Sunday, May 31, 2009

dancing with the stars

So, this past week, Rachel had several appointments. Per advice of the physio therapist, a stander has been ordered to help her with weightbearing. As ugly and yellow as the stander might be, it will hopefully help her feet and legs to hold her weight. It's on wheels, so we will be able to dance with her. This is important because Emily and Sophia in particular like to dance their stress away. Wait til you see the pictures!

We also discussed with docs at Mac whether or not Rachel should get a portacath. After some deliberating, the procedure was postponed until deemed necessary. Right now, it is almost impossible to find a vein in Rachel's body for bloodwork or IV access. This is a problem in the winter months when Rachel is ill frequently. A portacath can be surgically inserted near her collar bone to allow for easy access. But.. this access comes with some risks, and it was determined at this time that the risks outweigh the benefits.

Janneke is dealing with her second cold. She is sleeping well, but we are suctioning her nose frequently to help her manage the extra fluid. Crazy spring colds! What is interesting is we are seeing her react to the suctioning and the cold as a "typical" baby would. The tears and fussiness, as frustrating as they may be in the middle of the night, hold hope for developmental progress.

Here's a few photos of the last few days. The first photo shows Janneke receiving the soother - called oral stimulation - during a tube feeding with the hope of some day re-introducing the bottle.




4 comments:

Rhea said...

You are constantly in our daily prayers. I love the pictures - Rachel looks like she loves books. If you need anything - let me know. I would be willing to drive and give you a break. Remember I know how to use a pump!!!

Leida Dykstra said...

Sara, I was at your Oma's (my Tante Daatje) last week and she shared with me about your unique family. She is amazed by you all and so proud of you all! I have read through a large part of your blog and I can understand why she feels that way about you.
Gerald and I pray that our Heavenly Father may continue to give you His guidence, His grace, His peace, His patience...
Thanks for sharing with us,
Leida & Gerald Dykstra

Anonymous said...

Thanks so much for continuing to post. Charles and I love your honestly and continue to learn from you as we learn from life. We continue to pray for your family and I hope you got your hair cut!

~Elly

Rebecca Ednie said...

I stumbled upon your blog. Could your children have Pierre Robin syndrome? I cared for a child with that. Worth mentioning I thought.