Almost ready...

for Christmas!  Donovan is very excited this year and has literally been counting down the days for quite some time.  We are done our shopping, except for some more groceries tomorrow.  This morning we went to the market which was very nice.  We stocked up on fresh vegetables and sausages.  This afternoon we went swimming at Cole Harbour Place - both the boys had fun.  Last night was movie night and tonight was games night for Donovan.  He chose SkipBo and won both games.

I mailed the last of our Christmas cards today.  I am late with all of my cards this year so if you have not received yours yet, do not be concerned as you are definitely not the only one.  Next year I will have to pay better attention in November and be better organized.  Otherwise, we are in good shape, although there is quite a bit of baking I'd still like to do.  Earlier this week Donovan and I made chocolate covered peanut butter balls and today we mixed up sugar cookies, which we will cut out and bake tomorrow morning.

You can read our Christmas letter here.

Mary Ellen

2012 Family Christmas Letter

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Holiday Greetings from the Rainey Family!

We had another good year in 2012.  Donovan successfully completed grade Primay (it’s what they call Kindergarten in Nova Scotia) and started Grade One in the fall.  He played soccer in the summer, and also participated in skating and swimming lessons.  Grama and Grampa Rainey looked after Donovan 3 days/ week in July and in August he attended two weeks of “Adventure Camp”, a day camp here in the city, which he loved.  Malcolm graduated from Blue Room 1 to Blue Room 2 in September, his last stop before moving to “big boy school” next year – he will be attending the same school as Donovan, which is just two blocks down our street.

Many of you know that most of summer and early fall was consumed with a renovation project.  We decided to tear out our bathroom and kitchen to make a small powder room and much larger kitchen on the main floor.  We moved walls, windows and doors to make it happen.  A few unexpected surprises were discovered along the way, but in the end we are very happy with how everything turned out.  Mary Ellen did all of the painting.  The boys were very good about all the upheaval.

Luckily, we were able to escape all the commotion for three weeks in August when we headed to Ontario.  We visited Camp Kintail and then it was off to the farm.  We had a great time seeing all our extended family again and enjoying life on the farm.  Jan left us for two weeks to go off to Europe to deliver a seminar at Oxford and attend a conference in Nice.  He also visited some family and friends in England and Switzerland to round out the trip.

Jan had a largely successful year at work securing some more grants and getting lots of research done.  He is looking forward to starting a six-month sabbatical in January, which means he will have no administrative or teaching duties – he can focus on research.  He will remain in Halifax for most of it but may travel for a few weeks at a time to Florida or the UK.

Mary Ellen is still working three days/week with no plans to go back to full-time work.  Her days at home are busy as Donovan comes home for lunch and Malcolm is accessing increased speech language and occupational therapy services.  Malcolm is starting to say some words which is very encouraging progress.  He has really stretched up over the last year and lost his “baby” look – he is all boy now!

Many thanks to all who visited this year and we extend an open invitation to others to come visit us this year.  We are looking forward to another healthy, happy year in 2013 and wish the same for all our family and friends!

Mary Ellen, Jan, Donovan and Malcolm

A couple of articles...

Just a quick post to note that Ian Brown, columnist for the Globe and Mail, has written another column in which he shares some of his experiences with his son, who is severely disabled.   You can read about it here.   At the bottom of the article, there is a link to an essay that was written a few years ago by Michael Berube, a father and activist.  He was the guest speaker at the Canadian Down Syndrome Society conference that I attended here in Halifax about nine months after Malcolm was born.  We have the book that is referred to in his post - it is an interesting read for any who may wish to borrow it.

Neither Jan or I tend to write much about our own personal emotions or feelings about Ds on this blog but I invite you to read about others who are able to express themselves and with whom we can identify. 

As far as the boys are concerned - they are doing great.  Donovan had to switch classrooms and teachers a few weeks ago due to to some last minute juggling of class sizes (the fault of the Province, not the schoolboard or his school) which created a fair bit of anxiety for him but he is doing really well.   Malcolm is also doing well and is benefiting from more frequent speech and OT sessions this fall.

We went to see the Parade of Lights last night and it was wonderful, as usual.  We went with the same friends that we normally do, which was very nice - gives Donovan great company!

