The kids are doing good, Sam is finding his way around and Sarah went down the hallway on her bottom the other day. She was looking for me. Selah seems to love her room and her sleep has been great. She used to wake up every night around 3am but has been sleeping most nights from 9pm-6am which is perfect. Selah is able to have showers daily! Before we only gave her a shower weekly as it was hard and dangerous to get her down the narrow hall and into the bathroom.. She would get so stressed out and it was scary getting her in. She had to be carried sideways which was dangerous for her and for her nurse or Steve. Now she can be wheeled from her bed, in her bath chair right into the shower. She loves it. The nurses love it too. We also got her a Hoyer lift, something we will need as she grows to move her safely. Her room is so spacious and airy, she can sit in her chair at the window and seems to enjoy it. It is so wonderful for her to have all these conveniences and for that I am so very thankful. .
The big kids are doing great too! They love the house and the WIFI, of course. Even tho they have their own rooms, they tend to play video games or watch tv in Steve's room until it's time for Shad to go to bed. I love that they like being together even when they don't have to be:)
We're busy. Our church gave us a housewarming shower last Friday. Man we were so blessed!!! A dear friend bought us rockers for our front porch! Now it looks like home! Everyone was so generous. We outfitted Selah's room with a microwave, fridge, coffee pot, a tv ( a nurse brought in) and wifi. Our nurses are happy. They worked for 2.5 years in a small room, having to share a bath with the whole family. Now they are able to have some comforts too.
I'm so tired every day it is pathetic. I tend to wake up early as our room has blinds and faces the east. Once I'm awake I can't go back to sleep because I think of all I have left to do.. Then I stay up late.... All my aches and pains are back with a vengeance. Somehow in the move, my "bird finger" aka middle finger got hurt and has stayed swollen. My husband says it's poetic justice because I 've used it too much over the years.
But the house is great. We are just getting used to it. It seems more like a resort at this point than our home. After we'd gotten everything out of our old house, I went back and had a good cry. Almost a decade of memories were in those small walls. Some sad times but mostly happy times with my favorite people on earth. It's been renovated because we have someone moving into it.
Today we took Sam to Neumour's Children's. We decided to try an eye specialist there. Our doctor in NY would like us to have someone near us to follow Sam. We'd tried an adult ophthalmologist but he seemed too overwhelmed with all the "extras" that is Sam's eyes. We were pleased with this young doctor that we saw today. She seemed to be willing to work with Dr A and actually knew of him. She tried checking Sam's eye pressures but with an implant it is next to impossible. But if she was right, his pressure is around 23 which is too high. Dr A tends to check his pressure just by feeling the eye and by comparing the optic nerve to pictures he'd taken before of it. He'd warned me not to ever get too excited about a reading that someone else does who is not familiar with corneal implants. So I'm trying not to.....She is going to call Dr A and see what he thinks. We were planning to go to NY in Sept or October but may have to go sooner if there is really an issue going on. The pressure measures how the glaucoma is doing. A reading of 14 is good....19 is worrisome....above 20...is not good. So we wait and see what is decided. We did love to watch Sam play with the toys for the first time ever.