Christmas 2011

Two days before Christmas it snowed! We went out right away and made two snowmen, pulled Malcolm around in the sleigh, made a snowcastle and shoveled. In Halifax, the snow doesn't always last long so it's important to make the best of it right away. However it turned cold and the snow stayed for a couple of days - there is still some outside but it's partially melted now.

We had a good Christmas and the boys were very good opening presents so it was a controlled chaos. The kids love all of their gifts and have been having fun playing with them. The final picture above features Donovan with his lego alligator from legoland - it took him two afternoons to build - and his glow-in-the-dark pirate tattoos.

Yesterday we broke in our new hockey sticks outside and are on our way out for another match-up...

Mary Ellen

Family Christmas Letter

Greetings Family and Friends:

In an effort to “go green” we have mailed out cards this year but rather than printing our Christmas letter indicated it would be placed on the blog. As many of your know, the blog was started in June 2010 when Malcolm was having some health concerns to keep everyone near and far up to date on his progress. Mary Ellen has kept it up ever since, though now posts only a couple of times per month, except in October when she participates in the “31 for 21” challenge to raise awareness about Ds.

Malcolm’s treatment ended mid-January and he has never looked back – he is the healthiest one of the bunch now with a mild cold his most serious ailment all year. In February, Mary Ellen travelled with the boys to Ontario for a much anticipated visit home. She ended up staying about six weeks and all had a great time. Jan was able to join them for a couple of weeks over his reading week but otherwise had to stick around Halifax to teach classes and generally get some work done. His hard work paid off as he was successful in winning several grants which guarantees that he will be able to effectively run his research program for the next several years. He also received tenure and got promoted to “Associate Professor”.

Mary Ellen returned to work in May but negotiated a permanent position at three days per week. She has been very busy and successfully managed development of a major legislative package that was introduced in November. She really enjoys having some extra time with both the kids and has no intention of seeking a fulltime job anytime soon.

We had a great summer. Our thanks to all who visited Halifax. We had a great trip to Ontario to visit family and friends in late August and then it was back to Halifax for the biggest event of the year – Donovan started school!

They call kindergarten “Primary” in Nova Scotia. There is no junior kindergarten so Donovan started at 5 years old and attends school every day, 9am – 3pm with a 1.5 hour lunch break. On the days I’m at home, he usually comes home for lunch. On the days I work, he goes to a really great lunch and after school program just down the street from the school – which is just down the street from our house since we live on the same street as the school! It has been a huge adjustment for the whole family but Donovan is doing really well. He likes his teacher (a man!), has a new best friend and is already on “Level C” reading books.

Malcolm attends daycare on the days that I work and has been doing really well there. We know he loves it because he is so happy to go there every morning – waves bye-bye to his mother and then turns to the toys and makes the sign for “play” with a huge smile on his face. All the other kids love him and like to include him in their play – a few have started signing words to him which is so nice to see.

We hope that your year has been as fantastic as ours, and that 2012 will be even better.

Merry Christmas and Happy New Year,

Mary Ellen, Jan, Donovan and Malcolm

More Farm Fun

We returned from the farm late yesterday - another great trip. The first photo shows our handsome devil with his hand expertly bandaged by his (great) Aunt Mary Lou, who has many years of experience as an ER nurse. In fact, we made an unofficial visit to the local ER to say hi to Aunt Mary Lou and take advantage of her expertise after Malcolm burned his hand - it obviously helped him to feel better as he stopped crying after his hand was immobilized and it has been healing very well.

In the second photo, Malcolm enjoyed his ride with his Grandpa on the Kubota - he remembered it from the summer - as soon as he saw it he started pointing excitedly and wanted to climb on it. He also remembered the cows and the chickens (the chickens are all now in the freezer but we had to go visit their former abode just to make sure Mommy was right and they are all gone...).

In the final photo, the kids were having fun with cousin Lily in a giant pile of leaves that they helped to rake. Aunt Beth came over to play and they had a great time jumping in it.

We had a great time visiting with everyone and squeezed a lot into five days - all in all, another very successful trip to the farm.

Mary Ellen

Hope for the future

Just a quick post to encourage you to read this story. Pay special attention to the history of John being included in so many different ways as a child and as an adult - we hope we can, with the help of other caring people, offer the same to Malcolm.

Mary Ellen

Fall Fun

Yesterday it was really nice out so in the afternoon we went to a wildlife park. They have some really stunning birds there. The boys had a good time. On the way home we stopped at Shubie Park which we had never been to before but will definitely go again. There are very nice walking paths along the canal and the boys found a really big hill to run up and roll down which was tons of fun (and exercise!) for them both.

Today was even nicer than yesterday and we spent a good chunk of the afternoon (after school) outside raking leaves and tidying the yard. I need a few more afternoons like that as the yard needs more work - I always seem to neglect it at the end of the summer...

Mary Ellen

Happy Hallowe'en!

I have one very photogenic pirate and one cat who was none too happy to be a cat. Once we got going Malcolm was a real trooper and did really well going up and down steps to people's homes (though it was a slow go...).

This ends 31 for 21. I hope this month gave my regular blog readers some food for thought about Ds and that you've enjoyed the opportunity to see and hear a bit more about Malcolm. The blog will be updated a couple of times a month, as before. We continue to grow as a family, we're all happy and healthy, and are thankful to have each other so life is good.

