Six Weeks Later

A quick update on Malcolm's little brother.  Kieran was six weeks old on October 1.  I had him weighed the day before and he was a whopping 13 lbs, 13 oz!  That puts him around the 95th percentile.  I'm not sure how long he is but he must be pretty long because he has outgrown almost all of his 3 month size sleepers and comfortably fits into 6 month sleepers.  He is chubby and generally just one big boy.

Malcolm and Donovan continue to really enjoy their brother.  Donovan asks to hold him every day and will sit and rock him for 15 minutes at a time.  Malcolm is also keen to hold him but loses interest after a couple of minutes (note that that it is difficult to maintain Malcolm's interest in much of anything for more than a few minutes, unless said something includes a screen...).

Overall, Kieran is fitting into our family really well - his presence does not seem disruptive and adds more richness and interest to our lives.  We are all so happy to have him with us!

Mary Ellen

Update on Advocacy for Early Intervention Services

As many of you may recall, I am involved in advocating for improved "early intervention" services for children with special needs aged 0 - 6 years.  Malcolm has benefited greatly from these services and would have realized even greater benefits had more been available to him.

This has become an election issue here in Nova Scotia.  Earlier this month, the Liberals pledged $2.6 million in new money to reduce wait times and fund core early intervention services (which currently rely heavily on fundraising to supplement government grants).

Today, the NDP announced a $6 million campaign commitment to improve early intervention services. They will also reduce wait times and better fund core services.  In addition, they will pilot a project to help families navigate the system, provide easier access to respite care and better coordinate service delivery for families who have more than one child with special needs. 

I was at both announcements.  I was quoted in the Halifax Chronicle Herald regarding the Liberal announcement and our whole family Jan and I were shown on the CTV coverage as well.  Fast forward to 1:32 if you don't want to watch the whole clip about the election.  was shown on the Global TV coverge tonight.  We are hoping there will be some newspaper stories tomorrow.

We are thrilled that this has become an election issue and are hopeful that, regardless of who is elected, significant improvements will result.

Mary Ellen

Big Events in September

This month is flying by.  I wanted to share a few photos...

The boys on their first day of school.  It was a very wet day so Malcolm was able to wear his yellow boots, which he loves.

Happy Birthday Malcolm!  Malcolm turned 5 on September 13 and we had a little party for some of his little friends.  It was a Mickey Mouse themed party as Mickey (or Kick-ee as Malcolm says) is his current favourite...

Donovan holding Kieran on Kieran's one-month birthday.

Mary Ellen

Terry Fox 2013

On Sunday Team Malcolm participated in the Terry Fox Run in Halifax.  It was another great day at Point Pleasant.  We raised more this year than the two previous years so were very pleased about that.  Malcolm, Kieran and I did the 1 km route and Jan and Donovan did one loop around the route, which I believe was 3.3km.  Both sets of grandparents were there to help out.  Lauryn and her friend Amanda also ran with Jan and Donovan which was great.

Everyone had a good time and we plan to do it again next year.  A HUGE thank you to all who supported the cause by donating to Team Malcolm.  For those of you who support cancer research in other ways, big thanks to you as well. 

Terry Fox had a big dream and we're happy to support it.  Families of kids who are journeying through cancer need us all to dream big.

Mary Ellen

Introducing Kieran George...

As you can see in the following photos, he has two very proud and very excited big brothers....

In the hospital, Donovan had some time with Mommy and Kieran before Malcolm arrived.  He was so excited to hold his new brother!

That look pretty much sums up how Malcolm felt about his short hospital visit - a bit freaked out by the whole thing.  

 

Here's Kieran at about one week old.  Such a handsome fellow!

 Both boys enjoyed giving Kieran a bath on the day he turned one week old.

Look closely and you can see Malcolm with his finger to his lips shushing the baby (who was crying as he was getting dressed after his bath).   Malcolm doesn't appreciate a noisy baby and frequently tries to shush Kieran if he has the nerve to be too loud.

 These photos show how excited Malcolm can get to 'help' with Kieran.  Little Kieran is so lucky to have two such wonderful brothers that are so happy to help look after him!

We are all doing well and enjoying baby.  He will be two weeks old tomorrow (evening).  How time flies!

Mary Ellen

Donovan Update

I thought that since last week's post was all about Malcolm, I should say a few words about his biggest booster and supporter, Donovan.  Donovan had a very successful year in grade one and I think he will continue to have good academic success.  His favourite subject (other than gym) is math and he is very good at it. 

Donovan really enjoys biking, swimming and playing soccer.  Unfortunately, he was unable to join a soccer team this summer as we missed too much of the season being away in Ontario.  However, we are trying to give him lots of opportunities to bike and swim.  He is very excited that Malcolm can now ride a bike.

Donovan is extremely excited about the pending baby and proudly tells people that he will be a big, big brother while Malcolm will be a big brother and a little brother.  He keeps trying to convince Malcolm that there is a baby in my tummy but Malcolm remains skeptical.  Donovan asked how I would know if the baby was ready to come out and I said my belly would start hurting.  He now asks me several times a day if my belly is hurting yet!