Mary Ellen

Happy Hallowe'en

I really dropped off in posting the second half of this month but thought I'd share a few different thoughts tonight.  First - a brief overview of Hallowe'en Day 2102:

After Donovan went to school today, I took Malcolm to his speech therapy appointment.  Then we dashed over to the hospital to meet the OT technician, Lori, who will work with Malcolm for an hour every two weeks, or every week if we want it, till he goes to school.  Just as I was about to park at a metre across the street from the IWK, it started to absolutely pour.  So I quickly went over to the indoor parking garage, which was a mistake.  It was really backed up with cars and we ended up parking on the roof so were exposed to the elements anyways - so a complete waste of 10 minutes!  At this point we were running late but we ran into a friend from our days on the oncology inpatient unit in the elevator, and then another friend from the same place when we got off!  So chatted for a couple of minutes but really unfortunately could not talk for longer as Malcolm started to run off and by this time we were almost 15 minutes late for the appointment...

So we met the OT tech who is lovely and great with Malcolm.  He had just completed the first couple of activities when suddenly the power went out.  We were in an interior room with no windows which opened onto a hallway with no windows so it was extremely dark.  We waited to see if the emergency power kicked in (obviously there are supposed to be generators - this is a major children's hospital for goodness sake!) but then decided we should make our way to the front doors where there would be natural light.  Luckily OT tech had grabbed hold of Malcolm as soon as the lights went out so he was safe.  It was so dark I could not see even my hand in front of my face.  After we went down the hallway another staff came along with a flashlight and helped us to a main hallway where there were some really dim emergency lights and from there we made it to the front lobby.  We waited about 10 minutes but the power did not come back on so decided to leave. 

The power was only out to one of the three hospital buildings (for those familiar - Children's site was down, but the Link building and Women's had power).  Unfortunately, the parking building also had no power.  That's right - I had to carry Malcolm up seven flights of stairs.  Those of you who know him are asking why he didn't climb them himself since he is capable?  It was getting close to lunchtime and I was concerned I would be late for Donovan if there was a long lineup to get out.  Malcolm is very capable, and actually really enjoys, climbing stairs but speedy he is not.   Luckily, it was not busy leaving and we were able to meet Donovan with time to spare.

Donovan came home for lunch then we all got into our costumes (Darth Vadar, dinosaur and witch - see photo above) and headed to Donovan's school for his party.  There was a big parade in the gym and then each class had their own party.  Malcolm did fairly well for a while then started to get tired and lose interest so the last bit seemed a bit long as I tried to keep him entertained and out of trouble.  I met one of Donovan's new teachers for the first time and she chatted to me about her adult son who has special needs so that was a nice connection to make.  Not knowing these teachers, I had been a bit concerned that Malcolm might not be totally welcome but I need not have worried!  All the staff are always very welcoming of Malcolm.  There were several other preschool siblings of other kids also their with their moms so we didn't really stand out at all!

After a bit of playtime outside after school, we had a quick snack at home then off to see Malcolm's pediatrician for his flu shot.  Donovan did not get one as he is having day surgery on Friday and I did not want to risk a fever developing and delaying that procedure.  We picked Daddy up on the way home, had a quick supper and then got ready to go out trick or treating.  Malcolm did really well but after a while wanted to go home.  Donovan and I stayed out a bit longer but we got wet by the rain, which had held off for quite a while but then poured.  Luckily we were close to home.  Donovan was very happy with all the treats that he got...

Since this post has turned out to be so long, I will publish one final post about 31 for 21 either later tonight or tomorrow...stay tuned!

Mary Ellen

Great weekend

We had a good weekend but busy.  Yesterday I made a batch of cupcakes before breakfast, then took the boys to a little puppet show at the library.  Both of them quite liked it and Malcolm actually sat with me for the whole show which is a stupendous improvement over last time, where he sat for about 2 minutes of the show!

Then we hit the dollarstore for Hallowe'en stuff on the way home.  A quick lunch and then Jan actually got Malcolm to nap (he has been way overtired lately) and Donovan did some quiet activities while I cleaned and tidied.  Donovan and I also did some decorating.  Jan went grocery shopping and after Malcolm got up we vaccumed the downstairs.  Then Jan made supper while I decorated the cupcakes and the kids mostly watched TV.  After dinner Malcolm went to bed but Donovan and I went for a walk to look at some of the houses that were decorated for Hallowe'en.

Today we went to church and then after a quick lunch the boys all headed outside to play while I tidied and got organized for Donovan's Hallowe'en party!  Donovan had six little friends over (actually that includes a little brother of one friend that is Malcolm's age) and they had a great time.  They were all dressed up in their costumes.  I had quite a bit of stuff organized for them - bobbing for apples, eat a donut off a string, two crafts and dance contest (to Monster Mash and Ghostbusters).  We had a fruit tray and cupcakes for snack and we didn't even have time for Bingo!

