Wednesday, April 7, 2010

more tests ahead

Sara is spending the night at McMaster tonight. If all goes well, Janneke should be coming home on Friday. Tomorrow, Janneke will undergo a number of tests with our friends from the Endocrinology department at McMaster. I use the term "friends" because three weeks ago Rachel went through many of the same tests with endocrinology. It was found during that round of tests that Rachel was/is growth-hormone deficient.

This relates to Janneke because often growth hormone deficiencies can lead to hypoglycemia (low blood sugar) which could lead to seizures. Rachel has never had a seizure, but apparently, Janneke did have low blood sugar while she was having her seizures on Sunday. I spent the last two days at McMaster talking with the attending pediatrician, a neurologist, a metabolic geneticist and because McMaster is a teaching hospital, all of the above's underlings. It makes for a lot of explaining regarding Janneke. We have a binder that includes every report and documentation created regarding Rachel and Janneke with us whenever we take either of them to see a new specialist. This binder has proved invaluable on many occasions over the last couple of days. In fact, it was a brainstorming session that I was having with the metabolic geneticist that led us to take a look at Rachel's recent growth hormone tests. We are not sure that this confirmed aspect of Rachel's condition has any connection to
the seizures that Janneke had on Sunday, but it is a start. Even if there is a connection we are not sure how that knowledge will be helpful in the future, other than freaking us out a bit more.

We have been reminded on many occasions that regardless of how many letters someone has behind their name to show the world their medical qualifications, we remain the biggest experts on Rachel and Janneke. This can be overwhelming because we have so many questions regarding their care, their development, their diagnosis, their future, etc. It seems that the past few days have raised more questions rather than given us any answers. For two parents who like to keep things under control, this is difficult.

Last night, as Sara was readying our oldest two for a return to school, Emily realized that she needed to practice her recorder. Usually this causes Sara and I to curse the music program at the school where our daughters attend and where I work. But last night, even though the same hymn was practiced over and over and over again...for forty minutes straight...Sara couldn't help but be a little thankful even though her husband and youngest daughter were in a hospital room 45 minutes away. The song? God Himself is With Us.

Thanks Len.

We'll update more in the days ahead.

rp


7 comments:

Bernie, Donna and Abigail said...

Please know that you are in our thoughts and prayers. Let us know if there is anything that we can do to assist. Bernie, Donna and Abigail.

Anonymous said...

Little Janneke and your family are in my prayers daily. I pray that tomorrows tests will bring some answers for you. If there is anything I can do to help let me know!
Love, Kirsten

Anonymous said...

Comfort, peace and love from the VandenBurgs

Anonymous said...

Praying for some REST and peace for you. And some answers to your many questions. SHALOM! Ruth

Cora said...

What a clever idea to have all the tests in a binder! I am sure it has proved to be such an asset when wading through the many questions and referrals. You are so right the best advocates are the family and particularly parents.

I am thankful that perhaps you have some answers regarding the seizures.


I am also thankful that God himself is with you.

Cora

Anonymous said...

Glad to hear it sounds like she's coming home soon.
Strength...
-Andrea

The Van Hulzens said...

Aren't those recorders lovely!?!? Connor too needs to practice his again...I told him he couldn't yesterday because I had a headache!

We'll keep you in our prayers.

Heidi