Appointments

Malcolm continues to do well. His platelets were 78 and hemoglobin still 88. His ANC was 208 so not much change in anything since yesterday. We are not sure why they want to do a CBC every single day but we are back to unpleasant finger pokes first thing every morning. His fingers are starting to get pretty scarred again.

Malcolm is getting lots of support on the developmental side this month as we begin the transition to permanent outpatient status. His speech therapist dropped by to see him briefly last week and she will give him a full assessment sometime in the next couple of weeks. She has been very proactive in providing advice and strategies to encourage his communication. We will really miss her - she only does inpatients so in January we will transition to someone else.

We had a session with Malcolm's occupational therapist today and she does not have any concerns with his development, although the visit was somewhat of a disappointment. We had not seen her for over six months and I was expecting a more in-depth assessment than she gave and some new advice and suggestions on what to be working on and what to be emphasizing in his play but she really had very little to say. We will continue to be followed by her every couple of months so hopefully next time is a bit more productive or I may stop taking him for a while. In the past she has been more helpful so not sure what was going on today.

We are seeing his physiotherapist on Wednesday for a full assessment and it will be the last time we see her as she only sees inpatients. We will also really miss her as she has been so great with wonderful advice and encouragement. I expect Malcolm will be followed by physio every few months until he has mastered things like running, climbing stairs (on his feet) and riding a tricycle.

We also saw Malcolm's early interventionist last week and she is very pleased with his continued progress despite his illness and treatment. She will help to co-ordinate some of the appointments once he is outpatient again and make sure he is seeing everyone he should be seeing.

So there has been lots happening on that front. Malcolm also has his routine six month eye checkup tomorrow. People with Ds are at increased risk of developing a number of different eye disorders and diseases so they are regularly screened from six months of age onwards. We have no concerns with his eyesight so are not expecting anything to be found tomorrow.

It is nice to get as many appointments as possible out of the way while we are inpatient so that we don't have to come here too much in January. Malcolm continues to be happy energetic and, unfortunately, has discovered that he can push open doors to patient rooms even if they are closed so we must watch him very carefully when he walks down the hall now. Not everyone is happy to have a smiling, drooling, armwaving, noisy two year old burst into their room unexpectedly...

Mary Ellen