The only mishap during the party was when the kids were dancing and one of them managed to knock Jan's computer off the couch which torpedoed through the glass door of our TV cabinet.  Luckily no one was hurt and the glass did not make much mess.  Have contacted the carpenter who built it for us and he is going to fix it for us asap so no real harm done.

After the big excitement we were pretty tired and had the boys in bed by 8pm but then I sat down for another session of filling out forms for Malcolm's upcoming psych session.  Five forms, hundreds of questions (mostly multiple choice, thank goodness!).  The purpose of the psych assessment is to figure out cognitively what Malcolm's strengths and weaknesses are and get some advice on how to help stimulate development in those areas where he may be weaker.  Hopefully also some strategies on how to overcome some increasingly difficult behaviour....

Long story short, after several hours the forms are filled out and ready for Jan to drop them off tomorrow (since he works across the street).  Looking forward to sleep tonight,

Mary Ellen

R-Word

I had not realized so much time had passed since my last post - not doing a great job this year of blogging every day for the month of October.

Just a quick post tonight to encourage you to read this story and click on some of the links.  Some of you may have heard of the "Campaign to end the R-Word".  Basically, it is a campaign started by families of people with Ds to stop the use of this word.  One of my favourite blogs, Bringing the Sunshine, has several posts on this topic.  If you ever hear anyone use that word, please politely explain that it is hurtful and a real put down to a very vulnerable and undeserving group of people.  There is no excuse for using that word!

Mary Ellen

Fall Fun

Today we went to Windsor to see the Pumpkin Boat Races for the first time.  There is a Parade of Paddlers through the downtown followed by the pumpkin boats racing on the water.  They also had festive activities for the kids like bouncy castle and giant cookie decorating.  It was a really great day.

We got there around noon which was perfect - we got a good parking spot downtown, just as it was starting to get busy.   We walked along the waterfront and did some of the kid stuff before it was very busy, as most other people were lining up for the parade.  Then we headed up a block or so to see the parade and had no trouble getting a good spot with great visibility, even though there were tons of people there.

The parade ended but I had noticed a nice looking italian cafe that we had walked past so we went down there and got a table and had a fantastic little lunch (we had two very well behaved boys!).  It was good to warm up because it was very cold today - above zero but not by a whole lot and on the verge of raining all day long (it was raining in Halifax but luckily held off in Windsor).  We finished our lunch and headed back down to the waterfront just as the first race was starting.  Again were able to squeeze into a great position to watch the races.  We left before they were all over so avoided any major traffic congestion.

We headed straight to a fantastic pumpkin patch - the biggest I had ever seen for sure.  Got some pumpkins to carve for Hallowe'en and some great pumpkins and squash for eating.  There were dozens of varieties to choose from!  The bottom photo above is Donovan sitting in a sample pumpkin boat they had at the patch.

We came back home and finished the day with a really nice supper - roast chicken legs with potatoes, carrots and squash, and a freshly baked pear and apple cobbler for dessert.  Perfect.

Mary Ellen

Typical

Today was a typical "home" day.  I work three days/week and am home two days (plus weekends, obviously).  On my home days Malcolm stays at home with me all a day and we pick Donovan up for lunch.  This is what we did today:

Get up.  Shortly after, Daddy leaves for work.
Eat breakfast.
Running late - Donovan brushed teeth but skipped Malcolm, who insisted on eating a giant second bowl of cereal.
Walked Donovan down to school.  Walked back home.
Potty time.
Time to go to speech therapy - 45 minute session located 5 minutes from our house.
Errands - Staples and Superstore.
Home to put away groceries and potty time.
Time to walk down and pick up Donovan for lunch.
Walk back home.
Make lunch.  Eat lunch.  Playtime while I tidy up.
Walk Donovan down to school.  Walk home.
Potty time. 
Quiet time (which today was watching TV).  Time for me to run around the house and accomplish a few chores.
Time to pick up Donovan from school.
Play outside school (today it was one whole hour).
Walk home.  Eat snack.  Playtime.  Donovan played with geometric block shapes in the living room and Malcolm looked at books at the table.
Potty time.
TV time for kids.  Time to make supper.
Daddy comes home.
Eat supper.
Tidy up living room.  Time to brush teeth, go potty and have bathtime.
Story time (separately, for each kid).
Bedtime.

The kids are usually in bed by 8pm during the week so that leaves the evening for Jan and I to catch up on stuff - whether it's housework or "real" work.

