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!