Mary Ellen

Judgements

We managed to get our pumpkins carved! In the second photo, Malcolm is dancing to some music with his Mr. Potatohead. Today is the second to last day of 31 for 21 and thought I would comment on a serious subject...

No one likes to feel judged simply because they happen to be the parent of a child with special needs (which could happen to anyone). It is particularly disappointing when it is members of the medical community doing the judging. There are two examples that really quite bother me when I think about them.

The first occurred when I was standing in a line up and overheard a few other moms chatting. One woman was pregnant and they were talking about her being almost 40 and having a child. Someone asked her about being worried about birth defects like Ds, and the pregnant woman replied that, since the screening had not shown signs of Ds, and because she did not smoke or drink excessively, her doctor had reassured her that her chances of having a child with Ds were very small. No doubt this doctor meant to offer reassurance to this woman but she did not choose her words carefully enough - this woman was absolutely convinced, and was spreading the word to others, that Ds could be avoided in some cases by lifestyle choices (which is completely false - there is no evidence that Ds is caused because the mother (or her eggs) have been exposed to particular substances). Apparently, some people believe that mothers like me get what we deserve because we haven't been living wholesome enough lives.

The second example is even more troubling. We came to know a family with a child with Ds who had much more complex medical issues than Malcolm - she was in hospital a lot and was receiving various treatments and therapies. She was diagnosed with a disease that was caused by some of the drugs she was being given that put her at increased risk of a particular type of injury (I'm being deliberately vague so that no one reading this story will be able to identify the family in question). On one break in treatment when the family was at home instead of in hospital, the child did suffer this injury and, of course, the family brought her to the hospital for help. The particular department that treated the injury had full access to the diagnoses of the child and the fact that this type of injury was likely to occur, but nonetheless chose to call community services and report a potential case of child abuse.

The family is quite sure that if this was not a special needs child, the hospital would not have reacted in the same way. There is a stereotype out there that parents of kids with special needs are more likely to abuse their children. I did a quick search though a medical journal database (PubMed) to see if there is scientific evidence to support this. It was difficult to find many studies (which probably means that few studies have been done). Of the few that I did see, some had a very small sample size and so their conclusions are not particularly robust. There were a couple that were broader but these did not conclude that all parents of kids with special needs are at increased risk of abusing their kids. They concluded that those parents already at risk of abusing their children (a small subset of the population) were somewhat more likely to actually do so if they had a child with special needs (I didn't make a note of references but if someone really wants to know contact me or leave a comment and I'll find them again). So there doesn't seem to be any really overwhelming evidence to support the stereotype.

I think it's really unfortunate that the hospital doesn't have better policies to make sure that profiling of this nature doesn't occur. This family had been doing well under really trying and traumatic experiences and they didn't need the humiliation of an investigation of their parenting skills on top of everything else (because they were in hospital at the time the investigation was ongoing, there was no privacy or confidentiality - all of the nursing staff and other staff involved in the care of their child knew about it). Parents of kids with special needs are all too aware that this stereotype is out there and it's very disheartening to think that we need to be worried that when we seek medical care for our child, instead of going into a supportive environment we may be going into an environment where people feel the need to scrutinize us extra carefully for signs that our child needs to be taken away.

I never imagined the incredible bond I would form with Malcolm and could never, ever imagine hurting him. I have never met a parent of a child with Ds who seemed to feel differently. And yet there are other people who, apparently, think we are blameworthy of something. I try not to let this bother me and assume that only a small proportion of people actually think this way, but I do think it's important for everyone to recognize that it's out there. If you ever encounter this, hopefully you can help set the record straight.

Mary Ellen

Fall Picnic

Today was the Progress Centre's annual fall picnic. We had a great day for it - not very warm, but very sunny and calm. It was a pretty good turnout and the boys had a good time. There was an entertainer who was putting on a little show for the kids - playing his guitar and singing interactive songs. Malcolm really liked it and did a really good job making all the signs he was supposed to. It was really nice to see. Unfortunately we had to leave just as the puppet show was starting as Donovan had to attend the birthday party of a friend (it was a busy day!). But we did see several people that we know - one family that we had not seen for quite a while so that was nice.

Tomorrow, we will have fun with costumes and pumpkins - Donovan is quite excited about Hallowe'en this year. Malcolm was running around wearing his new witch hat this afternoon...

Mary Ellen

Quick update

A few cute things Malcolm has done recently:

1. He has started saying something a lot like "bye, bye" when waving bye-bye to someone.

2. Last night he decided to clear the table - his Dad helped hand him dishes etc from the table and he trundled them over to me in the kitchen. He was very pleased with himself!

3. He and his brother have been dancing lots to ABBA - they both like lots of twirls.

Mary Ellen

Costumes

Today Malcolm and I went to look at Hallowe'en costumes. He likes to grab anything he can snag when we're out shopping and today he grabbed a purple witch hat with black lacy stuff all over it. It was a bit big for him but was really cute on his head and he was laughing away as he wore it around the store. So I got it for him - it will be a good addition to our stock of dressup clothes. I also found a fireman's shirt for Malcolm to go with his fireman's hat, a wizard hat for the boys, a batman shirt for Donovan - we already have a cape. And a black cat costume for Malcolm. All for less than twenty dollars, which is pretty good I think. Donovan already has a Hallowe'en costume but will enjoy have a few more items to play dressup with I think.

