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amanda 9

October 5, 2014 Leave a Comment

 

CAnd the letter of the day is “C”.

C is for CHURCH and we are sad to be missing church again.

C is for COLD. It is COLD outside.  The furnace was not on at home and I woke up freezing in the middle of the night.

C is for CONFUSING. What is confusing you ask?  Amanda is.  Now I don’t want to have to explain but if I had to put it in one, long, (probably grammatically illegal) sentence, well here goes:

A bad staph infection went systemic and wreaked havoc on Amanda’s lungs, and not wearing her AVAP mask probably made it worse and now C2we have cleared up the infection but will probably be on IV antibiotics for a while still and her lungs are clearer now but she still does not breathe when she sleeps and we probably can’t fix that but the neurosurgeon said her CSF is clear but now he is bringing up Chiari issues (which I tried to bring up 2 years ago and no one listened to me) and the cardiac doctor does not like her high heart rate but says she can handle it but says it can wear her heart out and now oxygen is not what she needs and we all really don’t know why she does what she does and it seems impossible to ever conceive of balancing it all out while all the while she carries twice the CO2 that you and I have.

Sorry – I will not be taking any questions on the matter.

We are okay – tired of being here and weary of it all.

Breakfast was a CHEESE omelet again and lunch was a grilled CHEESE sandwich and COTTAGE CHEESE.

That’s all I got for now.

just Laurel

1 Corinthians 14:33 For God is not a God of confusion but of peace.

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Leave a Comment Filed Under: Amanda, Perfectly Made, Hospital updates

About Laurel

Laurel is a wife and mom to three girls, including Amanda, who has spina bifida. She's a nurse and writer, sharing about her faith and journey as a caregiver

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Hey – it’s me! just Laurel. I am just a 50-something year old mom who lives in southeastern Michigan. Married forever to the love of my life, Ted. We are just like any other family with kids out there: working hard and doing our best to raise great kids and to live as decent, moral people.

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