Friday, April 20, 2012

Long time no see

Wow, I stumbled on this site today. I had sort of forgotten about it. It really sort of put things n perspective. My last post was the day before we received Owen's diagnosis.

It took me back, interesting to see what I was thinking at that time. Right before our lives changed forever. They broke the news; I was right, it was more then being born premature. However, I had no idea what was waiting for us. The Peanut had a microdeletion on the long arm of one of his 9th chromosomes. It was known as 9q34.3 (ummm what? My child has a number? It doesn't even have a name?). We were told he was the 124th diagnosis (not at this hospital, not in Ontario or even Canada. Ready for this?) in the WORLD. Little is known about it. He will not have children, he will be non-verbal, he will continue to have low tone, have global delays and life expectancy is similar to those diagnosed with Downs Syndrome. That's it, that's the information we got about our child's future. We could "Google it" for more information. We went from "don't worry he was premature and taking a while to catch up" to a life changing syndrome the doctors had never heard of.

It was clear we were not gong to get anymore information from the hospital. Google in its vast knowledge told us it was now known as Kleefstra Syndrome (since April 2010). There is a spectrum. A lot of scary medical concerns. Various specialists offices started calling. We had blood tests, ultrasounds, scans, EKG's, EEG's. We started Speech, Occupational and Physiotherapy therapy. We got a family support worker, a vision support worker, and an early interventionist. My head started to spin and in a moment of insanity I decided to go back to school to learn everything could to help my Peanut. In Jan 2011 I was a mom of 2, working full time, recovering from eye surgery, taking 2 college courses and attending a minimum of 4 appointments a week (some weeks more like 5-6).

By May I had finished my classes with a perfect 4.0 average. Matt had run in the election, we had gone on an amazing family vacation to Disney. Everythign was cruising along. Then Matt went back to working in the city (benefits are GOOD!). My support system at home was gone. He was out of the house by 7AM and gone until 6PM or later. The Princess' school drop offs and pick ups, and all the appointments were all my responsibility now. Something had to give. I took a leave of absence from school. Thankfully, I work for an amazing employer that understood and allowed me to cut my hours back to facilitate all this. I hit bottom and sought help from my doctor. It wasn't the first time I had suffered from depression. I knew the symptoms and it scared me.

It's been a struggle. Owen learned to crawl in July 2011 at nearly 2 years old. It was on my birthday, the best gift ever! He continues to amaze us with all he has accomplished. All these things they said he couldn't do. He speaks. Perhaps not as much as you would expect from a nearly 3 year old. But those of us who spend time with him understand. He has an amazing ability to parrot things we say. Mama and Dada have evolved to Mammy (thank you Dora) and Daddy and it makes me smile just to hear it. Non-verbal my ass!!

He was fitted for a wheelchair 2 weeks ago. It was really tough for me to admit he might need one. However, I understand that for a child with low tone, even when he learns to walk, it will be very taxing and a wheelchair is a good way to ensure he can still go where he wants to go when he wants to go there. He loves Elmo, Dora and Thomas. He is a great dancer and gives the best cuddles of anyone I know.

He has the most amazing big sister on the planet. The Princess has endless patience when it comes to the Peanut (but nothing else it seems!). She learned to read so she could read him stories and he loves to ask her to read to him "Ia, Gorie?" (Mia, Story?) She always knows what he wants or needs. She s so in tune with him. His face lights up when he sees her and she can calm him down in any situation. She can get him to do his therapy activities with much less coaxing then even his therapists can.

We currently have 7 doctors, 2 Speech Pathologists, 1 Communication Disorders Assistant, 1 Occupational Therapist, 2 Physiotherapists, a vision consultant, a behaviour management consultant, an early interventionist, a music therapist and a family support worker on our team. We are wait listed for 2 more programs. Most mornings we have to check the agenda to see where we are going. It's hard to remember everybody's name. There were more people at the Peanut's annual family support planning meeting then at our family Thanksgivng dinner!

What's next? Wheelchair training, a new walker, alternative communication training, sign language classes, swimming lessons and hopefully horseback riding. Where will we be in a year? Who knows, but we'll be doing it together and that's all that really matters!

Wednesday, November 3, 2010

The words speak for themselves

A wonderful momma I "met" online posted this on Facebook and reading it brought me to tears. It explains all the anguish I have been fighting with inside for months and months. Tomorrow is a scary day for me and this post was so perfectly timed. It was like a very caring slap in the face to get me out of my wallowing self pity hysterics. It opened my eyes and I am so very happy she posted it and that I took 2 minutes to sit and read it.

