Eight and Counting...

Can you believe it? It has been 8 years or roughly 2,920 days since Ethan came into this world! Who would have known how much life would have changed for us in those years? Who knew how busy things could be; how much concern, pain, joy and love we would feel; how much we would learn; kindness we would experience; how strong we would grow as a family; how many surgeries and procedures we would go through with him; how many hospital admissions; how much sleep we would miss out on; the joys of a good night's rest or a runny nose that did not turn into anything more; the challenges around discrimination which we have found to be alive and well in 2015; the amount of ignorance, cruelty and hate that abounds...thankfully although these last few negatives have touched our lives, we remain a happy and strong family unit. For all the negative people out there, those that are not far outweigh these experiences. They are not the focus of this post but I do feel they bear mentioning.

There have been many positives in Ethan's year that are far more deserving of attention. This has been the second year that Ethan has been going to school. Last year he was only able to attend about 32 days of the whole school year, but this year he has attended 24 days prior to the holidays and in early January started with a home instructor so has continued with schooling about four days a week. This year we have been lucky enough to have: a very special Personal Support Worker (who has been working with Ethan for about 2 years during the day) be his dedicated support; his weekend support worker (who has been with us for a long time) continue to encourage and push him to achieve more and be a great support for our family; an amazing home instructor who can see his strengths and is pushing him to achieve his school goals; a wonderful new support person has also started working with him; great OT, PT and nursing supports as well as the addition of a Speech Therapist. Despite that he sometimes tests his boundaries, he really enjoys working with each of them and smiles when he sees them. This year saw a few more firsts for Ethan, he went to the movie theater to watch a movie as part of a birthday party (he was at Lorelei's previous birthday party but couldn't really participate, but a movie just about anyone can participate in) and went to the beach for the first time. Another awesome thing that happened for Ethan this year is through the generous support of some people/organizations in our life, we were finally able to get Ethan's specialized hospital bed. This is just too awesome to mention in passing so I will be doing a post on this alone.

From left: celebrating his 7th birthday, post surgery, recovering from surgery, in his new bed, at the beach and today.

Last year it was a rough start with us celebrating his birthday in hospital as he recovered from Influenza A, RSV in March, two surgeries in July for a spinal rod revision followed by a two week stay (after only being discharged two days prior) due to a significant wound infection which required IV antibiotics or 4 I.V.s before he had his 20th surgery to get a port-au-cath, a total of 6 weeks of IV antibiotics (four of those weeks at home with us learning how to change the bags, flush a port and work an IV pump) and another hospital admission in December for a respiratory illness but he has come a long way since all of this! He has gained weight and become stronger. He has been spending time in his standing frame and was recently refitted for his walker (which went better then I anticipated). Among other things, he is reliably able to 'count' from 1-10 and 10-1; recognizes digits from 10-20; knows how to spell his name, knows shapes; knows the letters of the alphabet; can sort colours, is enjoying the learning process and is relearning his communication device (which was recently updated).

Surprisingly with all his admissions, 2015 was the first time we celebrated Christmas (and his birthday) in hospital. Staff made sure his birthday did not go unnoticed making him feel special by singing Happy Birthday and giving him a card and a kind gift. At Christmas time, staff, families and local organizations make it a magical time for children with a Christmas dinner, gifts and holiday cheer. True to Ethan style, he was discharged the same day and we were home in time to enjoy a McDonald's supper.

Simply put, he is amazing! But I might be a little bias on that...

Happy birthday Ethan, we look forward to all the wonderful things this year will bring! Stay strong, stay happy, stay healthy!

Lots of love little man!