Tuesday, December 28, 2010

into winter


Even though the temperatures are supposed to rise by the end of the week, today felt like winter. Cold wind, sun shining through the clouds, and a skate outdoors. Thank you, Dennis and Kim, for the use of your backyard rink!

It was so fun to see the girls skate -and improve in their skating as the afternoon progressed. We are thankful for the nursing care that allows us to slip out and do different things that otherwise would be a lot of work.


Speaking of work, it did take some effort, but we packed all four kids in the van for a short ride to the gym at Beacon recently. We wanted to see if Janneke would move more in her walker - without all the door frames, walls, and furniture. Sure enough, she was doing laps in no time. And a nice surprise: Rachel showed interest in moving too! While R and J took time to step, Emily and Sophia also had fun playing in all the space with their dad.



This past weekend, we had both sides of the family over for Christmas. Because it is a challenge to pack up and go places, the fun comes here - to our house. We had the Pot family over on Christmas Eve and the DeJonge/Fluit family over on Christmas Day. Crazy, but fun. A special thanks to neighbours Trevor and Tracy for the use of their hockey nets and sticks for Christmas Day!

Rachel and Grandpa DeJonge


Nothing like a wild game of road hockey for the guys


Uncle Johan earned more than a Christmas dinner
by running the kiddos up and down the road.


Even though we set up the whole house for the Pot family, everyone camped out in the living room to swap stories, plan mischief (something about waffles at the Air Canada Centre?), and make more memories. Notice the blur at the bottom of the photo? That's Janneke, determined to still move around.


And what made the weekend extra special was that nephew Caleb was able to join in all the fun. We do not take for granted his health and good spirits!


We are so thankful for our families - getting together at Christmas time reminds us of that blessing. For some families, Christmas holds a bittersweet feeling because they are reminded of the absence of loved ones. Yet, we realize that Christ's birth is the Comfort, the moment when God reminds us that there will be day when good will forever conquer evil and the sting of death.

For the rest of the week, we look forward to making more memories with our kids before 2011 begins. Rachel and Janneke have been three days on, three days off, in terms of health and sleep. Nothing serious but we appreciate the good health when we have it!

Peace.
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Friday, December 24, 2010

Merry Christmas!

May you sense His peace at this time. Christ is the true Gift.


Here's a couple of recent shots. Janneke spent more time in the Snoezelen room at NPCC, and she loved the fiber-optic lights. I just wish she would spend more time snoozing at night. She hasn't been sleeping well again -teething?- but we find light soothes her, particularly the flickering from the TV. Crazy.




The girls opened gifts last night, and Rachel was very curious about it all. She had lots of help from her big sisters who found almost as much joy in opening a gift for their sisters as for themselves. Love that.




Oh, and a special note to Nurse Betty. Thanks for the socks! Hope you are feeling well!

Peace to all.

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Tuesday, December 21, 2010

a few reflections


It's been a bit since I last posted. We've dealt with some long nights, little sleep, and lots of colds. Both Rachel and Janneke are on antibiotics, and that seems to be helping them out. They are sleeping better at night -and so are we! Sleep is so important to keeping balanced and healthy perspective.

School is out for the holidays, and we are enjoying some time at home before the family gatherings begin.

Rachel is helping out Emily with Apples to Apples.

Janneke would rather stare at her hands or the stripes on her pants.

Janneke continues to move around our house in her Pacer. The downside to having her in the walker is that she is forever getting stuck or running into things.

"Mom, Janneke's going for the tree again!"
(She moves backwards -not forwards.)

Poor Sophia's boots! We figured out that
Janneke's been running them over too many times!

And of course, our door frames and trim - yikes!


I had a chance to meet with our paediatrician on Friday at Mac. He examined both Rachel and Janneke, and he was pleased with their progress. There are a number of minor concerns, and we hope to get re-aquainted with our ENT specialist soon to discuss Rachel's sleep apnea, but we are thankful that there is nothing of great concern at this time. I was thankful for Carolyn's help, and when Rhoda showed up with homemade spice cookies, Dr. Roy joined us for cookies and laughs before the official appointment started.

Janneke continues to visit NPCC for physio therapy. Here, at home, we follow up with similar activities. Janneke does not enjoy lifting her head, but we practice when we can.


"But, my head is so heavy, Mom."

"Okay, maybe I'll lift it for just a bit."

Well, it's a few days before Christmas, and I've just started the Christmas cards. Not sure how far I'll get before the 25th! We look forward to time with family here at our house, and we also look forward to more family memories before the routine of school begins again.

