Monday, May 31, 2010

We simply ask for continued prayers for Rachel. She is in the PCCU at Mac, intubated and sedated. She has been there since Thursday, and she continues to be stable. There has not been much progress, but we remain hopeful she will heal and recover. We continue to have questions about her condition and why such a sudden change from the happy little girl we last saw Thursday morning before her MRI.

Saturday, May 29, 2010

It seems that Rachel has taken a small step...sideways. She is still sedated and intubated in PCCU at Mac. The staff are examining her lungs and heart; they would like to run a few more tests in the next day or two. She is relying on oxygen more so today than yesterday, so the staff are being cautious with any progress. She opened her eyes enough today to see Grandpa who came for a visit and prayer - thanks, Dad. Please pray for her strength and healing. We have a lot of questions regarding her condition, but it seems that she needs more time to rest first.


Friday, May 28, 2010

An update:

Rachel is doing well. She is still in the PCCU at McMaster. Last night was not easy for her, but she rested better today. She was able to have her MRI late this afternoon, and we are confident she will be extubated (breathing tube out) tomorrow. It depends on tonight. Ralph left a sleeping Rachel this evening, so we are hoping for a good night!

Janneke has been missing Rachel - we all miss her. But, Rachel's absence seemed to have prompted Janneke to an extreme measure, as in coming along to Mac today. Let me explain.

As I was packing to leave for the hospital this morning, Giovanna (caregiver) called me into the girls' room. Apparently, as Janneke was getting changed, her peg g-tube fell out. Peg G-tubes aren't supposed to fall out; they are secured in the stomach by a disc. But... the stomach acid can "eat" away at the disc, softening it so much that there is nothing to secure the tube into the stomach.

I stared at Janneke's torso, now with a small hole and no tube. Giovanna and I searched for some type of replacement piece to keep the hole open. A hole in the stomach can close up quickly, and I was not interested in another medical emergency.

I had to laugh. What else could I do?

This is what I find interesting: Five minutes later, Bernice (Ella's mom) walked in the door with a coffee for my ride to Mac. She happened to stop by. She and I had dealt with this same situation - but with Ella a couple of months ago. Now she could help me.

It was a MacGyver moment - a urine catheter, a locking clip from a portacath extension, an extension from an old feeding set, and a secure bandage. Voila - a makeshift feeding tube that would keep the hole open and allow us to hydrate Janneke until we got to Mac.

Ralph had to leave work, and we made the trip to Hamilton as a family. Emily and Sophia got to spend the day with Aunt Rhoda, working on the farm in Flamborough, Ralph went to the PCCU for Rachel, and I took Janneke to the clinic on the main floor to get a new g-tube.

As this day closes, I'd have to say we're doing alright. Janneke is feeling well; she is more settled now than she has been in a long time. Rachel is sleeping and under good care in the PCCU. Sophia and Emily had a great day collecting eggs, watering the plants, seeing the Highland cattle ("Their heads are the size of three chickens, Mom!"), and visiting Aunt Jess for supper.

Ralph and I look forward to normal concerns like mosquito bites and sunburns. In the meantime, I will return to see Rachel tomorrow, Ralph and the girls will be at the Rankin Run, and we remain optimistic that Rachel will return home soon.

Looking forward to an ordinary day....


Thursday, May 27, 2010

I guess we've another hill to climb.

I took Rachel this morning to Mac for her MRI. During our conversation with the staff about sedating Rachel, they decided Rachel should be admitted following her procedure. The staff felt it best that Rachel be monitored in hospital as she recovered from general anesthetic. They encouraged me to go home and get things sorted out, so I could return and spend the night with Rachel in 3C - where Janneke was last month. Manageable.

I was able to figure out care for the three other girls, and cancel other plans, so I returned to Mac at noon.

That's when we started climbing a hill.

While I was gone, Rachel's sedation plan did not go well. She had bronchial spasms, and here is the short version: She is now in PCCU at Mac (kids' ICU), heavily medicated. It was tough to come into the room and watch people working on Rachel, trying to sedate her and help her. It was tough to accept that an ordinary procedure didn't go in an ordinary way. It was tough to know she was in distress, and I wasn't there. It was tough to come home without her (since parents don't sleep over in PCCU) and explain to her big sisters that Rachel might be in the hospital for a few days.

Rachel will miss the Rankin Run, but we are confident she will be back home soon. We would appreciate prayers for her, that the swelling will go down in her throat, that she will be able to breathe on her own sooner than later - and that we can be home again together as a family.


