The latest in my cauda equina saga.

My oncologist had not gotten back to me about the referral to a neurologist.  So I called my radiation oncologist (who referred me to physical therapy), but her nurse said that the referral would have to come from Dr. O.  So I called the BMT clinic again, and Carla had just come from a meeting with him.  She said that he had made the referral, but got a call back from the neurologist saying that he couldn't do anything to help me.  He said I need to go to the pain management clinic.  :o(  She told me to call them on Monday to make the appointment so they would have a day or so to review my history.  

I had some hope that a neurologist would be able to tell me something I could do to improve the paralysis, or at least how to live with it.  But I also knew that it was very possible that nothing could be done.  

I'll have to call my PT to let  him know that I won't be seeing a neurologist.  Maybe I can get pics of my last MRI so that he can see the mess we're dealing with (the tangled, curled up nerves).  I'll also take the reports from the PT to Dr. O next week.  I'm scheduled for IVIG at the BMT clinic on Thursday.  

We had to go to Mom's late last night.  She had packed again, and called wanting to know where everyone was.  I think she thought we were going to move her.  We got everything unpacked again.  Ron went over today and said that she had not repacked, but was still in her night clothes at 2 in the afternoon.

I'm trying to stay upbeat, but it's not easy.

What's Going On Around Here

Well, now I'm in a wheelchair.  Ron went and got it for me yesterday, after we went to the physical therapist.  The therapist is one I saw years ago for my frozen shoulder.  I like him a lot, and have faith in him.  He thinks he can help me, but said he wants me to see a neurologist because of the rapid decline in the use of my legs.  They've gotten much worse since I was there last week, and he printed out reports from both visits to show the neurologist.  

Aubrey thinks my wheelchair is pretty cool.  Wish I felt the same.  I am grateful to have a way to get around, though.  Last night I dreamed that I was walking and walking, down a country road.  

The kids have half a day of school tomorrow, then they're out for the summer.  I ordered some books to help Reece with reading and math before he goes back in the fall.  We will work on it every day this summer.

Ron and Josh have been going to Mom's for me the past week.  She called me earlier, saying that she is packing to move back to Wichita.  It's very frustrating because she isn't moving, but keeps packing things that then have to be unpacked and put away again.  I think this is the sixth or seventh time she has thought she is moving.  Last time she thought she was moving back to her old apartment.  Josh is on his way over there now.

The kids were so surprised when they came home today, because Papa moved the couch out of our bedroom to make more room in here.  Now Reece is sitting in my wheelchair watching Ben 10.  He looks so adorable.

Life.  You never know what will happen next.

Bits and Pieces

Dad in his twenties.

Today, June 4th, is my dad's birthday.  He would be 93 years old if he were still living.  It's been 21 years since his death, and I still miss him.

Aubrey has spent the past hour in here with me.  We played a Garfield game on the computer, then she practiced typing her name and Reece's.  We had a cinnamon roll which she got all over her cute face.  Then she took my cup downstairs and came back with a little more coffee for me.  She said she poured it herself, and put cream in it!  (It's not hot).

Yesterday was pajama and movie day at school, and Reece wore his annoying orange pajamas.  Today is game day.  The kids could take games to play with their classmates.  Tomorrow is water day.  Reece will wear his swimsuit (and tee shirt and shoes, of course) and they will play in the water, blow bubbles, paint themselves and be sprayed off, etc. etc.  I know he will have fun.

I think we may rent a wheelchair so that I can be more mobile.  This is a real pain in the patoot.  I finally got some straight answers about my insurance and referral, so that I can start the PT.  My right leg is so "dead" now that I don't know if they'll be able to help me.

That's about it.  Have a good Tuesday.

Sunday With Kelly

Our beautiful Kelly

My legs are getting worse by the hour.  I can still stand on my left leg, but the right one is totally useless.  It's kind of scary.  I don't know what we're going to do.  I live in a two story house.  Ron is taking off next week to do the driving I normally do.  Thank goodness the kids only have one more week of school.

Kelly came over today to take me to lunch and for a drive.  I had to go downstairs on my bottom so I wouldn't fall (and back up the same way, which was a bit more difficult).  I can still walk with the walker, very slowly and carefully.

I went to Gruene with Kelly anyway.  She took me to lunch at The River House, a sweet tea room that has wonderful food and excellent service.  We ate outside on a shady patio.  

I had quiche, which came with a yummy muffin and fresh fruit.  Kelly had a delicious looking rueben panini with fruit and homemade house crackers.  We both had peach iced tea.  

While we were eating, a well-fed black cat came and sat down and looked at me.  I gave him some cheese, and Kel gave him some of her sandwich.  He was known at the tea room and is named Gipper.  What is a gipper, anyway?

We went driving, and talked and talked.  I absolutely love being with my daughter.  She is so precious.  So in spite of being a cripple all of a sudden, it was a nice day.

When we got back, the kids were excited to see Aunt Kelly, and Reece wanted to show her the Wii.  She brought all of them pool toys for their birthdays.  They love her.  

Ron had finished the gate for the deck stairs and had installed it.  It's tall, and I'm hoping the kids won't try to climb it.  Aubrey has already said that she can get in, but Papa told her he better not catch her even trying.

Hope your weekend was nice.  Prayers again for Oklahoma!