Friday, January 22, 2010

Continue to keep Haiti in your thoughts and prayers. A friend named Ruth suggested to be mindful of Haiti each time you turn on your tap in the home. That's a start.

Here at the Pot house, the weeks march on. I had a chance to help our friend Ella this week with her g-tube crisis. The tube she has more or less fell out - which rarely happens. Her mom (Bernice), Ella, and I made a trip to Mac on Monday in a hurry; when a g-tube comes out, there is a short window of time before the hole begins to close. Bernice and I had hoped to have a coffee together sometime; racing in the van to Mac wasn't exactly quality time, but we had some good laughs. Needless to say, when I came home, I double-checked our supply of catheters should we run into the same crisis with our girls!

We ask for your prayers for Rachel and her health. She is scheduled for surgery to insert the portacath on Friday, Feb. 5. We are also on-call for her MRI, meaning it will happen whenever they call us. Originally, it was supposed to happen in March, but we have been moved up on the list due to construction at the hospital.

In March, Rachel is scheduled for more hormone testing (the tests that did not work in December). Hopefully, the portacath procedure works, and this testing will provide useful information in caring for both Rachel and Janneke.

Janneke will not be tested at this time, but she certainly is following the path of her big sis Rachel. She has gained a significant amount of weight, so we have modified her feeding schedule and calorie intake. It is always tricky to determine how much to feed our youngest two since they don't show signs of hunger. We want to feed their brains, but their bodies seem to retain more weight and fluid than normal. Given that they don't move much like other typically developing kids, it isn't surprising that their weight is a concern.

We also continue with physio and weight-bearing exercises each day with them. When children don't bear weight with their limbs, their bones don't gain the strength necessary for healthy structure. Our concern (among many) is that both R and J will have weaker bones, and they would be susceptible to injury.

The stander is helping Rachel, but her feet are no longer classified as club feet by the orthopaedic team. I guess she just continues to follow her own path as her feet are now truly unique in structure and function.

Janneke is back on reflux meds, and she continues to smile at her family. She is trying to sit on her own, using her thigh and core muscles. Good work, girl! In three weeks, we will try (for the third time) to assess her hearing.

Since Rachel is having the surgery in two weeks, we are checking with our visitors, nurses, and other folks who come over to ensure they are healthy. We won't be taking Rachel and Janneke out, and we hope there are no new viruses coming home from school.

I guess sometimes, I feel like their care is so consuming, but other days, it seems manageable. Part of living on a roller coaster....

But, we have lots to be thankful for and we are always finding things to laugh about. I started running again - truly an amazing feeling. Ralph is keen on attaining champion status at Wii boxing, and Emily and Sophia are determined to master cartwheels.

All the best to you.

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Cousin Nella helps Rachel with a puzzle.


Emily loves to practice her recorder with her always appreciative audience


Sophia loves to practice her reading with Janneke.

Friday, January 15, 2010

a time to pause

We cannot help but pause in the midst of our life here and think of Haiti. Since Tuesday's earthquake, there have been photos and stories overwhelming the news feeds and our minds. Our thoughts and prayers are with those in Haiti and those who have loved ones in Haiti (including the Van Geest family). It seems that there is much support being rallied with businesses, organizations, MTV, and Hollywood. One would hope that this support is not just short-term; that there will be a long-term effort to strengthen and empower the country and its people.

My uncle and aunt (Jerry and Mary) serve as the Canadian headquarters for an orphanage located in Haiti called Children of the Promise. The orphanage was not physically affected by the earthquake, but the possibility exists that their supplies will run out as the whole country stands in need of fresh water, food, and medicine. Their link is posted if you want to help.

(By the way, there are a lot of different places to donate money for Haiti. I happened to check the website for Christian Reformed World Relief Committee -our church- and noticed that with every dollar anyone gives through CRWRC until Feb 12, it will double in impact due to a generous contribution from the Canadian government. I posted the link alongside with the others.)


We'll post an update on our family when we learn more from our doctors; we had a couple of appointments this week, and we will learn more from those discussions in the next few weeks. Rachel definitely has a surgery for her portacath, but we don't know the details at this point.

Wednesday, January 6, 2010

Accept what you did not choose

Another year has begun. Happy New Year! It was good to see family and friends over the Christmas holidays. We were able to host our families’ Christmas gatherings, as well as entertain friends for New Years and holiday visits. We scheduled everything during hours we had nursing or respite care, so we could relax in our home and not worry about staying on top of the schedule for Rachel and Janneke. That also meant we didn’t take Janneke and Rachel out of the home - except to church on Christmas Day. So far, they continue to be reasonably healthy, for which we are thankful.

And now the year awaits. Only God knows what 2010 holds. Admittedly, we are apprehensive. The year 2009 held a few surprises for us, particularly the arrival of Janneke Grace (see our first post). We were told we were expecting a healthy baby girl who showed no signs of being similar to Rachel. And we were all surprised - no, shocked - when she was born. Another tube-fed daughter?

Crazy.

Since then, we have learned that we need more help in the home, we can’t take road trips very easily (road trips=anything over two hours), and much of what we planned for our family and for ourselves has been altered.

Yet, the year ahead holds much promise. Janneke might start bearing weight in her arms, Rachel might start school, Sophia might score seventeen goals in soccer, and Emily might master the cartwheel. But maybe not.

And that’s okay. We have to be confident in the mystery of the future (Proverbs 31 says to laugh at the days to come) because the future is in God’s hands. And He promises to walk alongside us always.

Doesn’t mean we aren’t ever nervous or anxious. That’s being honest. Pray for peace - of mind and heart.

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A little 2009 review... we started the year with Rachel quite sick. We were very worried throughout January 2009, and we wondered if she would ever get better. She did. Then Janneke was born.



And who would have imagined in March that Janneke would sit with one of her namesake aunties and play Apples to Apples at Christmastime?



Emily and Sophia had a chance to skate on the outdoor rink at Niagara Falls in late December. They loved putting their skating lessons into practice. Such grace on ice.





And our two youngest monkeys again.... here we come, 2010.