Sickies

The past week has been full of snots and cuddles.  Ollie has had a "cold", it's more just a stuffy runny nose with a bit of coughing when his nose is too stuffed.  He still runs around like usual, he just stops by for a cuddle every now and then.  I'm hoping that this issue will not affect his ability to have his MRI done in a week, we've been looking forward to it, in a weird way, wondering if his pituitary gland is normal looking or not.  We are still waiting to get the approval from the insurance company on the growth hormone stuff, they are more then likely going to approve it we just have to wait for the paper work to go through before we can get all of our injection stuff and start with implementing a new routine.  Our fridge has been re-arranged to make room for all of our new things, the hormone has to stay cold so we gave up a shelf in our door.  I talk to Ollie about how his bed time routine will change a little, 

Bath - Brush teeth - Books - Injection - Bed

This will become our new normal, just like taking a pill in the morning has for his 1 alpha hydroxylase deficiency.

growth updates

Remember last week when we had to spend 6 hours at the children's hospital to have Ollie tested for his growth hormone levels?
I was ready to wait a while to get the results since the paper that they gave us said that it would take up to 5 weeks to get them.  We didn't have to wait that long for them though.  The results are in, we got a phone call from his endocrinologist this afternoon.  It looks like his levels are very low.  This means that his pituitary gland is malfunctioning for some unknown reason.  It has nothing to do with his prematurity.  It's not anything we did or didn't do, it just happens.  I just find it odd that he has no after affects of his prematurity but has 2 separate problems that are not an every day occurrence.  Our endocrinologist will be squeezing us in to talk about the situation and answer our questions then we will meet with the growth hormone nurse to learn how to give Ollie his injections.  They would like him to start the treatment before christmas, the earlier the better seems to be their motto.  Now we will have sharp boxes, syringes and vials in our house, something most parents never think of having to deal with.
We are trying to see the bright side of this.  We know why he is small now, it is no longer a mystery.  It is something that is relatively easy to fix/treat.  An injection a day, 6 days a week until he's about 18.
We just hope that we don't find anything else wrong with him.

baby we're going down

Got a call from CHEO last week, more precisely from the Bone Clinic liaison.  She was calling about the results of the blood work we had done the previous Friday.  Things seem to be heading in the right direction, we are cutting his pill dose in half, we are now down to 1 pill a day instead of 2.  Ollie is great at taking his pills, he actually reminds us about them sometimes.
From what I understand it looks like his body has caught up to his previous lack of vitamin D and now we are just controlling the fact that his liver can't break down the vitamin to it's final form to be absorbed.

Ollie Update

Yesterday we woke up bright and early, well it was for Ollie and I, Louis always get's up early for work.  We started our day with an appointment with the physiotherapist.  Ollie has progressed a lot since our first visit with her.  We spend some time on those blue gym mats, play in front of a mirror, attempt to grab and chase everything.  She is no longer worried about his physical development and we might not need to see her next month if he is advanced enough.  Our next stop of the day was at CHEO(children's hospital) we had to see two people here.  We started our visits with our hematologist, like usual we waited an hour for our appointment.  The waiting was worth it though.  We got confirmation that everything looks good now, his system is working properly and we are seeing one specialist less.  We just need to get his levels checked every 4-5 months with our pediatrician.  We had 20 minutes to have a quick lunch before heading off to our next specialist, our super sweet endocrinologist.  We concluded with them that Ollie is getting too much calcium with his diet and his supplements so we will stop the supplements and see how that goes, we will also be getting some blood work done at the end of the month to check if it really is a genetic issue that is the root cause of his rickets.

While we were waiting to see our hematologist there was a mom, dad and super cute little girl, probably not older then 4, waiting for their nurse/caseworker.  They had just found out that their little girl has renal cancer that requires treatment for the rest of her life, unless a cure is found.  They were given a book on childhood cancers and a binder with information, life changes and a specific section on explaining the disease and treatment to children. We don't know who they are or where they are from but hearing them get the news broke my heart.  It was a huge reminder to us that even with all the difficulties Ollie has had we are very lucky, what he has is manageable.

On a happier note.....

In the past month Ollie has:

-figured out how transition from laying to sitting

-started crawling and is getting fast

-started to drink from a straw cup

-is drinking a lot more formula

-grown almost 3cm

-gained 2lbs

-started standing if we help him up