Sam is still in some pain, he didn't open his eyes for about 2 hours this morning. He is so pathetic, just about kills us to see him as if he were really 100% blind. He feels his way along and reaches for us. When he does finally open his good eye, thankfully the bad eye stays closed, I've got a few glances and it looks bad. Even before this surgery he usually kept that eye closed or almost closed. We think it will stayed closed now for the most part. This all makes us thankful for the sight he has, things could be harder for him.
Daddy spent alot of time with Sam today. It's Jon's day off and Sam needed lots of love and reassurance. Jon is singing to him "The Meeting In The Air" an old gospel hymn that Sam loves!
Selah is doing EXCELLENT! I just found out she didn't do too good on Monday and there were some concerns but by Tuesday she was better and got better daily. Honestly I told Jon not to tell me anything bad unless one of the kids ended up in the hospital! I knew I couldn't do anything & I was dealing with enough by myself with Sam. I'm glad I didn't know what was going on!!!!
Her heart rate is so nice and low all day. Last night we didn't have nursing (we knew before hand that our nurse had had some plans for months) Selah slept all night long, low normal heart rates, didn't need any extra meds, she didn't wake up to be changed until 5 am! We couldn't be anymore happier with things. Her main day nurse and I talked today about how to keep her out of the hospital. We know if her heart rate goes up, she is sick....without fail, that has been the case. We are going to go in and meet with our pediatrician and come up with a plan. He worked with us with Sam. If you know us, you may remember how often Sam was in the hospital the first 5 years of his life. It was just as often as Selah has been. After he was older & somewhat more "stable" our pediatrician worked with me to keep him out of the hospital as much as possible. We had some plans in place and it worked! Outside of the accident, Sam has not been an overnight patient for THREE full years this month!!!!!!!!! Years ago, that would have seem impossible!
So we feel like there are somethings we can have in place if we start seeing signs she is getting sick. And it will be even more safer to work on keeping her home since she has home nursing, and Sam did not. So that is our plan and I think it is a great idea and will help her alot!!!
Since Selah has been home form the hospital, all her nurses are reporting seeing more purposeful movements. She moves, but some of her movements are more neurological reactions, not something she is doing on her own. But lately, there has been a slight change, we have seen it too. Today I gave her a bath, then sat her in the wheelchair to dry her hair and she totally held her head up! It was in order to get away from the brush but nevertheless, she held her head up quite nicely!
We are fully staffed with 24 hour nursing now! We were when we first came home but there were some issues and we took over night nursing....then we learned it was hard to function after being up all night. She is really stable, until she is not...and when she isn't, it's hard. So we requested night nursing again. We were sent a nice older lady, who is a true professional. She works 4 nights a week. Then the lady who had worked on Thursday for us was able to come back to work after being involved in a horrible car accident. It worked out best for her to take night shifts for now so she is doing the other 3 nights. She is amazing skilled also. Then we have our main day nurse who really pulls everything together with all the many specialists and therapists. She is perfect for us. We totally see eye to eye on things and she helps me think through different avenues. Then our weekend day nurse, is a Franciscan monk! He has taken vows and nursing is his vocation. He is not a priest but somewhat in the middle. I asked him once if he could hear confessions and he told me I could confess anything I wanted to him but he couldnt' give me absolutes....LOLOLOL! We love his sense of humor and enjoy him in our home. We all enjoy hearing his stories and talking with him.
I have to tell you I was not ready for anyone to see Selah when we first got home. But our weekend nurse and Jon cooked up a scheme to get her to church the first Sunday. Our nurse just got her ready and was adamant we were going! He helped me break through that barrier...even tho I sobbed the whole time. Now we laugh at how he "tricked " me! He also used to play in a country band and he can play the tambourine like a Pentecostal from the hills LOL! A lady brought one to church one day and somehow he started messing around with it and shocked everyone! He is a trip!
One thing I LOVE about all the nurses, is they genuinely care about Selah and all four of them would be thrilled if she were healed! They are all easy to have in our home and it's worked out really nicely for us and them. I told our home health care agency that we have the best nurses they have on staff....
I've spent some extra time with Sarah today. She did ok with me gone, but sure has been cuddly with me today. I took her out to her little pool to play and she just loved it. I would have taken pictures but she went skinny dipping LOL!
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A year ago today.....I couldn't believe we were all waking up under one roof.... Sarah was a bit overwhelmed by SPACE, and really liked sitting in this baby swing...if you know her, can you think of her just sitting for more than a minute at a time now?
And Selah wouldn't leave their bedroom without one of us carrying her.
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Here are the pictures from last Saturday night when Shad got to take out the game ball at the Tampa Bay Storm vs New Orleans Voodoo Arena Football game. He had a blast!
Jon and Shad waiting to go out
Shad waiting for his big moment
See Shad with his blue shirt on
Jon was a bit uncomfortable in the cheerleader's section LOL
Shad man
Drew & Steve....this picture is so funny to me!
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Please pray for Sam & Selah!!!!
God is so amazing to intertwine the ordinary with the extraordinary...and to make much out of little. So glad for the extraordinary opportunity Shad had in the midst of all the ordinary stuff going on! Thanks for giving us a glimpse of all the facets of your life!
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