Moebius Syndrome and Our Family: School then sickness

Two weeks ago Luke went to school for three days!!!! He did great. He walked in his walker, a lot, which was great! He participated and I think only once got really upset about a song that he didn't want to sing. It was "Wheels on the Bus". I can understand this as this song is the song we sing when we are doing something Luke does not like or we know will hurt. It has a certain cadence to it and there are things we do that are built to fit within the song. Luke knows the verses, the order of the verses, that whatever it is that we are doing will be done before it is over 90% of the time. So when it is sung at other times he gets agitated. Maybe we should have chosen a very unpopular song to sing during unfavorable Luke care but we can't go back now. I guess it can help him to be more accepting to just sit and deal with things he doesn't like because we all have to face them.

So Luke's day at school starts with walking in his walker from the curb to the classroom. He is still really enthralled with everything and looking all over so this can take awhile. Once in the classroom he does fine motor skill exercises (pulling clothes pins off a piece of cardboard, puzzles, using a crayon to draw lines between two points). He then goes to circle time to sing some songs and check the calendar and weather. Then off to gym. The gym is a long ways away and the first day I pushed him in his KidKart. The next day I let him walk and it was a lot of work for him. Half way across the gym (we were almost there) I asked if he wanted to rest and he didn't just sit down but laid down on the floor and looked at the lights. He then got right back up and went over to the kids. After a break he got back into his walker and checked out the things on the gym walls. He likes watching the other kids run around and play. And on Wednesday he got on the rolling scooter things that were in a train the teacher was pulling, in between other kids, and was pulled for about 30 seconds. This is HUGE for Luke!!!!!!! I was beaming. He was so tired when it was time to go that when I went to gather our bags and asked him to walk to his locker he only walked 5 ft and then draped himself over the kids picnic table to rest. :) Thursday we left early because he was falling asleep.

So after gym we come back and have free play and that is when some of the therapists work one on one with the kids. Luke also had some special evaluations for his IEP that is this Friday. Next the kids go to Centers where they do things like paint, play with playdo, string beads, and color. Next is snack where Luke has one of his feedings and plays with the food that the other kids are eating. I like that he gets a chance to be around other kids his age that are eating so that when we get there it won't be quite so foreign to him. Next is reading time and then some songs to close the morning.

Right now I am going to school with Luke to aid with his medical needs but the school is working on getting a nurse to be with Luke. I am glad I finally am getting the nurse and not just trained teachers as Luke has a lot going on and he has some life and death issues that don't have time for 911 or someone else to come help. If his trach comes out he needs help within a minute. I have not left him for that long with anyone other than my parents so this will be a big step for me when they get the nurse in there and I get them trained and leave.

Now what about Hannah during this time? She is being watched by a friend V (and through marriage, family member) who has three little boys. V is great, I feel so good leaving Hannah with her. Hannah really likes her house too. No fussing, no crying just ready for fun. She got to play outside a lot and they have a great yard. I got there one day to pick her up and she came running to me for a hug but then wanted down to keep playing. V took some cute pics so I could see what they are up to and is a great mom to her boys and just loves on Hannah while I am away with Luke. She is such a blessing!!

Well come Sunday Hannah started to get a runny nose and fever. Then Luke got a fever and his lungs were spewing all sorts of yellow icky crud. So we did not go to school or V's all of last week. I got a little sick and so did Kevin. We put Luke on his "Yellow Zone" meds for his lungs which the pulmonlogist said were the meds they give for upper respiratory sickness anyway. We all finally turned a corner on Thursday and took a great walk on a warm sunny afternoon to take in the fall colors before the weather turned frigid and rainy on Friday. This is the first really big sickness we had. I knew it would come with more exposure but I didn't know it would come so fast. This morning Hannah woke up without a crusty nose for the first time in a week!! However, Luke has a fever again tonight and is not breathing as well. Also, his right pin site that had finally started looking good took a turn for the worse and has been oozing and looking very icky. Tomorrow I was planning on school but now I am planning on dropping Hannah off at V's house and heading to the doctor with Luke. Poor boy I thought we could get away from this without a doctor visit but it doesn't look like it. He really likes school. He signs "school" as soon as we get there and even when I stop to drop Hannah off more impatiently like "Let's get going."

Also, this week I started my new adventure as an Independent Consultant for Thirty-One Gifts. Thankfully it was on Monday before sickness really hit me. I got to spend a evening with some friends and had a great Thirty-One party. I am pretty excited about this new venture and the ability it will hopefully bring to keep getting me out of the house, building relationships with friends, and make a little money. Also, I really love the bags and so I am having fun selling and helping people figure out what would work best for them or the people they are buying gifts for :)

We are still working on selling our house, yes it has been a year. We have a possibility but it is not a strait forward deal so we have to talk to the bank about it still, and even then it may not work out. But it is a glimmer of hope. I am talking with God and wondering if he wants me to be content with my current house, which I like in a lot of ways (heated bathroom floors especially, thanks Kevin for installing those) but there are some things that don't work well with Luke (not being able to get a walker through the yard being one and general layout of the house. God didn't bring me Kevin until I stopped looking and so I wonder if I need to work on total surrender to God for this house and maybe stop looking. I don't know but I keep praying and trying to gain more patience. I know God is going to work it all out it is just my timeline has come and gone and God's timing is taking some work to deal with.

Well off to bed for me.

Praises:
Luke loves school.
Hannah loves going to V's house.
I had a great Thirty-One party.
Kevin's parents were up for a great visit this weekend.
We have a great fall view out our front window with reds, yellows and oranges.
We have a house to live in.
Luke is well cared for, we have good nurses for our night shift.
Great family and friends.

Prayer requests:
Luke to get over this sickness and his pin site to get better.
Our house to sell, and for us to find a new one.
The school to find a great nurse to care for Luke while he is at school.

More pictures when we have time to process photos.