Constants
There are a few things that are constant about my trips lately. I'm always going to have to wait in the security line at the Phoneix Aiport, I'm always going to be cold on the plane, I'm always going to be tired when I arrive in Salt Lake, I always take the same cab with Mohamed from Sudan and the injections always hurt.
At this point in the study, I can't really go into much more detail. I am pretty confident about whether I'm getting the drug or not, but I'm really not supposed to say on any type of medium. So, I don't have much to report, which is part of the reason why I didn't blog about anything two weeks ago. I also kind of ran out of time. During my hospital stay, my cousin, Machelle, came to see me and pick up some baby things for our other cousin who is having a baby. When I got to the airport, there was a really long line for security due to a DoTerra conference that had just concluded. I ate lunch and boarded the plane.
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| That's a lot of steps for a "normal" day |
Today, my appointment is super easy- dosing and done. That's it! I got the injection on the left side of my stomach today (there's bruising on the right). It was painful, but less so than some of the previous injections.
My appointment last week was on a Tuesday, due to the clinicians all being gone that Monday. My Monday was a normal day, though. So, it was no surprise when I finally got in bed, that I had walked over 5 miles that day due to taking care of my house and kids, then, walking
through airports. I was pretty exhausted Monday night. I was also battling a cold that turned into a sinus infection. I was ill all week, but have been taking lots of medicine and antibiotics and my awesome husband has been letting me get lots of rest. I'm feeling pretty good today. I may be on the upswing.
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| Me and Jay 3> |
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| My Aulton |
So I wanted to give an overview of what is happening with Aulton lately since I can't discuss many specifics of the study anymore. The constant with him is that every time I feel I get a grip on a new "problem" in his life, we get hit with something else. We always deal with it. I will explain what's happening with his diagnoses right now starting with the most significant:
Myotonic Dystrophy- Aulton still has generalized muscle weakness. He also has started to get myotonia in localized parts of his body. Most notably in his GI system. We have been able to regulate it with a new round of meds. It is kind of hard to keep track of them all but it has straightened things out. He also has severe tightening of his heel cords, which is why he requires leg braces. We are going to start seeing an orthopedic surgeon who will put Botox in those muscles to see if we can get them to relax a bit. We will know after a couple of doses if it is working. If not, we will start thinking about surgery to cut and lengthen those heel cords. Aulton's organs (also muscles or at least composed of muscles) are doing well. His heart looks good, for which we are extremely grateful. His lungs, although compromised right now due to catching my cold, are good. We still do percussion vest treatments nearly every day. His eyes are near-sighted, but he is old enough that the doctor is no longer worried about him losing vision in his weaker eye. He doesn't have to wear his glasses all the time and we don't have to do eye drops anymore. He will continue to have more muscle cramping as he continues to grow. I don't know how much muscle pain he experiences right now. He continues to see physical, occupational and speech therapists outside of our home every week. He receives speech and OT at school, as well. Aulton has significant cognitive delays. Unfortunately, this new drug does not affect the brain at all. However, I choose not to focus on that, as he will really enjoy running, keeping up with other kids and jumping. And, I've always thought of that as something I would see in Heaven, but seeing on it on Earth, would certainly feel like Heaven. Aulton does know that he is loved completely, 100 percent of the time and that is extremely important. He also will be able to "miss" the hurdles that myotonia causes such as swallowing problems, cataracts, problems lifting, trouble breathing, cardiac issues. Myotonic Dystrophy can be a debilating and deadly disease. I know Aulton is doing great, but it's something I can't take for granted because a lot of people really suffer from this disease.
Autism - This is a tricky diagnosis because Aulton's neurologist, who specializes in myotonic dystrophy, says there are so many characteristics that the diagnoses share, so he may or may not have Autism. However, he has the diagnosis because he gets more services and he displays so many ASD traits that the treatment of them is the same. Aulton is non-verbal and uses an augmentative communication device to talk; he requests things and makes choices. It empowers him at home, school and therapy. Aulton has limited interaction with peers. He is in a new classroom this year, where all his teachers and classmates are new to him. This has been an adjustment. He has limited eye contact depending on his interest in what is going on. He also has quite a few stimulating behaviors that I will discuss in another section, as most of his diagnoses cross over.
Common Variable Immunodeficiency Disorder (CVID)- Aulton was diagnosed with this disease about four months ago. We have given him 14 infusions. For him, the infusion consists of putting two needles in subcutaneous areas weekly. The needles are filled with human antibodies, taken from donated plasma, that we load into a large syringe. The syringe has a pump that disperses the syrupy liquid into the two sites for about 50 minutes. I still hate this. Probably always will. But, it is getting easier. If we manage to do everything perfectly, Aulton sleeps through this. Mike and I have created a little tag team to make sure we don't make any mistakes. They still happen and then, Aulton wakes up, tries (and sometimes succeeds) pulling the needles out. He cries, pinches and is just generally pissed off. I would be too, if I woke up to someone putting needles in me. The next day is sometimes rough, depending on how much pain he is in. We always give him Tylenol the next day in case he has headaches, a common side effect, or is any pain. This disease is just part of Aulton's DNA, it is unrelated to the other diagnoses he has.
Epilepsy- Fortunately, Aulton has not had many seizures since he started medication. He had a petite mal seizure this summer and every once in awhile, Mike or I will glance absonce seizures that last less than a minute. Children with developmental delays often have seizures, but Aulton also has a pre-disposition to them. He has two nephews, on Mike's side, that also have seizures. We will likely keep him on this medication for life because it doesn't have any side-effects for him and it may prevent seizures. We were so lucky that it works and was the first med we tried because so many people have to try many mediciations and dosages before they find one that works for their child.
Sensory Processing Disorder - This is a very common part of myotonic dystrophy and autism. Aulton is a "sensory seeker". He loves any kind of deep pressure and sometimes creates it on his own, by finding tight spaces to squeeze into or crossing his legs and clenching his muscles. Any kind of stimuli is hard for him to process. Sounds are louder, tastebuds are weaker, smells are stronger, things look brighter and textures feel different to Aulton. His brain simply cannot process all the information that his body is feeling. He "stims" a lot and I kind of hate it, especially how he covers his ears all the time!
PICA - Aulton will eat pretty much anything - that is not supposed to be eaten. It's kind of an awful part of his sensory issues. On Friday, he was not himself at therapy and when I dropped him off at school, afterward, I tried to explain. About half way into my explanation, he vomited, the entire contents of his stomach all over. I took him to the doctor because strep has been going around and I wanted to rule that, as well as anything else, out. The pediatrician said there is a bug going around, but also admitted he could have just ate something he shouldn't have. I think it was a bug this time, but we never really know.
ADD- Aulton has been diagnosed with Attention Deficit Disorder. I don't know. I think his cognitive issues are significant enough that a doctor decided he can't focus. He is able to focus on things that are motivating, just like a typical person. Lyla is pretty focused on the show "Descendants" and cooking. Aulton is pretty focused on Dora the Explorer and swinging. I think it's easier to throw a label on this type of thing.OCD- Speaking of Dora. He has an official diagnosis of OCD based on his obsession with the tv character. I think it's kind of bogus.
So, that in a nutshell is what is going on with Aulton's diagnoses currently. I hate to make it seem like this is all he's about. These things are definitely part of him, but they do not define him. He is the most innocent, pure, calm, content person that I have ever met and HE is why I'm doing this.
