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.