On the subject of dressing, Malcolm has taken a real interest in putting on his own clothes. He loves to sit down and put his own legs through the holes in his pants, then stands to pull them up (he needs a bit of help which he is unwilling to admit as he prefers to be independent). He has not figured out shirts so well but is getting there. Boots he perfected when we were at the farm in the summer (he refused to wear shoes for a couple of weeks). He has been able to do the "flip trick" with his coat since last winter and just needs a bit of help starting the zipper. So he is doing really well and is (rightfully) very proud of his accomplishments. So he should really enjoy playing dressup with his big brother...

Mary Ellen

Adoption

There are many couples in North America who are willing to adopt a child with Ds. In fact, there is such a demand that it is typically not difficult to find homes for infants with Ds. In the US, there is a real movement on to adopt children from Eastern Europe where infants with Ds are put in orphanages and at age 5 moved to mental institutions. This blog is just one example of many I have found of families who adopt one or more such children. There are charities and agencies devoted to this cause. Many of the families who adopt a child from overseas do so because they have a child of their own with Ds and cannot bear the thought of other children shut away in such awful institutions. Clearly there are many caring individuals who are trying to make a difference.

It is upsetting to think that it was not so long ago that Canadian society tended to shut away people with Ds in institutions. I saw a documentary at the CDSS conference I attended in Halifax the year Malcolm was born. It was about historical abuse of intellectually disabled people at institutions in Canada. It was so upsetting that I had to leave before it was over (and I wasn't the only one). It really drove home the fact that segregation of people who are different is not the answer. Most people are not likely to go to the extent of welcoming a child with Ds into their families through adoption but hopefully most people are willing to let children and adults with Ds into their schools, work places and neighbourhoods. I think we all have a collective responsibility to make sure that some of the most vulnerable people in our society will never again be shunted aside and subjected to such a horrible existence.

Malcolm is lucky that he will benefit so much from changing perceptions about people with intellectual disabilities. We have had very few negative experiences when we introduce Malcolm to people or talk about him with others. Supports and attitudes in the medical community, daycares and schools are all so much better than ever before and significant progress is being made on employment and housing or assisted living for adults. The future has never been so bright and hopefully it will just get brighter as he grows up.

Mary Ellen

Signing fever

Well, we made it through last night. Malcolm felt miserable all night with a high fever so did not sleep much but the fever is gone now so am expecting a much better night tonight. I think it was a reaction to this flu shot which he got yesterday. His arm is really red where the shot went in as well so likely his arm is sore. Jan has been away all weekend but of course now that he's back Malcolm will saw logs all night.

Malcolm did really well with his signing today - we are still trying to get him to pair more signs instead of just doing single signs. Today he used "want" quite a bit as in "want cracker", "want milk" etc. At lunch he was making these really elaborate signs with a lot of energy and purpose. He seemed to be saying that he wanted to go in the "car" "outside" to see a "cow". I have no idea what brought this on. When I said "Malcolm, do you want to go for a drive in the car to see a cow" he nodded his head vigorously and pointed "down" (meaning he wanted out of his high chair). Unfortunately I had to disappoint him and tell him it was time for his nap but he seemed pretty ok with that...

Mary Ellen

Pony

This is another photo from last weekend. Malcolm did not ride on the pony but had fun sitting on it and patting it gently for a few minutes. Donovan quite enjoyed his ride and thought it was great that Malcolm had a turn. We had a good day today too. The weather was great again and we spent quite a bit of time outside. We also carved one of the pumpkins - Donovan wanted to carve all three but it is so mild out I'm concerned they won't last long once carved.

Unfortunately Malcolm is feeling unwell tonight - alternating between chills and being really hot. Hopefully he is able to settle down and get a good night's sleep...

Mary Ellen

Making music

Malcolm rediscovered his music table in the basement so we brought it upstairs and Donovan helped him get settled in a snug little corner to play with it. Malcolm loves musical toys - the other item he has been playing a lot with lately is a battery operated saxophone toy. Malcolm holds it correctly, puts it in his mouth and kind of hums as he pushes the buttons to make noise - where did he learn all that? Malcolm can be very observant. The other thing he and Donovan have been doing a lot is requesting ABBA so they can dance to it together (very exuberantly) - too cute...

Malcolm had a really great week this week. Many days this fall he has been quite fussy when at home with me and needing a lot of attention but this week he was very content to play a bit on his own as well as "help" me with some household tasks - a big relief and hopefully something that will continue!

I kind've fell of the wagon this week in terms of posting but will try to do better for the rest of the month.

Mary Ellen

The Club

The above is advertising a special event for kids under 12 who have special needs or are siblings of a kid with special needs. Sounds great - the Wilderbeats are supposed to be really great. This event at "The Club" will be really great for kids with special needs and their siblings. A friend of mine was one of the founders of The Club. She has a background in working with adults with special needs and just a month or so before she and her family moved to Halifax her second child was born with Ds. So instead of finding a job she devoted a couple of years to volunteering to start "The Club", was one of the authors of a major grant that was successful last year and is now paid (on a part-time basis) for the ongoing work that she does.

I admire her immensely because she saw a void that needs to be filled in order to help ensure quality programming for her child and others many years down the road and she went ahead and went after it. Something I can only aspire to. If you live in Halifax and have young kids (under 12), come on out to see the Wilderbeats and have great time on November 12.