Earlier this spring, Donovan told me that he hopes the baby has Down syndrome.  I asked him why and he said so that Malcolm would have someone to play with when he is a grown up and someone he could talk to (Donovan is under the impression that Malcolm's babbling is some sort of alternate language that other people with Ds would be able to understand...).  I told him that while it would be ok if this baby has Ds, I am actually hoping that it does not.  I pointed out some of the advantages of having a sibling without Ds and spoke about how Malcolm would have friends, etc when he is grown up.  I think I managed to convince him of the merits of a new sibling without Ds but I guess that's proof positive that Donovan still doesn't see any negative aspect of Ds. 

I think Donovan's concerns for Malcolm's future were sparked by a discussion they had in class about people with special needs.  The class read a story about an adult with an intellectual disability who lived in a group home and I think that may have been the first time that Donovan really realized that Malcolm may not 'catch up' in every respect to him and may continue to need some extra help as an adult. Great that the class had this discussion.

Donovan is a big help to me at home - great at helping with Malcolm and also quite capable (though not always entirely willing) of doing chores around the house.  This afternoon he put away all of his laundry and vacuumed the living room carpet for me all by himself.  He often helps Malcolm get dressed in the morning and will even help him change a wet pull-up.  He has also, on occasion, brought Malcolm downstairs and made him breakfast (toast with jam or reheated pancakes and syrup).  He did lots of helping on the farm and is turning into quite a useful little guy!

Perhaps the greatest thing about Donovan continues to be his positive attitude and enthusiasm for just about everything.  It makes him a lot of fun to be around.

Mary Ellen

Back in Halifax

We're back in Halifax.  We spent over a month away, visiting my family in Ontario.  It was a vacation for myself and the boys and a working holiday for Jan - he was on sabbatical and can work from pretty much wherever he wishes.  I think he was pleased with what he was able to accomplish.

Too many great things happened on the trip to even begin to describe so instead I will provide an update on how Malcolm is doing.  He will turn five on September 13 which is hard to believe!

Malcolm is learning to spell his name in capital letters.  This was a big focus of OT over the past several months and they gave me several great tools to help Malcolm accomplish this goal.  He is getting close.  He recognizes and can name most of the letters in his name.  We are playing games that help reinforce how to order those letters in the correct order, and we are working on how to actually print the letters.  He can consistently print M, O and L.  He still needs a bit of prompting for A and C but we are getting very close!

Perhaps the highlight of our trip was that Malcolm has learned how to ride a bike (a three-wheeler)!!!  We took his little bike with us to Ontario because my parents have a great cement pad right by their front porch.  However, after many days of moving his feet on the pedals and trying to get him to move on it by himself I had just about given up and was starting to resign myself to the fact that it would likely be next year before he would learn.  Then one day his Dad came out and was working with him and all of a sudden it just clicked - he was riding.  You can view a bit of footage from the very first day of biking independence here but I really like the video below that was taken a few days later....

Malcolm's speech continues to slowly emerge.  He now consistently says Daddy and Mommy (or some close variant - often da-da and me-me) which is music to my ears.  Just last year I was wondering if I would ever hear his little voice say my name and I do not get tired of hearing it.

Malcolm seems to understand that he is going to "Big School" in the fall.  He has a nice book that the learning centre teacher made for him that has several pictures of the school and his teachers and several photos of him in his classroom, etc.  We are still trying to sort out how much support he will get and things like that but I think it will all fall into place soon.

Malcolm does not, on the other hand, understand that he will soon have a new brother or sister.  He thinks it's funny when we tell him there's a baby in my tummy and shakes his head no - he just doesn't believe it!  But we talk about a baby quite a bit so hopefully it won't be too much of a shock for him...hopefully just a few more weeks to wait...

Malcolm had his tonsils out on Friday.  He also had the tubes in his ears removed - we were surprised they were still in there!  There were over three years old and the doctor said the tissue around them was quite irritated - he had so much wax buildup in his ears that, despite having his ears looked at by various doctors on a regular basis, no one had been able to see them in well over a year!  So good thing he got that cleared up as well.  Malcolm did really well initially in recovery, taking his medicine and drinking a bit.  They were almost ready to send us home but decided we should wait a bit longer.  Then Malcolm stopped drinking and absolutely refused to drink anything else for the next four hours!  So we ended up staying overnight in hospital to make sure he stayed hydrated.  Just before bedtime he decided to drink so that was great - we were able to go home the following morning.   Today he seemed to feel really well and his eating greatly improved so I think he is pretty much recovered.  I am supposed to keep him fairly quiet for the next few days so that the wound does not reopen so that will be a challenge but it is supposed to rain tomorrow so it will be easier to keep him contained inside...

We are having a great summer and enjoying being back at home in Halifax.  The weather has been quite hot so we have been keeping cool and enjoying the outdoors as much as possible.  I am not returning to work until next year so am really determined to enjoy this time with my boys before I get busy with the new baby.  Today I was brave and took the boys by myself to a small local beach near our house for a couple of hours.  It went really well and was a good activity.  It was a perfect beach day - sunny and hot but not too hot with a nice breeze.  Hopefully there are many more such days to come before summer ends...

Mary Ellen