Monday was a very busy day, it began at the Dentist with myself, Isaiah, Ezekiel and Lily getting our teeth cleaned. Natalie brought Luke to me to take from there to his Pulmonologist appointment. It was a follow up appointment after Luke got his tonsils out, his Dr. said that Luke is doing pretty good, he is basically past the most dangerous part of his life since his airway is getting bigger all the time. Unless Luke comes down with a horrible pneumonia he should probably live to be 20 to 30 years old. Wow, what a huge statement to make, of course he did mention that he realizes that only God can know for sure, he is a Christian man and knows that God is the only one who can ultimately decide that for sure.
Wednesday I thought for sure this would be a day that I could stay home and get caught up on some major details around the home, but not to be. I ended up taking Gordy to the eye Dr., he found out that he scratched his cornea and would not be able to put his contacts back in for at least 4 to 5 days. Without his contacts he is legally blind, therefore is of course unable to drive. After getting home I only had a few minutes before Natalie and I had to leave for our appointment with the wedding coordinator at the church that they've decided to get married at. The date has been set it is going to be September 26th at 1:00 p.m. We've gotten a lot of the details done, but we still have a lot to do.
Thursday was another day of appointments for Luke, he saw his OT at noon and then he had an appointment to see his rehab Dr. at 1:30. We decided that since the muscle relaxant medication that Luke has been on has not worked the way we would of liked, we are going to wean him off of it. It was causing him to want to sleep a lot more and looked drugged all the time, he was also losing his head control and just wasn't seeming like our Luke boy. We finally decided to schedule a date for a Bacalafen pump trial. This was a road I didn't want to go down, but alas Luke's muscle tone issues have gotten worse and we need to figure out how we can help him the best way that we can.
Saturday was the day I was sure to finally get caught up on the laundry, which I did get it all washed and dried but still have not finished folding and putting it all away yet, oh well it's a losing battle. Later that afternoon we took the kids to the Hands on Museum and then over to my parent's home so that we could take a walk with them on the wonderful trail near their home.
Sunday was a good day, it began by being quite late for church, Gordy got called to work but at least me and the kids were able to go. After church I fed the kids and then Gordy and I were able to get away for a little bit of time for lunch and a little shopping. Later in the day Amy and I went down to see Daniel, she had never been to his home and it's been way too long since I had been there. We went for a beautiful walk with him and his girl friend Sara, up, up, up, the mountain behind his home, it was breathtakingly beautiful.
Monday was a great day, I woke up to sunshine and thought what a perfect day for a field trip to the Mountain. I loaded up the van with the kids and we took off to Mt. Rainier. It was such a wonderful trip there, so beautiful. We took a short little hike around one of the many trials, we all had a great time, though Luke was not very happy on the way home. He has been much more vocal and seems to be in lots of discomfort since we've cut out one of his muscle relaxant medications. The Dr. told us we could just stop it, but I think that we probably should of weaned him off it. It has been so hard to hear him crying and see the tears in his eyes, if he is not doing better by tomorrow I will be calling his Dr. to be sure that he told me the correct information about weaning him.
Love in Christ,
Luke's Mommy Suzi