Posts tagged “cystic fibrosis

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Busy Busy Busy

Well let me start off two weeks ago today. I got a call from A’s chest team saying that they believe that he just might have cystic fibrosis even though his sweat test that we did in March came back negative. WHY? Well because of the pseudomonas. And if he comes back negative for cystic fibrosis then they want to look into primary cilliary dyskenesia. So a lot of people have been saying “well at least they are doing what they should be now.” Yes, very true, BUT they are only looking into things now because of the pseudomonas. That’s it. I have been telling them for YEARS that they need to look closer at his lungs. In my mind it is the ONLY thing that they have not ruled out 100%.

Last Monday we headed to Sick Kids. We were told to not be late for our appointment as they would rebook us and that would be it. We have been waiting for this genetics appointment now for over a year. Anyhow we were there on time and placed into a room. A nurse had come in and took a little bit of information down about A and left telling us they would be right back. This was at about 1pm. At 2:30pm I went out and asked the man at the desk if we were forgot about. I mean for real, one and a half hours sitting in a room with a child that usually is napping at this time?? He told me the doctors were probably in the back room talking about A. Hmmmm well they didn’t know much yet, how could they be talking that in depth about him? That so wasn’t the case.

Guess what time we finally saw the doctor? 4:30pm!!!!! No apology, nothing! I was not too impressed and can’t believe that a doctors office can get THAT behind. Just not right at all for families to wait this long.

Anyways, we talked about A. He had read his files. Well some of them. He would need a year to read everything. He feels that something else is going on with Ashton but again just has no idea what or where to begin. One of the things that he was really hoping for was a new MRI. Unfortunately this is not going to happen as A has his cochlear implant and cannot have an MRI. The only way this would be possible would be to remove the implant, do the MRI and then replace the implant. And there is not a chance that I would do this to him!

So we left the appointment to head down to get a bunch of bloodwork done for this genetics doctor as well as the gentic bloodwork for the cystic fibrosis. When we go back to this doctor in 6-12months we will discuss the results as well as talk about doing biopsies and a spinal tap to check for neurotransmitters. Nothing like moving slow eh?

In other news. We had H’s service here on Sunday, Mothers Day. It was perfect for us and I feel much more at ease with everything. I definitely needed to do it to help me heal. To ease the pain. To put him to rest. We did a balloon release for him at the end of the service which was really awesome. I had pictures laminated of him and we attached one to the balloons before they were sent off. I also mailed out a ton for people that wanted to be a part of this for him. I have had six different people email their pictures already of the release that they did and WOW how touching. I cry every time I look at them. It means so much to me that people care enough to want to do this for us.

I will post the pictures we took soon…I have no space left on this blog so I am trying to figure that out!