last days of 2

I realized this morning that today is Ollie's last day of being a 2 year old, chronologically that is.  That 3 month difference is still noticeable in him.  That whole preemies catch up by the age of 2 is a bunch of bull, it might be true for babies born a couple of weeks early but mostly a huge lie for ones born earlier then that.  His size is still a bit of a struggle for some gross motor skills, stairs are still done on all fours for up and down, he has finally started jumping without holding onto things and is extremely proud of that fact.  Follow up appointments are coming up in March to see how things are progressing.

We had his birthday party over the weekend and he had a blast.  Our parents came over and so did Louis' grandmother.  We ate snacks and opened presents, he took the time to play with each of them individually before moving on to the next.  We had tacos for supper and I had baked a cake for the occasion.  Like usual we were to busy to take pictures ourselves and I forgot to take them before my mom left.....oops..... so I have no pictures to share right now, but I'll be getting them soon, I hope.

I know it's cliché but they really do grow up so fast.

Ready for Launch

We start tonight.  Wish us luck.

Time to start growing little man.

Other things going on:

Frustrated!

My recipe for dealing with anger and frustration: set the kitchen timer for twenty minutes, cry, rant, and rave, and at the sound of the bell, simmer down and go about business as usual.   -Phyllis Diller 

Read more at Brainy Quotes

I actually took Phyllis Diller’s advise this morning, it worked pretty well.

Our liaison called this morning to let us know that we won’t be starting Ollie’s treatment until the new year.  Their reasoning behind it is that they are closed for a week and a half so they can’t help if we have any issues.  I just wish they would of made up their minds at the start of all of this and not gone back and forth on their decision.  This could of all been avoided if they would of done the proper paperwork to begin with a month ago instead of waiting 3 weeks to send papers to people who don’t need them.  All it took was a quick phone call by me to the insurance company to confirm that they cover the product.  

I hate it when peoples disorganization affects others.  

We are still going this Friday to get trained how to use the device and to fill out some paperwork.  Once they decide when we will actually start, the company that makes the device will send a nurse to the house to re-train us because then we will be able to give Ollie an actual shot instead of just practicing with a skin analog.

Scanned

Let me just start out by saying that the nurses and doctors in the MRI department of CHEO are amazing and kind.  You can really tell that they love their jobs.  

We showed up at 9am just like they asked us to, they took us back and asked us some questions to make sure that Ollie wouldn't stick to the machine or have anything rip out of him, they checked his pulse and gave us a gown.  Afterwards we had the MRI tech stop by and explain how it worked and how long it would take.  

The anesthesiology team was so sweet, everything was explained in detail, our questions answered and they let both of us be there for when they knocked Ollie out, the usual rules are 1 parent only.  After he was out Louis and I went down to the cafeteria to wait out the 45 minutes, we we're not very hungry but took something to drink.  We chatted while playing games on our digital devices, trying not to think of our little guy laying there in a big noisy tube.  

When the 45 minutes were up we headed back up to the MRI department to wait for the nurse to come and get us after they made sure he was stable and breathing properly on his own.  Oh my was he ever cranky when he woke up and his breath was horrid(thanks to the fact that he hadn't eaten in 24hrs), he wasn't calming down at all being rocked so we walked the hallways to entertain him and the nurse was coming to check on us every now and then.  

He was refusing to drink the apple juice they gave him, apparently he didn't like the cup it was in, I transfered it to my juice bottle from earlier and he drank it all pretty quickly.  That was the only requirement they had to let him leave since his vitals were fine.  

The nurse discharged us, Ollie was still groggy so we stopped by the endocrinology department to ask about the status of our GH request.  The info is back, we are just waiting for our liaison to finish up her part, then we can have the training day.

Amazingly he was pretty much his usual self when we got him, you saw that he was not quite back physically though, he was super clumsy for the most part of the day.

Our endocrinologist will call to let us know what they saw on the scan.

Postponed

Just got a call saying that something came up so they need to move the date of Ollie's MRI.  It was supposed to be Tuesday at 7:30am.  They switched it to Thursday at 10am, they want us there at 9 to get everything ready.  Ollie can't eat anything past midnight and can only drink water or apple juice until 4 hours before.  This is going to be loads of fun, he is super pissy when he doesn't eat right when he wakes up.  I think we'll put him to bed later then usual the night before so he won't wake up too early and get extra mad at us for not feeding him.  

We still haven't heard anything back from the insurance company, if there is nothing new by tomorrow our nurse case worker will start looking into it.  I was looking forward to starting his injection way before christmas to get into the routine of doing it so it would be set in during all the craziness that the holidays bring.  That way we would also be experts at giving them and would be able to teach my family to do it for when they watch him in the future.