Mary Ellen





Pumpkin Patch

We made a trip to the Valley to Willowbank Farm today. We picked out some pumpkins and squash, visited a small petting zoo, picked some apples, had a hay ride and Donovan had a pony ride! Grama and Grampa Rainey came along too. Both boys seemed to enjoy it - the apple orchard was rough on Malcolm as he was determined to walk around and pick apples by himself, unaided, but there were so many apples on the ground he kept stepping on them and falling...only to get up with determination and grace and keep on going. He can teach us all a thing or two about resilience!

Mary Ellen

Down Syndrome Societies

There is some great stuff on the US NDSS website - in particular you might like the stories at this link. The Canadian CDSS website is also good. The UK counterpart is DSS. These organizations have been around for a long time and offer support to parents and individuals with Ds, and are a good source of basic info about Ds. Happy reading...

Oops I almost forgot to mention that Jan and his research lab are featured in a short video developed to promote the importance of one of the NS health research granting agencies (NSHRF). Happy viewing...

Mary Ellen

Family Centred Care

Last night I thought I had published a blog entry but it did not post properly so it seems to be lost forever. Luckily it was a fairly short one so no harm done. It was a quick update on what the boys are learning - Donovan has been counting by tens, threes and twos at home (for fun - he likes math!) and Malcolm is ready to learn his shapes I think - he can identify many different animals so I just need to make shapes fun (ideas?!) and no doubt he will catch on quite quickly.

So that's basically what I thought I had posted last night. I think I also made the comment that it is harder than I thought to write something on this blog every single night for a whole month. At any rate, on to tonight's topic...

I attended my monthly Family Leadership Council meeting at the hospital today. I'm a "family advisor" on the Council, which is comprised of representatives of patients and family who are receiving or have received care, as well as staff at all levels - upper administration, physician, nurse, other staff. The purpose of the group is to promote Patient and Family Centred Care (PFCC) at the hospital. Part of our time is spent on consults - providing advice on initiatives that various groups in the hospital may be considering. Part of our time is spent on devising ways to promote PFCC within the hospital, which is a huge culture shift. Most children's hospitals, and some adult hospitals, in the US and Canada have these types of bodies that are trying to promote patient/family advocacy and involvement in care, which ultimately leads to better outcomes, such as higher quality of care and a safer environment for patients.

I became involved with the group in 2009, about 8 months after Malcolm was born. Hearing the stories and experiences of some of the other family advisors, I hardly felt qualified to be a part of the group (several of them had had lengthy hospital stays and some had lost their children). Fast forward to today - I have no qualms about stating my views and hoping that they will be heard. I look forward to the coming year and promoting PFCC at the hospital so that other patients and families feel more valued and involved in their care. Surely it is a shame that this is not already embedded in hospital culture?

Mary Ellen

Local stuff

I found a blog recently that is based here in Nova Scotia that has info on it on community events geared towards those with special needs as well as some great legal info. It was nice to run across something so useful that is also local. There are many organizations here in Nova Scotia geared towards helping out people with special needs. An incomplete sampling:

Progress Centre
EINS
NS Association for Community Living
NSDSS

I'm sure we'll get to know many more as Malcolm goes through life stages. We had a great day today, filled with parks and bike riding and leftover turkey.

Mary Ellen

Happy Thanksgiving

We had a great day today on our freakishly warm Thanksgiving weekend. Malcolm is a going concern as usual and he had a great time playing with some toy dinosaurs in his highchair after supper. He knows the sign for dinosaurs because, since he has a dinosaur-obsessed brother, we actually use the word a lot in our house. He was saying "roarrrr" and making their heads butt - and then laughing so hard he had to stop. Then he took his facecloth and starting to wash each dinosaur's face. It was too cute.

We have many things to be thankful for and good health and happiness are certainly at the top of the list.

Mary Ellen

Learning

Wow I must say it is harder than I thought to write something on this blog every day for a whole month. There are some topics that I would like to explore but they require some time to think about and write and time seems to be in short supply these days.

So for tonight I will simply assure you that both boys continue to do really well. Donovan entertained us tonight by counting by tens all the way to 700. Then he got bored and told us that he would finish later. Donovan has also been counting by twos and threes so we are thinking they must be doing a lot of this type of pattern stuff in school - glad he likes it so well! I am intending to work more with Malcolm to learn his shapes. He can match pictures of different shapes quite well and I'm thinking he is starting to recognize shapes more generally. He is able to identify many different animals in different contexts so am sure if I can make shapes fun (ideas?!) it won't take him long...

Mary Ellen

Frequent flyers

Malcolm had a doctor's appointment with his pediatrician on Friday at 5pm. He has an appointment on Tuesday morning at 8:45am at the eye clinic at the hospital. So he is starting and ending his Thanksgiving weekend with doctor's appointments. The good news is that both are just routine follow-up - no emergencies or even concerns to worry about.

We very nearly always see other kids (and their parents) that we know when we visit the hospital. Sometimes it feels a bit like a reunion as we may see several people we haven't seen in a while. This is great as it is often nice to chat a bit with someone who has been through a similar situation to what we have been through, or have some of the same ongoing issues with balancing a busy life with doctors appointments and health concerns. Sometimes it is nice just to see how great the kids are doing. We are always happy to see other kids that we know.

