McKay update

(First official haircut, we are going for the shaggy look but needed to even it up and kind of get rid of the mullet that was forming.)

So I figured it was time for an update about McKay. It makes me a little happy I don't have to update as much. I am hopeful things are slowing down a little bit. I have talked to another mom with a little girl with the same syndrome in California about a lot of different things. She said to me "we are just on auto pilot now". I can't wait for that day!
After receiving our diagnosis we were lucky enough to have a Geneticist appointment up at Primary Children's' the following week. It didn't go quite like I imagined, but the big appointments rarely do. Our geneticist didn't really want to confirm the diagnosis, he still doesn't seem totally sold. McKay does not fit the syndrome one hundred percent, so I think that is why he is questioning it. Kyle and I both feel good about the diagnosis though. The geneticist was however concerned about a few other things. He was worried about his overall proportions so he ordered a full skeletal x ray, over 27 individual x rays. McKay hated it and screamed, cried, and was covered in sweat through the whole thing. The doctor wanted to check his hips, how his skull looked, and his overall bone structure. We did find out he has hip dysplasia, so they sent us to Shriners for that (more on that later). He also conferred with neurosurgeons at Primary Childrens about the skull X ray and his previous MRI to see when we need to do another MRI. So far the consensus is to do another one in January when he is 2. They also did a bunch of blood work but did not find anything there. He was also concerned about how sick he had been (finally someone else was as worried as I was). So he is sending us to Pulmonary to see what they think about his lungs and why he is getting so sick. I am very hopeful to get some answers from this appoitment.
We also are still going to try and see the geneticist in Seattle who diagnosed him. We feel like it might be helpful and beneficial. He has a really long waiting list, so we will see when we can get in to see him.
We also went to Shriners to have them look at his hips. We were aware that they were not normal, he really doesn't have any tension in his hips. He is constantly going through the straddle splits to get in and out of sitting. They did X-rays and said that his left hip does not look like it should. The cartilage that should be formed is behind, it looks like a 12 month old baby's hip, not a 18 month old. The doctor was very hopeful that it would correct itself. Especially if we were able to help him stand more and use those muscles more. I was very grateful that he does not need surgery right now on the hip. She was also worried about how sick he had been. So she wants us to have an evaluation with the speech therapist at Shriners to have a swallow study done. A swallow study would show if he is getting food or drink in his lungs when he eats. Which could be a factor as to why he gets sick and Pneumonia so much. The Doctor also wanted us to have a physical therapy evaluation up there as well. To see if there was anything else they could do to help and possibly get him a stander to help him stand.
We have a very very full month in August with Doctor's appointments. I think within a month we are up to 6 appointments, 3 of which are up at Primary's. We also decided to switch Neurologists, I found a lady in Utah who has a son who has the sister syndrome of what McKay has. We are switching to the Neurologist that she uses, hopefully he will be more familiar with the syndrome and will be able to help us.
In very good news McKay has been doing awesome developmentally. He has finally started saying some constants. We have been waiting for this for a really long time and have been working on it for a long time to. He can now say Da da, Ba ba, Ta Ta, and Ga Ga. I love hearing his little voice and trying to get him to talk to me. It is a great milestone! He has also started with a speech therapist as well (Our therapist count is now up to 4! With one of them coming twice a month, that's 5 therapy appointments a month.)
He also has started army crawling, and he is moving! He doesn't roll any more and just army crawls to get anywhere. He is officially mobile. He loves to crawl to his favorite ball pop toy and to the fridge. His new fascination is with the stairs. His physical therapist has been working on getting him to go up and down. He has lost interest in going up, I think it's a lot of hard work, but is getting better at sliding down with assistance.

Thanks to all of you who ask how he is doing, we appreciate all of the love and concern!