Waiting for things to move forwards is rather frustrating.  

I must learn to be more patient.

All Systems Go

After waking Ollie up this morning we drove over to CHEO for the umpteenth time this year to have an MRI pre-assesment.  Our appointment was at 9:45, we weren't seen at 9:45 though.  An hour of waiting around and playing a really annoying game of musical waiting rooms we where finally greeted by some doctor that we will probably never see again.  She asked a couple of questions, listened to Ollie heart and lungs then cleared him for the light sedation required for the MRI on Tuesday morning. I will be with him when they put the mask on before he goes in and it should take about 30 minutes to wear off once the mask is removed.  I think they will want him to eat and drink before they let us leave but she didn't really mention that part of it.  The sedation is just enough so that he doesn't move around while they are getting the images needed.  I've tried explaining it to Ollie but I'm not too sure how much he actually understands.  Maybe it's better that way, he probably won't remember any of this.

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.

Digital vs. Analog

Our meeting today went great.  Questions were answered and we got to have a quick visit with our Growth Hormone Nurse.  She set up a get to know your options session.  There are 2 devices that we are considering.  One is an analog click to get your dose pen, the other is a digital all you need to do is put the needle in and push a button.  We are leaning towards the digital version, at least that way when everything is set up Ollie can push the button to help give his injections.  Our plan is to have him as involved as he can be with his treatments.  He finds great joy in doing things himself, he loves to hang up his coat and get water out of the dispenser.  With us letting him do thing on his own he has a lot less fits and less fits means that everyone is happier.  We will let our GH Nurse know tomorrow what our choice is and she will follow through with the paperwork needed for the insurance and all of that stuff, she will even deal with our pharmacy for us.  Once everything is approved we will meet with her again and get the full 3 hour lesson of how to give the injections and everything else we need to know.

This is a lot less worry then I thought it would be.

thoughts of the future

My brain has been busy today.  I have been going through all of the different possible scenarios for Ollie's life for the next 13-15 years.  Will he want to play sports semi-professionaly? Will he have restrictions in his day to day life? What happens if you want to travel?  We have our appointment with our endocrinologist tomorrow morning.  About 30 minutes of new information, some decisions and lots of questions.  We will be deciding what course of treatment we will use, dosing and schedules will also be figured out.  It's actually pretty hard to think of questions to ask in advance, I think that with the information she will give us tomorrow we will come up with them as we go.  We will probably also schedule our appointment for our lesson with the growth hormone nurse to learn how to give the injections.  You never think you will ever have to have a sharps box in your house.

I keep telling myself that it isn't anything that I did or didn't do, this issue is more then likely not genetic either, it's just something that happens. It's not life threatening and we will not let it affect his full life potential.

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.

poking and prodding

Yesterday we spent the day at CHEO.  We went in nice and early to have Ollie tested for growth hormone deficiency.  It required him to take a pill that had a side effect of making him sleepy.  For 2 hours after the pill dose he got blood work done every 30 minutes.  At the end of that test they injected him with a glucose solution to stimulate his pituitary gland to see if he is making enough growth hormone.  After that injection he gets blood work done every 30 minutes again for 3 hours.  He had to have an empty stomach for this test so he didn't get anything to eat until the test was done.

a quick one

This is going to just be a quick post to let you guys know that we are at CHEO today to have Ollie's human GH levels tested.  It takes about 6 hours so we will be there from 8am till about 2 or 3.

If I get a chance you might even get a 2nd post today, all depending on how everything goes.

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.

The dreaded question...and an answer for everyone.

So when is the other baby going to arrive?  When are you having another?  Any siblings coming soon?

Recently this has been what everyone has been asking.  Same question, many variations.  People I haven't seen in a while, people who see me almost daily, family and even some complete strangers.  It's like there is a switch, your kid is a little over 1 and everyone want's to now why you aren't knocked up yet or why you are out when you should be home doing it.

Ollie was born 3 months early(@27 weeks) because of pre-eclampsya.  Since his birth my blood pressure is still on the high side.  We are still trying to figure out why he has rickets, is it genetic? a fluke? because he's a preemie?  

Ya sure, chronologically we have a 17 months old, corrected he's actually only 14 months and with the rickets he's even younger because of his size, weight and skill level.  We are still meeting with new specialists, seeing a physiotherapist once a month, getting blood work done enough times that some of the lab techs know us by name.  There is a plus to this though, it only takes about 5 minutes to get his blood because he is comfortable with the techs.

There are risks to of us having another right now, extended bed rest, another preemie, long term side effects for me like vision issues and even more medical issues with the new one.  

We were really lucky the first time, he was born early but suffered no respiratory, cardiac or vision issues.  He came home a month before his due date, something that is really rare.  

