Tuesday, February 23, 2010

tuesday musings

Ironic that I named our last post "the fever" because shortly after publishing the post, our family caught "the flu" - the stomach flu, that is. I suppose there are worse times to be sick. With the Olympics on either TV or online, read-aloud chapters of Ramona, and lots of back issues of Chickadee (kids' magazine) our family could be distracted from the flu without too much effort. It's one thing when the kids are sick, it's another when Mom and Dad are feeling queasy too. Thankfully, tonight, things look good, and toast with honey is now boring instead of filling.

I was reminded this week of the "smallness" of the city of St. Catharines. Yesterday, the cashier at our grocery store priced my ginger ale and then offered to provide daycare for our two youngest if we needed the help. I don't even know her first name! A wonderful 60 yr old woman at the Y always catches me in the locker room to offer words of encouragement and asks about the girls. I don't know her name either. At our local pharmacy, I happened to walk past the pharmacist in the cough and cold aisle, helping another customer. He caught my eye and simply said, "Rachel's stuff is behind the counter." I hadn't said my name or the reason for visiting the store. I pushed my shopping cart behind the pharmacy counter and loaded up the cases of formula while casually chatting with the pharmacy team. They asked about Rachel's surgery and Janneke's health.

I guess that's something we're pretty thankful for - our community.

Today I registered Rachel at a local school, one of several options we are considering for this coming fall. We have a meeting in late March to review Rachel's needs and required services for school, and we are preparing three possible ideas for September. Now I am working on an All About Me book to help staff (at any of the placements) understand Rachel. I have to smirk but also grieve a bit at the questions on how Rachel plays with others and handles transitions. She is a kid who loves to lay in bed, listening to Robert Munsch scream out his stories on cd. She loves to watch other kids play, but because she is so incredibly content, I fear she could become part of the furniture in a classroom. She will not complain if she is forgotten. That's the sad part. I am not so sad about the fact that she can't run, walk, hold things, eat, or communicate like her peers. I know she is like a baby in a four yr. old body. The part that makes me sad or afraid is her incredible sense of contentment, and the possibility she won't be challenged in her placement. I guess this is where we have to trust. I know I can't give her everything she needs here at home; I have to expand our circle of care to include a school placement and more little people her age.

I hope we do fully recover from this flu soon. I look forward to our respite help returning; when there is a virus in the home, the nurses and respite workers don't come, so they can stay healthy for their families and other clients. Rachel was the hardest hit with the flu, and that is also hard on our hearts. Too often, the professionals use the term "medically fragile" with our girls, and when they are sick, the words seem to be ringing in my ears.

But, speaking of ears, Janneke finally passed her hearing tests with flying colours. Yay -normal results!

Tonight, Emily and Sophia told me they could not go to bed until after the power play. Yes, they were watching hockey with their dad, and I think they are becoming healthy again. We get a kick out of all the questions they ask about the different Olympic sports, the pride they have with the medal count for Canada and the USA, and the rapt attention they give things like the men's cross country ski race.

Here's hoping tomorrow is normal, with less laundry.

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Wednesday, February 17, 2010

the fever

So, we've been suffering from Olympic fever here. We all watched the opening ceremonies (until sleep took over), and we celebrated with the rest of Canada when Alex Bilodeaux won the first gold medal for Canada -on Canadian soil. Our oldest two took interest in the story the media presented, highlighting the relationship Alex has with his oldest brother Frederic who has CP. Personally, I found the images of Frederic Bilodeaux powerful, invoking much emotion.



Emily and Sophia are now trying to figure out what our family can do as a sport since Alex chose to ski because that was something he could do with his brother. Right now, the girls think we can do gymnastics together since Rachel has mastered the splits with her legs. I don't want to break their hearts by telling them I have a horrible cartwheel.

It was encouraging to see all the positive press on this family. It reminded both Ralph and I that determination is a huge factor in getting our family out together to do things. We mustn't let the medical issues prevent us from having fun with all six of us.