Wednesday, May 26, 2010

Isn't Track and Field Day great? Oh, yeah - we did run and jump a little too.

Another week has come and gone. Funny how fast time passes sometimes. Right now, we are in a heat wave here in Niagara - July weather in the month of May. Freezies, popsicles, syringe wars (our version of water guns), and jumping on the trampoline with the sprinkler underneath all help pass the hot days.

Both Rachel and Janneke have been fighting a nasty cold virus. Janneke's virus seems to have moved into an infection, so we started antibiotics yesterday. Here's hoping for more sleep! Rachel is feeling better, so we put some more kms on the stroller in the last few days.

She was not happy about the sun hat, but she did like the geese.

Our first race is Saturday - the Rankin Cancer Run. It's a great event, one which raises money for cancer support and treatment specifically in Niagara.

When Rachel and I are running, it is a good time to think. It is not safe to wear a headset or ear buds while pushing a stroller, and I would miss out on all of Rachel's yells, cheers, and babble - that's real music.

The thinking time is good. Running is a spiritual experience for me - the hills in the course help me visualize the hills in my life. I often think about others with their struggles too. It can be a good time to pray.

This week, as we get ready for Saturday, my thoughts drift to the Vandendool family whose son Mike fought the cancer battle. Mike left his earthly home in April 2008; he was only twelve years old.

And there are others, people close to us who are dealing with physical issues such as knee troubles and other limitations, and those who are dealing with emotional issues that surpass our understanding.

We all have a journey.

So, when I am approaching that killer hill for Locks 4, 5, and 6 on the canal parkway, I think one step at a time. Really. Keep the stroller close, don't give up, don't stop, and take it one step, one step, one step....

And I then ask for patience and His strength to keep going and that the same patience and strength will cover those who come to mind.

I am thankful that Rachel and I are supported by her big sisters who want to run their own races in due time. Ralph is a great coach, guiding me on good training tips and keeping the racing stroller in good shape. Sometimes, Janneke comes along for a training run, but we won't race the two of them until we have a safe stroller option for two together since our racing stroller only fits one. (We have old green carriage that can carry two, but it is not safe for a race. It has carried grown men for an afternoon of dirt bike jumping while camping with Redeemer friends, so you know it has seen better days, right, Cory?)

This week: Rankin Run. Next race: June 8 - Ancaster Old Mill Run. That race is a very special one to me since my mom ran it several times in the past, and even when she was one of the last ones to finish, she proudly finished. She fought cancer too -and in the month we celebrated her remission (June 1997), she was taken from this earth in a car accident. Those Ancaster hills carry both grief and joy for me.

And joy came yesterday in the form of a funny behaviour from Rachel. On her walk with Michelle, she reached up her arm, grabbed her sun hat, pulled it off her head and dropped in on the sidewalk. That is a big deal. She is tactile sensitive, so grabbing something is HUGE, and that she was so deliberate to remove her hat brings JOY.

Tomorrow is Rachel's MRI, a long-awaited test that may or may not have some clues to understanding both girls. Janneke finished her hormone testing two weeks ago, but we will not learn those results until the third week of June.

One step forward, here we come.

For these feet....

Sunday, May 9, 2010

walking on air

(The date should reflect Tuesday, May 11, 2010.)

Again, much thanks for all the bibs. We are very grateful. We know some of you are still working on some, and others are making more. We can't have too many; we will need bibs for a long time! I am still sending out patterns to some of you via snail mail.

Yesterday, Janneke was at Mac for her endocrin testing (hormone levels, etc.). I am not sure which was more challenging that morning - watching Janneke deal with some pain and waiting to see if she would seize (part of the test), or visiting with the mom from the next bed. She was there with her teenaged son whose needs were numerous.

The mom and I had a pretty frank discussion. We talked about the overwhelming feelings of raising kids with significant developmental/physical delay. I kept thinking about how Ralph and I would manage with our kids in their teens. People remind us to take it one day at a time, and we concur. But, the truth is, it is easier to take things one day at a time when there's some kind of pattern of development to lean on. When the pattern is removed, the one-day-at-a-time feeling isn't so easy. I feel like Wily Coyote walking on the air when he doesn't realize he's stepped off the cliff. Of course, he only fell when he looked down and realized the ground was gone.

The mom was frank but encouraging. Her advice: Don't make life complicated. My impression from our conversation: When your child is faced with many hurdles, you need to find the balance between pushing for intervention, more specialists and progress - and trying to enjoy a simple, love-filled life.

