Blessed by this Rehabilitation stay

This stay has been so different from all the rest. It has been much easier in so many ways, harder in others, but just as purely exhausting as ever!! For both myself and Colbey Raye. Her days here consist mostly of therapy, sleeping and eating! But we get to take long walks in the evening, something she’s never been able to do while in the hospital, and she gets to spend time hanging out with all the wonderful nurses in the unit. It’s different having another baby here with us. Having Beaude here definitely helps pass the time along and between the two of them kept busy! It’s different not having to keep an eye on Colbey Raye every second of every day waiting for the seizures to strike. Instead I feel comfortable leaving her for a few minutes so I can leisurely go get a coffee without running to and from the elevator in fear of missing a seizure or a doctor. I can relax more and rest easy at night (if Beauden allows it) and I feel hopeful watching Colbey Raye’s progress instead of hopeless through each second of each seizure. It’s easier all around! But a it is a little harder accommodating 2 babies this time around. It’s harder now that Colbey Raye is so mobile and does not want anything to do with being stuck in our room! Unless she is napping, then she’s okay with it 😋. It is harder keeping Colbey Raye entertained in the afternoons, but I would take this visit a million times over any other we have ever experienced. It is just as exhausting though… I remember going nights, days without sleep in order to keep an eye on Colbey Raye and her seizures. It was mentally exhausting during those visits and so hard, but this visit is more physically exhausting! Between trying to lug two kids around all over the place (thankfully our therapists are abundantly helpful) and the opposite nap schedules these two have set I’m exhausted. Helping Colbey Raye walk, kneel, stand, roll etc… Is tiring. Bouncing Beau so he won’t scream during therapy sessions in the gym is tiring. Dealing with puking/pooping kids in the middle of the night and getting up every hour with Beau so he won’t wake Colbey Raye is exhausting. I think I went over 72 hours with only sleeping about 5-6 hours that whole time! But I still would take this stay a thousand times over any of the others!
A lot has happened since we arrived 17 days ago. My grandmother passed away the day after Colbey Raye was admitted 😔. It was a sad time, but we are all happy she ha been able to move onto the next life, one of comfort and freedom from the pain and suffering she went through in her last days. I was able to make it to the funeral Saturday thankfully, and also was able to watch my brothers amazing ice skating performance the next day! I absolutely love watching him and his partner skate, and am so thankful that Josh was able to spend the weekend with Miss Raye so I could attend both the funeral and the ice show. Josh had his first experience ever staying in the hospital alone with Colbey Raye. He has stayed with us many many times, but never without me. It was a good experience for him but he was ready to leave by Sunday night!
As for Colbey Raye and her progress, well let me just say WOW! She is doing so so great!! She has successfully pulled herself up to the standing position 3 or 4 times now. Working very hard still on her balance and accuracy, getting her feet underneath her where they should be and the mechanics of doing it all correctly, but it’s a huge step in the right direction. If Colbey Raye is motivated enough she will take 4-5 steps with each leg, while holding onto just my hands. I hold her right and left hand and give her a good strong support, and she will step towards me! Before her stay here she wouldn’t even stand without my support on her chest/under arms, and now she’s taking steps with even less support than that! She using a gait trainer to help her establish the walking pattern. She sits in it mostly and uses it as a seat while she walks her legs forward but it still helps in training her brain to establish those walking movements she needs! She has begun to be more comfortable on her belly and has been putting good weight through her right shoulder by resting on her right forearm for support. And her language, her understanding, has improved as well! I can now ask her questions such as “Colbey Raye did you poop?” And she will respond correctly yes or no (with a head nod or head shake). She asks for things using more words and now she initiates these words on her own instead of us having to ask her. For example:
Colbey Raye: “go?!” (pointing to the door)
Me: “do you want to go for a walk?”
Colbey Raye: “mhmm” (nodding yes), “please” (saying it verbally as well and signing it).
I’m so proud of all the things she has accomplished, is learning and she is trying so hard to over come so many obstacles.
Gosh this girl has a way with people, and not only are her nurses, doctors and therapists in love with her, but so are the other parents and kids in the unit!! Her smile, kiss blowing and waves make everyone smile and as Jacob (a 12 year old boy also staying in the rehab unit) put it, “she just brightens up this floor!” And she does! But… She’s also a little sassy, loud and a tease. But none of that casts a shadow on her sweet happy personality and the grumpy attitude she can have is quickly forgotten as soon as she blows those signature kisses of hers! I love her so much, and I love how much she can brighten up a place that could otherwise be a little bit sorrowful.
We’ve been here a while now, and although we are excited for our return home I wish we had more time here to help Colbey Raye on this journey! She’s come so far and made huge steps during her stay in rehab and I’m so proud of her! Myself as well as all the doctors and therapists here agree she would benefit so much with more time here, but we cannot stay forever! The hospital has been so very generous and granted us 4 whole days of “extra” rehab as our insurance has still not responded to the request for more time. So tomorrow will be Colbey Raye’s last day in rehab and we will leave knowing how truly blessed we are by this hospital, family and friends who have helped out, and by prayer! God has a plan, and I have seen him work in mysterious ways the past few months by closing doors I didn’t want closed and then opening doors I never dreamed would open. This past year and a half has been the hardest time in my life, but it has brought forth some of the greatest experiences, and the most amazing blessings! We place our hearts in your hands Lord, we have been abundantly blessed by your love.

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