretty sure thing that Jillian will need hearing aids and glasses - and also a big possibility that Lucy and Peter could have glasses/hearing aids as well.  Each kiddo is assigned a color - but we chose pink hearing aids for Serenity when her color is actually purple.  Not an earth-shattering mistake, but one I wish I could go back and redo.  Her ear molds will have to be remade as she grows, so we will switch then, but in the meantime we also ordered new glasses in pink as well - might as well run with it. (NOTE to parents with kiddos with Apert or DS, Miraflex now makes a pair of glasses with a built up nose bridge to stay on those little tiny noses...especially kiddos from China with tiny noses. :)  It is only in one frame style, more rectangular than oval, which is not my favorite, but hoping they will expand in the future.)

So the next prayer request is for this next Monday.  We have calling it the massive "round table" meeting day for Hope, Serenity, and Jillian.  Yes, I cringe at the thought of taking all three for an ALL day appointment - Jillian and Serenity in their exuberance and wiggly bodies and Hope with her overwhelmed freak outs.  Hmmm, fun....not.  But we have a number of questions on each kiddo. 

For Hope, we want to find out if there is a "window" of time in which her facial surgery would need to be done.  It sounds like the surgery could very well negatively affect her vision (not to mention taking a HUGE step back in her healing and adjusting to her life outside of the abuse/neglect of her orphanage).  So as parents, we have a tough decision - do the surgery to "fix" the face and possibly ruin her vision or leave the face and keep the vision.  Her face is absolutely beautiful to us - but it does draw some very negative reactions, especially from children.  Right now, she is pretty cocooned (and happy about it) at home.  But if she begins to go out more, I do think she is cognitively aware enough to realize that people are reacting to her.  In a perfect world, she would be loved and accepted just as she is - but that is not where we are at - so what is the best choice for our child?  A true "rock and a hard place" - so we want to get the input of the doctors about our options. 

For Serenity, I just need to verify that after her last pinky is released at the end of March that she will be surgery/procedure free for a few years.  I think she needs to have the time to focus on learning and growing cognitively - but surgeries always set us back a bit.  At the end of the 2-3 year time period, she will have her most complicated surgery yet - moving her mid-face forward.  When that is done, there is a real possibility that her trach can be removed - one step closer to just being a "plain-girl" (a term used by our then 4 year old to describe "typical" children).

For Jillian, I am desperate to get the surgery to release her thumbs on the calendar.  This girl is SO intelligent.  Not just mommy-pride here (especially since I have nothing to do with it!) - she is amazing.  The thumbs are so critical to the next steps in learning.  We also need to find out if a front-vault expansion is in the near future.   This surgery is important to protecting the eyes of kiddos with Aperts - but Jillian's forehead actually does a pretty good job of this already - so not sure what is in store.  I need to know for my mental "organization" and for my prayer list.

If you could pray for a relatively easy appointment (ha, ha) and for good interaction with the doctors, I would so appreciate it.  We are still praying that the virus skips Grace so she can have her surgery on March 7th....

Thank you all so much for all your love and support!

1 comment:

  1. Good girl Serenity! The hearing aids don't look that large, maybe you could find a purple retainer case for them? They make them in a ton of colors and that would keep the aids safe and could even have her name on it