End of Week 8

For dinner on Wednesday night, what did you have? Just in case you were wondering ....Ian had chicken, rice, carrots, salad with ranch dressing, bread and cookies. He ate like a champ and picked up with his old habits; looks were given to me if I was not moving fast enough for him. Brian spoke with Ian on the phone before bed and when he asked Ian how dinner was, Ian replied GREAT! He has continued to eat and is doing well. While this is going on, the doctors are decreasing his g-tube feeds.

Thursday was a great day. He was up and sitting in his chair for about 30 minutes, then back in bed for about 30 minutes. before getting out of bed again around 11 for some speech therapy. Once that was over he got a visit from Uncle David and Devin. thanks to Uncle David feeding him lunch....he had a great one...oh yea, he went out into the zone (an open area on the floor where the kids can hang out) and then it was a mean game of battleship between team Ian and Uncle David again team Devin. It was then time for group in the playroom. Yesterday was National Rare Disease Day and some of the kids made posters to support it...

And what do you think...produced by Ian....

We have been able to arrange to have a sitter in the room with Ian from 7pm to 7am....the MD said we could have it every night but we decided to do it every other night...this is the start of getting Ian ready for home and used to others being there for him besides Brian and I. On Tuesday night after 51 days, Brian and I were in the house at the same time. Ian said that night was not so good, although the nursing staff said he had a good night. Friday morning when I got to the hospital, Ian was full of smiles; maybe it had something to do with Yuba being in bed with him during OT (did I mention this was at 8:00am). When I asked him how the night was he told me GREAT...yea...now maybe one of the next few nights we have the sitter at the hospital maybe I actually I will have a GREAT night and be able to get some sleep.

Today, was a good day as well. Brian did his 2nd trach change. We both only have one more to do...getting closer to home. We found out today that 4 months of nursing has been approved by the insurance company...each day is a little different on the number of hours depending on his schedule...so we will begin to figure out what we have. I do know our hard hours before we had this hospital stay is still going to be our hard hours as we will not have nursing then, so I am hoping to get "help" from others....interested in finding out more....let me know. Tonight, Brian and I go to meet a friend who I have been in contact with regarding VRK1....they came from North Carolina to meet with our team and to find out what is going on with their son...it was great to finally meet them in person and so happy for the wonderful appointment they had....can't wait for them to get their results....even if it is not VRK1...maybe just answers and that is still okay.

Tomorrow, we are going to begin the process of getting things ready for Ian's homecoming....we know we still have some time but that time will come quickly and with some training things we still have to do; having time to get things ready at home may not be as easy. Hoping it is easier then we are thinking but for some reason, I am sure it won't be. Tomorrow beings week 9 of Ian's hospitalization....