Peace.
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Thursday, December 9, 2010

sleep study update


In the bleak midwinter
Frosty wind made moan
Earth stood hard as iron
Water like a stone;
Snow had fallen, snow on snow
Snow on snow,
In the bleak midwinter,
Long ago.

C. Rossetti



This week, Rachel and I made a trip to SickKids in Toronto. SickKids is an architectural delight for all who enter the atrium. Yet, the whole place hosts a myriad of emotions. And a myriad of faces. So many people visit this place daily for all kinds of reasons. Obviously, each time we visit, we remember those distant days in the NICU with Janneke, reeling still from the shock of her unexpected presentation at birth. The building reminds us of some incredible highs and lows with our Janneke -and other babies we loved and prayed for.


And speaking of highs and lows, this is a photo of the elevators (the yellow boxes) in the atrium, the part that Emily and Sophia enjoy. I respect those who made the decisions to make a hospital adventurous to the children who visit. So much to see, one almost forgets the reality of the building and the necessity of its specialities.

We were there to see the sleep clinic team, as a follow up from Rachel's sleep study back in October. As we already suspected, Rachel does have moderate obstructed sleep apnea. What we need to understand is the cause of the OSA. A CPAP machine won't work for Rachel since she is an excessive drooler. The mask would only cause her to aspirate. So, next week, when we visit with the paediatrician at Mac, we have several things to figure out - more visits to ENT and a referral to the drool doctor at Bloorview's children's treatment center.

What I found interesting is that Rachel was very serious during the entire appointment. Normally, Rachel is full of smiles and wins hearts very quickly. I had this gut feeling that she knew she was in a hospital and wasn't happy. After our appointment, I grabbed a sandwich while she watched the fountain. I told her we were going home, and then she gave me a small smile.


Am I making this response up? I don't think so. I don't give her enough credit at times for what she may be understanding but can't say. Ever since our scare in the PCCU with the MRI back in June, I feel like she is aware of what can happen at a hospital.

In the meantime, Janneke continues to move around in her walker at home, getting stuck under the Christmas tree and lost in corners of the bedrooms. It is amazing how she can maneuver backwards!

Here is a photo of her in the Snoezelen room at the centre. She loved the experience, and she loves to explore new things with her hands - a definite step forward in developmental progress.


We move into another weekend tomorrow. We hope our friends and family in the London area have started digging out of Snowmageddon! I must admit, I love a good snowfall, but having two kids who don't play in the piles and who need shoveled walks makes me thankful for the "tropics" of Niagara.

Peace.

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Sunday, December 5, 2010

weekend reflections

I love to catch Janneke over by our painted window. She often looks at the colours, and I wonder if she tries to catch her face in the reflection.


She also spends time rocking back and forth, back and forth.



Rachel really enjoys seeing her friends in the JK class at Beacon. She loves to watch the kids play and hear them sing familiar songs like "The More We Get Together" and "The Days of the Week." One of the first to run and greet her is Zekijah. Z and all the other kids love to show Rachel what they are doing, and several of them almost argue over who can sit next to her, push her, etc. Maybe the novelty of Rachel's visits will wear off in time for the kids, but Rachel loves their love.


Yes, there are those rare moments when Rachel is not smiling as seen in this photo of bouncing on the therapy balls with Sophia. I am trying to teach her to push with her feet when we bounce, but she is not so sure of my plan!



On Friday night, Emily asked if she could bake cookies with Janneke. Janneke was quite serious the whole time, but she reached out her little fingers to touch the bits of dough and flour Emily gave her.


I love her determination here, as if she is studying Emily's actions before attempting her own.




So, Sinter Klaas has come and gone, and we start another week. Last night, we had time to add the decorations to our tree, and that is always fun because each ornament has a story or at least a smile. Several ornaments come from students and others are handmade by our kids. Each year, there are a few that break and have to be tossed, but we try to keep as many as we can. I love the time to reflect on how much has changed -and how faithful God has been to us over the years.

A couple of us were discussing tonight the early chapters of Joshua when God told the Israelites to set 12 standing stones. The stones were to serve as a visible reminder of His faithfulness in carrying His people through the Jordan.

Okay, so a handmade ornament of glitter, glue and macaroni isn't exactly like a huge standing stone, but I still love being reminded of His faithfulness when I look at our tree.


Peace.

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Thursday, December 2, 2010

All the leaves are brown...


Through bare trees
I can see all the rickety lean-tos
and sheds, and the outhouse
with the half-moon on the door,
once modestly covered in
summer's greenery.

Through bare trees
I can watch the hawk
perched on a distant branch,
black silhouetted wings
shaking feathers and snow,
and so can its prey.

