Terry Fox Run 2017

Team Malcolm had a great run!  Thank you for your support.

Rainey Family Christmas Letter 2016

Rainey Family Christmas Letter 2016

2016 was a year of travel for the Raineys!  Or at least, more travel than has been the norm since Kieran joined our family a little over three years ago.

We had a fun-filled Easter weekend at a local resort that provided family-friendly entertainment the whole weekend, and all you can eat buffets at every meal.  Donovan loved this as he often eats more than I do these days as he continues to play hard and grow hard.

In July, we got really ambitious and all flew across Canada to beautiful BC.  Jan had a conference there so we decided to join him.  We had a great time connecting with family and friends.  Sheila deserves a gold medal for taking a week off work to help me with the kids while Jan was at the conference.  We visited numerous playgrounds, splash pads, pools, parks and other local attractions.  The highlight of the week was an outing to the Stanley Park Aquarium topped off with time at the splashpad and dinner in the park with Daddy.

Then we packed up and headed to Barriere to meet up with my parents and visit with extended family.  Surrounded by family and spending every day outdoors with such breathtaking scenery reminded me why it one of my favourite places to visit.  Highlights included swims at private beaches, fishing, a tour around Wells Grey and time at the farm.

After that we headed back south for a few days on Vancouver Island.  A quick stop in Victoria where a bug zoo was a big hit and then we were kindly hosted by John and Susann in a fantastic cabin on a lake.  The kids had a great time caving and paddling around.  We enjoyed a relaxing evening with a campfire by the water.  What a perfect ending to our time in BC!

But not the end of our trip – Jan continued home while I stopped in Ontario for a week with the boys to visit some of our favourite people.  We even managed a quick trip to Camp Kintail, where Donovan and Malcolm were able to participate in lots of activities.  After 3.5 weeks away, we flew home in August.  A couple of weeks later we traveled to Cape Breton Highlands National Park to camp for three nights.  Our first visit and what breathtaking views! 

We enjoyed several visits from Jan’s parents.  They are invaluable in helping to look after the boys, especially during the summer on the days I work.  I was still working 3 days/week but am going up to 4 days in January – will miss the extra day home with Kieran.  My parents and my niece Lily visited for a long weekend in September that was jampacked with corn mazes, Peggy’s Cover and other great activities.

Donovan is in grade 5 and a great help with and role model to his brothers.  He is a good student who loves playing soccer, violin and piano.  Malcolm is in grade 2 and his reading, writing and math skills are really taking off.  Kieran is 3 years old, going on 7, and desperately tries to keep up with the two brothers he adores! 

Merry Christmas and Happy New Year!!

Rainey Family Christmas Letter 2015

Rainey Family Christmas Letter - 2015

2015 was another fantastic and busy year for the Rainey family!

In February, Donovan turned 9 years old.  He completed grade 3 in June with flying colours and has been enjoying grade 4 this fall.  He participated in soccer over the summer, rock climbing in the winter and fall, piano lessons, and has had the opportunity to begin learning the recorder and violin at school this year.  He continues to be our “crafty” guy and in particular has welcomed some opportunities to make pottery and take sewing lessons.

Malcolm turned 7 years old and started grade one in the fall and has not looked back.  He has made a huge leap in terms of his memory, which has meant a big jump in both his math and reading skills.  His speech is also improving all the time and he is such a motivated learner – we get such great feedback from his teachers.  He takes a dance class with a friend and can sing ‘Let it Go’ by heart – he is so musical!

Kieran had a big year.  He has gotten very sturdy on his feet as he does his best to keep up with his big brothers.  He is talking more and more and is such a joy to have around.  He has developed a real love of books and also enjoys singing and bossing everyone around.

We made the switch to ensuring Malcolm has a gluten free diet.  This has meant that we don’t bake with any wheat flour.  We have explored many new recipes and have found some really good ones.  Malcolm put on a major growth spurt that his doctors attribute to his new diet, so we know we are doing a good job. 

Jan had a busy year with research and students.  Two of his students successfully defended their PhDs and a student graduated with a MSc.  He also supervised five fourth year students.  His work continues to flourish and he got promoted to full professor in July.

