Summer

The boys are doing great. We have been camping twice, to the beach a lot and have had a couple of family bikerides together. We transport our bikes and the trailer to one of the many great trails around Halifax and go biking together. It is amazing how far Donovan can pedal - if motivated enough, he can go several kilometres without stopping. Malcolm seems to like the trailer. I feel guilty for stuffing him in it as he is the only one of us not getting exercise so we have decided to try to go biking when it is his naptime, when he would normally be relaxing anyways.

On Saturday it was my 25th blood donation. I got a pin from Canadian Blood Services. This is something that I encourage everyone to consider doing. It may not be glamorous but it is easy, fairly painless and absolutely essential to saving lives. I am the same bloodtype as Malcolm so I like to imagine that he has received some of my blood at some point...

Malcolm received his first transfusion when he was just five weeks old. He had been diagnosed with his blood disorder, TMD, on the day that he was born. We were told it would need to be carefully monitored but that it usually resolved on its own. Sure enough, two weeks after he was discharged from the hospital his blood counts were in the normal range. We had been going at least weekly but the hematologist decided he could wait for two weeks before his next test.

A few days before his blood test, Malcolm developed a cold that worsened with each day. At first I was not overly concerned as he did not have a fever - just congestion. By Thursday, the congestion was very bad and he was very tired (more tired than usual - newborns sleep so much!). I knew he needed to see a doctor. He was scheduled for a blood test in the morning and then to see his pediatrician later in the afternoon. We never made it to the pediatrician. After we returned home from having his blood drawn, we got a call from the clinic to come back right away. We went back in and learned that Malcolm's counts weren't normal at all - his blood was flooded with immature white cells called blasts that were so numerous they actually thickened his blood into "sludge". His heart was working too hard and he wasn't getting enough oxygen from his blood.

He was put on high flow oxygen immediately and sent to the PICU where they inserted a little central line into his chest and hooked him up to countless other wires and tubes. Within a few hours, he had his first transfusion - an exchange tranfusion where they drew out almost half of his blood and replaced it with "packed red cells" to improve the flow of oxygen throughout his body. He started a round of chemo immediately after the transfusion and a week later was feeling much better, his counts were normal and he got to come home. He needed two more transfusions due to the effects of the chemo and then that was it - he rebounded back to great health.

All the medicine and science in the world can't replicate blood, which is so essential to so many ill and injured people. They depend on you to find the time to donate. 1-888-236-6283 (1-888-2DONATE)

Mary Ellen

Playtime

Malcolm is starting to do more pretend play and he loves to put tigger into his big chair and pretend to feed him. We had a very good speech therapy session today where pretend play is very much encouraged - ideally with an adult playing along to add vocabulary and encourage vocalization. Malcolm had his hearing tested today and it is perfect - he passed all the tests with flying colours. One tube is in and one appears to be out so it is a good sign that even the ear without the tube does not seem to have any fluid on it.

Malcolm had his blood checked last week and it looks fantastic. His hemoglobin was 135, platelets were 227, white blood count was 7.3 and ANC was 4200 - all well within the normal ranges.

Donovan has learned how to ride a bike. It is now his favourite thing to do and he is always asking us to take him to the park to ride his bike. If it's not raining, we usually try to take him at least one a day. Hopefully this will lead to years of enjoyable exercise for him. We want to try going for a family bikeride sometime soon (maybe this weekend) - even if just for a short time. Donovan is really excited about the idea. Not sure if Malcolm will love the bike trailer but we'll soon see...

Mary Ellen

Healthy Heart

Malcolm had his heart checked out this week. He had an ECG and echo (ultrasound of the heart) and then we talked to his cardiologist. Everything is fine. The pressure on one side of his heart is still somewhat higher than normal but not high enough to be a concern (unless the heart muscle starts to show signs of degrading) so no further intervention is required. He still has a small VSD and ASD - the VSD causes an audible murmur but these small holes are not expected to cause any problems. Malcolm will be seen again in one year. We expect that he will be checked out annually by a cardiologist throughout childhood and possibly for the rest of his life (because of the PDA they repaired in his heart and because of possible long term side effects from the chemo). But it seems like for all the jargon etc the bottom line is that he has a very healthy heart that is expected to stay healthy. It was a good news day.

