Moebius Syndrome and Our Family: One long trip and some realizations

So I decided to take my 2 month old and my 2 1/2 year old on a state tour stopping to see doctors in Ann Arbor and Grand Rapids this past Wednesday. My mom has already said "I told you so" in that this was not a good idea. I in my logical, not dealing with small children in cars thought this would save us 4-5 hours of driving if we did it in two appointments. I did not think about pouring rain, a very windy day, getting 3 1/2 hours of sleep becuase my baby didn't want to go to sleep, and what would happen when shutting a teething 2 month old and active 2 1/2 year old in a car most of the day would be like. We made it and we are home. My mom went with me and at one point only an hour from home we were not sure if we were going to make it. But we did...I was sick the next day and my husband had to stay home from work to take care of the kids to top it all off. So kudos to my mom for driving through crazy weather, construction, by accidents, a crying infant and with a Luke that needed suctioning often (mostly due to the weather and dry car air) and by the end was getting upset and pulling on his trach so I was turned around in my seat suctioning him.

So why did we go on this crazy adventure? We went to a consultation with a doctor about jaw surgery for Luke. Another Moebius girl we know in our state used this doctor for jaw surgery and our ENT (we share most of our doctors) recommended him. I really like him and his resident and intern. They were friendly informative and seemed full of action. They are gathering some information from some of our other doctors and will be getting back to us with a full recommendation soon. Luke did pretty good and the doctor got a good look in his mouth while he had his hands in it so we only had to hold Luke down for a very short time for a better look. Luke does not like medical professionals in the office setting. He does not care if they are only listening to his lungs or if they are trying to get blood. It is all defenses up for it all. And his mouth is one of the worst places you can try to look.

Then we went to see our pulmonologist, for this first time since sleep study results from July were back. She did not have full results from the October sleep study, only prelimiaries so we will hear more when they come back. However, I was thinking that Luke was on the vent at night just for sleep apenea (possibly denial on my part) but our pulmonologist was clear that he still was not breathing adequately at night to be without the vent. She said that during the day he does good because a different part of his brain (I can't remember which part) can help with breathing during awake time. When Luke goes to sleep this part shuts off and leaves the breathing to the pons and medela or one or the other. These two parts are not normal in Luke's brain and have been show in the literature to be abnormal in Moebius people. She said that his breathing problems are in his brain and that there really isn't much we can do but wait and hope he grows out of them. WOW, it really hit me that I am looking at Luke on the vent for sleeping long term, but not necessarily forever, and that the trach will be in long term as well. I do believe God could work a miralcle and things could change shortly but we forge on ahead with long term ventilation for Luke.

It makes me sad as I don't want my baby boy hooked to machines when he sleep and have to breathe through his neck and all the extra care that goes with that. I want him to be as normal as possible. I am working on really coming to terms with that but I am not sure I am there yet.

Luke however, is forging ahead. He is now pulling himself to stand against furniture. He walks along the furniture as well. He is crawling fast all over and is trying to stand on his own. He did have more stitches due to an accident with his walker, gravity and his glasses but seems no worse for the wear.

Hannah is 2 months old and doing great. She is teething (my family teeths early) and so has become a fussier baby. She is sleeping through the night though, once she gets asleep. She is smiling a lot and babbles and I think I have even heard her giggle. She is generally a happy baby and loves to watch Luke do whatever Luke is doing. She was baptized a couple of weeks ago and all sorts of family came to see her and Luke. We had a great time.

Here are some not so current pics, but more current than the previous ones...