Mary Ellen continues to work three days a week and is continuing with some volunteer work.  She was excited to go home to Ontario (by herself!!) in April to help her parents move into their beautiful new house in Tillsonburg.

In 2015 Jan and Mary Ellen celebrated their 15^th wedding anniversary with a 4 day trip (without kids!!) to New York City.  They had a great time touring around and seeing shows and even had time for a bit of shopping. 

The older boys had a fantastic summer with Grama and Grampa Rainey taking care of them three days/week in July.  They made a lot of great memories going to the lake and the beach.  In August we all headed back to Ontario for a couple of weeks.  As usual, the farm and seeing all their cousins was a great hit.  At the very end of the summer, we squeezed in a family camping trip to Fundy National Park and it was a big success.

We have a new addition to announce!  Bobby the cat joined our family in early December.  He is a playful 4 year old who is amazingly tolerant of the kids’ attention. 

We thank family and friends who visited us from afar in 2015 from afar – we love visitors and hope to see more of you in 2016.  Merry Christmas and Happy New Year!!

Terry Fox Run 2015

Santa

Malcolm loves Santa and is right at home on his lap.  Donovan still likes Santa but is questioning if he is real.  Kieran is too terrified of Santa to get within six feet of him!

Rainey Family Christmas Letter - 2014

We had another eventful year here in Nova Scotia!  We have gone from having two rambunctious boys and a baby to having three busy boys to keep track of.  Kieran has been walking since he was 11 months old (in July) and has not looked back.

We had a hot, sunny summer here in Nova Scotia and Mary Ellen greatly enjoyed being home with her three boys.  Donovan played lots of soccer, some tennis and took swimming lessons at the beach.  Malcolm also enjoyed swimming lessons at the beach and had the opportunity to play in a soccer league (but didn’t seem to enjoy that as much as Donovan!)

But, all good things come to an end! In the fall, the older boys went back to school: Donovan in grade 3 and Malcolm in grade Primary (kindergarten) for another year.  Both are thriving.  Donovan is a math whiz, reading up a storm and also enjoys both piano and sewing lessons.  Malcolm participates enthusiastically in all of his classroom’s activities and his second year of Primary has been hugely positive.  He is also working with a new speech therapist and is very motivated to improve his speech.

As for Mary Ellen and Kieran, Mary Ellen headed back to work in September (part-time), which meant Kieran started daycare.  He is attending the same daycare that his big brothers went to.  After a difficult transition, he has overcome his initial misgivings and is now happy to wave bye-bye in the morning.  He even has one particular baby buddy – they like to play together.

Jan continues to grow his research program at work (with 15 or so people now in his lab) while being a very hands-on Dad at home.  He made several short trips this year and is excited to start some new collaborations.   He had several academic papers published and has revamped one of his classes using online resources to make it more accessible to students.

In May, the whole family traveled to Fredericton, New Brunswick for the Canadian Down Syndrome Society conference.  We stopped at an indoor amusement park on the way. The hotel had a fantastic pool and we enjoyed a small suite, so our first trip as a family of five was a huge success.

In early June we went to Ontario for a few weeks.  We had a great time seeing friends and family and relaxing on the farm.  We were especially glad to wave to Grandpa Lee in his last Canada Day parade as a municipal politician!

We are all healthy and happy, though Malcolm has just been diagnosed with Celiac disease so we are transitioning to be a gluten free family.   Mary Ellen is looking forward to exploring new recipes. 

We hope that all of our family and friends experienced as much joy as we did this past year.   Wishing you all a very Merry Christmas and Happy New Year.

Jan, Mary Ellen, Donovan, Malcolm and Kieran

Happy Hallowe'en 2014!

The kids had another great Hallowe'en!  Kieran made it to several houses (not to trick or treat, just to watch his brothers) before heading home for bed and Malcolm almost made it up and down the street before he succumbed.  He was so excited last night that he couldn't get to sleep - very unusual for our live in the moment guy!  Donovan's costume was designed by himself (a black ghost with a beard and a witch hat) and I thought it was great.

Mary Ellen

Finally...

