Tuesday, December 22, 2009

warm wishes

It's getting close to Christmas Day. With this virtual connection, we can wish you all a Merry Christmas and Happy New Year on time and without getting stuck to the stamps.

May the Lord bless you and keep you. May His face shine upon you in 2010 and bring you peace.

Thank you for your prayers, support, and encouragement. We move forward in faith that some day all things will be made new, that God will make things perfect and right again. For now, we trust that He will walk with us through the ups and downs of life.

Please continue to pray for our family, particularly for the health and wellbeing of Rachel and Janneke.

In His grip,

the Pot family

Wednesday, December 16, 2009

elephants and doctors and Bulldogs

How do you eat an elephant?

More on that in a moment.

Today, Rachel and I headed to Mac for a long day of hormone testing - hers, not mine. But the testing was not meant to be. As with previous tests, I reminded the staff that Rachel has next to impossible access for veins. This is an integral part of testing and getting any information from Rachel - from her blood.

After trying unsuccessfully, both bloodwork technicians were frustrated. So was I. Rachel doesn't really react to the pricking and poking initially. Sometimes that means the techs will try for longer than with other children who might scream or cry. Yet, later on, she is tired and bruised - and I am sad for her. This morning, the technicians seemed almost frustrated with me, but I think it was the situation. They told me it is not fair of the doctors to order all these tests if we can't put an IV in Rachel. They told me to tell the doctors Rachel needs a portacath.

Well, that was the conversation we had with a surgeon back in May, and he discouraged the idea (argh!). Yes, no, yes, no.... so many opinions. It's hard to advocate for your child when the professionals have differing philosophies. I also wrestle with how pushy to be. It's my nature to try to form a relationship with the professionals, so they will remember our family and help us. I know if parents are too pushy, they are sometimes ignored. This morning, I was told to wait for some phonecalls for rescheduling, and after two hours of waiting, Rachel and I left for home.

So, this business of advocating for our kids is huge. Kind of like eating an elephant. How do you eat an elephant? One bite at a time. Today, I felt like biting a doctor.

I bit a good cranberry blueberry bran muffin instead (thanks, Tracy). Tomorrow is another day. We really hope R and J get healthy soon;it has been a long and tiring fall. Both girls are still not 100%, and Rachel has been losing weight because of her recurring reflux. With some good sleep and good health, the doctors stand less of a chance getting bitten.

(Funny part about the day - players from the Hamilton Bulldogs were visiting the children bedside this morning. While other children were clamouring for autographs, Rachel fell asleep. Maybe if one of the puppets from Baby Einstein came instead, she'd stay awake. Sorry guys, but thanks for the souvenir.)


Tuesday, December 8, 2009

cooped in

Another week here... We've had some cancelled plans in the last week due to illnesses -both Rachel and Janneke are dealing with colds and infections. So, what do you do when you are housebound? Experiment with iPhoto.

Yes, this is Emily.

We've toured one school as a starting point for our decision on Rachel's schooling. It's tremendously overwhelming, and we are not sure what will be the best scenario. We will be meeting more school folks and talking with our team at the children's centre in February, but the idea of letting Rachel go to a classroom is already unsettling. Yet, she loves to be with other children, and we want to give her the opportunity to grow in an environment that can meet her needs. More on that to come.

I had to change Rachel's g-tube this morning, and that was more difficult this time than before. We replace the tube every three months because she usually has some kind of infection developing by the three month mark. I am still caught off guard at times when I see this small hole in her torso, and I know I have to somehow squeeze the tube into the hole, so she can eat. Crazy.

Looking ahead, we've got some testing at Mac next week for Rachel, and hopefully a chance to celebrate Christmas with family next weekend. I'm really hoping all four girls get and stay healthy.