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.

Saturday, November 12, 2011

Memoirs for my daughter, part 8

Today is November 12, 2011 and I am trying to catch up with my diary. This is the entry I made on Oct. 29, 2010:
Yesterday we went to the clinic and the glucose level was 3.6. The endocrinologist Dr. (Resident, Dr. Jassass) came to talk to us and told us to go to the Pharmacy and get a glucometer and check your glucose level at bedtime, midnight and morning, before breakfast. We did that last night and the levels were 14.1 (high, but you just had Orange juice, and dinner), 8.1 at midnight and 5.5 at 5am. After the clinic we went for a bone density test and I can say that you are definitely the best little girl in the world! You just laid on the bed as the technician asked you to and never even moved, until we were done. And for being such a good girl, you got lolly-pops and stickers. You wore your pirate Princess dress that we got for Halloween and everyone admired you, as always. :) We love you very much and we want you to know that you make us very proud.

I haven't wrote in two months!!! And a lot has happened. Even though we are still struggling with hypo-glycemia, we did spend a night in ER with hyper-glycemia. On Dec. 9, 2010 you had an L.P. and at night when we checked your glucose, it was 27!!! We think it was because of too much glucose they administered IV during your sedation. Daddy called the Dr. and they told us to take you to Emergency. We tried to dress you, but you were not very alert, we couldn't really dress you. Daddy got really scared, he was actually crying and told me to call 911. We got to the ER and without them doing anything at all, it went down on its own, within an hour, to 7.6! But we spend the night there, anyway, just to be safe.
We had a good Christmas, Santa brought you a lot of presents. The night before Christmas you did throw up, we woke up in the middle of the night because you threw up! You must've felt pretty sick, because we walked through the living room and even though you saw all the presents, you never said anything about them. We went and woke up Daddy and he changed the bad for us and put everything in the washing machine.  But in the morning you were soooo excited when you saw that the plate where you left Santa's cookies was empty! And after that you got excited about the presents.  Tonight is New Year's Eve and we started the dexamethasone yesterday, but you are fine. Thank God you are fine! It's so hard for us to see you in pain, to see you suffer and not to be able to take all that pain upon us so you don't have to suffer any of this.

We love you very much!