Support Registry Update

Inpatient Rehab Day #3

In support of
Addison Stavar
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We are on day 3 of inpatient rehab, but it really feels like day 1. Day 1 and 2 we had poor sleep and were still trying to clear her system and get things running smoothly, which was causing a lot of discomfort, agitation, and sporatic sleeping throughout the day. Both days we had to wake her up from napping for therapies, and while she showed small signs of good things, it was obvious that it was impeding on progress. We all know how backed up bowels and no sleep does for us! But alas, she went on her own yesterday afternoon and again last night and had two longer stints of sleep yesterday evening, and today seems to be better overall. Praise God, because I needed some encouragement after yesterday. We did manage to shower her yesterday. She has a really cool mesh lounge chair that she lays in, while we shower her with the shower hose. She has one more therapy session this afternoon (OT). She did PT and ST without us today, which I think is a sign of progress in of itself and worked on sitting upright on the edge of something (with assistance) and started to bear weight from side to side with her hands. She also worked on rolling. Speech reported that they worked on when you're happy and you know it, and she initiated attempted claps 3 times. When she is responsive to requests or commands, her movements are usually small, sometimes subtle and always disorganized. I know this is all "normal", "part of the process", and even good signs, but it's so hard to compare where we are to where she was. She was so articulate, so inquisitive, so full of life and zest and such a mover and shaker - it weighs on me to not see her smile, to not see that liveliness and to watch subtle movements when I'm accustomed to big larger than life Frozen reenactments. I am encouraged today because I got a good night of sleep last night and a shower, and I am so excited to be working with Advocacy Abby on helping me find grants that may be helpful in our circumstance. It feels so good to have someone who has walked in similar shoes and is now holding my hand to walk me through a process rather than having me figure it out on my own. If anyone could use an expert in finding grants and foundations to support families of children with disabilities and diagnosis - check out Advocacy Abby on Instagram. She's your girl. We continue to be well fed, which everyone knows was a huge priority before this, so thank you for that. I will continue to share updates here and post any needs as they arise here as well. We had one grandparent leave today, so we are down to one with us, but we have another one flying in tomorrow. Those extra hands have been a blessing with caring for Andrew and our home, so Kyle and I can be present with Addison and navigating the administrative aspect of all of this as well. We finally got Addison some perfect jammies for the hospital after 3 + weeks of only being in a diaper. We kept insisting the girl loves to be naked and then decided she might like to also have some clothes on. Here is a picture of her post shower yesterday! 

Current prayer requests: 

- Continued regular bowels
- Minimizing discomfort with every day that passes 
- SPEECH. Please, God speech. 
- A good nights sleep
- Daily progress (BIG progress)
- That she becomes interested in food and treats (my girl loves treats!)
-Grinding her teeth and clenching would continue to subside
-That we are here for less time than anticipated
- Creative resources for financial + administrative side of this
-Unwaivering faith + perserverance
- Miracles (ones asked for and ones not being asked for)
- FULL recovery and then some
- That God would continue to use this whole experience to heal and bless us and heal and bless others

AMEN.

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