Wow, it's been a long time since I last posted. So much has happened since then! We have had illnesses galore, hospital visits, major medical testing done, medicine changes, got a puppy... I could keep going but I will save that for another day!
Last week we traveled to Cincinnati for Brayden's appointments. This was supposed to be a light load, no biggie appointment and we were actually looking forward to a little mini vacation! We left on Wednesday, had appointments Thursday and decided to stay til Saturday for some fun as well as just in case they added anything in like last time. Last time we went, I tried to update on here or Facebook, but to be honest with you things just didn't go as we planned. It was an emotional, heartbreaking, frustrating trip and I have been meaning to get it out to update everyone
We got in late Wednesday night. We checked into our hotel and were frustrated that they were renovating the entire downstairs. In order to get up to our room, we had to drive around back. We walk in and there are carpets laying every which way, very hazardous to the average person, let alone a new walker and a child with a disability. There was dust everywhere, which wasn't good for Nathan. It was late though and we decided to just play it by ear. We went off and got dinner, where the kids were antsy to just be able to stand and walk around. It wasn't the most enjoyable dinner, but we did it! lol! After we ate, we went back to the room and got the kids ready for bed.
Thursday - Brayden had appointments...Just 4 this time around. My mom stayed at the hotel with Nathan and Hayley (my niece) and the game plan was we would get back by lunch and pick them up. Anyone who knows the Neurology appointments knows we should have known better! Anyway, he had fasting bloodwork first thing and then we ran and got some breakfast. 9:00 was his Neurology appointment block. During this time, we saw the Physical Therapist, Research Coordinator, Dietician, nurses and the doctor. For the most part, the PT thought he looked great! Didn't see very much progression of his DMD. We were happy to hear that! She showed us some more stretches and talked to us a little about what the PT at school and CP Rochester should and shouldn't be doing. The research coordinator talked about a trial coming up with Growth Hormones. They are studying to see if an injection of Growth Hormones will slow the progression of the disease. We said we were interested because Charley's Fund is in on it!
Now to the eye opening, heart breaking stuff. Brayden just turned 8. It was the age I dreaded most. I dread every birthday of his, which makes January very difficult to get through but I do my best because we have so many people to celebrate birthdays with. When a child is diagnosed with DMD, they show symptoms that may or may not alert their parents/teachers/care givers that something is wrong. It usually happens around 3-5ish years, sometimes earlier sometimes later. With Brayden, my teacher trained eye noticed at 2.5 that something wasn't right. After a year convincing the doctor that something was off, he was finally diagnosed with DMD. Immediately they started him on steroids and Todd and I went through the grieving process of the son we thought we had. It was a very rough point in our lives to say the least! To make a long story short, the boys start to strengthen up after starting the prednisone and they get to a point where they plateau. Between the ages of 5-7 they are in what is called the honeymoon stage. They look like any other boy their age. I get that comment a lot, "I wouldn't have known if you didn't tell me!" (and no, I am not judging anyone who has said that! I do appreciate people getting to know him and who he is!). This brings me to the heavy heart of Brayden turning 8. :(
Even though Brayden turned 8, we didn't expect to face what we were given on Thursday. We saw a new doctor, since Dr. Wong has such a great reputation she had to add a doctor on to help with some of the patients. I was a little nervous since we switched to Dr. Wong because of her reputation and knowledge, but we just went with it! She was very nice, don't get me wrong. She sat with us and talked to us for a very long time. The thing that made my nerves shot after the 4.5 hour appointment was that she started everything with a positive and then turned it into a negative. For example, Brayden is timed doing certain things such as running, standing from the floor, he is monitored while he walks, climbs steps, hops, balances. After she timed him from laying on the floor to standing up, he did it quicker than last time. She said, "He did great! He even beat his time from last time! BUT that could be because he was tired last time or that he is getting older and knows what to do now." My enthusiasm and happiness was quickly shot down. This happened with a lot of what she said.
Then, to make matters worse we were told that we need to think about ordering a wheelchair. She started talking about options- manual or scooter, this or that. To be honest with you (and my fellow DMD parents know exactly what went through our minds) we were so baffled and didn't expect that at all! I KNOW Brayden is starting to "show" symptoms that he has DMD. I was always told by the doctors before Cincinnati that he is doing great! He is progressing slowly like "this child" is. (not mentioning names). THIS is the whole reason we switched and make this trip twice a year. I didn't want to just hear he looked good! I want to know what "good" is. I did NOT expect to hear the talk of wheelchairs anytime soon. Of course Brayden is extremely upset. He asked my mom out of the blue on the way home, "Grandma, am I REALLY going to have to be in a wheelchair?" It broke my heart.
This whole trip was emotionally draining. I KNOW my son has DMD. I KNOW what the future holds. I didn't expect it this soon. :( Then on top of that, he was told twice by a friend at school and his own brother that he is slow and can't run very fast. He is already so sensitive. Why can't I take his hurt and pain away!? All of these boys...they don't deserve this! I know all of us parents would do anything to make this go away. But the only thing we can do is to push for the MDA walk, push the Shamrock sales this time of year, push for the Telethon, just in general...fundraise for our boys! Please think of Brayden and buy a Shamrock or join/donate our Muscle Team!
http://www2.mda.org/site/TR/Walk/11-A2-332-RochesterDistrict?team_id=7919&pg=team&fr_id=1406
How we passed time during our 4.5 hour appointment!
Brayden was frustrated. He was very antsy from waiting so long!
We blew up a glove for him and Caroline to bat around. No...he didn't want to get off the floor. Instead...
He stuck up the middle finger! Maybe he did see the drivers road rage last week! lol!
And the doctor finally came in!
I wanted to edit this to add what I posted on Facebook:
I do have to clarify that Brayden doesn't need a wheelchair right now full time. Basically her reasoning for ordering it was because it can take a year from the time you order it to the time you actually receive it. Also, insurance only covers it every 5 years. So we would get it for long distances for right now. I think the biggest part of our objection is knowing that once he starts using one, the more he will need it. Not sure if that makes sense. We did leave the appointment in a hurry and didn't get a chance to talk to the woman in charge of all the ordering and we pretty much left it as we would think about it between now and his next appointment in 6 months and order it then. The doctor seemed fine with that and said if we decide earlier, just to call.
