Monday, June 21, 2010

nothing out of the ordinary


an afternoon out!



Another week. Another win for Holland.

Life has been great for the last seven days. Rachel is quite cheerful and trying to find her voice. She has an incredibly cute, hoarse sound right now that gets us all laughing. Janneke is turning her head to all the sights and sounds around her, and she smiles so much when she hangs out with Rachel in the big bed. Emily and Soph are looking forward to summer holidays, and they watch whatever soccer they can with Ralph. Emily is torn between cheering for the USA and Holland, and she is sad we can't find American van flags. (Not a popular item around here with all the Holland, Italy, Portugal, and England flags.)

what are they looking at?



We had a wonderful Father's day here with just our little family. We were able to go to church -and nothing crazy happened. That's a good thing. We came home, finished R and J's feeds, had a sandwich, and then we went to Port Dalhousie (beach on Lake Ontario) until the next feeding time (4PM). We had an "ordinary" afternoon with just our family, and it was a great feeling. To be normal!

Friday, I was at Mac with Rachel, Janneke, and nurse Ruth. We met with our endocrinologist who confirmed our concerns with Rachel and Janneke's growth. I guess you could say we know a small piece of the puzzle now. According to the tests given in the last six months, both Rachel and Janneke have low growth hormones - called hypopituatarism. This is actually not that unusual, but our complicated feelings sit in the answer of treatment.

Low growth hormone levels teach us two things. The first is that seizures in the first year or so of life are common because growth hormones also affect the blood sugar level. That would explain Janneke's seizures. The chance of more seizures decreases in likelihood as the child progresses into second year. That's good.

The second thing we have learned is that Rachel might not grow any taller. She hasn't grown since she turned two. She is now four years old. She could potentially stay this small. And Janneke will most likely follow that pattern - we'll see when she reaches her second birthday.

Low growth hormones can be treated with daily (needle) injections of steriods. This is something other normal kids with low growth hormones endure. But our kids are not normal.

There are some complicated questions to answer, and I hesitate to type them in a public way. What we decide to do with our girls and their growth is not something we will figure out overnight.

Presently, it does not seem wise to proceed with steriod treatments; the benefits would not greatly improve their quality of life.

In the meantime, we have some thinking - and a lot of praying - to do. Thankfully, there is no pressure to begin treatments or make a decision. There is time to wait and see. Again, it is only a small part of the puzzle; we hope to discuss this with our geneticists as they add these test results to our file.

So, we will wait and see, and we will enjoy the ordinary moments with our family. Our love and our care plan for our girls has not changed. We look forward to more days at the beach, playing Connect 4 on the trampoline, and teaching Em and Soph how to shoot a basketball.

Rachel and Janneke hope to complete the Peachbud 5K next week!


a special visit with Opa and Oma



Peace.

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3 comments:

Trevor B. said...

amazing how you take this all in stride sara. i have always admired this approach of yours :)

Anonymous said...

I will continue to keep you all in my prayers, being able to get answers is great but always brings up more questions, I will pray. It is great you were able to have a normal day on the beach, I hope you all have a joyful and HEALTHY summer
Annette

Anonymous said...

There are some big words to spell in this blog - hypopituatarism, endocrinologist, geneticists! I am so glad that you and the family could enjoy the simplicity of the beach. I am praying that you have more times like that.