Friday, September 24, 2010

another classroom visit

Rachel's first craft - yes, she came home with paint on
her arms and on her shirt.

It’s the end of our first week of new routine. It has been a good week, one filled with new friends and new memories - and lots of Smiles cookies from the local Tim Hortons (each cookie is more $ for Niagara Peninsula Children’s Centre through September 24).

Dad got a chance to see Rachel's preschool program -

he is a part of her routine on Thursdays.

We both attended a fitting session for a

stander to be used while in the program.

This will help with Rachel's weight-bearing physio.

Today, Rachel did not have her preschool program, but she did go to school. She visited the JK classroom at Beacon for the first time. She is a “special friend” to the JK class this year. We hope to visit frequently for several reasons - to better acquaint Rachel with the kids in the class, to determine if a regular mainstream classroom is the place for Rachel, and to connect the kids in our school community with Rachel.

Emily was so proud to push Rachel to the same school this morning!

The class knew we were coming, but when we walked in this morning, everyone was shy and stared -expected and normal. Yet there were two little friends who recognized Rachel right away. A and Z were born the same week as Rachel - first Rachel, then A and then Z.

Z came over to Rachel, said hi and asked if Rachel could do a puzzle with her. Rachel was thrilled with a friend. I watched the two interact, and I was almost a bit teary when I caught Z nonchalantly wiping Rachel’s drool with her bib. “Oh Rachel, you keep drooling” was all she said.

It was good to be with the kids in the classroom since I am not a part of the preschool program at NPCC. As hard as it was to see all these able-bodied, talking little people the same age as Rachel, it also prompted some good reflections.

I think school for Rachel is a combination of imitation and invention. She can sit like the other kids for circle and calendar time, and she can listen to the songs and stories. That’s the imitating part. But that’s as far as it goes.

From there, we have to be creative -inventive- in how we nurture and work with Rachel. At the centre, Rachel spends time in the Snoezelen room, swings on a single-access point swing, stands in a stander, and practices balance on a modified seat. She also receives sterile water flushes through her g-tube and has her diaper changed when necessary. Not so ordinary.

Being creative includes finding or inventing the right kind of tools that Rachel’s hand will use -without having to grip since she doesn’t hold anything in her hands.

Our attempt at finding crayons and
chalk that make marks if you push them.
Not perfect designs yet; we are still looking for better ideas.

Being creative also includes finding different surfaces and objects that Rachel would be willing to touch without getting overstimulated.

We try not to think too far ahead with Rachel for school. We are enjoying the positive experience NPCC’s preschool program has been - that’s as much as we know now.

On a side note, each week, the parents of the kids in the preschool program meet while the kids are in session. We had a chance to share our stories this week, particularly about our special children. Without breaking confidence, I can safely say that I appreciated hearing the stories shared. It is good to be in the company of those who understand the unique journey of raising a child without a known diagnosis.

For now, we move into the weekend. I did another diaper run today. I have to smile at some of the looks I get when I load up one or two carts at Shoppers Drug Mart with the diapers and wipes. But, we go through a lot of diapers and wipes, and I take advantage of any sales or points system possible. We've tried a lot of different brands and different stores, but we keep coming back to the same kind. I still find it strange with disposables because I was such a cloth diaper fanatic with the older two! But, given our large circle of care and my limited time, disposables work.

Hope you all have a good weekend. A special hi to cousin Annette who is leaving to work as an RT for 6 months in a hospital in Kenya. We love RTs - respiratory therapists.



Monday, September 20, 2010

first day!

Rachel leaving for preschool program (IPRP) this morning

So, today was the big morning for Rachel - her first session of organized preschool program. She had a great morning! Today, she started with circle time and play time, and half way through, we (the parents) met the kids for a session in the pool. The pool at the children's centre is quite warm and very accessible, so it is a lot of fun.