We continue to fight in choosing joy - like Romans 5: rejoice in suffering. This passage can be easily misunderstood, and I am not suggesting cheering for the pain. But, we don't want to waste our circumstance, nor do we wish to waste this life. Just as we bring God our anger and frustration, we also ask Him to help us keep our eyes up and forward, to see the joy. Finding the joy brings perseverance, perseverance builds character, and character builds the hope.

It's hard not to glimpse joy when your six year old tells you prairie dogs aren't following Jesus because the man dogs have more than one woman dog in their coterie (prairie dog family - something else she told us). It's hard not to smile when it is announced that caesar salad is now seizure salad "so Janneke doesn't feel bad, Mom." And we smile when our eight year old is thrilled with the map pinned to her ceiling that shows the whole world according to population (her purchase). The shapes of the countries are distorted to reflect their numbers, not their land size. There's nothing like laying on your back, gazing at the huge mass of China before you fall asleep.

It's also hard not to smile when you ask your kids to pose for a picture, and this is what you get:

Lately, Rachel and Janneke have been dealing with a gastrointestinal bug, so the days are long and the nights are short. They seem to be getting better, but we appreciate the prayers for their health all the time. I haven't been able to run with Rachel the last few days because of her health, but I am sure we'll be back at it this weekend.

Rachel has been changing again, flopping forward over her feet when she is sitting or in her chair. She's either intending to do this, or she is easily sapped of strength. Not sure. We are thrilled with her new ability to activate her motion ball (see last post). She uses her head and now also her feet to move it (like soccer!).

We are still waiting to hear Janneke's voice beyond the grunts and sighs, but in the meantime, she has started to use one arm to bang on toys. She is proud of her attempts and spits like crazy to let everyone know.

Rachel has her MRI on Monday, and we hope the results will help both Rachel and Janneke. There are a few more appointments in the next month, but we are cautious in our expectations of answers or revelations.

have a good week.... special hi to our newest family member out in Wisconsin, little Lachlan and his parents Mel (Ralph's niece) and Nick.


Thursday, May 6, 2010

from Rachel

Hi, Rachel here. Thanks everyone for my birthday hugs and cards. I had a great birthday with my family. We went to the Welland Canal to see the geese and throw rocks in the water - my favourite place to be.

One of my gifts is this ball that has a motion sensor. All I have to do is move it and then the ball lights up and plays some great music. I have used my hand once, but I learned today that my head works even better! Check out the pictures.

And, Mom and Dad reminded me to share my big news: I will be going to school this fall at the Niagara Peninsula Children's Centre. It's a program called IPRP - basically its a preschool/daycare program with kids like me and other "normal" kids. Together we learn and play with the NPCC therapists. It's not the official school within the NPCC; it's another part of the building connected with the Glenridge Hill Daycare.

This program starts in September and is four mornings a week. On Mondays, I will be having class in the NPCC pool - how cool is that! Mom was grumbling about finding a bathing suit, though. I am excited to share this experience with my friend Ella (see her blog in our links); only eight kids are chosen from the Niagara area, and Ella and I are two of them!

Dad and Mom say this plan with the IPRP is a big answer to prayer. I know they were excited to receive the news.

Life is good this week. My big sisters worked hard for my birthday - making the presents, decorating the cake, and waking me out of my lovely sleep to sing to me. My little sister, Janneke is also having a good week. She likes to lay beside me and smile at me when Mom does our morning stretches.

Oh, I'm having a great time riding for the NPCC. I am so happy to go each time. I say the letter "g - gggggggggg" to tell Mom "go, go, go, go, go."

happy trails, everyone.


Sunday, May 2, 2010

Happy Birthday, Rachel!

Thanks for the bibs - keep 'em coming!

And thanks for your support with our running this season. There's nothing formal with sponsoring our running. It is set up so that if you want, when you want, you can link with NPCC and donate according to our kms.

Tuesday, May 4 is Rachel's 4th birthday!

Things have changed since that ultrasound in March 2006. We had six weeks to adjust to the idea that our baby would come into this world facing many hurdles. So much was uncertain at that time. In some ways, things still are uncertain.

We are thankful for the joy Rachel brings our family - Rachel Joy. She is our ray of sunshine; her nickname is Ray-ray.

Happy 4th Birthday, Ray-ray. You are loved.

two days after birth...

a couple of weeks old...

end of June 2006 with her big sisters, and sick of the daisies...

welcoming little sister Janneke home from Mac!

and here we are today!