April 26th, 2013

Friday
Unit 1
Weight: 13.0 kg
Nurses: Katie/Miriam
WBC: 0.5

The last couple of days have been more of the same.  The doctors as well as dad and I are trying to figure out what is giving you so much pain.  The pain has been causing some very restless and sleepless nights.  We are pretty sure the pain is from the mouth sores, the doctor say that older kids that have this stage of sores, say they it is very, very painful.  Also, you complain that your back and bum hurt.  That could be because of sitting so long (we do change your position in bed often) or maybe you have a compressed disc or it could be your bowls, as they have not been working well either.  The APT does not want to give full does of the pain meds so we have to press an extra bouls when we see that you are in more pain. Well, this means that dad is pushing this button at least once an hour through the night.  The APT has decided to increase your basal rate at night so hopefully you and dad can get a good night sleep. At this point, we are just hoping that your WBC will start to increase so your body will start healing.  The doctors are very optimistic that we could see some positive results as soon as this weekend because once your WBC start to increase they increase quickly.

Your sodium level is low too therefore they had to decrease your feeds through your feeding tube.  You really need something in your body and I hope that your sodium increases so you can have more feeds since you are not eating anything through your mouth.

Today you ditched the old man look!  You hair was actually starting to look patchy.  Your dad and I shaved the thicker patches off the back of your head.  We took pics so you could see your new look.  We didn't get all the hair, but at least it looks a little blended.



I just want you to know that I did go see my surgeon in regards to my back.  I do have a lot of pain still, but he said that is to be expected and that I still need to keep it easy, as much as I can.  The good news is that my disc replacements are where they are suppose to be and they have embedded into the bone.  I start physio here in Calgary, at the spine centre, today.  I am hoping that the physio will make me stronger, help with the pain and I can start to decrease more of my meds.

The girls are still not coming to visit this weekend because Gracie has a cold.  We are really hoping that they can come next weekend.  It has been tough not having our family together, even if it is in a hospital room.

You should start your next chemo treatment a week from today.  We still are hoping that you will be well enough to spend at least one night at RMH before we start all this again.  They say the first and second treatments are the hardest. I am not sure how we will get through this but we have our army behind us fighting for us everyday.

Love you to the moon and back,

Mom