Rachel was so happy the whole time, making her crowing sounds at the other kids and me. I loved seeing her move her arms and legs in the water, and she was quite proud of herself when she put weight on her feet standing in the water. I also loved hearing her voice, for she has been much quieter this summer than normal.

In short, the morning was joy-filled. A wonderful opportunity for Rachel to grow and show us more of who she is.

Rachel by her cubby - can you see it, Oma?
It's the one with the pink sweater.

Rachel at the end of her morning. Truly tired.

Janneke loves to move in her walker. Each day, she shows off more moves. Now she is moving forwards, backwards, and sideways - all with a smile. The other day, I placed her in our living room, and before long, she had moved herself (about 3 metres) over to the computer where Emily was working.

I think what we love most is that she is slowly but intentionally moving to spots she wants to be. That shows her feet - and her mind - are working hard.

We continue to run with the three of us. We are looking forward to the race on November 6 for WorldWide Christian Schools, and we hope we see some of you there!

Yesterday I ran at the canal with Rachel and Janneke, and the warm weather mixed with the smell of the crisping leaves reminded me of training with Coach Zeitsma in highschool cross country. I loved those runs in the Dundas Valley- even if I didn't really listen to his advice at the time. I guess it took twenty years for me to take his coaching seriously.

So, what's inside the grey torpedo?...

Two very happy passengers that laugh, make sounds,
and kick their legs at the netting.

As for Em and Soph, we've taken a break from historical fiction. Now, before bed, we read Calvin and Hobbes. Uncle Dave, you'd be proud of their giggles and laughter. It probably isn't great parenting to share his antics with such impressionable minds, but Calvin is funny.

Have a good week.



Tuesday, September 14, 2010

stepping to music

After tomorrow, we will be half-way through September. Crazy.

Earlier this month, I took Rachel to Mac for a visit with paediatric neurology. They deduced she is complex but wonderfully pleasant. (!) The team encouraged us to be patient yet persistent with the weight-bearing, so we are moving forward with obtaining a Rachel-sized walker.

Last week, both Rachel and Janneke developed colds, and I was very discouraged. It was a difficult cold/flu season last year, so I was not excited about starting the business of suctioning, staying awake through the night, and traveling back and forth to the doctor. Yet, both girls braved the colds, and they are recovering without any intervention other than some good ole' Benadryl. I have yet to dust off the suctioning machines!

Instead of watching them lose the battle to sneezes, coughs, and tears, we are excited to see progress with both of them moving in the walker. It has been absolutely wonderful to watch Rachel kick a ball with her feet and move herself in front of the piano. It has been equally amazing to watch Janneke side-step her way through the living room, as if she is dancing to some Holy music. Very cool.

We love having something to celebrate.

There are many times when we are discouraged or overwhelmed - by the awkwardness good people seem to have around our younger girls, by the visits to the doc or the children's centre, and by the daily care and routine here at home. There are too many nights where a good sleep is hard to find.

But, these successes overshadow those moments. Holy gifts that outweigh our discouragement.

In the last few days, Janneke is showing signs of affection by putting her face right next to mine or laying her nose on my shoulder. This hugs my heart.

Janneke at a play therapy appointment.

Rachel's assessment with her preschool team have been so encouraging. She has been excited to play along with their games, and I am optimistic for next week's new step for her.

Today, three of the four had to visit the dentist. Thanks to the loving care of Marlene and big sisters Em and Soph, Rachel was able to have her teeth cleaned - without tears.

Em and Soph continue to enjoy their time at school, but they also jump right into play here at home. Recently, we "harvested" our garden, and we realized that we are not very good gardeners.

Yet, the muffins we made from our carrots tasted pretty good -it always helps to add chocolate chips. We are reading through the Canadian Girl series (chapter books); the girls have been learning about immigration, Chinese head tax (1880s), the Halifax explosion, and the underground railroad. Speaking of history, check out what I saw going through the Welland Canal the other day!