The above does not illustrate the several tantrums and meltdowns Malcolm experienced today (he seems to be teething), nor the complete lack of success on going on the potty today.  But all in all it was a pretty good day, and pretty typical for us.

Mary Ellen

Scared

For the first time ever, Malcolm got really scared while watching TV.  It was during Harry Potter which we watched on the weekend as a family.  Malcolm seemed to quite like the movie, which surprised me as it isn't a cartoon.  At one point, however, he became very scared.  Jan noticed his expression and invited him over to sit with him and Malcolm went and buried himself in his Daddy's lap.  It was really cute, and also really interesting that Malcolm can absorb so much from the TV program.  Sometime I really underestimate how much he takes in...

Mary Ellen 

Happy Thanksgiving

I completely forgot that I had promised to blog every day this month and managed to miss two days this weekend but I guess that tells you what a good time we had...we had lots of fun with friends this weekend, missed extended family but had a great time.  The weather was really nice yesterday and today so went for a nature walk with the kids each day.  Also managed to bake a pumpkin pie and cook a turkey dinner, and treated Donovan to renting the first Harry Potter movie (we read him the first few books earlier this year).

Hope all you have as much to be thankful for as we do,

Mary Ellen

Brothers

These photos were taken on Donovan's first day of school this year.  It was pouring rain so we couldn't go outside.  It was actually a day later than I had thought - school started two days after Labour Day, not the day after.  So that left me scrambling for someone to look after Donovan for one day so that I could go to work.  Donovan's daycare offered that he could stay in Malcolm's room - they had one or two other kids Donovan's age doing the same thing.

Both boys had a great day.  Donovan stuck with Malcolm most of the day and helped Malcolm with anything he needed (and he taught Malcolm's teachers some of his signs!), but mostly it sounded like they had a lot of fun playing together.  Donovan continues to be Malcolm's biggest fan and best cheerleader - he is so excited when Malcolm achieves something.  Although Malcolm doesn't always do what his brother wants, he does try to do everything that Donovan does and he really lights up whenever he is around him.  They are lucky to have each other.

Mary Ellen

Ride the Wave

I wrote the following to appear in the Progress Centre's Fall newsletter:

One rainy Saturday in September I attended Ride the Wave, a Family Forum sponsored by the Nova Scotia Association for Community Living (NSACL), the Halifax Association for Community Living (HACL) and the Progress Centre.   The day consisted of several presentations by parents, caregivers, experts in the field and self-advocates.  There was also plenty of time for discussion and opportunities to talk to others present.  The day was a great opportunity both to learn about how to advocate effectively and to learn more about issues of shared concern.  I want to share with you a few thoughts I have coming out of the day…

When our kids are preschoolers, we are lucky to have the Progress Centre to help support us and introduce us to families of kids with similar needs.  To me, that has been one of the most valuable outcomes of being involved with the Progress Centre.  I worry that when our son enters the school system I will miss those opportunities to connect with other families.  One way to keep connecting is to get involved with an organized group like the HACL. 

However, the parents present at the event spoke of barriers to engaging with this type of group: limited time and the need to focus on dealing with the school system.  They also spoke about their feeling isolated and uncertain in dealing with the school system to get the support their children need.  One idea that was raised to help overcome these challenges is to form special needs parent groups at each school to support each other and share knowledge and information on how to navigate the system and resolve concerns.  What if more than one parent has a similar concern?  Several voices working together are more effective than one voice alone. 

What we need to recognize is that no one is going to organize this type of group for us – we need to get out there and take some action ourselves!  Once your child starts school, reach out to other parents, talk about what concerns you, and work constructively together to solve issues and provide each other with support and encouragement.   Connect with established groups like HACL to see what services they can provide or what advice they have to offer. 

Looking beyond the school years, when my son grows up, having benefitted from early intervention and an inclusive school environment, I want him to be supported to work at a meaningful job in the community and live as independently as possible.  I think that most of us Progress Centre parents share these types of goals. 

I don’t want my son to end up in an institution where he may be isolated, lack stimulation and be more vulnerable to abuse.  And yet that is where some adults with cognitive disabilities still end up.  Nova Scotia, unlike several other provinces, still maintains several residential institutions.  There is no clear commitment to close these places and increase support for community based services.  This is something that we should be aware of and we should be supporting the efforts of parents of older children who are trying to get the message across that institutional care is not acceptable.

