Adoption Trips

Another very busy 3 years has passed at our house. After reading the blogs of some other families I realised I am not the only laggard out there.

B finished Jk and Sk and grade 1 French Immersion at our local neighbourhood school. In a few weeks he starts Grade 2 again in French Immersion. Language does not seem to be a problem for him. His reserved nature is his biggest hurdle. Too afraid of failing to share what he knows. Like father like son I guess ☺ NOT.

C has finished Jk at the same school and in a few weeks returns for Sk half days. Our school was not chosen for all day kindergarten.

Personality wise they are polar opposites but for the most part because they compliment they are very close siblings. B is logical and loves to build, discover and create. He hates writing and art. C is artful loving to paint, draw, play music and write although she likes to hide what she knows so she won't be called upon.

B continues to play soccer, learn to swim (just passed his swimmer 2 levels), and a year after my, last post started to play hockey. This year he will play on two teams. 1 at the house league level and 1 at the select level.

C joined soccer last year and continued this year. She really seems to enjoy being social. Not sure which she likes more, the sport or the people. She also joined gymnastics, figure skating and swims passing her swimmer 1 levels this week.

In Aug 2008 after driving 1 hour round trip to the babysitter 3 times a day we decided to opt for home care for the kids and hired a care giver. In October 2008 V was given notice by her financial services employer and in November she began looking for work. Not wanting to break our employment promise to our caregiver we spent V's severance and EI benefits to keep the caregiver. Almost 2 years later the benefits are over, there is no job and in 2 weeks the caregiver will start collecting her EI benefits. Blame it on the greed of Manhattan and on the greed of us mutual fund holders who demand double digit returns each year.

November of last year, two weeks after she and her mother received their H1N1 vaccines, C got sick. Fever and rashes. The GP though it would pass. It did not. So he gave antibiotics. No help. Hospital said let it run its course the antibiotics will kill it. They did not. Finally after over two weeks of fever, rash and then aching hip our GP looked at us and said "I am very concerned. I do not know what is wrong. Take her to emergency at SickKids Hospital.

After 6 days in hospital C was released with a diagnosis of juvenile systemic arthritis and came under the treatment of the Rheumatology team at SickKids. At first she was on a regimen of liquefied acid reducers to counteract the side effects of the stronger than normal Non Steroidal Anti-inflammatory Drug (indomethicin).

The regimen did not fully work. The fevers persisted into early January but the rash and joint pain were gone.

In early January the doctors switched from NSAID to Steroids at low does (1/3 of the maximum for he size). The fevers stopped, we were almost off the steroids and we thought we were out of the woods when bam she had a relapse on March 1st and was in SickKids emergency March 2nd (coincidentally her birthday) with an inflammation in the sac around her heart.

The Steroid dose was set back to 1/3 max (no help) and then up to max for her size. 28mg a day. By St. Patrick's Day the attack was under control, the fevers and inflammation gone.

Since Mar 17th we have been visiting sick kids every other week on average for exams and blood analysis and gradually the doctors have reduced her dosage to 10mg a day. If all goes well she should be off steroids in another 8 weeks.

The visible side effects of the Steroids are a bloated abdomen and chip monk like jowls and about a 20% weigh gain. She was small before this and now she is still on the small size for her age but most of the weight is in her middle. Comparing pictures of before and after she is almost unrecognisable. She is very aware of her body image, probably from her school friends, thinking she is fat. This is rather troubling because a) she is so aware of fat and thin and b) she has it in her head that if she makes her self sick to her stomach she won't get fat. Daddy frankly told her throwing up will not make you thin it will only make you sick. I told her that two weeks ago when I heard her ideas on staying thin. Since then she has been allowed to stop eating when she says she is full and the rushed visits to the bathroom have ended.

Long term the doctors don't believe she will ever go into a long term remission. They have been touting biological modification drugs that are protein shots that turn of the auto immune responses the result in her body attacking itself. Daily injections like insulin for the rest of her life at an annual cost of $20,000 not covered by our vaulted health care program. Luckily my private plan at work covers the drug if we have to go there.

We continue to hope she will be a lucky girl and the disease will go away and hide for a long time as it does in 3 or 4 sufferers.

The projects from my last post are mostly done except finishing the basement. At the moment that project is being weighed against a real estate purchase for investment purposes in the sunshine state.

Tune in 3 years from now for the next episode.