The not so great part of running into so many families we know at the hospital is that it's kind of a reminder that we're part of a club that we never really wanted to belong to. There are kids like Donovan who rarely darken a doctor's door and then there are kids who spend a significant amount of their time in doctors offices and hospitals. We see the same kids there time after time who, like Malcolm, are part of the latter group. The only consolation is that they often do grow out of it. We hope that in a couple of years we will almost never have occasion to visit the hospital, and even now it is much less than a year ago, and becoming less all the time.

I won't even mention the kids that we don't see anymore for the worst reason ever and whose absence leaves a hole in our hearts forever.

So for the most part we quite enjoy our visits to the hospital. On this Thanksgiving weekend, I guess we can be thankful that we have such a great hospital to visit, that so many of the kids we know are doing so well, and that we no longer have to spend so much time there. All good things.

Mary Ellen

Blogs

There is a blog I enjoy reading. It is called Bringing the Sunshine and the blogger, Andi, is a gifted writer who presents a nice mix of personal stories with useful information. She weighs in on some pretty meaty topics like use of the R-word, eugenics and much more. I don't agree with everything she says, but find a lot of her writing to be quite thought-provoking. I encourage you to check it out and see for yourself.

I read a few of the blogs on the 31 for 21 site and I am struck by how personal and emotional many of the blog entries are. So if you are checking them out, be prepared that you may be swept away...

Mary Ellen

Bowling

Today Malcolm's daycare class went bowling. They took the city bus. From time to time the daycare has outings like this. Apparently Malcolm had a really good time. The staff took some photos and will be displaying them in the classroom so I'm looking forward to seeing those.

Just a quick post tonight as I am actually going out - socially - on a Thursday night...amazing how after kids this becomes such a rare occurrence...

Mary Ellen

Class

Today I volunteered in Donovan's classroom for the second time. It was great - the kids were working on their reading. It is fun to see how his primary (kindergarten) class functions and to get to know some of the other kids. Donovan is not very chatty about school so it is like pulling teeth asking him questions about his day etc. But he is very happy and excited that I am a "special visitor" sometimes. Overall Donovan seems to really like school and he likes his teacher - who is a Mister - a very fun guy and a great role model for the kids.

I'm going to go again next Wed afternoon. It makes for a busy day because Donovan has gymnastics at 4pm on Wednesdays so we come home, have time for a quick snack, and then rush off. Malcolm has been staying at home with his grandparents which has been nice for him. There is no way I could volunteer in the class with Malcolm in tow - he would be like a whirlwind leaving a path of destruction in his wake...

We are bracing for two chilly days of single digit weather before it warms up again for the weekend.

Mary Ellen

EI and Daycare

Malcolm's Early Interventionist visited him at daycare today. She goes every couple of weeks to assess how he is doing and offer support to his teachers. I think this is a really great service. Malcolm's teachers are used to dealing with little kids and many of them are ECEs so their training includes a short overview of kids with special needs. But for most of them, Malcolm is the first child with Ds they have worked with. They simply don't have the experience or training to know how to make optimal use of their regular routines to promote his development in the most effective way possible.

It sounds complicated but it's not really. I have had the benefit of being trained by professionals that work with Malcolm over the past three years - PT, OT and Speech - but his teachers do not have the same sort of access or training. His EI also attends many of his appointments with us and of course she has a wealth of experience in working with you children with special needs. So his EI helps to bridge the gap for the daycare teachers. Some suggestions that she left today:

- when he's painting, allow him to choose his paint/paper and immediately reinforce his choice - opportunity to express himself
- pair words with sign
- encourage imitation - he does this well...continue to encourage turn taking
- slow reading/singing down - give time to join in
- pause at repetitive parts - give opportunity to verbalize/vocalize/gesture

We are lucky that Malcolm has always had great teachers who are willing to learn and excited to work with him - they see Malcolm as a welcome challenge to their abilities. So they tend to learn quickly and adapt their routines to better include Malcolm. We have come a long way since the early days after Malcolm was born and we were unsure whether a regular daycare would accept him...it goes to show how attitudes and practices have changed over the past couple of decades - for the better!

Mary Ellen

Speech update

Malcolm's speech therapist asked her technician to gather pictorial representations of all of the signs that Malcolm knows, so that we could provide it to his daycare teachers for them to use as a reference. We received it in the mail and I had to replace a few of them, as they were not accurate representations of the way we do the sign (there are often several versions of the same sign in ASL). I was able to find most of the ones I needed online. I decided to count them at the end and was shocked to discover that there are 65 signs in the booklet - plus there are about a dozen that are missing and need to be added. So my baby boy know signs for about 80 words. I was stunned - I had not counted his signs in a long time and was estimating that he knew maybe 40! The most amazing thing of all is that means that I also know 80 signs - unbelievable.

Malcolm will now say "baa" when he sees a sheep. He also tries to say other animal sounds like, moo, quack, oink, cluck, woof and meow with varying degrees of success. He loves to sing "ee-eye-ee-eye-oh" or something that sounds very much like it (you can guess his favourite song!). He says "Dah" every time he sees his Daddy and sometimes says "Duh" for Donovan. In August he said "Dah...Dee" for the very first time and has said it a couple of times since. He babbles a lot and likes to make sound effects like growling for a bear, roaring for a dinosaur and vrooming for a car.

