Hello to our lovely sisters!! (and parents)
I am sending you all a joint-email because it'll be easier for me to just keep you all informed in one fell swoop. (and I decided to add our parents as an after-thought even though I've had telephone conversations with parents)
To provide a quick bit of history, Ellie was in the hospital again in August for another asthma attack. As usual, we then went and made the rounds to her doctors to make sure everything was okay once we were discharged. She had lost a fair amount of weight (7% = 1.5 lbs) so I raised this as a concern from my perspective and her pediatrician decided to re-run some tests.
In Alberta, when a baby is born, they do a whole raft of genetic-type tests (don't even know them all) with a simple heel-prick blood test. She had these done again in fall of 2009 - Cystic Fybrosis and Failure to Thrive tests were part of the deal. Her pediatrician said he'd do them again just to see if anything had changed - he was pretty sure that this was highly unlikely, since they had already been done twice, but he was just being thorough. What he did order was a bone age test, which was a simple x-ray of her wrist to see how old her bones are. Ellie and I spent one afternoon last week at the Children's Hospital going from clinic to clinic to get all these tests done, and while it was just tiring, it was a lot of fun to hang out together and she did great.
So all the bloodwork came back fine - all organs are functioning well and there's no absorption deficiencies or issues. What he had wanted to see in the bone age x-ray was a bone age much younger than her chronological age. Ellie's developing as what he calls a "late bloomer" so on the slower side of "normal" - she's walked later, talked later, gotten teeth later etc. than her age-group. He's not been concerned about this at all because she seems to be developing fine - but what we were hoping was if her bone age was younger then we'd be able to benchmark her height, weight and developmental skills against kids that are that age instead of the kids that are 3 because she doesn't compare with kids that are 3.
Well her bones have come back at 3 years old, so he was disappointed in that (with the other news he gave us I forgot to ask any questions along this line of what does this mean, etc. so don't ask me anything about this because I have no answers!)
What her wrist x-ray did show was that her bone density is not where it should be. There are also marks on her wrist (he said similar to rings on a tree) that would suggest she has stopped growing during times of illness. He read the x-ray report and some big fancy word was said which I never wrote down and can't remember the ending but it started with "osteo-..." I asked if this means she's likely to develop osteoporosis as an adult and he said "well, this is sort of what we're saying she has now".
He's concerned as to why her bones aren't as dense as they should be and that is what we have to find out now. There are side-effects from being on inhaled steroids for long periods of time (her puffers) and she's had not an insignificant amount of oral-dosed steriods when she's had her trips to the ER for her asthma attacks, so this could be part of it even though her dosages are extremely low.
So we are now being referred to the Endocrine Clinic at the Alberta Children's Hospital, where he said they will likely do a bone density test and figure out what is going on with her bones. It will take a few months to get into this clinic, so until then, it's just life as normal for us.
Everyone keeps asking me "how are you feeling" - it's hard to say really. I don't think Mark and I are in shock - likely stunned is a better adjective to describe what we're feeling. I don't think either of us are overly worried at this point, just looking at this as another path in this world of Sick Kids that we have be travelling since Ellie was born. I think Mark put it very well yesterday when we came away from the appointment - he said "it would be really nice to go to one of these one day and have them say 'we didn't find anything wrong' ". True, true, true.
At this point, the information I have communicated in this email is all that we have to share. We are fine to field questions as people have them, but there's nothing more we can add to the above information. Her pediatrician said it'll take a couple months to get into the Endocrine Clinic, so we just wait. A blessing we have is that my cousin's husband is a doctor in the Endocrine Clinic at ACH, so I know if we have any questions or need someone go over things with us again and help us come up with questions, he'll be a good support for us. It's also tremendously less scary knowing we're going to his clinic!
I would like to just ask that you keep us in prayer and that Ellie stays safe. Her pediatrician said that she's more suseptible than the average kid to break a bone - her favourite toy is the playground and she's quite the dare-devil so while my response is to completely protect her, I know that is not the correct action to take!!
Thanks for all your prayers and support - for the local family, I may need Will-care when it comes to the next round of tests. We'll keep everyone informed as we have info to share.
Love & hugs,
Lori, Mark, Ellie and Will