Welcome To Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Sunday, September 19, 2010


All we do is wait it seems. Mia waited for big school, Owen waited for the feeding clinic, Speech, Physio, Occupational Therapy, Enhanced Funding...Now he's been picked up by by everything but Speech and we're going to have to wait until my eye surgery recovery is completed. Argh, so frustrating.
O LOVES his enhanced staffing teacher so much. Looks at her like a dopey teenager in love. Puppy love for sure. I am so glad that he is happy at daycare. My baby is making crafts!!!!!
Mia is loving school a little less. She is anxious and I do not get that warm fuzzy feeling from her teacher or her school. I think she expected to learn to read and write on the first day and we both agree there is far too much playing going on each day. She learned more in a few days at "Kid's House" then she has in 2 weeks at school. It's early in the year and still a little chaotic, so I'll give them the benefit of the doubt, before I pass judgment on this Early Learning Program just yet.
She is excited to get a hair cut and new outfit for picture day. She has decided on a pink outfit for sure. Was their really any doubt?
Mia will not be having her ear tubes replaced at least not until the new year. That is a huge load off. Not sure our October could take much more in the way of doctors and hospitals. We have something booked every weekday but the 27th of October. INSANE!!!! Might have to hire a chauffeur to get us places. Can we hire a nanny and maid while we're at it?? ;)

Monday, June 21, 2010

The princess is 4!

Well the princess is 4 years old. I can't even contemplate where the time has gone. I do not need to help her wash her hands anymore, get her snacks, put her shoes on. She is so independent. I feel like a loser tagging along behind her just hoping she will need me for something. She is all registered for school. Dropped off the last forms today. They had to call and ask me to hand them in. I was dragging my feet. Not really on purpose....but now it's official, Princess will go to schol all day every day in just over 2 months. I know adults who can't handle that sort of schedule, but I won't go there.
Princess requested a castle birthday party about 10 months ago and mommy knocked it out of the park. *Pat pat*, if I do say so myself. I even cursed mother nature enough that despite a 90% chance of thunderstorms on her party day...she didn't dare put a cloud in the sky. Beautiful, hot, sunny day, 20 foot tall pink bouncing castle, cake to match, Belle made an appearance, friends dressed in costumes, it was fantastic. She deserved every second of it. She's been through so much with medical issues, being the best big sister ever, no party last year because she had surgery instead :(.
Next year we are going to Disney for her birthday so I know she is looking forward to that already. An even bigger castle for her birthday! That may be hard to top however...

Tuesday, June 1, 2010

Peanut to more!

The peanut is a peanut no more!!!! Sitting at 60th percentile across the board, he has surpassed his sister's height at this age. The Princess still holds one lb over him at 9 months, but we all know how tall she turned out to be, so there is hope for Little Man yet!!!! 21lbs 7 ozs 29" tall.

Still not meeting milestones so more referrals, more wait lists and more genetic testing. Everything but answers it seems.

Seeing OT once a month for myofacial release work. Wait listed for Speech and language, OT and PT through Grandview. Referred to the blind and low vision clinic and the feeding clinic. Also referred to Resources for Exceptional Children and Youth to see about Enhanced funding to attend child care.

Monday, March 22, 2010

Teething and Stuff

The Peanut is teething. I mean I think he's teething. He's had this white bump nearly since birth and only now, 6+ months later, does it seem to be bothering him. The Princess never seemed to have much of an issue teething. Red cheeks, slight temp, maybe irritable, but the Peanut seems to really be bothered. Eating a LOT more, then making himself sick. Drooling, sucking on his fingers, crying (and this kid NEVER cries). My poor little man. Maybe we can just curl up and cuddle all night. I am ok with that.

Tuesday, March 16, 2010

The tooth fairy

I blog I enjoy immensely is no more. This poor woman is so honest and forth coming. I felt a real connection with her and will miss reading her blog so much.

The Princess had a hard time going to sleep tonight. Usually it's easy. She asks to go to bed, by 7pm she is exhausted. Tonight hubby put her to bed and about 30 minutes later she came downstairs (this NEVER happens, once she's out, she's OUT). She stumbled on the bottom step and fell, which I am sure added to the exhaustion, led to the drama that unfolded.

She was sure the "monsters" were going to get into the room the same way the tooth fairy gets in. I promised her monsters weren't real and the doors were locked and she was safe. So she switched gears. Where does the tooth fairy live? What does she look like? How does she get the tooth from under the pillow without waking kids up? What does she do with the teeth? She was in a panic. (I should note that the Princess is terrified of characters. Santa Clause, Easter Bunny, costumed characters at the mall....makes our Disney trip in 2011 a little iffy.) She was beside herself and not listening to reason. So I mentioned we'd "google it" in the morning. My three-year old instantly brightens, says "the computer will tell us!" and goes to sleep. Problem solved, the internet saves the day!!!!