So his verbal speech is slowly, slowly, slowly coming. Is this "typical" for kids with Ds? I have read, and been told, that kids with Ds are often 4 years old before their speech really takes off. But I have also seen and read about quite a number of kids with Ds whose verbal speech develops well before that - some are saying words before they are 2 years old, just like typical kids. And I have seen the huge variation in adults with Ds - those that can speak almost as well as you or I, those who can speak but have great difficulty in shaping their words so have limited verbal communication, and those who can hardly speak at all. We continue to hope for the best - that at age 4 his speech will magically take off and in no time he will be chatting away, and we will smile and roll our eyes and wonder why we ever worried about it...but more realistically I think his speech will continue to develop at a very slow rate and he will always have challenges in this department. It will be a work in progress for a good many years, possibly his whole life.

In the meantime, we will have a lot of fun singing Old McDonald had a farm....

Mary Ellen

31 for 21

It's October and time for the 31 for 21 challenge again. This is where bloggers who sometimes write about Ds are encouraged to blog every day for the month of October, as a way of raising awareness about Ds and promoting inclusion. I'm off to a rough start as I missed posting last night but will try to pull up my socks for the rest of the month...

Yesterday Halifax's "Walk with Friends" event was postponed due to weather but it is rescheduled for next Saturday. The aim of the walk is to promote awareness of Ds and raise funds for the NSDSS's Maritime Ds Family Camp.

Stay tuned for more news about the boys in the month to come...

Mary Ellen

Terry Fox Run - Part 2

Thank you to everyone who supported us last weekend. We had a great day and everyone had fun. Malcolm had a special red "survivor" T=shirt to wear and he was the youngest person in a red shirt at the event. Jan's parents came out and cheered us on and we saw a few friends - one was a very special friend, a little boy who was down the hall from Malcolm the very first month Malcolm was in. This other little boy had just been diagnosed with the other kind of leukemia (ALL) and was also just starting his treatment. He has done really well and has not had to spend much time in hospital. He is now on the "maintenance"phase which is almost entirely at home and we sincerely hope he continues to do so well. Every time we go to the hospital we are reminded that while Malcolm's journey has ended there are others still walking down that path...kudos to all of you who either supported cancer research through us or do so in other ways...

In just five days we raised over $1,000! We thought that was great and hope to be a bit more organized next year so that we can raise even more. Donovan made our "Team Malcolm" sign and carried it until he found an interesting caterpillar to collect, which we ended up bringing home and nurturing for several days in a cup, until it made its great escape. I should mention that if you still want to donate it is certainly never too late - just click on the link in the previous post.

Mary Ellen

Terry Fox Run

Just a quick post to say that we have signed up for the Terry Fox Run this weekend. Click here to join our team or make a donation. The Terry Fox Run raises money for cancer research. This is the first time that we have participated in a fundraising walk as a family and we are looking forward to it.

We benefited firsthand from advances in cancer research. Children with Down syndrome are much more likely than typical kids to develop the type of leukemia (AML) that Malcolm had. In the past, kids like Malcolm were more likely to be killed from the treatment than cured by it as it was not widely recognized that children with Down syndrome have a unique sensitivity to certain chemotherapy drugs. Research has resulted in turning one of the worst prognoses into one of the best and research continues to try to replicate this result in typical children. Ongoing research may result in children like Malcolm, who have Down syndrome, benefiting typical kids who get this horrible disease. We encourage you to show your support.

Mary Ellen

Brothers

I have mentioned in other posts how great Donovan is with Malcolm. This continues to be the case. He and Malcolm have a great relationship and Malcolm loves spending time with him. That is not to say that they never get frustrated or upset at each other - but they always forgive and forget. They love to do really silly things and giggle together (sometimes to the great annoyance of their parents) and Malcolm's lack of language is no barrier whatsoever to the fun.

Donovan started school this week so it was a big change for the whole family. He seems to be doing really well. He is in a split grade one/primary (what they call kindergarten in Nova Scotia) of 17 kids. He has a male teacher who he seems to really like.

We had a great time in Ontario and the first two photos above were taken on vacation - both boys really liked seeing the dinosaurs at the ROM. They had a really great time playing with all their cousins and seeing everyone back home. We were thankful Dad made such a great recovery. Through all the hustle and bustle of the first week at school our hearts have been heavy this past week with the passing of my Aunt Pat. We will miss her.

Mary Ellen

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

Four month checkup

Malcolm's four month checkup was today and all of his bloodwork is fantastic. His platelets are a whopping 348, hemoglobin 146, white blood count 5.7 and ANC 1824. So all of his counts are well within the normal range. It is the first time since treatment ended that everything has been normal. His white count and ANC had been a bit low all winter. The doctor confirmed that Malcolm's disease would likely be visible by now if it was going to recur. So for all intents and purposes I think we can consider him cured of cancer!

It has been almost one year exactly since Malcolm's leukemia diagnosis began to unfold. It has been quite an experience and one that we would sooner forget than ever relive again. But it is nice to reflect that we live in an era where it is almost routine to cure diseases that would have been close to a death sentence even two decades ago. Hopefully progress will continue to be made in curing childhood diseases - one of the most difficult parts of being in hospital was seeing children who were so much worse off then Malcolm...

