Sunday, May 31, 2009

dancing with the stars

So, this past week, Rachel had several appointments. Per advice of the physio therapist, a stander has been ordered to help her with weightbearing. As ugly and yellow as the stander might be, it will hopefully help her feet and legs to hold her weight. It's on wheels, so we will be able to dance with her. This is important because Emily and Sophia in particular like to dance their stress away. Wait til you see the pictures!

We also discussed with docs at Mac whether or not Rachel should get a portacath. After some deliberating, the procedure was postponed until deemed necessary. Right now, it is almost impossible to find a vein in Rachel's body for bloodwork or IV access. This is a problem in the winter months when Rachel is ill frequently. A portacath can be surgically inserted near her collar bone to allow for easy access. But.. this access comes with some risks, and it was determined at this time that the risks outweigh the benefits.

Janneke is dealing with her second cold. She is sleeping well, but we are suctioning her nose frequently to help her manage the extra fluid. Crazy spring colds! What is interesting is we are seeing her react to the suctioning and the cold as a "typical" baby would. The tears and fussiness, as frustrating as they may be in the middle of the night, hold hope for developmental progress.

Here's a few photos of the last few days. The first photo shows Janneke receiving the soother - called oral stimulation - during a tube feeding with the hope of some day re-introducing the bottle.

Tuesday, May 26, 2009

Our new normal

This past weekend, we had our first big outing as a family of 6. We traveled to Kitchener and celebrated with my (Sara's) parents -and many other friends and family- their 10th wedding anniversary and my dad’s 60th birthday. Traveling any distance can be a challenge with tube-fed children, particularly when they need to be fed along the way - and when you forget to bring along the AC adapter to keep the feed pumps charged.

But the day happened with just a few minor problems. We were exhausted but thankful by late evening. We aren’t exactly sure what Emily and Sophia did that day; they were with us, but we spent most of our time feeding or caring for Rachel and Janneke - and chatting with well-wishers. (That’s when we are especially thankful for aunts and uncles who have time to help them out - thanks, Laura and Rhodes.)

My dad said something that night that I haven’t quite forgotten: He said that truly the celebration was not so much about the wedding anniversary or his birthday, but it was more importantly about God’s faithfulness to our family. Though the families were initially brought together because two very special people died, God showed his faithfulness through the new memories and blessings of blending a family and bringing fourteen grandchildren.

I also thought that when we talk about God’s faithfulness, it isn’t that we say God provides us with exactly we want... but He walks with us and provides us with the strength we need - His faithfulness means He will never leave us, even in the darkest moments.

I’ve been asked more than once to describe a typical week here at the Pot house. Ralph is back at work, and I am managing the home front. Monday through Friday, there are volunteers and people we've hired in the mornings. Home care nurses (VON) provided through government services come from noon to early evening. This makes for a busy week, but the help is greatly appreciated. Meals are being made for us twice a week (which guarantees at least a third meal of leftovers!), and currently, there are three handsome gentlemen volunteering their time to help us finish some home renovations.

All this help means the laundry and groceries get done, and both Rachel and Janneke can have their physio-therapy sessions. It also means I can pay attention to Em and Soph when they come home from school. Admittedly, the idea of someone always in my house is a bit disabling... funny as it sounds. I find it still awkward that someone is in my house, caring for my kids while I am also in the house. There are moments when I want everyone to leave; I don't feel at ease in my own home. But, I recognize the fact that everyone benefits when we work together, and if I were to try this all on my own, it would be rough. (Saturdays and Sundays, Ralph is home, and we sometimes have extra care but not as regular as during the week.)

Having two children who are tube-fed means I have a typed schedule for the day. The girls have their routines colour-coded, and there is something happening every hour or every half-hour. Rachel is fed four times a day, along with several meds and inhalers, and Janneke is fed six times a day. Presently, we are doing oral stimulation with a soother during Janneke’s feeding to encourage possible bottle feeding. A feeding for either girl takes over an hour, but you can sometimes multi-task during a feeding. It sounds nutty, but it’s becoming normal, and it is not always chaotic. A friend stopped in this morning and remarked at how quiet and ordinary things seemed... and that’s what I hope for - a new ordinary, a new normal.

God IS faithful, and that’s what I have to remember. I also have to remember His faithfulness is that much more evident when I count my blessings and reflect on what went right each day. If I spend more time frustrated over what isn’t going well or what is bothering me, those feelings will slowly blind me from seeing His steps alongside and in front of mine.

Now, if I can get my hair cut this week, that would be another blessing. : )

Saturday, May 16, 2009


Life can be ordinary around here. Emily and Sophia continue to find ways to make their days creative - and make their parents laugh. Rachel thinks it's great to be one of the big girls, and she particularly loves the early morning snuggles. Janneke responds well to physio, and she loves being outside. We're catching a glimpse of the new normal for our family.

