This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

September 19, 2007

Monday, May 17, 2010

We thought we would let you know that Michael continues to feel better. He doesn't have a very reliable hunger mechanism, but his appetite is coming back , so he is starting to eat a bit more by mouth then he was last week. Because of gas pains, Mcichael still is not taking as much food by mouth as he was consistently doing in the hospital, but we are hoping to get back to that eventually.

We have been living downstairs a great deal of the time, as we have found it a lot easier to care for him in the family room. It is easier to stay awake with the TV and with the kitchen right there. (We're still trying to organize the new kitchen, which is absolutely wonderful. It was a pain to live through the remodel, but it was so worth it!)

Michael's last pediatrician appointment showed that he has not gained hardly any weight -- within the margin of error. But, the doctor thinks that it was because of his limited eating and increased vomiting while he was sick. We fully expect the weight to continue to rise starting with the next visit.

In the meantime, Michael continues to smile, and he has started to laugh regularly. We have a lot of fun doing the football ref signals. Other babies learn "sooo big." We learn "touchdown!" It makes Michael smile. We also do "first down," "face mask," "time out," "start the clock," "illegal procedure" (which makes him laugh!), and a few others.

The most exciting (and terrifying) thing happened just yesterday morning. It is scary, and a bit gross, so the following paragraphs may not be suitable for all readers. Every Tuesday, Adam and I need to change Michael's trach tube. I removed the old trach tube, Adam inserted the new tube, I reached over to hold the trach in place while Adam began fastening the foam ties. I was just thinking, "that was easier this week then the last few weeks," when Michael puked all over everything. Here I was, holding his trach tube in place, with vomit everywhere -- pooling at the hole in his neck, dripping into his trach tube, just everywhere. Yikes! I immediately began yelling for the nurse to help. We had to suction his trach tube, suction out all the vomit on the outside of his trach near the hole in his neck, cut new foam ties because the old ones got soaked ... it was scary. The nurse didn't have her glasses on, so she was having trouble fastening his ties. We traded places so I could try, and I could hardly fasten the ties myself because my hands were shaking so hard. I kept saying to myself, "if I can get these ties fastened, we can let go of his trach." My hands kept shaking for over an hour.

Michael had the best attitude, though. As soon as all that offending milk was out of his stomach, he just smiled and smiled... kids are so resiliant.

On a different note -- we are behind on our "special thanks" list. Thanks to everyone, as always. But, special thanks this time go to Uncle S for helping Adam this past weekend while Megan was away. Also, thanks to K__, J___ and I____for staying with us last night and tonight to help watch Michael through some of the nights without nurses. And, thanks to Grandma and Grandpa for coming to stay with us for awhile to help keep Michael constantly supervised while we approach our next nursing expiration date. And, last but not least, thanks to all the wonderful folks at Megan's law firm for all their kindness, support and flexibility. Without your advocacy on so many levels, we would be truly lost.

Two last quick notes. First to the folks at the church, if you are reading this, we do still have your dishes and we will be bringing them back. Second, to those of you who have asked for more information on cleft palates and how clefts can relate to breathing problems, I will be answering you as soon as I can.

As always, best wishes to all of you and much thanks for keeping us in your thoughts and prayers.

Love, Megan, Adam, and Michael.

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