Malcolm continues to do really well at daycare. Last week when I went to pick him up one night he was participating with the other kids in the actions to "Row, Row, Row Your Boat". Sometimes he asks to see Donovan (by making his sign for Donovan) and if possible one of his teachers takes him for a little visit to Donovan's room (what great staff at the daycare!) His class goes on a lot of walks outside and will walk for several blocks. Malcolm walks until he gets tired - usually about 15 minutes - and then he can go into a stroller (the rest of the kids are expected to walk all the way!) I think this has been working well so far - my only concern is that he will get a bit lazy and not push himself - it is so much easier to ride in comfort in the stroller! But we will see how it goes.

His regular teacher is away this week but he is familiar with her substitute and had a good day today. He continues to do well with his signs though I have been remiss in not introducing any new ones this month - seemed like a lot for me to transition to work and for him to transition to daycare but we must resume moving forward in June. We are trying to get him to use more combinations of signs (for example, "want more cracker" instead of just "cracker") but Malcolm seems to feel that the one-sign method is more efficient and just as effective most of the time. Difficult to convince him otherwise!

Donovan is also doing well - he continues to enjoy swimming lessons and starts soccer next week. He has a school orientation session coming up in June. He continues to be Malcolm's biggest fan and rolemodel.

Mary Ellen

TMD Screening

TMD is estimated to occur in approximately 10% of newborns with Down syndrome and the mortality rate may be as high as 15 - 20%. In addition, 20-30% of individuals with TMD will go on to develop leukemia (AML) within the first four years of life. Early detection and treatment of this disease is important to promote a positive outcome.

Most people reading this blog know that we are the parents of a son with Down syndrome. Malcolm was diagnosed with TMD within hours of birth. Several weeks later he developed life-threatening complications from the TMD that, through timely and appropriate treatment, were successfully overcome. When he was 20 months old it was established that the disease was progressing to leukemia. He completed treatment for AML and continues to be disease-free. The physician attending his birth ordered a CBC because he had an unusual rash at birth. She mentioned that, were the rash absent, she likely would not have ordered the bloodwork. We subsequently found that whether or not a CBC is ordered for newborns with Down syndrome varies widely among primary health care providers, and that the majority of infants with TMD are asymptomatic at birth. We are concerned because we feel that his positive outcomes were due to early diagnosis of the disease, which ensured close monitoring by hematology/oncology specialists.

We are seeking to raise awareness of the importance of screening for TMD to promote positive outcomes in all children with Down syndrome who may have the disease. Below is text from a letter we have written to various Canadian organizations in hopes that they will assist in educating doctors about the disease in the importance of screening:

We are writing to urge you to consider an addition to the Health Care Guidelines for Individuals with eHealth Care Guidelines for Individuals withHDown Syndrome [1] in common use by physicians and pediatricians in Canada. We believe that the guidelines should clearly indicate that all newborns with a preliminary diagnosis of Down syndrome should be screened for evidence of Transient Myeloproliferative Disorder (TMD). It is important that physicians understand the importance of a complete blood count to screen for TMD.

TMD has, historically, been considered by the broader medical community to be a relatively benign disorder that usually resolves spontaneously. Although the Down Syndrome Medical Interest Group in 1999 recommended a hematocrit or complete blood count for all newborns with Down syndrome as a screening measure, it appears that this recommendation has not been well communicated to primary care physicians and the blood count does not appear to be routinely ordered in Canada. This is in spite of several recent peer reviewed articles and reviews in prominent medical journals that present strong evidence that TMD is not a benign disorder and that there would be benefit (and minimal cost) were all newborn children with Down syndrome screened.

It is estimated that TMD occurs in as many as 10% of newborns with Down syndrome [2]. There have been large studies in the United States, Japan and Europe that recently report that early death resulted in 15 to 20% of infants with TMD (not including stillbirths; [2,3]). Deaths are typically the result of cardiopulmonary, liver and/or hematological complications resulting from the TMD. The majority of newborns are asymptomatic [4] while others are symptomatic. Infants that develop severe symptoms may require an exchange transfusion or similar procedure, chemotherapy and/or supportive nursing care.

In addition to the risk of death due to TMD, it is estimated that 20-25% of infants with TMD will go on to develop acute megakaryoblastic leukemia (AMKL), a type of AML, within the first four years of life ([2,5,6]; 13-33% in ref. [4]). While therapies continue to improve, it is generally estimated that up to 20% of these children will not survive [3]. A positive prognostic factor is a young age (under two years old for AMKL specifically in [7]; under four for AML in general in [8]) at time of diagnosis.

There are, then, two strong reasons for screening for TMD. The first reason is to ensure that the TMD itself is carefully monitored, particularly given the lack of symptoms in most newborns, to watch for the development of severe symptoms that could lead to death in the first few months of life. The second reason is to monitor all children with TMD for progression to AMKL to ensure the onset of this disease is diagnosed as early as possible in order to promote the best possible outcome.

Both of these reasons are, to us, compelling and we are concerned that the medical community has not taken the appropriate steps to ensure that robust screening practices are in place. There has been much research into TMD, AMKL and the connection between these disorders over the past decade resulting in a greatly increased understanding among hematologists of both diseases. However, this understanding has not yet translated into changes in clinical practice to better identify those most at risk.

It is our sincere hope that you will champion and promote screening of infants with Down syndrome in Canada to your members and the broader medical community. We are confident that you will find that the recent medical science in relation to TMD supports screening more strongly than ever. Determining which infants have TMD is necessary to ensure the wellbeing of a vulnerable group of children.

References

[1] Cohen WI. Health Care Guidelines for individuals with Down Syndrome – 1999 revision. Down Syndrome Quarterly. 1999; 4:1-16.

