McKay Update

So it really has been a while since I did a McKay update. I am trying to decide if I do them more often, or if people are tired of them. I recently transferred my blog into a book and part of that blog book was McKay's stay in the NICU. I can't believe how good I was about putting updates up. I will admit it was nice to be able to go back and read about what happened. So I think I will continue on doing McKay's updates. I am not sure how many people read them, but I do think they are good for me and for our family history. Our last update was in September! Wow, crazy long! I can't remember specifically every single doctor appointment we have had in that time, but there have been some memorable ones. In November we met with his Geneticist (who I love) he still was concerned about his weight and just his overall growth. He requested we do a blood draw to check for a few things. He also wanted to do a x ray to check his bone age. So we did all of that and came out with the results that one of the Growth hormones your body produces, well McKay really isn't making any. His level was so low it was undetectable. The x ray also showed that his bone age was delayed, delayed to about 18-24 months ( He was about 33 months at the time it was done.) So the geneticist sent us to an Endocrinologist to get further instruction on those results. (Kelli was glad we were going to see an Endocrinologist, her biggest fear is that McKay will be a diabetic) The Endocrinologist said yes his levels were low, and yes his bone age was delayed. But everything was not enough to qualify him for growth hormone injections. Because his height was higher (at the time about 35th percentile) there is no way the insurance would approve it. They usually will only approve it below 20. So he said to keep an eye on it and if his height dropped below the 20th percentile to come back in. He also said there was a test that they could do that would tell whether McKay would be diabetic or not.  But he really did not want to put him through all of that blood work if he didn't have anything else at the moment we needed to test. So he said we might do it later on down the road.
Also in December we had his next brain and spine MRI. It went well and the results we got were "everything is stable" no change good or bad. We also met with our very "not personable" Neurosurgeon and he said about the same thing. He did say he still needs to be monitored for the Chiari and as well for the syrnix in his back. No change is good as of right now.
In January we met with his Opthomologist and the Audiologist. The Opthomologist noticed that his left eye was turning in even with his glasses. I had not noticed this before. He said to keep an eye on it but if it got worse surgery may be necessary to fix it. I am sad to say it has gotten worse and I notice it a lot more. His vision therapist even noticed it, so we'll see what that all means. We also got his new glasses in January, not much of a change for them. The Audiologist tested his hearing again, we tested it in September and could not get a good read on his test. There was A LOT of wax buildup. So we had his ears cleaned out a couple of weeks before the next follow up appointment. They said there was still some wax in there though. They were able to get his right ear to pass but not his left. They were concerned because it was not not passing because of wax buildup either. So they said they wanted to see us again in 3-4 months to retest his ears. We will have his ears cleaned out the day before the appointment in hopes that it will help. If he does not pass this time we will have to go visit our ENT again and see what happens from there.
We met with a new Pulmonologist in March. The one that we LOVED  left about a year ago. We saw someone different at Priamry's after he left but to say I was not impressed would be an understatement. So we switched to a new one that I had heard great things about. She is wonderful!!! She listened to our fully story and history of McKay and said she had gone back to read most clinical notes and specialist notes (Hooray, this is my biggest gripe about most of my specialist. They don't care to read what the other doctor said!) She had even looked over everything from his hospital stay in January. She again noted that his chest and neck x ray were very impressive (not in a good way) from that hospital stay. I expressed my concerns and what we needed to have done and she listened and added a few more. He will have a sleep study done in a couple of weeks. With that sleep study they will be doing an EEG to check for seizures. McKay has such a risk for seizures and he has never had an EEG before. He also has had a few odd instances that make me wonder if he was having some seizure activity. After the sleep study we will see what the results are. My hope is that he gets to come off oxygen at night, although I think there is a slim to none chance that will happen. She also wants to follow up with his ENT about his subgloticstenosis (small airway). She wants to push to have another scope done of it to see where it is at. She also listened to his breathing and asked if he was healthy, I told her 100 percent healthy at that time. She listened again and said she was not happy with how his breathing sounded. I was a little surprised because I usually only heard this when he is sick. She said he really isn't moving as much air as he should be and doesn't ever take a deep breath. We have heard that before. So she put him on twice daily nebulizer steroid treatments until we see her next. If thing sound the same when we go back in we will re-evaluate. She said she things it is one of three things, his subgloticstenosis, he has chronic lung disease (we have heard that before too), or Asthma or reactive airway disease. So we'll see what happens when we go back the beginning of June.
