What normal will look like

by - March 01, 2013

This week we had our learning session on everything Growth Hormone related.  The majority of this visit was spent going over the procedure for giving the injection and then practicing.
We are now fully equipped with a 6 month supply of the supplement that will be administered nightly on our sweet little girl.

Things I learned:
We are in charge of mixing the supplement and making sure that it always stays refrigerated.  Once the vial is mixed, it'll last a good couple weeks. I'm glad we don't have to do that every night.
Lucia will receive nightly injections because most of growth hormone is produced at night.  I was happy to learn that we can make exceptions and give it to her as early as supper time in cases of babysitters or sleepovers, but I'm sure we'll get to a point where she can give it to herself.
There are currently only 40 kids using the supplement in province and the majority of them are Leukemia patients.  In Canada, about 1 in every 5,000 kids have a growth hormone deficiency.  Don't quote me on these numbers. 
We will continue to have check ups with Dr. B every 3 months and then once we see that things have been established, then it'll be every 4 months.  We should expect to see around 2 cms of growth by our next appointment- but every kid reacts differently to the shots.
Dan and I got to practice on one another (saline injection, no gh..darn).  I was very scared/reluctant- I hate needles, but really you don't feel one thing, not even a pinch- the needle is so small.
Lucia will have tons and tons of needles/syringes that we'll have to dispose of...luckily our local pharmacist is her uncle and obviously will take good care of her.  We have to buy the alcohol wipes and needles.
The government covers the drug (yay Tommy Douglas) which could cost around 500,000$ in the end.
Her dosage right now is small and will increase as she grows.
The x-rays of her hips came back fine and are not showing any deterioration (common occurence in gh patients). YAY!

At the appointment, Lucia received her very first injection done by her Daddy.  She had watched very closely as both Dan and I had needles and was very brave.  She even wanted to watch as Daddy gave her the needle.  She cried in the end but only because we were making such a big production of it.  2 seconds later she was all smiles and sweet laughter.  In fact, she had brought along Kinsey's doll- Teetoo- to the appointment and decided she needed a needle too, so Lucia got to give her one.  She was very excited to get home and tell her Willis about her needles.
Thursday morning when she woke up she was pointing to the arm that had the injection and was pleased to see it left no mark- her other arms, au contraire, are still quite marked up from our IV experiences.

All in all, I left Wednesday's appointment feeling really good, really confidant and happy to be at a place where we can move on. Can't say that I'm super excited to give her needles- in fact I had a minor meltdown after giving her the shot on Thursday night.  I may need to watch Dan do it a couple times first before I'm comfortable.  So not meant to be a needle giving nurse.  I'll stick to teaching, thanks.

After our appointment, we picked up Willis from Kyla's and celebrated the beginning of a new chapter.  Lucia requested a mid-afternoon viewing of Peter Pan, some painting and then what has become traditional in this journey- pancakes. We come from the land of celebrations where nothing goes unnoticed and everyone feels honoured so it is fitting that we also celebrate this beginning. Speaking of which- this beginning of a new chapter couldn't have landed on a better weekend- as our family gets together to spoil Kyla on her 30th birthday (Monday).  Being surrounded by people we love brings us so much joy and comfort.

And speaking of people we love, I think I'll end this post with a thoughtful email- sent by Uncle Chris during our family email exchanges on the appointment day.

Thanks for sharing, Deena. As I read this I can't help but reflect on my own childhood experiences with Tourette's and I just wanted to share a quick thought with you. Admittedly, there were some days where I was confused and frustrated with being "different" from the "normal" kids. But looking back at it now I wouldn't change it for the world. I truly believe that I have benefitted more from my disability than those without it - the skills and experiences with dealing with adversity, the appreciation of what other kids worse off than may be going through, and the confidence in tackling difficult challenges which somehow appear less daunting. Although Lucia's circumstances are quite different than my own, I do believe that she will be able to transform it into one of her strengths and will be able to accomplish greater things than she would without it. I'm super proud of her.

Please keep the updates coming.


getting her first injection

giving TeeToo her needle

Tears or smiles or both.

Watching Peter Pan

Pancake supper!

Of course she only had 3 bites of this and was more interested in what was on everyone else's plates

The new norm.

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  1. I don't think I can come up with anything as perfectly worded as what Chris said, but I am so happy for your family that this first experience of your new normal went so well.

    Also, I am so glad you are sharing your and Lucia's journey here. I think there are many people who will gather strength from it.

    Love to all of you.

  2. Ditto, I wish I could have spoke as eloquently as Chris - it was perfect!
    Sending love, lots of it!!

  3. Thanks for sharing this Deena! Wow, it can't be easy, but at least now the right steps are being taken. Bon courage ma belle!

  4. im so glad to hear everyone is doing well.... and deena I love needles so if you ever need to practice give me a shout I am more than willing to lend a arm, leg, but cheek hahah whatever you need.

  5. Thank you so much for sharing your/Lucia's journey through the treatment process. You are such a strong person that it's inspiring and contagious! Lucia sees you and is a super kid because of it! ...Verville


Have a lovely day!