Continuous Fevers

Alanna has had a week of sporadic fevers now.  The doctors keep playing with the dosage and types of antibiotics they are giving her for the infection in her nervous system.  She had an MRI of her brain and spine last Tuesday (her brain shows no sign of abscesses or tumor growth still, Her brain does have signs of inflammation that has developed from the infection.)  When I tell you she has a fever in no way do I mean she is any pain.  She has a fever and it makes her a little bit tired, she is still smiling, joking, and in good spirits.  The fevers come and go.  We have been told she would need to make it 48 hours without a fever before we have any hope of leaving the hospital.  She hasn't even made it 12 hours yet.

She had an ultrasound done of her heart twice now because the first time she moved and fought too much.  The second time I told her an hour long make believe story to keep her calm.  Don't ask me how I managed!  It was out of desperation!  It was a crazy story about a puppy named Sandy who wore hot pink shoes with rainbow laces and a yellow hair bow.  Sandy won the dog show. The prize was 636 flowers, 200 and something dog biscuits, and 36 puppies.  She had to take the puppies home somehow and then they all had to have a dance party on a rainbow.  They all slid down the rainbow. 1 puppy, 2 puppy, 3 puppy, 4 puppy. . .   Around 15 puppies down the rainbow they finally finished the ultrasound.  I am so glad I didn't have to name them all!  Anyways, the ultrasound of her heart turned out well and they are happy that she has a healthy functioning heart with no infection.

Sadly, they didn't get the ultrasound of her stomach that they wanted.  But thankfully they have scheduled another lumbar puncture to check on the infection in her spinal fluid again for Monday morning.  So while she is sedated for the LP they will also do the ultrasound of her stomach so that I will hopefully never need to make up the names to 36 puppies.

She also did her radiation simulation this week so that whenever the fevers go away radiation will be ready for her to start her treatments.  She must lay in the radiation machine that exact same way every time she goes in.  She wears a mask as well to keep her head still.  Her body must be protected so only her brain and spine receive radiation, hence all the care. She has stickers with X's all over her chest that we must leave on so they can line up her body each time.  I guess X marks the spot.

In between the fevers Alanna has taken to walking all the way down the hall in her new hatchimal slippers so she can watch the eyes glow.  I now understand the need for shoes with lights in them.  It is so nice to have a motivation for her to walk so far!

Also, Steve moved out of the cottage to St. James Inn.  The inn is 2 miles away from the hospital has a shared living space and kitchen with two other families.  We have a large bedroom with two twin beds and a very nice backyard.  Members of the other two families are also battling types of cancer and the inn is donated just like the Ronald McDonald House.  It looks to be an even better match for our family than the cottage is.  We are so grateful!  Alex's Lemonade Stand donated a gasoline card to our family and the Bumblebee Foundation donated funds for gas and groceries.  We are so thankful and are able now to focus on getting our daughter well rather than how much debt we are getting ourselves into.  Thank you so much!

A great thank you to all of our friends and supporters as well.  We are amazed at all of contributions you have sent us.  Much love to all of you, we still appreciate and feel your prayers everyday.

I have been able to run a few miles this week.  Mostly when Alanna is in procedures.  Steve was able to finish writing his dissertation and send it in for review.  We feel like we have lost our life and have been thrown into a completely different reality.  We have now been in the hospital for 36 days (minus 6 hours last week) and I don't see any chance of getting out anytime soon.  The doctors are even starting to call the hospital our home and I have agreed with them!  The hospital really does feel like home now.  I can't tell you how strange home felt last week when we were there for 3 hours.  I have the hospital playroom's schedule memorized and we go there every time it is open.  I never set foot into the cottage Steve stayed in the last couple of weeks but I know he enjoyed it (Thank you Megan's Wings Foundation!).  I hope I get to see St. James Inn at some point.

And a new hat for me, children's author and illustrator.  "The Adventures of Hatchy Puppy and the Hatchy Slippers".  I have now written 5 books in two days.  Book ideas for volume 6 are appreciated :).

Alanna has decorated her pole and named it Sandy since Sandy now goes everywhere with us.  We have taken Sandy to the playroom, midnight walks through the hall, the bathroom, and the shower.  Sandy likes to beep a lot and every time she beeps we call the nurse to shush her up.

I guess, we are hanging in there.  Trying to still hold onto a little of who we once were and making the best out of a traumatic situation.  My prayers to each of you that you may go on doing good in the world in your own trials.  God gives us trials so we may learn and become stronger better people.  All my love and one small request to you to keep a prayer in your heart for Alanna.