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 29, 2007

Saturday, May 22, 2010

Hi, all. Here is the update on both Michael and Alan.

Alan is in the ICU at Florida Hospital, on a ventilator. We understand that he is doing well. He will be in the hospital for a minimum of 6-8 days and will have to stay in Florida for some time after that. Alan's mom is going down to Orlando on Monday. We may be opening up a separate care page for Alan so that everyone can keep up to date, but in the meantime, I will post here whatever I know. If another care page is created, we will put the name of it here on this page. In the meantime, I do not believe Alan can accept any flowers or gifts, as he is in the ICU. What I can offer is that if you want to send a statement of prayer or support to the family, type it in the Message Board on this care page, and we will be sure that both Lynn and Alan's mom get a copy of what you say.

Michael went to the doctor today and weighed in at 11 pounds and is 23 inches tall. He is doing wonderfully in the growth area, and after what I've been seeing on message boards from other moms of kids with PRS, we are blessed in this area. For those of you interested in learning a bit more about PRS, check out Some of you have also asked for more information about clefts and why Michael has such breathing problems. Well, here goes part one -- about clefts. A "cleft lip" and a "cleft palate" are two different things that sometimes occur together. Michael has a cleft palate, which is a hole in the soft palate of his mouth and is invisible from the outside. If you look in his mouth when he yawns, you can see a large dark space where the "roof" of his mouth should be. (A cleft lip is a hole in the hard part of the palate and is visible from the outside.) Michael's cleft is large and is bilateral across the midline, which means that it is in the center of his mouth and is roughly equal distance on both sides of the center of his mouth. Some clefts are small or large holes on one side or the other. Kids with only cleft lips don't often have breathing problems or eating problems. But a hole in the soft palate means the mouth doesn't have the closure on the inside that it is supposed to. There is no "vacuum seal" for sucking, which can contribute to breathing problems. So, although Michael's breathing problems largely relate to other causes, there is a decent chance that once his cleft palate is repaired, he may be able to control his airway enough to breathe without his trach. Cross your fingers on that one, because we are very hopeful on that. Also, after his next surgery, Michael should begin to eat more, if not all, by mouth. Some kids with PRS have problems with eating for years or for their whole lives, and some have relatively few problems. We believe Michael will have problems until his cleft is repaired, and then he should have very few.

Well, I'm out of space. More later.


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