A place to find out where Anne is and how she is feeling. Goal: Make this blog obsolete.

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Good News

It is with some trepidation that I have decided to report on Anne’s progress.  “Trepidation,” because with so many dashed hopes during the last two years, we become hesitant to report any true progress.  Call it the fear of “jinxing” something.

I have not posted anything since April because nothing “new” had occurred.  We had no new treatment options and Anne was more or less not getting better, though not getting worse.  A “good” day would be a day during which she was in serious pain only once.  Most days were worse than that.  Occasionally, she might go a day without any serious pain.  She continued to be fed and hydrated only by a tube.

We stayed at her grandmother’s house on the other side of Jamestown, primarily because the water heater there is larger and Anne often copes with pain by bending over in a hot shower.  The three of us slept in a single bedroom. I slept on an air mattress.

A few weeks ago things began to change.  It would be impossible to say what caused the change, if anything.  Anne has been using hypnosis to deal with the pain and the anxiety that goes with it.  She sought and received an anointing from a priest.  A high-level Cardinal I know in Rome sought prayers from some holy persons he knows.

And then there’s Moe.

Anne has spent the last two years in hospitals, sick beds, and hotels watching Animal Planet.  Through those shows she has developed a fondness for pit bulls, which she feels are unfairly maligned.  In January, while Anne and Rosi were in Rhode Island, our Yorkshire Terrier died from old age.  Now that there was “room” for another dog, Anne wanted a pit bull.  We said that she had to get well first and, of course, she had to move out of her grandmother’s place and back to our house.

A few weeks ago we got word that the local shelter had two pit bulls mixes available.  We took a look and eventually brought home Moe. Moe – short for Mozart – is a pit bull and border collie mix.  Anne had to move home right away.  That itself was an accomplishment.  She had a few bad days, but then started to get better.  She has now gone about two weeks without any rescue medicine.  She is also beginning to eat a little – mostly ice cream.

This is probably the best she has been in the last two years.  (In fact, the whole thing began exactly two years ago to this day.)   If she continues to do well, she may attend some classes when school begins.  It would be her first time in two years.

While we know there are no guarantees, we hope and pray that she is truly on the road to recovery.

moe

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Still not good . . .

and still in Rhode Island.

Not good . . .

After doing so well, Anne has had some setbacks.  Some stomach problems, a flu bug, the J-tube ruptured . . .  it seems so discouraging.

Please pray and send her thoughts and words of encouragement and hope.

Paula Abdul, Shrimp, and One Heading Home

Anne continues to get better each day.  She is still, however, mostly dependent on tube feeding.

She ate nine shrimp yesterday! And then she met Paula Abdul.  Ms. Abdul has suffered from chronic pain and told Anne that she is an inspiration to her.

image

It is hard to say when Anne will be well enough to go home.  Maybe in a few weeks.

In the meantime, Chris is heading home.   Well, not really home for long.  He flies back today, but will then move straight to Bismarck for the start of the legislative session.

 

 

Still in Rhode Island

I just realized that I never clicked “publish” on our last post.  So I did it just now.

A couple weeks have passed since then.  Yes, Anne restarted the scrambler therapy and started the partial hospitalization program.  We were at the Ronald McDonald House for a while until a friend arranged for us to stay at the Marriott in Providence.  We may be leaving there soon, however, and have to find another hotel.

Ann is getting better, but it is a slow process.  She is just so underweight and weak that getting her whole body working again is a challenge.  We will be here for at least another week, maybe two or more.

 

Out of Hospital – Kind Of

After a few days in the ICU for septic shock Anne was transferred to a regular bed.  She finally got out on Monday.  She will be on a high regimen of antibiotics for a while.  While she was there they removed her port and replaced her J-tube.  The port was infected.  The J-tube was cracked.

But she is not completely out of the hospital.  She has started a partial-day program designed to help kids cope with complicated medical conditions.  It is only part of the day so she has restarted the scrambler therapy, which is why we cam to Rhode Island in the first place.

We will be here for at least another week and probably through the holidays.

We are staying at the Ronald McDonald House in Providence.  It’s not a nice neighborhood (no offense, Rhode Islanders) but it saves us money and the place itself is nice enough.

ICU in RI

Well, we were holding off on posting until we had a clear idea of what would happen.

We went to Rhode Island for Anne to receive a cutting-edge therapy for her pain.  (Find out more about it here.)  The therapy takes at least two weeks.  For the first week she appeared to be getting better!

But then she got very sick with an infection and we had to take her to the ER. She had a fever over 104.  She is now in the ICU at Hasbro Children’s Hospital in Providence, Rhode Island.  After she is fully treated we will begin the therapy sessions again.

 

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