Tuesday, November 29, 2011

Memoirs for my daughter, part 9

It's been a while! It's March 11 when I write this, so it's, again, been 2 months since the last time I wrote. It's hard. though, with so much happening. But let's see just a quick recap: Your auntie, Diana, was here for a month! We went to get her at the airport and we were very, very surprised when she asked you to go to her and you just put your arms towards her! That is so unlike you! Especially considering the fact that until then you wouldn't even go to Daddy in the airport! And you even showed her your necklace. We said it was the calling of the blood. Having Diana here really helped Mommy morally, but as far as you were concerned, not so much help. You didn't want anything to do with her while on steroids, but then again, you want nothing to do with even Daddy while on steroids. But any other day, even though she spoke Romanian and you English, you two got along really nicely. 
On February 10, 2011 you had an L.P. and an Echo. Diana, Daddy and Mommy went for a coffee and on the stairs we met the cardiologist, and I stopped him and told him you're having an Echo and he said he'll look at it right away. Even though I felt kind of bad, because he didn't know who I was on the stairs, I was glad I stopped him, because he went to check the results right away and they discovered that there was a blood clot attached on the outside of your line, on the end that is in your heart. Next day we went to McMaster in the morning and waited for the nurse to teach Mommy how to do your anticoagulant subcutaneous  needles. Apparently, after three months of 2 needles per day, the clot should 'crystalise'. 

We went to clinic and Dr. Scheinemann called us in the room to tell me that it is time for a feeding tube (NG Tube), because you were not gaining weight at a rate that was satisfying to the Doctors. So, we got on the waiting list for a bed in the 3B ward for a tube insertion, so we can administer the Pediasure. 
It took me 3 days to realize that I could give you the Pediasure in a syringe, just as we do with the corn starch (to stabilize the glucose level). So, I called them and told them that I will not allow the tube insertion and asked them to remove your name of the waiting list for a bed.

After 3 months of anticoagulants, we had a very nice surprise at the ultrasound: the blood clot not only crystallized, it actually disappeared! I have to tell you what a good little girl you are; while Diana was still here, you were sitting on my knee and Diana was doing the needles. After Diana went back home, it was either me holding you and Daddy doing your needles, or the other way around, but then there were days when Daddy was at work at the time for your needle, so you were either laying on the bed or sitting on my lap and I was doing your needles. In three months, we only missed one needle. I was so scared the first time I had to do your needle on my own! Even though I knew you don't normally move while treatment is being done, I was still afraid you'll fuss while the needle was in your arm or leg and I would hurt you. But, you are definitely the bravest little girl ever. I remember once I said "I'm sorry!" when I had to poke your finger for a glucose-level check and you said "It's OK, Mommy, I know you have to do it." And you're only 3 year old and already so understanding. This is not easy on any of us, dealing with all this, this is not something a 3 year old should be understanding about. But I guess to you this is normal. This is what you you know. Soon the treatment will be over and you can have a normal childhood. We love you very much!
This was when you started complaining about your hips hurting. But that story tomorrow. 
We love you.

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