Mary Ellen

Family Fun Day

Saturday was the annual Family Fun Day put on on by the boys' daycare, Allegro. They provide live entertainment, A Pig's Jig, which as you can see was very entertaining for Malcolm (they let him keep the tambourine!). It is held at Dingle Park (aka Sir Sandford Fleming Park - not sure why it is known by two names but it really confused us the first year we were here...). There is a hotdog BBQ and parents bring salads and desserts - this year's spread of food was great. The main event is a fundraiser run - the kids all do a loop around the park. Donovan ran the whole way and was one of the first to cross the finish line. Malcolm and Daddy were a team and kept pace with a couple of Malcolm's little friends. All the kids got medals and prizes. The rain held off and everyone had a good time.

Happy Father's Day to all you great dads out there,

Mary Ellen

Pirates

Donovan had a special day today. He got to dress up like a pirate with a friend and several other little boys, board a pirate ship and have a water fight with pirates on another ship! It is a fundraiser for the Make-a-Wish Foundation. Donovan was on the Mar II, the one that looks like a pirate ship in the first photo. The other ship is Theodore Tugboat. Malcolm got to watch with Mommy from shore and had a really fun time at the playground afterwards. It was a great event.

Malcolm's OT visited him at daycare on Friday and thought he was doing really well. He is being followed by OT every few months but there are no concerns with his fine motor skills at present as they are developing really well in tandem with his gross motor skills. Donovan had an orientation session at Sir Charles Tupper School which he will be attending this fall. They do not call the first year "kindergarten" out here - it is referred to as "Primary". So he will be in grade Primary come September. He is really looking forward to it.

Mary Ellen

Developmental Update

Malcolm's physical therapist and early interventionist visited him at daycare last week. They both feel he is doing really well. Here is a sample of what his P/T said:

We had a great visit with Malcolm at daycare this past week and I think he loved having us there. He is doing great - he transitions well between activities, is engaged and sits quietly in circle time, is using signs and making sounds - he is such a delightful little guy!

We talked about how to structure long walks with the class -We don't need to put an expectation of how long he should walk as every day will be different and depends on any number of things. I feel that starting off in the stroller or walking until he has had enough is reasonable right now. This means that when the class has reached their destination (especially for outdoor play), Malcolm will have plenty of energy for navigating more challenging surfaces and situations to help him with development of those higher level balance skills. On the return walk, allow him to have a ride in the stroller if he requests it and then let him walk after a rest with the rest of the class.

It is great to see Malcolm gradually getting steadier on his feet. He is trying very hard to jump and is determined to run. He loves playing with balls and going to the playground. He had a lot of fun tonight playing on the sidelines while his big brother played soccer.

Malcolm had speech therapy yesterday. He is making good progress with his signs and vocalizing (babbling) a bit more. His speech therapist intends to visit him at daycare later this month and will see him again in July. In September, she wants to see him a bit more often, every 2-3 weeks, which is fantastic.

Mary Ellen

Holland or Not

Some of you may be familiar with Emily Pearl Kingsley's "Welcome to Holland" piece (if not, I suggest you click on the link and read it). It is a very sweet piece and something which I find comforting to read when feeling a bit overwhelmed with Malcolm's Ds status. At the same time, I have always been vaguely unsettled that although it seems like a nice mindset and metaphor, I have never really felt like being the parent of a child with Ds is like travelling to the wrong western European country - it seems a bit too trivial, a bit too relaxed. I recently came across an article by Michael Berube, father to a son with Down syndrome and author of the book "Life as We Know It: A Father, a Family and an Exceptional Child". I can't reproduce the entire article, but I identify pretty well with the following:

"Jamie has Down's Syndrome and will have Down's Syndrome all his life, but on most days, for most purposes, all that means to his mother Janet and to me is that he's sometimes hard to handle, sometimes impervious to danger, always impervious to the benefits of fruits and vegetables, always willful...I like to think we were asking for a story more adequate to the grainy details of our lives, a story that acknowledged all the ordinary and extraordinary difficulties of parenting a child with Down's Syndrome. It's not simply a matter of exchanging Rome for Amsterdam, resetting your sights accordingly, and settling in to have a good time. In fact, it's nothing like a vacation at all. It's more like discovering that you'll be living the rest of your life in a country that may be physically and spiritually gratifying but might also be volatile, unmapped and terrifying."

For those of you who wish to read the full article and have access to academic journals, the abstact and citation is here (it's also indexed on PubMed). Sometimes it is interesting to reflect on how others in a similar situation view the complexities of have a child with Ds.

Mary Ellen