Louis and I have been talking about it and believe we have come to a decision.

We would love for Ollie to have a sibling but have decided to wait for now.

Getting healthy, figuring out Ollie's issues and maybe even getting married are currently higher on our priority list.  

So my answer for everyone who asks now is: Not yet, ask us again in a year.

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

He did it.

Last night Ollie was playing on his mat while Louis and I were tidying up the kitchen.  When I turned around to check on him I got a surprise.  I caught him in the act, I caught him on his tummy.  The child who despises tummy time, I saw him willingly be on his tummy, he turned himself over, we didn't force him.  He flipped over onto his stomach, lifted his head played a few minutes then flipped back over.  I'm positive he understood what he just did, when he flipped back he had a huge smile on his face and was kicking up a storm.  I am super happy that at his next peds appointment I can finally say a big huge YES when he asks what seems to be his favourite question, does he roll over onto his stomach?

On a side note, we got a call from the endocrinologist to let us know that his calcium levels are looking good with the supplements.  We have also been told to do blood tests every other week instead of every week.  Finally seem to be heading in the right direction.

Guessing Games

We have had many doctors visits recently.  All of them trying to figure out why Ollie is still so small.  Our little guy has been poked multiple times for blood tests, had his whole body x-rayed, been handled by many people feeling his thyroid glands, kidneys, spleen, liver.  He's had an echocardiogram, his body measured and countless other things.  Yesterday we had an appointment with an endocrinologist, they concluded that he probably has Rickets, a vitamin D deficiency that softens the bones.  We have been put on a prescription of Calcium supplements and super concentrated Vitamin D drops.  We will be doing this for a month, then doing some more tests to see if it made any changes.  It is relieving to have someone who actually made a guess as to what might be wrong with him.  We have seen a haematologist because it seems that his white blood cell count is low, they currently have no explanation of why, we are seeing them again next week to see what his numbers are doing.  We have appointments set up for a kidney ultrasound(to see if the calcium is being absorbed properly), with a geneticist(not sure why, pretty sure we don't have genetic issues) and also with our regular pediatrician.  I am really hoping that the supplementation will fix all the issues so we can stop going to the specialists at the hospital.  He is hitting his milestones, eating tons of solids, is super active and one heck of a flirt, just ask the ladies from the hospital and pharmacy yesterday.

Busy bees

Louis has been off since Monday and has been busy around the house since, he is putting the cabinet doors up in the kitchen. Tuesday we had a visit with the paediatrician and today we went to the children's hospital to get some x-rays done.  We are still trying to rule out if there is a real reason for Ollie's small size or if it just because he's a preemie.  Yesterday Ollie turned 10 months old, so he is corrected to 7 months old.  He is now sitting unassisted for short periods of time, babbling a lot more, seems to be on his way to saying either mama or dada, we will see what one he chooses.  He rolls from back to front, front to side, pushes himself up onto his elbows.  He also sat in a shopping cart for the first time on Tuesday, he was padded with our coats so he would fit.  Time has gone by so quickly, it does not seem that long ago that we brought him home.  We are getting ready for our first Christmas with the little man.  The tree is up and decorated, the presents are wrapped and Ollie's stocking is made.  Only a few days left.  We will be spending part of Christmas day in the car and the other part with my family and will be with Louis' family on the 26th.  I am off to go make some cookies.  What are you doing for the holidays this year?

TGIF

It's Friday and Louis has the day off.  We are planing on going out for breakfast then off to the agricultural museum to see some cows, sheep and other livestock.  

On another note, Ollie has been doing very well with his new formula, before he would drink 3-3.5oz.  He is now consistently drinking more than 4oz, sometimes even as much as 6oz.  We are hoping that with all this drinking he will gain enough weight for the docs to be less worried.  It would be nice to not have to go to the paediatricians office every other week.

A-O.K.

We arrived at our appointment a little early like usual.  We checked in with the reception desk then headed into the waiting room, where we waited and waited and waited, we waited a whole hour and 45 minutes.  There was us and another family left.  We finally got called, followed this new person into a dimly lit exam room.  There were two men in the room, I later concluded that one was the cardiologist and the other was the ultrasound technician.  We stripped baby down and kept him entertained while the tech started moving the probe around Ollie's little chest.  The doctor confirmed all our information while the tech did his thing.  After about 10 minutes the tech read out numbers to the doctor.  The doc then said that all babies have murmurs, they go away on their own.  He then said something that made us proud, he said:"Olivier has the heart of a champion athlete".  I can now attest to seeing my sons brain and heart.  We are thrilled that there is nothing wrong with our little guy's heart.  Now we just need to figure out why he gains weight so slowly.