The Latest

Well we went to one of our last specialist appointments for awhile. It is nice to feel like we can take a break and breathe. It has been pretty hectic since he has been born. A newborn adds craziness to your life anyway add one that requires some special care and you are doubly busy. We have seen a total of 7 different specialists. Some state infant development people want to come over and work with Cole and us. It isn't something that has to be done now so I think we will wait and take a break. I have a large file folder FULL of papers, programs, doctors notes, appointment information and general baby stuff... I still haven't read all of it. If it isn't life or death a break would be nice.

Our health providers offers a group of doctors called Cranial Facial Panel. We went to 2 appointments total and were able to talk with a number of specialist during each appointment. They do an overall evaluation and create a plan of care for him. These doctors volunteer their time and it has been very helpful. Levi and I have been very appreciative of these doctors and their advice. It was very nice to stay in one room and have the different doctors come in and out and work off each other. This is apposed to have 6 different appointments at different place on different days. These appointments were rather long if you could not guess that. After all these doctor consults nothing has ,they still won't really do anything surgically for years and years, 5 to 7 years to be exact. Finally a plastic surgeon was able to explain why we have to wait that long. Not only is a 5-7 year old strong enough to handle a surgery but their body is also at good maturity. At around 5-7 years of age your ear is about 90% the size it will be when you are an adult. Since his ear won't grow with him this insures it won't look completely out of place when he is bigger. Also your ear stops changing shape around that point so they can create the best "adult" ear as possible. They will also take rib cartilage to shape and make his ear. That cartilage is also the most plyable around that age. Too much older and it is harder and more brittle to work with. I of course am already concerned and nervous about the procedures it is 3 different surgeries over a matter of months. No one wants to put their child through all that.

So since they won't open his ear up any earlier than that we are going forward with the hearing aid for him. We haven't made much progress there except it does look like our insurance will pay for it. If they don't we've been given information for programs that might be able to help us... probably don't qualify but it is worth a shot. The appointment to be fitted for the hearing aid should be later this month.

One thing that reintroduced itself is his kidney ultrasound. We had an ultrasound in the hospital. When we were there they came and told us that the scan was fine. Well come to find out his left kidney is larger than the right. See kidneys develop the same week the ears develop so if something it wrong with one, something might be wrong with the other. I guess a newborn having one larger kidney is not uncommon... not normal but not uncommon. Kids that don't have Cole's problem still have a slightly large kidney. Everything SHOULD be fine is what the doctor should have said. I guess to some doctors this is so common that they didn't feel that there was anything out of the ordinary and nothing to be concerned about that is why they told us it was fine at first. Different doctors, different perspectives. We will redo the scan in a year and see if the problem fixed itself, stayed the same or gotten worse.

As I mentioned before we are concerned about his facial bone structure. It looks as though his left side of his face is smaller than the right. Everyone who feels his jaw though says that is feels symmetrical, which has been about 4 different doctors. They won't do an x-ray for a few years either so we won't know for sure for awhile. Right now his right cheek is just looks chubbier than the left. However it is clear that back of his head is different on each side. One is larger, they feel the same but the skull looks smaller on the left. The left takes the same shape and pattern as the right... if that makes sense. The orthodontics (yes we saw an orthodontist already :) ) said that ridges in his gums looks completely normal and the inside of his mouth doesn't not give any indication that his jaw is smaller on the left side. Even before we are able to do an x-ray he said that we will probably be able to tell how symmetrical his jaw bone is by how his teeth come in. If they are lined up in the center of his face that means this bone structure is most likely even & symmetrical. If they are off set it means that his face is asymmetrical. If it is slight, no surgery if it is extreme they will lengthen his jaw. It is highly unlikely his will develop an extreme case, we'd already be seeing indicators now that it will be a problem later and we aren't seeing that.

As you can probably tell everything is just a waiting game. The waiting is the worst part. We don't have answers to everything and there is no way to get all the answers either. We just deal with the situation we've been given, have faith and go from there. Some days are harder than others. Some days I have a case of the "Why Me?" or the "Why Him?". The other day I realized if I truly believe that God created Nicolas just the way he wanted him I can't question why He made Cole's ear the way He did, anymore than I can question why Wesley has 3 different colors to his hair or why his eyes are hazel. What gives me the right to pick the things I don't like and ask about those? Cole is such a blessing and though this situation is tough at times it is not a curse or a burden. It is just not the plan I would have created for him but then again I am not the one in charge. Who knows what will come from all of this and maybe we'll never know but we'll take this journey and enjoy it. He is thriving and strong and we could so easily not be so lucky. I do at time fear another a child because really what else could we be given but then again I am not in charge. There have been some harder days lately. Amazing what lack of sleep can do to you and your emotions. Overall we are staying positive, super thankful that he is healthy & so happy :) Wesley was a happy baby too, I might venture though to say that Cole is a happier baby... it makes everything a little bit more tolerable and worth it to see that smile and hear that awesome giggle.