Through bare trees
I can be winter's innocence,
unashamed needfulness,
the thin and reaching limbs
of a beggar, longing to touch
but the hem of the sun.
- Lisa Lindsey, Bare Trees

Who doesn't have a cough these days? It seems that there is a continuous cold in our home, traveling from one family member to the next. Janneke has been up a lot in the night again, and recently, Rachel has been bothered in the night too. Such is the season, I suppose.

December 1 finally brought a bit of snow though it did not stay on the ground. We look forward to the fun that this month brings, with extra visits from family and friends. In the meantime, Emily gives us house concerts with the piano - admittedly easier on the ears than the recorder from last year. Sophia is getting her reading practice by reading recipes. Two nights ago, we enjoyed a great apple crisp, thanks to the time she spent with our More-With-Less Cookbook.

Rachel and Janneke are also showing progress - in the area of technology. On separate occasions, both girls have had the chance to work with the computer at the children's centre. The occupational therapist and the speech language pathologist have a technique laid out for the girls -push the button and something happens on the screen (cause and effect). Rachel and Janneke caught on immediately and loved the experience!

This is a great step for them! From cause and effect, we hope we can move toward some type of communication device. For now, we will look for online interactive games and work with interactive play. The more we create experiences with cause and effect, the better they will understand interaction between people. With the speed of change in technology, I am sure there will be something they can use.

Janneke pushes the green button...


And Eensy Weensy Spider goes up the spout!


A home concert for the girls -and their Tiggers (thanks Mike's Miracles!)


And we look forward to seeing Sinter Klaas again this weekend!


Peace.

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Thursday, November 25, 2010

completed window art

Em and Soph finished.... with a little help from Aunt Rhoda and Uncle Johan. And those are sheep in the field - not soccer balls. In the lower part of the grass, there are images of different kids from around the world as well as someone in a wheelchair. Above the Nativity, there are three crosses, reflecting the whole Story. What we found kind of neat was that the skin colour of the people and the Nativity changes throughout the day, reflecting dark tones as well as light.

Have a good night. We're off to the clean the paintbrushes.

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Tuesday, November 23, 2010

Tuesday night

sweet sister love

It's about 9:30 at night, quiet time around here. Feed pumps are whirring, and the girls are resting. Both Janneke and Ralph have been unwell for the past several days. Admittedly, the weekend was not relaxing - not a lot of sleep, the coffee maker stopped working (!), and our plans for fun came undone.

Janneke started with a cold that quickly progressed to her eye (pink eye). She seems to be mending, but her cold and eye infection prevented us from traveling to SickKids in TO for a long-awaited appointment with geneticists. I know we don't plan to be sick, but the timing wasn't great. Now we may have to wait another 7 months for that particular appointment. In the meantime, there are other appointments slotted at both SickKids and Mac for the next couple of weeks.

Before Janneke's sniffles manifested into something greater, she had her hearing tested (again), and they deduced she has a mild hearing loss. Because she is so young, a hearing aid was not recommended yet. The hope is that her hearing may change (improve) over time. This happened with Rachel, so we will see if that is the same for Janneke in about six months.

One of our plans this weekend was to paint the sliding door window for Christmas. I was very proud of Emily and Sophia, as they did most of the work. I was unable to help because Janneke required extra attention, but I did have have time to snap a few photos of the work in progress. Completed design photos yet to come...




If you are curious, it's tempera powder paint mixed with dish soap. You design your picture on paper, tape it to the outside of your window and then paint the inside. When you are tired of your design, simply wash your windows. When I was young, we would do this to our front window in December. Aunt Alida, do you remember the patterns you used to send us?

So, now in the quiet, I can finish the laundry, unpack the dishwasher, send off a few emails, make formula, and clean up from the day. We've got the Benadryl, Advil, and Pedialyte on hand, and I hope their bowels rest through the night.

Couple of random thoughts:

Check out this link - some brave souls and a few familiar faces spreading contagious holiday cheer in Welland. Wouldn't you like to be surprised by a flash mob?

Consider a unique gift for Christmas -your blood. The more I hear about my nephew Caleb's journey with zucchinia (his word for leukemia) and the transfusions he requires from time to time, I think that blood is a greater gift to give than chocolates or fruitcake.

And I was sorting through some old photos from Christmases past. This photo makes me smile and feel a bit sad. Rachel now wears the outfit that Emily is pictured in. The distance between normal and abnormal development becomes more obvious the older Rachel gets.


This photo just make me laugh and laugh. How hard I tried to get a decent holiday photo in 2006! Poor Rachel. She was being smothered with love.


Okay, this syringe is calling my name. Time to make formula for the next day.


Peace.

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