There are many challenges facing families of children with special needs that other families do not face.  We need to get engaged, reach out to others and make sure our kids are able to live their lives the way they want and deserve to.

Mary Ellen

PFCC Award

Tonight I chaired a meeting of a committee to select the recipient of the third annual Award of Excellence for Patient and Family Centred Care at the hospital where Malcolm was born and receives all of his care, the IWK.  Winner(s) will be announced at the IWK AGM on October 24.  I helped start this award on my first year on the then-new IWK Family Leadership Council as a way to recognize and promote family-centred care. 

A lot of people questions what this means and assume that great hospitals like the IWK are already doing this...which they are, to a certain extent. 

What we're trying to promote is involving patients and families in making decisions about their care - collaborating with them rather than sharing recommendations and decisions after all the discussion has taken place.  This includes things like communicating information to patients or families in a way that is easily understood, including patient and families in making key decisions regarding care, ensuring families are included in multi-professional rounds and supporting them in participating in those rounds, and understanding the needs of patients and their families.

This will likely be my last year of involvement with this award.  Malcolm's health issues have subsided so I will likely focus my volunteer time on other activities once he's in the school system.  It's been a great feeling to help establish the award and influence who receives it.  It has been especially great to read all of the nominations that come in and learn about so many dedicated caregivers who are really doing their best to support patients and families.

Mary Ellen

Speech update

I have not given a speech update on Malcolm in quite a while.  Last spring, he started to try to say more words - a real breakthrough.  Unfortunately, it is almost impossible to understand what he is saying.  We can usually figure it out given the context but people who don't know him most likely would not even realize he wasn't just babbling.

We decided to ramp up the speech therapy.  He was only being seen once a month through the public system so we found a private therapist.  Her office is located close to our house, which is convenient.  The activities she does with Malcolm are similar to those of his regular therapist.  Malcolm seems to respond well to both and I think that it's beneficial to have the weekly sessions with a trained professional rather than just Jan and I struggling through a whole month...

This fall, he is being seen twice a month through the public system.  This is fantastic as we love his regular speech therapist.  We continue to see his private therapist on the alternate weeks for a slightly longer session than in the spring so it is a win for everyone I think.

But have the extra visits resulted in improvement?  This is very difficult to say.  Some days he tries to say words on his own and some days he does not.  He usually will try to say words if prompted by an adult (or sometimes his brother!).  He generally likes to do the word games that are suggested by his therapists to help with his pronunciation.  So we'll continue on as we are and really try to promote more speech development.

In the meantime, he continues to communicate quite well through signs, sounds, pointing, etc - let's just say he doesn't usually have trouble getting his point across!

Mary Ellen

31 for 21 (x3)

This is my third year taking on the 31 for 21 challenge.  I will try to add the "button" tomorrow but I do encourage you to follow this link and check out some of the many blogs of parents with Ds, or in a few cases, individuals with Ds, maintain.  The goal of 31 for 21 is to raise awareness about Ds.  The challenge is to post a new blog entry every day for the month of October.

Wish me luck!
Mary Ellen

Thank you

Today Team Malcolm ran in the Terry Fox Run.  Friends Jen and Lauryn joined us and Grama and Grampa Rainey were there to cheer us on.  Donovan and I ran one loop (3.3 km) with Lauryn, Jen ran two loops and Jan and Malcolm walked a couple of kilometers.  Donovan ran almost the whole loop - what energy!  Lauryn and I were almost outdone by a six year old.  It is a fun event with fresh waffles and other goodies to eat after - what a welcome treat.

We raised over $1,400!  Many thanks to those who donated online, by cheque or cash.  We were very pleased that so many of our family and friends decided to give a little extra to cancer research this year.  We hope to keep doing the event and to raise at least $1,000 each year for ten years - so that we can help contribute at least $10,000 to the cause.  Thank you all for being a part of that and stay tuned for next year!

Mary Ellen

Terry Fox Run 2012

On September 16, Team Malcolm is again participating in the Halifax Terry Fox Run.  After our success last year, we have decided to make it an annual event.  That smiling face you see above has benefited from cancer research and we want others to benefit the same way.  As recently as the 1990s, more kids were being killed than cured from the treatment they received for Malcolm's specific type of cancer.  Research revealed that kids with Down syndrome have a particular sensitivity to the chemo drugs used to kill the disease.  By drastically reducing the doses these kids receive, the survival rate has now increased to upwards of 90% - greater than for any other type of childhood leukemia.  Researchers are now studying the unique characteristics of kids with Ds to try to replicate the same result in all kids.  Research does make a difference.

