Wow, so many updates! I just haven't been able to get to the computer for the last few days. So here is the rundown."Lefty", as we call Levi's left hand is rocking it! Yesterday he gave Dan fist bumps and then he proceeded to hand me a bunch of balls during OT. We all wanted to cry in joy at the observation. What progress he has made!
His legs are starting to show signs of more strength too. Today, I saw him advance his left leg in a way that he wasn't able to do before, which was of course encouraging.
The photo to the left is him in this contraption that will allow him to put light weight on his feet while he gain enough strength to put full weight on it. He wasn't so into it the first time, but as you can see he has discovered the joys of going up high in it and is enjoying himself!
Now for the not so good developments. Yesterday, we went to see another two ophthalmologists since his eye hadn't opened yet and our rehab doc was getting concerned. He originally theorized that he may have had nerve damage from swelling and that caused delayed opening. Now, he has come to believe that the damage may be more neurological from damage from the surgery. Ahhh! So, after observation of the doc yesterday they have scheduled another surgery for Monday, Sept 19th (time tbd). Obviously the scope of this
surgery is much more minor that his brain surgery, but I am not thrilled about it. It will involve 5 small incisions in his eye area, they squirt silicone in there (think rubber band) and wha-la, blink blink. I know it is necessary, since if we leave the eye closed it will stop functioning all together, so that is not an option. We can hope and pray that his brain recovers in that area and restores the function to blink. We also don't know if there may be damage to this eye's function, as some have seen that it doesn't track just right, so we'll learn more after we get it open.
We had a team meeting with all the docs and therapist that are involved in his care and they summarized his progress for us and gave us a tentative date of when we may be discharged. October 7th! We also learned that his full recovery will be over 18 months, with the dramatic progress in the first 3 to 6 months.
By the way, a hospital is a very good place to be in a mass power outage. These generators don't mess around! I was feeling pretty good until the room started to heat up and they gave us a memo saying the air was off. It's one thing to have no air or fans, but to have no air, no fans and not be able to open a window, not awesome. After my 5 mins of contemplation about how I was probably going to suffocate, the air came back on and whew, we were saved. The whole adventure gave us all something else to occupy ourselves for a while, we even had to go "hunt" down some food. It gave me an excuse to eat potato chips for dinner!
This is Awesome news!!! So glad to hear his eye thing isn't permanent!!!Good going little Levi on your fist bumpin'! Sad to see he has to have surgery again but it is so great to have that end date! Levi looks so awesome in that swing bouncy thing!!! Keep up the good work!!! God is AWESOME!!!
ReplyDeleteSo happy you have a discharge date! Will be praying for his sight and the surgery! Thanks for the great update and the pics! My kiddos love seeing little Levi :) Andrea Cox
ReplyDeleteWE know this is a long road, and continue to pray for endureance for all of you. Wish we were closer so we could offer you and Kara a break! Love you guys!
ReplyDeleteWon't stop praying until Levi is 100% in all areas...he belongs to the Great Physician! Thanking Jesus for this fella's progress
ReplyDeleteThanks for the update. We're joining many others in continuing to pray for ALL of you!
ReplyDeleteSo thankful he is making progress! Praying he heals quickly and that you all hang in there!
ReplyDeleteMilena Schroeder
Kael and Brae want to come visit-we will give Dan a call to what day will be best and a time. I love seeing Levi's precious little face on these posts. We are thanking God everyday even for the smallest amount of progress. Love to your entire family, Scott, Jess and the Boys.
ReplyDeleteoh goodness gracious... he is so stinkin' cute! look at that sweet face, his little lips! I could just smooch his face!!! Great update, progress is being made! Praise Jesus!
ReplyDeleteMy sister is friends with Jason, the day I heard about LEVI, we all immediatly started praying for HIM AND YOU ALL AS A FAMILY! As a few days later I ended up in the hospital my self for 2 wks.( an attack from my disease)so I have now for the 1st time looked up this website to get a cuurent update on Levi's care and what you all are feeling. Please know I understand the drain of it all- therapy, hospitals, JUST SURVIVING the day! My kids are 4 and 21/2 and have had their mom gone a ton from being back in forth of comas etc. I do know that as Ive searched to ask why again did this hit me_ more like hit our family... I really truely believe it when people say- and in the bible says- God will only give us what we can handle. So he must know YOU are strong adn worthy to be able to glorify him in this struggle you go through. So to be blunt about it but I know I dont like any of what i have to go through but it gives me comfort know that God knows best for me as he does for you. I will pray for you continually to give you strength and healing for your lil man! With love, Rebecca Martinak (Leslie Holsapple's sister)
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