Just a couple updates on this afternoon/evening. Jake is now staying awake a good portion of the day (and night at times!) with short 30-45 minute naps here and there. He's got his left eye almost all the way open and his right eye part way open (its getting more and more open each day.) His eyes are quite dilated we're told due to a couple of things. One, he's coming off all the meds/sedatives and two, his eyes are just getting used to taking in everything after being closed for so many days. His pupils are very reactive to a flashlight and we're told it will just take a little time for them to self-regulate. I was wondering how much he was able to focus with the dilation and got my answer this afternoon when he wrote to the Dr. "When can I see?" He must be able to see up close since he's writing some.
His right side is in constant motion when he's awake. They've given up trying to position him certain ways because he wiggles all over the place. And that hand of his...he pulled out his 3rd feeding tube today while three of us were standing there! This picture was taken before the new tube was put in place with quite a bit more tape. :-)
The highlight of my day was a few more words this afternoon. I had just given him a hug and told him I loved him and I got a very soft and horse "Love you too." Being able to truly hug him without worrying about knocking something loose was such a joy but hearing that was all this mom needs to keep plugging away. He also gave his nurse the first smile I've seen with actual upturned sides of his mouth. Can't wait to see his full smile again.
That very soft and horse "Love you too" just warms my heart. Praying for you all.
ReplyDeleteHe looks more like himself in this picture.He is a strong little boy and will continue his fight.All our prayers are still with you.Hugs to all y'all!
ReplyDeleteI either get tears of joy/sadness or chills of happiness every time I read your posts. Hang in there, you are all doing remarkable!
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