We support the Terry Fox Foundation as it is a volunteer driven organization that supports research into a broad range of cancers.  This year as we run in honour of Malcolm, we also carry in our hearts family friend Darren and our Uncle Brent, and their families, as they have been journeying through their own experiences with cancer this year.  In addition, we never forget the faces of the other kids who shared Malcolm's journey at the IWK.

We welcome small donations, large donations and expressions of support.  Terry Fox is about hope.  Together we can make a difference.

Mary Ellen

We're Back

Rocket Man

This is a rather late Father's Day post.  Donovan heard about bottle rockets at school and he asked his dad if they could make one.  Jan obliged - he looked up directions on the Internet and then he and Donovan took a field trip that included stops at his lab (for a rubber stopper) and Canadian Tire (for a manual pump).  They built the base and the rocket at home and then took it for a test run.  The bottle is filled partway with water and then air is pumped in until the pressure makes it launch into the air!  Very exciting.  Donovan and Daddy took Malcolm and Mommy out to see it.  Malcolm sat on my lap while the rocket launched and then it was his job to go retrieve the empty bottle, which he did very nicely and then settled in my lap to wait for the next episode.  Too fun!

The last photo shows Malcolm at the playground last weekend with his little basketball - he is getting to be a big boy!

Today was a very damp, cold day but we weathered through family fun day for Malcolm's daycare at a local park for two hours.  Tomorrow it is pirate day down at the waterfront and I am seriously considering breaking our winter coats out of storage...

Mary Ellen

Busy boys

We have been enjoying a great spring here in Halifax - lots of sunshine and dry weather (and don't worry, the occasional rain storm to keep things real...).  You can see the boys having fun together.  They love playing together and especially goofing around.  On Saturday we went to Spring Fling at the school and Donovan refused to go on the bouncy castle, which he had been talking about all week, unless Malcolm went with him.  Luckily Malcolm decided he wanted to try it and had a great time!

A couple of weeks ago I had the boys at the park and we were playing tag on the playground equipment.  Both boys were having a lot of fun (for those of you wondering, Malcolm and I are on the same team and Donovan has a great time climbing and running and generally avoiding getting tagged...Malcolm is getting better and better at climbing on all the equipment as trying to catch up to his brother is a great motivator).  At any rate, there was a Dad there with a little girl who was maybe just three and a baby who was a few months old.  He was sitting on a bench for a little while with the baby watching us play and really enjoying it.  He asked me how far apart my boys were and I said about 2.5 years.  He said the same with his girls.  He went on to say that he couldn't wait till his girls were old enough to play together like my boys and that he hopes they will have as much fun together as my kids.  What a great compliment!  I don't think he realized there was anything unusual about Malcolm (men seem less likely to notice the Ds traits than women) or maybe he did and it didn't matter. 

What a great thing to know that both my boys can be role models for others!

Mary Ellen

Happy Easter!

Summary

I see I've had some new people checking out this blog - likely in response to a comment I posted on the blog written by the awesome father of a sweet little girl. She has just received a very troubling diagnosis - referred to by her dad as the C-word (I can relate - it was months after Malcolm was diagnosed before I could actually say that word in connection with him...). I posted a comment inviting him to check out Malcolm's blog in case she has the same type Malcolm did. For those who are not in the know, a quick summary...

I started this blog when Malcolm began treatment for AML, sometimes called MDS or AMKL, which is a type of leukemia that is much more common among young kids with Down syndrome than "typical" kids. If you go back to my early posts in 2010 you can read all about it. The posts are pretty factual in nature and were intended to keep family and friends in the loop on Malcolm's progress through treatment. His type of leukemia required intensive treatment for about six months. It meant he had to spend most of that time in hospital.

The other major type of leukemia, ALL, is also more common in kids with Ds than without. Treatment for it lasts about 2.5 0 3 years but it is usually primarily outpatient (barring complications). Kids with Ds and AML have a better than average survival rate - a whopping 90%. Kids with Ds and ALL have the same survival rate as all kids - around 70% (but improving all the time with advances in treatment and supportive care).

You can find some blogs of other kids with Ds and AML here - they were a great lifeline to me when I was in with Malcolm. Having your baby diagnosed with a life threatening disease is like nothing I can describe or ever wish to experience again. My thoughts and prayers are with Sarah and her family...