We also saw the Nuerologist a few weeks ago. There wasn't too much new that came out of it. We went over his brain MRI from December. Basically he has an abnormal brain and he has a huge pocket of fluid in his back. I talked to the Nuerologist about the possibility of seizures and he wants me to try and get some video of what I think is seizure activity and he wants a full EEG with the sleep study. We will get the results from the EEG a week after his sleep study. Depending on what it says will determine our next course of action.
McKay has been doing another round of intensive physical therapy at Now I can. This is the place he went last October and was instrumental in getting him to walk. I am happy to report it is going much better than last time. Last time it was him crying the entire time for all 3 weeks, there is much less crying and he seems to be cooperating with the therapists a lot more. Our goals for this time have been walking on uneven surfaces (he has a hard time with grass, pavement, and mulch), stairs (or starting the stair process), and improve his gait and balance. So far we have already seen improvement in his balance and on uneven surfaces. I think it will be a great round of therapy for him! Even if it is crazy hard!
We also have been very busy with all of his other therapy appointments and school home therapy appointments. It is A LOT of appointments and I am very anxious for summer and for a break for us and for McKay. We have decided to majorly trim back his therapy for the summer and enjoy the summer and his time before school. He will still get some, but not near the amount he is getting now. We are in the process of figuring out what school he will go to in the fall and what he will be doing there. It has been a very intense and hard decision. But after talking to his therapists and praying about it we have decided to put him in the Autism preschool through Alpine school district. I think it will be really really good for him. It is going to be hard though. We are still trying to figure out the logistics of it and how it is all going to work. They want him to go for 6 hours a day 5 days a week and we are not sure if he is quite ready for that. So we will hopefully get some more info this summer and be all ready to start at the school in the fall. Exciting, but absolutely terrifying for me!
We were also happy to finally hear word that McKay's wheelchair was approved! I know some have asked why we are still getting him a wheelchair even if he can walk. Originally we tried to get an adaptive stroller ( a larger special needs stroller) for McKay but our insurance immediately denied it not mater what we did. So we talked to a new Physical therapist about our options. She really said she thought a wheelchair would be the best for him. It was so hard to hear that, and so hard to see him in it the first time. I thought we would be able to avoid a wheelchair, Kyle told me he wasn't surprised he had always thought he would need one at some point. But after talking to her I realize getting him a wheelchair was the best option. For McKay the wheelchair will strictly be used for transit. He will need/use it to get on and off of the bus, into the classroom, to the lunchroom, and out to recess. All things most likely he would not be able to walk himself, or it would take him a VERY long time. His walking has improved but his endurance still is not great and he gets very fatigued very very quickly. There is no way he could just walk down to the park, walk into Primary's for a doctor's appointment, or walk around the zoo with us. He will need something to assist and help him and most likely will need that help and assistance for a few years. Otherwise it is me carrying him and my back doesn't love that idea since he is almost 40 lbs! So after over 9 months of work I was so happy to hear it was approved. You would not believe the phone calls made by me, Kyle, our peds nurse, our ped and countless others. We are so excited for it to arrive in a couple of weeks. We picked out Scarlett red with gray acessory pieces, go Buckeyes. The kids are really excited because the wheels flash too. I think it will be really good for McKay and will be something we are really glad to have.
So if you read this whole thing props to you, this is the shortened condensed version. But enough info to remember it all I think!