It has been a long time since I posted.  A few people have asked about the blog lately.  In the spirit of 31 for 21 I thought that I would try to do a few posts this month, and then perhaps monthly after that.  For those of you on facebook, I occasionally post pics there so send me a friend request if you haven't already done so....

It's already gotten late so for tonight I will just post a few pics from today.  We had a great weekend - Happy Thanksgiving everyone!

Mary Ellen

Easter Fun

Hunting for eggs

Cool dude with big brother

Wild wild west

Snow Day

The kids are having a great time - they brought up a new toy for Kieran from the basement as well as a few toys they haven't played with for a while. Easy entertainment!

Belated Hearing and Speech Update

I prepared this post a few weeks ago but never got around to typing a final sentence and posting it.  I'm posting it now for those interested.  The postscript is that Malcolm is now seeing the SLP who hosted the session I went to in January.  He has had an assessment by her and will start receiving therapy sessions from her sometime in April.

...and for those of you who are wondering, we survived the storm with no problems - we did not lose power though it must've flickered in the night as the clocks needed to be reset this morning.  There's a lot of snow but I don't think it's more than a few other storms we've had since we've lived here so for us, the storm did not live up to all the hype.  All of us were home yesterday and the kids are still home today but Jan is back to work...beautiful sunny day out now!

Mary Ellen 

We had some viruses plague us last month but we all seem to be well now.  Unusually, Daddy was the most ill but seems to be doing better now.  Grama and Grampa Rainey are back in Halifax and they boys are enjoying visits to their apartment and fun sledding outside.  School is going well and we are in a good groove with all our scheduled activities.

The speech session I went to a few weeks ago was great.  It is a system of hand cues that is intended to facilitate speech and later, reading and spelling.  The basic premise is that individuals with Ds have difficulty forming and speaking words but can learn to do so if explicitly taught the individual sounds in each word, and how to blend those sounds.  I think it will be great for Malcolm.  I am hoping to get some private lessons with the SLP who has developed this system. 

Malcolm had a hearing test last week.  It was suggested to me by this SLP because I had mentioned to her that I have been frustrated that Malcolm seemed to be saying some words and sounds really well but then over the past several months has been substituting similar sounds.  For example, he says "nore" instead of "more"and "boap" instead of "boat" where he used to be able to consistently say these words clearly.

The results of the hearing test didn't really get to the root of the problem.  Because he is older and more able to follow directions, the audiologist was able to get a much more precise reading of his hearing than ever before.  He has mild hearing loss in one ear that has "negative pressure".  Basically this ear feels as if it needs to pop all the time so sound is mildly distorted.  In the other ear, he has more moderate hearing loss.  They believe it is due to a hole in his ear that has resulted from where an ear tube used to be.  It can happen sometimes that the tubes to not fall out as they are supposed to and then the tissue around it becomes inflamed.  Malcolm had an old tube removed in July when he had his tonsils taken out.  The hope is that the hole will heal on its own.  If not - more surgery to repair the hole.

The ENT doctor feels that Malcolm's recent hearing/speech issues may be caused by this hole - he thinks it is slightly bigger than in early October when he last looked at it.  He believes Malcolm may have had an infection in the hole this fall that inflamed it further.  There was no sign of infection last week so the doctor believes that the hole will start to get smaller.  He will check it again in six months.  He does not feel that the hole is so much bigger that there should be a significant change in Malcolm's hearing relative to the fall, so he's not sure that a hearing issue is at the root of Malcolm's recent speech struggles.

So at least we know Malcolm does not have any really significant hearing issues.  Still not sure why the recent speech struggles but hopefully we can get back on track by following this speech program I just learned about.  His learning centre teacher and EPAs are going to try to use it at school - all three were at the same session I attended, which is fantastic.  Maybe it is just a matter of getting Malcolm to focus more on what he is saying.

 

World Down Syndrome Day 2014

Happy World Down Syndrome Day!

A few photos of Malcolm at Christmas time as well as one earlier in the fall holding his little brother.

If you have not yet seen this videoclip, suggest you take a minute - it's quite short but powerful.

Mary Ellen