Hunter Update

We got the results of the 4th test last night. The normal range for Aldalase is between 3 and 8, Hunter was 18.6 so definately elevated. This cannot confirm Muscular Dystrophy yet and his pediatrician tried to call the Muscle Specialist at Primary Children's Hospital but she is on vacation until next week...go figure. So he spoke to another specialist in that department and they both agreed that Hunter needs to have the test redone to keep an eye on all the levels. I asked him off the record if he could tell us if this was leaning towards Muscular Dystrophy(MD) and he said that it is definately on the list but it could be something else like a myocytis disease which effects the skin and the muscles. Then he asked me if Hunter's eyelids haev ever been purpleish like eye shadow and I said no. He said ok that it was a big marker for the skin and muscle one. He said as far as the levels are concerned with today he doesn't think that they will change given Hunter's history.
My feeling by what he has said to me all along is that we are still probably more than 99.9% dealing with muscular dystrophy. He said that he doesn't think the numbers will change at all due to Hunter's history. I try hard not to cry right now and just go with the flow...Brian is having a harder time than I am, he can't even talk about it sometimes. Hunter did great last week but he doesnt' remember that it wasn't that bad having his blood drawn, he just remembers that it hurt when she pulled the needle out.
I knew I couldn't come straight out and tell him that he needed to have it done again so I said a prayer and had the conversation with him that I haven't been looking too forward to, especially without Brian. I had him sit on my lap and look me in the eye because I told him we needed to have a sort of grown up talk.
I knew I couldn't come straight out and tell him that he needed to have it done again so I said a prayer and had the conversation with him that I haven't been looking too forward to, especially without Brian. I had him sit on my lap and look me in the eye because I told him we needed to have a sort of grown up talk. He said ok and tried to comply but well he is a kid after all.

So this is how the conversation went (roughly):

Me: You know your muscles are sick right?

H: Yes.

Me: You know that Dr. Mumford can help you with broken bones, colds, sore throats, stitches and stuff like that, right?

H: Yup.

Me: Well did you know that there are drs that deal with special parts of your body?

H: No.

Me: Who do you go and see if your eyes need checked?

H: An eye dr.

Me: Who do you see if you have a hard time hearing?

H: A hearing dr.

Me: who do you see if your skin is sick?

H: A skin dr.

Me: Do you know who grandpa has to see because his brain is sick and that is why he had the stroke?

H: A brain dr.

Me: That is right so who do you see if your muscles are sick?

H: A Muscle Dr.!!!

Me: yup and do you know that special kid hospital that we go to when Sadie has her eyes checked because of her eye surgery?

H: Ya they have cool elevators. (Primary Children's Hospital in SLC)

Me: that is the one. and did you know that they have special dr's just for kids up there?

H: No.

Me: Sadie saw a special kid eye dr. and Dr. Mumford is talking to a special kid Muscle dr. for you to go and see.

H: Cool.

Me: so you know those levels we talked about in your blood (this happened in the beginning of our conversation, I try to explain to him that his levels were really high and he seemed to understand pretty well)...

H: Yeah.

Me: Well all of the dr's said we need to have those looked at again.

He wasn't thrilled with the idea of getting his blood drawn again but perked up when he found out Sadie would go with us this time and he could show her how cool it was and that he was a brave kid.

Me: Your muscles could be sick for a really long time but it will all be okay no matter what.

H: Well what if they have to draw my blood for my whole life?

Me: then we say okay Heavenly Father if this is what we have to do then we are going to do it even if it is hard. You can be really brave and you wouldn't have to be brave if it wasn't hard would you?

H: No.

Me: do you remember the blessing you had Sunday night?

H: Yes.

Me: Your blessing said that even if your muscles don't get better than that would be alright and that all of your dr's will know how to take care of you and help you. If you feel like you are scared or you are hurting you can always pray to Heavenly Father and he will always be there. Sometimes Heavenly Father gives us things that are really hard to deal with like being sick but did you know that he will never give us something that we won't be able to handle or be brave through?

H: That is good.

Me: so we say lots of prayers and you remember that you always have mommy and daddy who love you lots and lots and all of your aunts and uncles and grandmas and grandpa's are always there for you.

H: Good.

Me: So it is okay to be scared or worried but it will all be ok.

H: Will I die if they have to cut my muscle open?

Me: No you won't die (then I went through everyone we knew that had surgery even me and how we are all still alive and that the dr's take really good care of you).

H: Okay. Can I go talk to the bishop about it?

Me: the Bishop already knows. Mommy and daddy had a talk with him on Sunday. But if you feel like you ever need to go and talk to him than you are always welcome too.

H: Good.

Me:So we are good?

H: Yup, we are good even if they hurt.

From what I can remember that is pretty much all of it. I didn't want to tell him about any of the bad stuff from MD because we will have to take it as it comes. But when he asked if he would die before he got to the muscle biopsy question my heart sank. I hope he doesn't ask that question any time soon or ever would be great! I have to take him in an hour to go get his blood drawn and we will keep you posted. Sorry this was so long but I wanted to share our little chat, it was a special moment for me.