Visit

Today Malcolm's Early Interventionist from the Progress Centre visited. She helps by following Malcolm's developmental progress to provide advice on accessing services and helping to implement the recommendations of speech, physical and occupational therapists. She was delighted to see Malcolm walking and progressing in all areas. She noted that it is a very good sign the he initiates formal communication by using some signs, unprompted, to ask for things that he wants (eg milk, food, music). That was enouraging to hear. She will help Malcolm transition into daycare when he returns. She helped in that regard when he started daycare at a year old and was a very valuable resource for us. So it was nice to have a good visit with her today.

Mary Ellen

Malcolm had his echo and dressing change this morning. Both were uneventful. A child life specialist was present for both. This is very helpful as she carries a bag of toys and tricks to occupy and distract Malcolm while the nurses poke, prod and pull him in various ways.

Yesterday Malcolm's height and weight were taken. He is getting taller - over 31 inches. He weighs 11.05 kg (9 lbs, 5 oz). His weight has remained fairly stable for the past month so at least he is not losing weight. His appetite has not been huge the past couple of months which is common, and may also be due in part to his constant teething. Hopefully he continues to hold his own.

Malcolm did not sleep well last night (teething) but he had a big nap this afternoon. Hopefully tonight will be better. We have been enjoying the nice weather with a walk to the park each day. Malcolm is getting stronger and stronger and taking more and more independent steps.

Mary Ellen

Not ready

The start of round four has been delayed for a week. Malcolm had bloodwork done today and his ANC was 697 - it needs to be 1,000 to start the next round. This is not a huge surprise given that Malcolm's ANC was so low last week and given that he has yet to start a round on time! His hemoglobin and platelets were nice and high at 115 and 469.The dressing change was delayed until tomorrow. His echo (ultrasound of the heart) is also scheduled for tomorrow - bright and early at 8:15am. Malcolm's blood will be tested again next Monday and we now expect round four to start next Tuesday, October 19.

Mary Ellen

Awareness

October is Down syndrome awareness month. There is a button on the bottom right of this blog "31 for 21" where bloggers who write about Ds related topics can commit to posting a new entry on their blog every day in the month of October as a way to increase awareness. I found out about it today so have missed the first part of the month but will try to post something each day for the rest of the month. Click on the button to go to a list of participating bloggers. You may find it interesting to read about other families with a family member with Ds. If you do not know much about Ds and would like some basic information, visit the Canadian Down Syndrome Society at www.cdss.ca.

We were sad to say good-bye to Grandma Lee and Aunt Theresa today. Tomorrow Malcolm has an appointment for bloodwork and dressing change at the clinic. We expect round four will begin on Wednesday.

Mary Ellen

Happy Thanksgiving

We have been enjoying our Thanksgiving company. Malcolm's Grama and Grampa Rainey came over for Thanksgiving dinner as well. Donovan has enjoyed helping Grandma Lee do some baking and has had lots of fun with playdough and going to the park with Aunt Theresa (see photos above). Malcolm has been doing really well and is taking more and more steps every day. Sometimes he is not content to walk but tries to run and falls down. He never gets upset, just tries again or decides to crawl instead - a real joy to watch. Today he had lots of fun with his dad in the park going down the slide and swinging.

Happy Thanksgiving everyone,

Mary Ellen

Blip

We have been enjoying our time at home. This morning Malcolm had to go to the clinic for his dressing change, which went well. They also took bloodwork for a CBC and the results surprised us a bit. His hemoglobin and platelets were fairly high, as expected, at 95 and 416. However, his white cell count and ANC were low - his ANC was only 252! The doctor believes that this is a "blip" and should not persist. He is most definitely neutropenic so if he gets a fever we must rush him to hospital for IV antibiotics. However, he has been very healthy this past week so we hope and pray this continues over the long weekend!

We are very excited that Malcolm's Grandma Lee and [Great] Aunt Theresa are bringing his big brother Donovan home today from his visit to Ontario.

Mary Ellen

Surprise!!

We are home! We were discharged yesterday afternoon. Malcolm's ANC jumped to over 1700 on Wednesday and was still above 1600 yesterday so no need to keep us in any longer. It is very unexpected that his counts recovered so quickly, but not unheard of. The doctor was very surprised at this turn of events. His platelets skyrocketed to 426 on Wed and 586 yesterday and his hemglobin was also rising to 78 and then 80 yesterday. They won't begin treatment until at least 28 days after the start of the last treatment which means we have all of next week at home. We expect to begin the next treatment (round 4) after Thanksgiving on Wednesday October 13. This treatment was by far the easiest - Malcolm felt well throughout it and we got to come home much more than the previous two rounds so we have a lot to be thankful for.

Mary Ellen