Connor and I were wondering this morning if today would be one of the 'normal' days here at TCH with just therapy in the morning and us hanging out in the afternoon :)
Since I posted earlier yesterday then I usually do I will add one, well three, occurrences that happened last night. Connor had three little accidents in his bed within a 1 1/2 hour period. He peed just a bit but was confused about it because he never felt it happened. So I changed him and cleaned him up and told him not to worry. Of course I had to tell the nurse since they had to change the pad and they mentioned it to the doctor who ordered a urine sample plus blood work right away. The thought was it could be due to all the fluids he got during his surgery or possibly to see if his glucose levels were high. This is something they said needed to be watched since it can be a side effect of the Steroids he is taking.
So at 7 AM this morning Connor woke up and was dry throughout the night :) he still had to give one more urine sample however. So I will post more about this event when I hear back.
The funny part to me about writing this blog is how I can write about Blood, Pee, Stool Samples and throw up without thinking twice because. It is after all a medical journey for us. So hope none of you is skirmish in that regard - ha ha
At 7:30 AM today I took Connor to his little therapy breakfast social. He has breakfast with other little kids and two therapist monitor them. I believe it is speech and OT. It is a cute setup and it gives me the time to run down and get my own breakfast.
There was something on my mind last night and this morning and I am wondering a bit about it so please give me feedback if you like :) I see Connor making progress from were he was not even a month ago but then I have seen him decline with in a month prior to this. I look at him now and I am able to understand him and even enjoy this new aura he has about him. When the drugs are not messing with him he has now turned into a very articulate little boy who asked wonderful questions and has a composed and compassionate personality. He seems wiser beyond his 5 years of age and my question to those of you that remember him prior to December 2009 and have seen him now do you see the same change or is it just in my mind?
You might think it strange and our normal instinct when raising our kids is to protect and shield them from emotional upset BUT here is where I changed my mind the most. Our boys have met heartache, pain, seen people cry and seen kids being very sick from Chemo. And this is were the transformation has been the most ... I watch my 5 year old boys still being silly and funny but now there is also a calmness, kindness and composure about them and they are so much more compassionate towards others. You might think me crazy but this is the part I am the most grateful for. They have grown on a level that I could not have seen in them if all of this had not happened and this is were I do not regret this exposure at all!
Just got Connor's test results back and there was no rise in his glucose levels which is good news and almost all his other levels from the blood work this morning (they took 9 vials I believe) came back positive as well. We are still high in most areas but lower in the numbers from last week. His blood levels are still low however so he has to give another stool sample so they can look again for blood in it.
Therapy is going so so today and mostly because Connor is complaining he is to tired. He wants to take a nap but says it is to noisy in the hallway. His doctor asked him what it is she can do to help and he said to tell everyone to just be quiet! That's our son for now ... he can be very charming but is also very straight forward in saying what it is he wants or needs.
Our big highlights today were our visitors once again :) Lady Di came back today with Matthew which was pure heaven for Connor. It is hard to explain until you see it happening in front of you but the connection people have when they meet someone that has dealt with a serious disease as well is magic. I hope it is alright to mention it but Matthew battled cancer just two years ago and is now cancer free thank god. He was able to explain to Connor in such a great way what his treatment are doing for him and also why it is important to eat healthy even if you don't feel like it ... so let those protein shakes come :)
Our second visitors were as wonderful as our first on another level. Miss Caroline and Connor's twin friends Nathan & Jerrod stopped by and Connor gave out quiet a few smiles seeing them. Jerrod and Nathan also did a marvelous job pushing Connor's wheelchair which was a big event because he usually does not like kids pushing him. Connor did however decline after about one hour due to still feeling so tired. As you know I mentioned it before, just like his Mom when she does not get good sleep he can get very grouchy fast :)
I want to take a minute to Thank everyone that has Donated to the CureJM Firstgiving Page Connor set up. All the money will go towards research for a Cure and this will be our big goal when things calm down for us to find a way to help this cause. As Dr. Pachman said in in such a beautiful way ... her job will be done when there is one pill or treatment to make JDM go away for good.
One thing Ron and I have never done is ask 'why us'. I did ask God why not me instead of Connor but we do realize that we are only handed what we can deal with and the goal is to never see anyone else having to face a journey like the one Connor is faced with.
Hugs,
R A C A
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