Sunday, December 21, 2014
Santa
Wednesday, December 3, 2014
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
Friday, October 31, 2014
Happy Hallowe'en 2014!
Mary Ellen
Monday, October 13, 2014
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
Tuesday, April 22, 2014
Thursday, March 27, 2014
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.
...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.
Friday, March 21, 2014
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
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
Sunday, January 19, 2014
Happy New Year!
We had another great holiday at the farm. My parents had a professional photographer come out to the farm and take extended family photo shots. We decided to have some baby photos taken at the same time. Below is a a photo of Kieran (at 4 months, 10 days old) and one of the two older boys - a silly shot where the photographer encouraged the boys to do something off the wall - not that much encouragement was needed! Much preferred by both boys to the more standard look ahead and smile. The problem was that after this shot Malcolm thought every shot was a funny shot and the result is that the best portrait shot of the family features Malcolm being silly.
At any rate we had a great Christmas at the farm seeing family and friends. We are settling back into life in Halifax. I will be attending a speech therapy training session next weekend and I intend to update you all on that.
In the meantime, we continue to enjoy our happy, healthy life. Donovan is doing rock climbing lessons and skating lessons this winter and I have resolved to try to have a few more of his friends over for playdates since we did very little of that in the fall. Malcolm is enjoying school but finds it tiring. We now have a family membership to Dalplex so while Donovan does his rock climbing lesson, Malcolm and Kieran are busy playing at the Funzone.
Hope that 2014 finds you all as content as we are,
Mary Ellen
At any rate we had a great Christmas at the farm seeing family and friends. We are settling back into life in Halifax. I will be attending a speech therapy training session next weekend and I intend to update you all on that.
In the meantime, we continue to enjoy our happy, healthy life. Donovan is doing rock climbing lessons and skating lessons this winter and I have resolved to try to have a few more of his friends over for playdates since we did very little of that in the fall. Malcolm is enjoying school but finds it tiring. We now have a family membership to Dalplex so while Donovan does his rock climbing lesson, Malcolm and Kieran are busy playing at the Funzone.
Hope that 2014 finds you all as content as we are,
Mary Ellen
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