Adjusting to our new routine.

We are all happy to be back at home!!! On Wed night while giving Carson a bath, he expressed how happy he was. (Remember he had not had a real bath in 7 nights.) During his bath he talked to us for about 15 min!!! it was fantastic to hear. We interpreted him telling us how happy he was to be home, how good his bath felt and how much better he was feeling. Carson has again been getting up between 3 and 4 am to have conversations with us. How can we turn that down? We love to hear it, even though we like very much to be sleeping.

We are getting adjusted to all of Carson's new machines. His new machines include: oxygen tank, O2 sat and heart rate monitor, feeding tube with pump. He is still requiring his 'old' machines as well: a suction machine and nebulizer. Below you can find a picture of his new set up in our living room, right along side of the Christmas decorations. He has not needed oxygen for the past 48 hours...this is fantastic!!! He is holding his own, keeping his O2 saturation level above 92. The tube coming out of his nose is his feeding tube, this goes into his stomach. He requires 5 feeds a day, 3 hours apart and a continuous drip of formula during the night. This gives Carson about 32 ounces in a 24 hour period. Both formula and his meds are given through the tube.

Carson has some follow up appointments. We saw his pediatrician on Fri, he is still wheezing, so he is still in the yellow zone for his asthma and will probably stay there for a few more weeks. We have a follow up with the OT at Children's Mercy on Dec 23, here she will say if we are still concerned with aspirations. If the OT is still concerned we hope to have a swallow study sooner than Feb 13. If she is not concerned we may be able to try feeding through the mouth again!! We have also been getting set up with more services here at home. With all of his new machines Carson qualifies to have a nurse here at home with us!!! What a help that will be with all the other kiddos here also.

We did open up one of his Christmas presents early...his Aunt Becky got him a Cubs bean bag. He is pretty comfortable in it. (Picture below)

The day care kids were very happy to have us home. They are also adjusting well to Carson's machines. At first they did not like them, they thought I was hurting Carson and would tell me 'all done' if I was doing something to Carson. You can see below the sympathy that they give Carson. Even though the kids are so young and can not comprehend what is going on, they know something is different with Carson and they have to be supper gentle with him. The kids give Carson plenty of kisses, hugs and compassion...it is wonderful to see.

That is all I can think of for now with the update. Just one more thing...We can not thank you enough for all of your support! As Jeff and I have been taking care of Carson, our family and friends have been taking care of us. We have had meals delivered, help with the extra kiddos, help with cleaning the house, laundry and snuggling with Carson. Thank you just does not say enough...we love you all!!!

We do believe in the good Lord and continue to ask Him for a miracle to cure Carson.

Enjoy the pics...