Mary Ellen

Speech update

I wanted to share this photo because it shows Malcolm signing his version of "cow" while he's standing beside one. The entire time we were at the farm, when he was in the house he kept signing "cow" and pointing outside. Sometimes he went over and got on his coat, hat and boots all by himself - ready to go and very hopeful someone would take him out! When we returned to Halifax, he kept making the "cow" sign and pointing outside and I had to keep breaking the tragic news to him that there are no cows outside in Halifax and it would not be possible to go see any today...

Malcolm's comprehension has really improved over the last several months. He understands many simple sentences and commands. He uses his signs more spontaneously to label things and indicate what he wants. Sometimes I'm guilty of responding to his rather emphatic grunts and gestures as he can make it obvious through that type of communication what he wants, but the goal is to have him learn and use a more sophisticated system so I have been trying to insist he sign for things properly instead of taking short-cuts.

Malcolm is saying "bye-bye" (actually, it sounds more like "ba-ba") very consistently now and is trying to verbalize more. Much of his verbalization does not sound much like the word or words he is trying to say but hopefully that will come. At speech therapy he tried a new game where his therapist had prepared a number of pictures of items that start with "b" and he got to pick a card and then had to try to say the word to get a reward (a turn with a toy). It worked very well and we have been playing the same game at home. He at least tries to say the words and occasionally they sound quite close. He is trying really hard to say "Donovan" but it sounds more like "Na-Naaa". He is usually motivated to say it when they are outside and Donovan is running too fast for Malcolm to keep up - then he really belts it out.

That's it for a speech update - Malcolm continues to do really well and progress at his own rate. We don't think he will be talking up a storm anytime soon but one never knows - he has surprised us before...

Mary Ellen
ps for those of you wondering why Malcolm is wearing a pink flowery coat it is his barn coat - a hand me down from one of his cousins that Grandma Lee has on hand for him to use when he visits...I think it's a good look on him!

March Break

We got a lot of great photos from March Break on the farm. I liked these three as they show how much Malcolm likes to pretend play - much more so than Donovan. He really wanted to dress up in the apron that his cousins had been wearing earlier. He then went on his own accord to pick out a doll, bring it over to the crib, carefully put her in bed and put a blanket over her. He made the 'sleep' sign a few times. He was very pleased with himself. He often likes to pretend his stuffed animals are sleeping or eating (two his his favourite activities I guess!). His speech therapist has said that he obviously knows the script we just have to help him with the words...I have learned how to interact with Malcolm during his pretend play to encourage him to sign and communicate what he is doing but more on that after his next speech session, which is tomorrow...

We had a great time seeing everyone at the farm and in TO. Our very first March Break vacation was a great success and am glad we have many more to look forward to.

Mary Ellen

Feeding update

I used to blog a lot about Malcolm's feeding issues and I haven't provided an update in a while. That's because he has been doing really well! In the photo above he is relaxing in my lap eating some crackers - taken at Christmas. In terms of an update...

He is actually able to eat small pieces of meat quite easily now, and he seems to quite like meat. He is doing much better with chewy bread as well, though he still doesn't eat a lot of it and tends to prefer crackers or toast, given the choice. He tends to stuff his mouth way too full to the point that he can hardly chew and sometimes bits of food fall out (which sounds really gross but we are so used to it I don't even blink anymore). I am told that this is because of the low tone and delayed muscle development in his mouth. He may have trouble feeling how full his mouth is, or he may be stuffing food in to help move the chewed up food to the back where he can swallow it, because his tongue and other muscles are still not doing this effectively. My feeling is that he will continue to improve slowly and I expect that he will eventually be able to handle all foods quite easily.

His fine motor skills are quite good. He is very adept with his spoon, just needing a bit of help at the very end of a bowl as he has trouble scooping or scraping out the last bit. He is getting better at spearing food with a fork. He understands the concept of cutting but his not able to cut very well on his own, though to be honest this is an area where I haven't given him much practice - I should be giving him a dull butter knife so he can cut his own soft foods like cooked carrots.

I wish I had a video of some of his mealtime habits. He's a cute little guy who will have food smeared all over his face, dripping down his chin and falling out of his mouth, but if he gets the least little bit on his hands all of a sudden it's a major catastrophe and he wants a cloth right away to wipe his hands. So in some ways he is quite particular and fastidious. He also gets really frustrated when he drops food from his spoon. He has taken to refusing to pick it back up himself (this may involve getting a finger dirty, after all) so fusses until I give in and help him out. I think at daycare he is a little more independent and less concerned about messy fingers but at home it continues to concern him.

