We are continuing to have trouble sleeping. Every naptime and bedtime is a fight. It is so hard for me to adjust to having my good sleeper struggle to fall asleep. I am nearing the end of my tank. I desparately need a good night's sleep to recharge. The main problem is Alex's legs are restless and hurting. We finally have a prescriptio​n tonight if it does not get better.

Alex also has a rash on his upper back, neck and ear. We are not sure what he is reacting to but it is his typical allergy rash.

SUrger​y to switch Alex's gtube is scheduled for Wednesday. I do not have a time yet.

On a good note...Alex got a hair cut on Sunday. He looks so much better. Then today the child life girls took him on a field trip. We got to go up to the roof to see the life flight helicopter. It was SO COOL!!!!! We even got to sit in the pilot seat. As soon as I get the pictures I will upload them!

Please pray for calm unhurting legs and sweet dreams tonight.

Ali

Pretty uneventful day...just a lot of sitting around and movie watching. Oh and a BIG PIRATE WIN!!!! Hopefully tomorrow will go quickly.

Ali

The power of prayer is a good thing! Alex had a great night last night. Let me back up...Alex started having diarrhea again yesterday. Finally late yesterday afternoon Dr. Rhoads our GI decided to drop Alex's feeds to 10 cc's/hr. Low and behold the poops stopped (which I knew they would) and not only that but his ammonia levels dropped by half over night. Alex slept from 9 last night until 10:30 this morning. He had a great day. He finished up his EEG around 1:30. He had Physical Therapy around 2:00 and then played football in the hall wiht his nurse and a few doctors for a little while. By the time 3:30 rolled around and we gave him a bath and hooked his TPN and feeds back up he was wiped put. He was sound asleep by 5:00! I asume he will sleep until around 6:00 tomorrow morning.

We have been so lucky to have our favorite nurses caring for us day after day. It makes our days so much more enjoyable to have people we like surrounding us.

The weekend is once again upon us and that is always hard. The days seem so long when there are no doctors or tests to break it up. Alex and Landon are gettting there haircut on Sunday afternoon so that should be good.

Thanks for keeping us in your thoughts and prayers.

Ali