[2] Hitzler JK. Acute Megakaryoblastic Leukemia in Down Syndrome. Pediatric Blood & Cancer. 2007; 49:1066-1069.

[3] Malinge S, Izraeli S and Crispino JD. Insights into the manifestations, outcomes, and mechanisms of leukemogenesis in Down syndrome. Blood. 2009; 113:2619-2628.

[4] Klusmann JH, Creutzig U, Zimmermann M, et al. Treatment and prognostic impact of transient leukemia in neonates with Down syndrome. Blood. 2008; 111:2991-2998.

[5] Hitzler JK and Zipursky A. Origins of Leukemia in Children with Down Syndrome. Nature Reviews – Cancer. 2005; 5:11-20.

[6] Xavier AC, Ge Y and Taub J. Unique clinical and biological features of leukemia in Down syndrome children. Expert Reviews. 2010; 3(2):175-186.

[7] Gamis AS. Acute myeloid leukemia and down syndrome evolution of modern therapy – state of the art review. Pediatric Blood & Cancer. 2005. 44: 13-20.

[8] Creutzig U, Reinhardt D, Diekamp S, Dworzak M, Stary J and Zimmermann M. AML patients with Down syndrome have a high cure rate with AML-BFM therapy with reduced dose intensity. Leukemia. 2005; 19: 1355-1360.

Additional references:

Dixon N, Kishnani PS and Zimmerman S. Clinical Manifestations of Hematologic and Oncologic Disorders in Patients with Down Syndrome. American Journal of Medical Genetics Part C Seminars in Medical Genetics. 2006; 142C: 149-157.

Massey GV. Transient Leukemia in Newborns with Down Syndrome. Pediatric Blood & Cancer. 2005; 44:29-32.

Massey GV, Zipursky A, Chang MN, et al. A prospective study of the natural history of transient leukemia (TL) in neonates with Down syndrome (DS): Children’s Oncology Group (COG) study POG-9481. Blood. 2006; 107:4606-4613.

Roy A, Roberts I, Norton A and Vyas P. Acute megakaryoblastic leukemia (AMKL) and transient myeloproliferative disorder (TMD) in Down syndrome: a multi-step model of myeloid leukaemogenesis. British Journal of Haematology. 2009; 147:3-12.

Back to work

I returned to work which means Malcolm has started daycare. He finished his second day today. He has had two fantastic days. He has been happy, active, eating and sleeping well - generally having a good time. This has been a big relief. I have had two great days at work as well so lots of excitement this week.

Malcolm had a speech therapy appointment last week. He is continuing to make good progress with his signing and comprehension but his verbal speech seems, to me, to be moving very slowly. There is a huge disparity among individuals with Down syndrome in terms of how well they are able to verbally communicate. We continue to be hopeful that Malcolm will develop a pretty good grasp of speech and are trying not to be discouraged in these early days. We have read that some children do not develop verbal speech until around age 4 but go on to be quite proficient. Certainly he is a joy to be around regardless of progress in this area. His speech therapist is very enthusiastic about supporting him in his daycare environment and will likely visit him there sometime in June.

We also went to the hospital for a visit to PT to have orthotics made for his new shoes - Malcolm's feet have finally grown and he now wears size 7. His balance is steadily improving and it is possible for him to go walking with us around the neighbourhood without needing his stroller. So good progress there.

April was a month full of appointments and we will have far fewer in May. It is nice to be able to focus on work and routine life again.

Mary Ellen

Happy Easter

One day while we were in Ontario we went with my parents to a sheep farm belonging to their friends. Donovan and Malcolm's cousin Lily came along. It was a wonderful visit as we all had fun petting and holding the lambs and our hosts had even saved some milk for the kids to feed to a few lambs. Malcolm loves animals and is seldom shy but tends to be very gentle. He had a great time looking at everything and touching the sheep. I was reminded of that visit today. We travelled to an outdoor zoo here in Nova Scotia that has some animals to feed and pet and Malcolm had a great time again.

Malcolm has been doing very well. He had his three month checkup on Friday at the hem/onc clinic and continues to do very well with absolutely no signs of disease. He weighs 26 pounds, three ounces and is 33.5 inches tall. He has grown over an inch since January and is about the same weight. He is turning into a sturdy, lean little boy. His signing is going well and he is learning new signs all the time. From time to time he says a word (such as "duck") and babbles more than he used to so we continue to be hopeful that verbal speech will develop. He visited his new OT last week and she is very impressed with his grip of markers which is age appropriate and developing well. She also thought he handled a spoon so well that we should introduce a fork.

I met with Malcolm's daycare teachers and it was a very positive meeting. We are looking forward to having Malcolm in daycare again where he can learn so much from his peers - it is such a wonderfully stimulating environment and the staff are really excellent. His teachers are keen to brush up on their sign language to make sure that Malcolm is fully included. He will go for a visit on his own on Friday morning and then he starts May 3 - my first day back to work. I am returning to work part time (3 days per week) and am relieved not to have to work full time for the foreseeable future. So May will be a month of many changes for our family but all of them good ones we think.

Malcolm and Donovan are pleased to have a new baby cousin, sister to Lily and Evalyn. The baby is so new we don't even know her name yet - what a great Easter present for everyone.

Donovan is looking forward to the Easter bunny's visit....
Mary Ellen