He can drink from a regular cup perfectly well and in fact does so regularly at daycare. At home I prefer to give him his little cup with a lid and straw as he has a tendency to chuck his drink off the table once he's decided he's not thirsty anymore.

He still sits in his highchair most of the time which is a real lifesaver. He is Mr. Grabby at the table and likes to grab whatever is in reach, play with it briefly, and then throw it across the table or onto the floor. I think as he gets older he'll grow out of this behaviour (obviously, we don't encourage it and seek to correct it whenever he does it) but in meantime he will remain strapped in and slightly apart from the table.

Malcolm is 30 pounds now and three feet tall. His legs are quite short (just starting to wear size 2 pants - mostly still wearing 18 mos pants!) but he is definitely stretching up. In the photo above he is having fun throwing a ball down the hallway. As he starts to eat more meat and bread, I will have to be a bit careful about how many calories he is eating each day as obesity is a real concern for kids with Down syndrome. Luckily he also really loves fruit and many vegetables, and so far (fingers crossed!) doesn't like really sweet stuff and hardly ever eats dessert (except occasionally ice cream) or candy.

A quick note that Malcolm's bowel issues seem to be getting better. He is waking far less at night and is more regular. He still strains a fair bit at times but I think if things continue as they are we will assume it is normal and follow-up with his doctor at his next scheduled appointment in April.

Poor plumbing

Warning: don't bother reading this post if you are not interested in detailed accounts of bowel issues...

I think things are finally settled down with Malcolm. Two weeks ago I took him to the pediatrician for another synthroid prescription. I told her at the visit that Malcolm had been having a lot of trouble with his bowel movements - straining a lot even though everything seemed nice and soft. She ordered an x-ray and early the following week called to say that the x-ray showed that he was extremely constipated so needed to start taking a laxative right away. This made a lot of sense to us as his condition had worsened over the weekend and he had two nights where he hardly slept at all due to his discomfort (at least during the day he seemed ok). So we started him on the laxative but things did not get better - they got worse! Two more sleepless nights and over two days with absolutely no BM (following a couple of days with very little movement) and to top it off he had bad cold with a barky cough and on-again off-again fever.

So last Thursday after yet another sleepless night I'd had enough and called to get another doctor's appointment. His pediatrician agreed to see him that day (she's pretty good about stuff like that). He finally had a BM a few hours before his appointment so he was feeling better in that department when she saw him. She listened carefully to his chest and pronounced it able to clear whatever was rattling around so no worries there.

So one would think his weekend would be better than the last but it was not to be. His fever returned late Friday afternoon and again Saturday. Despite his initial BM he continued to have a lot of trouble in that department. Sunday the fever and much of the congestion was gone and he didn't seem obviously uncomfortable but he was incredibly fussy all day long - crying at the drop of a hat, which is unusual for him. But he seemed to get over that (probably just way overtired) and the past couple of days have been better.

Except that he is still have trouble with his BMs - straining a lot and generally seeming uncomfortable. If it continues to disrupt his sleep I will have to speak to the doctor about it again - she wants to keep him on the laxative for a few months and then gradually wean him off. However, if the laxative does not solve his symptoms, it is possible it is something called Hirschprung's disease, which means that some of the nerves are missing from his colon making the muscles less effective and BMs more difficult. This condition can only be diagnosed with a biopsy which is fairly invasive so I think it will only be explored if nothing else works. Fingers crossed that things improve and the poor kid can soon go without Olympic-grade exertion required.

Presenting to the Class

The presentation was great. My friend Alice came over Wednesday morning and we went through what we would talk about a couple of times. We settled on a few activities and they were all well received by the kids. For example, first we talked about how people are the same and how they are different - we had the kids stand up if they were wearing pink, had hair, etc. Then we asked them to look at the two of us and tell us how we were different. Later in the presentation when we were talking about communication the kids were split into two groups - one group was given a word that they had to convey to the other group without any sounds and the other group had to guess the word - all great fun for the kids. It took a lot of pressure off me that Alice gave a big half of the presentation as she did such a great job. Donovan helped demonstrate some signs to the kids and he loved it - so proud to share about his little brother.

I went back in the afternoon to read a book about a little boy who has a friend who has Ds (My Friend Isabelle). This actually turned out to be somewhat nerve-wracking as the Vice-Principal was in the classroom for the afternoon to evaluate the teacher but it felt like she was evaluating me as I read to the kids! Then I stayed and kids took turns reading to me individually - I have gone into the classroom several times to do this while Jan's parents watch Malcolm and it is so great to see what goes on in the classroom - so much fun...

Mary Ellen