Tuesday, May 12, 2009

seven miles from Jerusalem

There is a story written in Luke about two people walking down a road, stunned by a recent turn of events that have turned their world upside down. Jesus, the one who was supposed to save the Jews had been arrested and crucified, and now the rumour was his body was missing. Some women were saying Jesus was alive but that seemed unbelievable. On the road back to their home, another One joins them, and walks with them on their way. The two recount the week’s events to their traveling companion who seems surprised, almost frustrated, by their lack of faith and ignorance in understanding. When the two people reach their home, they invite their new companion in for a meal. Only after the bread is blessed, broken, and shared, do the two travelers see that it was Jesus who was walking with them. They were blinded by their sorrow, consumed by the circumstance, that they didn’t see Christ alongside them on their journey.

Consumed by the circumstance... maybe that’s a good way to describe us these days.

Janneke is now nine weeks old, and she has dealt with her first cold. Thankfully, we have a suctioning machine in the home that can help her deal with the extra fluid that comes out the nose and mouth. (The sound of the suctioning is reminiscent of the dentist!) We enjoyed Rachel’s third birthday, and she continues to bring joy with her beautiful smile, and her interest in the things around her. Recently, she started giving hugs to her dad. It’s a subtle hug, but for her to intentionally put her arms on her dad’s shoulder is a new step for her. We can’t help but think Janneke’s arrival spurred some of her progress with touch.

Over the last three weeks, we have noticed more similarities between Janneke and Rachel. This has been somewhat discouraging. Today, Janneke went with Sara to the doctor for some immunizations. Janneke didn’t cry; she didn’t express any reaction emotionally or physically. This would have surprised us more if we didn’t have a three year old who did/does the same thing. Janneke is also showing signs of distress in her digestive tract. At least we have the experience with Rachel to alert us sooner to problems with Janneke; we can also avoid the experimenting with medicines and choose the one that we know works on their systems.

Emily and Sophia are doing well; last weekend, as a gift from friends, they went on a trip to Toronto with their dad and cousin Alanna to see Dora the Explorer LIVE at the Cannon Theatre. In true Dora fashion, they travelled to Toronto in a van, train, subway...that’s van, train, subway... say it with me!...... The goal was to see a children’s play, but included some unexpected adventures. Soph loved the escalators at the Eaton Centre the best. They are tiring of the revolving door here at home, however. Someone is always coming or going, helping out our family. We tell them - and ourselves - this will change as Janneke and Rachel grow. We recognize they have to accept some adult concepts with their child-sized minds. (We, too, have moments where we don’t want to accept the circumstance.)

In the week to come, Ralph will return to his job at Beacon, and volunteers and paid staff will help Sara make the day-to-day work.

Your prayers are requested, felt, and appreciated!

Sunday, May 3, 2009

Happy Birthday, Rachel!

Rachel turns 3! And Dad and Mom say, "Whew!" Thanks to God and our supportive community of family and friends, we can celebrate Rachel's special day. She is dealing with a cold right now, but she is still in good spirits. I have to admit, it seemed odd to put work into making a cake for our tube-fed daughter, but her big sisters expect that Rachel's birthday should be like anyone else's. (There was some talk about blending the cake and feeding it through the tube....)

We are still trying to find some routine here. Janneke has pulled on her g-tube a couple of times, causing anxiety for her parents and pain for herself, but so far, no extra trips to the hospital. Both Rachel and Janneke had a visit with their orthopedic doctor on Thursday. We learned quickly that at this time, taking both girls to Mac is a two person job! The doctor and her team at the fracture clinic gave the girls lots of love, and it was established that Rachel (and later on Janneke) be in a stander as often as possible.

A stander is a piece of "medical" equipment that allows the child to put weight on their feet while being safely secured. We think it looks a little funny; we have used a stander in the past on loan. Now the push is to acquire one for the Pot family -for keeps. We are not surprised about the push for Rachel to be in the stander, but it was disheartening to hear that Janneke should also be in one (when the time is appropriate). We both know that Janneke may have her own difficulties with weight-bearing and mobility, but we don't like to think too much about it right now. We still see time on our side.

Aside from weight-bearing issues, Rachel has made steps in developing some eye-hand coordination. She now follows a ball on her tray, and, given lots of time, will attempt to pick it up. Though some of her fingers cannot completely extend, she is able to use both hands together in her own way to touch the ball. This is a big deal! And, big sister Emily has been teaching Rachel how to play with dolls. It has been priceless to see the reaction on Rachel's face as Emily gently pushes her to touch the baby and feed the baby.

So, another year for Princess Rachel. And she is a princess - of the King of kings.

(May the 4th... makes me think of Yoda's words to Luke - Well...May the 4th be with you too.)