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.

spot

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.

1 comment:

Anonymous said...

Hey there Pot family ~

You are in our prayers this week - specifically keeping everyone healthy before surgery and confident, sensitive care at the hospital and at home. Praying for peace on your hearts and minds in the coming days.

from the VandenBurgs