Yesterday, before everything was downhill, Emmett built this really cool castle out of blocks. He said something about it being Spiderman's house. Great job Emmett. You're so creative. This was posted via WordPress for Android, courtesy of Samsungs Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me. Please join our Autism Help Forums Look for "Autism Help" app at the Google Play Store
I learned something new yesterday. Rather, I gained a better understanding of what's going to be happening today at the Cleveland Clinic. Gavin is having 3 skin biopsies done this morning. The doctor called Monday afternoon, prior to our to our trip to Akron Children's Hospital and explained the entire procedure. The biopsies will be taken from his leg. He will receive 3 injections of lidocaine, to numb the general areas. Once that is done, they will take 3 skin samples. My understanding is that it's like a large hallow needle, that is used to puncture the skin and remove the sample. I'm pretty sure that this is notgoing to go over well with Gavin. I also learned more about what they are looking for. It's called small fiber neuropathy.…
Gavin was released and we came home. Gavin is as stable as possible. This was confirmed to be an autonomic issue with no underlying infection etc. Cleveland wants us to make the trip in the morning and get what needs to be done, done. I'm completely exhausted having dealt with Gavin's unpleasant attitude while we were are the hospital and the tantrums this morning. We have a very, very long day tomorrow. Thanks again for all the thoughts and prayers. This was posted via WordPress for Android, courtesy of Samsungs Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me. Please join our Autism Help Forums Look for "Autism Help" app at the Google Play Store
There was just a shift change here at Akron Children's Hospital. However, someone must be looking out for us because the doctor that just came on did his residency at the Cleveland Clinic under Gavin's autonomic specialist. This means that he is very familiar with Dr. Moodley and has a very easy time contacting him. This is an absolute godsend because he specializes in this and knows what Dr. Moodley would want done. This is a huge string of luck for both us and Gavin. They are going to be doing some extensive blood work to make sure there is not another cause to this current problem. Once we have those results, we will better know what to do. This was posted via WordPress for Android, courtesy of Samsungs Galaxy…
We are at Akron Children's Hospital and they got Gavin back right away. During the trip Gavin's heart rate went down. When checked during intake it was 102 bpm. When we got to his room and they hooked him up to the monitor, his heart rate stayed lower. The doctor came in and wanted to know what was going on. The monitor was showing everything was okay. This is where we begin to feel stupid for making a big deal out of nothing. However, upon examination, the doctor asked Gavin to sit up so he could grab some lung sounds. The simple act of leaning forward, caused Gavin's heart rate to jump into the 130's again. The doctor layed him flat and it came back down. This was basically a…
We heard back from the wonderful Doctors at the Cleveland Clinic. They do not want him to make the trip to Cleveland unless Akron Children's Hospital transfers him directly. They want him to be seen immediately at Akron Children's Hospital. Emmett is going to Lizze's parents in a few minutes and then we will leave. It's important to note that while his heart rate is elevated, he is otherwise a-symptomatic, meaning he has no other outward symptoms. However, the concern is that his body is obviously trying to compensate for something, hence the 130 bpm. Kids tend to compensate quite well but than go down hill very rapidly. This is what we are seeking to avoid or at least be in the right place when it happens. Gavin's tantrum this…
The other shoe is beginning to drop and we can see it coming. It's like one of those dreams where you're trying to run away but you're stuck in place and can't get away. I just got off the phone with Gavin’s immunologist are Akron Children's Hospital. She called because Gavin's labs are a bit off. His white cell count is okay, which is good. However, his hemoglobin levels are low. She said that they aren't to bad but it was enough to warrant a call. She wanted to know how he's been doing. I explained that his heart rate has been pretty high for the last few days. Right now his resting heart rate is about 130 bpm. This has her concerned and she said is early signs of…
I wanted to take a few minutes and update all of you on the current status of Operation Hope. I was able to speak with someone from Stark County Family Council/Wraparound this morning. I spoke with a very pleasant and compassionate woman who did an intake. The ball is now officially rolling. We have records to collect and paperwork to fill out, but this process is moving much faster and smoother, at least so far, than I could have hoped for. Basically, once I have the paperwork turned in, we will meet with the committee who makes the decisions about funding. We will have a conversation, and you all know, I'm all about dialog. I'm so grateful to have a chance to speak with them about helping Gavin and the…