Janneke succeeded in her first rollover last week. She did it with our OT (occupational therapist), but I have yet to see her roll with me during our daily stretch sessions. Rachel was the same way - rolling once or twice with the OT or her big sister but never with Mom!

Rachel had another visit to McMaster Hospital today. Apparently there was an oversight with her portacath insertion, and we had to sort through phonecalls and paperwork to determine who was actually responsible for the care of the portacath. We were blessed with another great RN who took our case over after several phonecalls and a big headache. Rachel should have stayed in the hospital after her surgery, and she should have received care for her port before we took her home. Today, we received the necessary instructions and orders for supplies, and she had her first access of the port. (This means the staff checked her portacath and flushed it to determine it was in good shape-that nothing was blocking the line.)

We are still on call for Rachel's MRI, and she will have growth/development testing at Mac mid-March (using the portacath). It will be during the week-long break from school, so both Ralph and I can be there. At that point, the whole family will donate some DNA and send it to Montreal via Sick Kids genetics for further investigation of our family's genetic makeup.

In the meantime, Ralph and I have a test ahead - of our patience and possibly our relationship. A wonderful family donated a Pedicraft bed (hospital-style with hyrdraulics), and we get to put it together. The good news is, I found the instructions. The bad news is, well, see the photo - lots of pieces. We'll post something next year when we finally get it together. : )

the test...





The girls were having fun with iPhoto again...



Friday, February 5, 2010

i spy a surgery: 2

We are now home from our day at Mac. Surgery went well, all things considered. It was delayed by two hours, but Rachel was a trooper. Considering that she had an empty stomach, she was quite cheerful. Thanks, Grandpa, for spending some time with us this morning. It was nice to have the company. (Rachel says he makes nice bird sounds too.)

While we were at Mac, Janneke apparently sat on her own for 9 minutes with the nurse today!

Now Rachel has the portacath, and we will be watching her incision closely this week as it heals. Hopefully all her drool won't infect the site. We are thankful for the nursing care we receive in the home on a regular basis. This makes coming home less stressful.

We realized that we are spending a fair bit of time at Mac over the last few years since staff walking through the hallways are familiar to us, and we can have candid conversations with them. As well as the familiarity in the hallways, the orderly who brought Rachel into the OR has been the same guy for all her surgeries. The particular surgeon we had today has also worked on Janneke.

I had a chance to chat with a dad who was sitting with his little son in recovery. We swapped stories of g-tubes, developmental delays, and the shared sense of blessing with our kids. It's as though we both feel normal when we can talk so easily about these things.

We are thankful for the prayers offered today. We ask for continued prayer as Rachel recovers. Her reaction to pain is often delayed, so we don't know what the night holds. We are grateful for the medicine and knowledge but more importantly, the peace God provides when we worry.

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Janneke is quite proud!



Rachel in preop with Dad.



Rachel in recovery with Mom.



Home again with her eye spy quilt and new puppy from Ashley.

Thursday, February 4, 2010

i spy a surgery : I

Rachel is scheduled for surgery tomorrow at noon. It is referred to as a portacath insertion; a routine procedure but not a routine kid. We appreciate your prayers for her.

We had the necessary pre-op discussions at Mac yesterday. We were scheduled for the afternoon which translates into a very long wait. Thankfully, Aunt Rhoda has a bird program that plays the tweets and whistles of familiar North American birds on her iPod... yes, that was quite exciting for Rachel!

Janneke continues to smile her half-smile, and, after a significant amount of stretching, she is quite proud of herself when she can sit. Emily is enjoying her new room - thanks Uncle Harvey and Mr. Jim - and Sophia has mastered the backwards bridge (gymnastic move). : )

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p.s. Thanks for supper, Shannon.

Here are two photos of the girls enjoying Aunt Jean's present - an eye-spy quilt.