This year, Ralph is less than full-time at work, so he is able to help me manage the home front. We hope this year will not be as difficult as last year, but we do feel more prepared for the potential stress and hospitalizations. Sometimes, the difficulties are kept away from the blog, to protect our privacy, but we can say that last year's trials have taught us a few lessons for the future. Ultimately, we say it is by God's grace that we live each day. We are so thankful to Him for the strength and wisdom He provides.

This week, the dietician comes again to discuss the girls' growth and caloric intake, and on Monday, Rachel starts her preschool. We look forward to more surprises and steps to celebrate.



Wednesday, September 8, 2010

100 and 100 and more?...

So, I just noticed - this is the 100th post in our blog.

And maybe you noticed Rachel and Janneke and I have covered over 100 km in running for the Niagara Peninsula Children's Centre.

It's time for another race.

Consider joining our family on Saturday, November 6 in Hamilton, Ontario for the Road2Hope/Worldwide Christian Schools annual race. Our family hopes to run the 1k and the 5k, depending on weather and health. WWCS is an international, non-denominational organization that works with indigenous leaders to provide Christian education in developing countries. Register for this race here. Hope to see lots of familiar faces!

The first day of school for Em and Soph went well, and they returned willingly again this morning. : ) Once again, I set aside my thoughts of educating them at home and watch them create their own worlds apart from the busyness here. They need that space.

This week and next week, we have assessment times booked for Rachel as we prepare for her educational experience at NPCC. I am working on developing several different feeding schedules that will accommodate the routine Mon-Thurs, Fri-Sat, and then Sunday. I think that's three different routines. Crazy.

Rachel is playing dominoes with her sisters -this is intense.

Rachel and Janneke are relatively healthy despite the odd cough or extra congestion. Rachel still isn't completely herself since that trauma from June in the PCCU. Yet, we see her smile still, and we are optimistic being with other children will encourage more sounds and smiles.

Janneke continues to grow and develop her fine-motor skills. Last night, she was intentionally trying to put our fingers in her mouth. I think she's ready for tastes! I also was able to successfully replace her g-tube with a new one (we do this every three months) with little pain for her.

We had a great weekend with Ralph's niece Mel, her husband Nick, baby Lachlan and Ricky the Dog. Soph got over her fear of dogs and found a new best dog friend. Maybe a dog is in the picture for our family soon?



Thursday, September 2, 2010

Thursday night

Here comes September... We will miss camping at the Pinery this weekend. It has been a tradition to celebrate the last rays of summer at Lake Huron, but our current circumstance makes it too challenging this year. Instead we will celebrate at home and with family.

Our last few days:

So it seems Rachel has thrown us for a loop - again. Just when we thought we understood her growth issues (or lack thereof), she grew. In the last month.

After watching her observe Janneke in the walker this week, I decided to adjust the walker for Rachel. We tried out walkers with her before, but I wondered if Janneke's movement might inspire Rachel.

Sure enough, Rachel had a big smile - and then moved in the walker! New plan: Find a walker for Rachel. Any activity with her feet means her bones can get a bit stronger. Her feet are not pleasant from the perspective of the physiotherapist since they are obviously clubbed again (even after surgical intervention). Yet, if Rachel shows interest in moving around on her feet as they are, we want to encourage her.

Janneke loves being in the walker too. She was on the driveway in her walker the other night, trying to get her two feet in the basketball game against Dad. Note the dirty feet. I love those dirty feet.

Emily and Sophia and I had a chance to visit a tea parlour. We weren't exactly dressed for a fine tea, but they let us in. What a wonderful time together, listening their hopes and dreams - and giggles over handling such delicacies.

There is a great deal of poetry and fine sentiment in a chest of tea. R.W. Emerson

Enjoy your holiday weekend.



(Wait, I couldn't resist including: Never trust a man who, when left alone in a room with a tea cozy, doesn't try it on. B. Connolly)