Therapeutic Recreation

Today Bailey had therapeutic recreation today.  She only has this a couple of times a week and I am not really sure what it is about but today we played a game.  It was a dice game version of Sequence.  I have never played Sequence but if it is half as fun as the dice version I think I would love it!  It was a pleasant relaxed way to spend a half an hour in the middle of her therapy schedule and I was glad to see that Bay has not lost her overly competitive spirit!  She was cutthroat and vicious!  I love it.

P.S.  I won the game!  I never win!  It was very exciting.

Today was a better day - BAILEY MOVED HER ARM!

I have certainly seen Bailey get excited about things before but nothing was made her more happy then the moment when she realized that she could move her arm. After 2 weeks of nothing suddenly she has the ability to bend it at the elbow. The control of it is still very weak but this is HUGE!

I ran to get her Occupational Therapist so she could come see and when I told her what was going on she teared up. When Dr. Melchert stopped by to see her we showed him too. He said "Holy shit! I am so happy I might wet my pants!"

Today was a VERY good day, a very good day indeed.

Today was a long day

Today was our first truly sad day since entering the hospital 13 days ago.  Bailey was emotional and teary through most of her therapy.  She said that she was tired and just wanted to go back to bed.  She struggled through the things that seemed simple yesterday.  Putting on her shoes made her weep with frustration.  I couldn't get her to talk about what was going on in her head so I was stuck in the role of spectator to my daughter's sadness.  It is not a role I fit easily in to.  I wanted to help.  I wanted to make her feel better.  I couldn't.

Just when I thought things couldn't get worse they did. We had a visitor.  One of Paul's postal customers is a stroke survivor.  She had her stroke about 20 years ago.  She still works as a nurse in the stroke ward at North Memorial and travels all over doing talks about what it is like to recover from a stroke.  She is probably in her 60's now but still spunky and outgoing.  She asked Paul if it would be OK for her to visit Bailey.  She thought that hearing something positive from a fellow stroke victim might help her.

Judy came by at about noon.  She sat and talked to us for about an hour.  She told Bailey that she knew what she was going through and that she needed to remain strong.  She told Bay not to give up on the idea that she is right handed because she could be again.  She was really quite inspirational.

Well when she left all Bailey got out of the visit is that Judy can no longer use her right hand.  Of course this made her very sad and she sort of figured that if Judy couldn't use her hand then she wouldn't be able to use hers.  We had many tears over this.  I explained to Bailey that it was too early to know how much recovery she would have but the therapists had every reason to believe that she would regain the use of the hand.  It might be limited use but they expected improvement.

The part of the Judy's story that Bailey didn't pay attention to was when she told how she had regained some use of her hand and was able to write with it and do a ton of other things.  The reason she couldn't use it now was because she had gone on vacation to Mexico and fallen, breaking 3 bones in the hand.  She had not realized the extent of her injury so you just wrapped the hand and finished her vacation.  So the reason Judy can't use her hand is not from the stroke!  It was from vacation!

Even after being reminded of this Bay was still sad.  I think today is the first day that she actually comprehended that there may be, as the doctors put it, some deficiency after she is done with recovery.

I know it must have been overwhelming for her.  I am still in a bit of denial myself.  I have a pretty picture in my head of my perfect girl doing things and acting just like she did prior to the stroke.

Wishful thinking

While reviewing what modifications will need to be done to the house in order for Bay to live there comfortably and safely Paul's cousin mentioned that we might want to reach out to local businesses.  He said that they might be willing to provide a discount or do a donation of supplies.  I got pretty excited about this so today I called Menards.  I spoke to the general manager at the Richfield store, I explained the situation and what we were likely to need.  I asked him if they offered any sort of discount for this sort of thing.  He said "Well we could probably extend you a discount. Maybe 10%?" 

Is it me or does this seem like not really much of a discount?  Am I being ungrateful?  Ugh!

Birthday Rehab!

There are no exceptions or breaks in the rehab schedule for her birthday.  We were up by 7:30 and doing Occupation therapy by 8:30.  Today's OT was about balance and throwing.  She did really good except for the fact that all the patients around us felt the need to duck!

This is Dr. Melchert.  You may remember the name from a previous post.  He is the doctor who gave us the MRI results when they finally figured out it was a stroke.

He is bringing ice cream for Bay later today in honor of her birthday!

After OT we had a little break so we sat for a while in the patient lunchroom.  It has a nice view of the courtyard outside of the hospital.

No, she is not waving her fist at me but it sure looks like it.

Apparently she is still sleepy from yesterdays party.

After our short break we were onto Physical Therapy.  They let her pick what she worked on today and without hesitation her answer was WALKING!

Then another break and more sitting in the lunchroom.

She called her dad to make sure he knew what she wanted him to bring for her birthday dinner!

Then we called Schlotsky's (where she worked) to say Hi!

Can you believe she is wearing something other than Chucks?

Then off for more PT.  This time she wanted to work on walking but wasn't really interested in the big blue walker so we moved onto a cane!  It is difficult but she is determined.  I am so proud of her.  The progress she has made in the last 12 days is astonishing.

Happy 17th Birthday Beautiful Bailey!!!

Today is the actual birthday!  Too bad she is so damned tired she can't be excited about it. 

We did have a bit of birthday fun today though - Monica (aka "the one that I like") brought her cupcakes for breakfast!!  This did get us a sleepy smile.

Last Easter

I just came across these pictures of Bailey with her brother, Dad and Grandma Phoebe and thought I would share them.

No, I was not sitting alone in the dark looking at 5 years worth of pictures of my girl on the eve of her birth. Nope, just not doing that!

The aftermath

Oh boy was Bailey wiped out tonight!  I am glad she had fun with her friends and family but she is going to be suffering tomorrow.  In hindsight maybe something earlier in the day would have been better but I really thought she would take a nap before the party.  Instead she wanted to wander and paint nails and she was just too damned excited to sleep!  It was a good day but I wish she wasn't suffering so badly because of it.

A birthday party to remember

Today was the big party!  We reserved the family room on the unit and invited all her friends and some random family members.  I am sure I forgot a ton of people because it was a rather late in the week plan to have the party but you would never know it - there were about a zillion people here!

Here are the pics to prove it!

The Birthday Girl

Fiona Niesewand and Bailey

Grampa Jim and Nikki Atol

Uncle John, Dad (Paul) and Fiona

Great Uncle Don, Cousin Laurie and Nicholas

Great Grandma Phoebe (she's 100 years old!), Aunt Julie, and Cousin Jamie

Emily Nygaard, Nikki Atol and Cousin Kyle

Gramma Lorraine, Grandpa Jim, Emily Nygaard, Nikki Atol, Aunt Amber, Cousin Belle and Andy Myers

Aunt Julie and Cousin Jamie

Bailey and Fiona

Bailey and Fiona - Fi was, quite literally, Bay's right hand for the day!

Cousins Jackie and Belle

Cousin Jackie

Brother James and Cousin Belle

Great Aunt Anne, Mom, Grandpa Jim and Gramma Lorraine

Alex Gunderson, Max Hamilton and John Libra

Katie, Maki Love and Marie Rupiper

Dad (Paul)

GIR!

Gotta check those texts!

Uncle Doug, Aunt Julie and Tommy Shoemacher - THANK YOU Aunt Julie for providing the wonderful food!!!!

Alex Gunderson, Maki Love, Marie Rupiper, Lucy Nordstrom, Lindsey Melchior, Madison Andrews

Thank you to EVERYONE who was able to join us in celebrating Bay's big day.  It was wonderful. Truly a day to remember.