Monday, July 8, 2013

A little Grace news...

As I am still working through all the heartache from my last trip and praying through what God would have me do, I am trying to focus on the blessings of "every day life" here....so there is nothing like little Grace to bring some joy!
 
We finally, after MONTHS, were able to get her wheelchair ordered!  I am soooo excited!  When we first got her home, all the doctors keep deferring to another one for the wheelchair.  The pediatrician said the rehab, the rehab said the therapist, the therapist said, "Really, not rehab?" and around and around we went.  The story also involves a missed appointment due to a terrible traffic jam and running out of gas and a cancelled appointment when her file was mistakenly coded the wrong way so that insurance would not cover it.  Deep sigh!
 
But even in all of this, God is so good to provide.  As we got ready for our camping trip in June, we knew that the stroller was just not working.  She is just too big and needs too much support due to her stiff muscles and her scoliosis.  So the day before we left, my mom went hunting and found a wheelchair/stroller with a neck support and the ability to tilt just enough on Craigslist!  For a reasonable price, we have a "fill in" alternative!  Praise God!  Especially since it will still take about 6 weeks to get her new wheelchair.  Another deep sigh. 
 
The new wheelchair will be BRIGHT pink.  I am so happy.  When we ordered the walker for Mimi a few years ago, I went with subtle colors.  I think at that point in time, I still did not want her to "stand out" as different.  My attitude has changed now!  If I could get flashing lights and rhinestones on Grace's wheelchair, I would be tempted.  I want the world to know how we treasure these precious gifts - that they should all be cherished and delighted in and adored!
 
Please pray as we head into another round of doctor's appointments.  This week is her next GI appointment and I am praying her system is clear enough to begin the process to have the g-tube placed.  This would be so much easier than the NG tube.  I have now mastered replacing it, but I want to see her beautiful face without tubes and stickers! 
 
We also will see her neurologist and she will decide whether to start backing down on the seizure meds as it appears that she is not having seizures anymore (if she ever was)!  Then August will bring some Botox injections in the stiffest of her little muscles (fingers, wrists, elbows, and pecks) - to loosen these muscles.  It will last about 3-5 months - in that time frame, we will work with stretching this muscles so that her range will be much better by the time the "deadened" muscles start to come back.  So many things to be praying for - so many things in store for my precious girl.
 
She is still a bright, shining star.  Her smile lights up the room and her laugh is unbelievable.  She still adores her Daddy and the snuggle time they have every morning and every night in the big chair.  As the weather is nice, she is also loving going for walks - another reason we are anticipating a better chair.
 
I need to head out to get our medical clearance for the last of our paperwork for Serenity and Hope.  Praying this last piece will go smoothly so our paperwork will be done on our side of things.
 
To Him be all glory, honor, and praise!
 


6 comments:

  1. She's a cutie! I am looking forward to seeing her face without that tube, too!

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  2. What a beautiful little girl! I love seeing the progress and hope for all your cuties.

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  3. New to your blog and wanted to say hello. I've already read the entire thing lol! Your kiddos are precious! I am single, middle aged and childless with limited income but I truly wish I could go rescue one of these sweet children stuck in such horrendous places! I will pray for them!

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  4. Welcome, Lori! NEVER, EVER, EVER underestimate the power of prayer. Someday in heaven, you will have precious friends thanking you for your prayers for them!

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  5. I never thought of it that way... but it helps because sometimes I feel so inadequate and wish I could do more! Thanks for the welcome!

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  6. My heart rejoices seeing Grace happy and cared for!!! We so felt we should go for her but my hubby was budget cut and we have spent such a long time unable to go back. You are doing amazing!

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