We leave tomorrow

Our flight to Cleveland, Ohio is tomorrow.  I've been trying to get everything in order.  I mean everything.  From organizing mom's records to washing every stitch of dirty laundry in our house to making sure there's enough toilet paper in the bathrooms.  Yeah, I'm a tad OCD, but I just want my family taken care of while I'm away.  Plus, the tables are turned this time.  I'm usually the one staying home with the kids.  And it's not that I don't trust that Brady can do this.  He can and has before.  He's quite amazing actually, but I wouldn't be myself if I didn't worry.  Just a little.  :)

So tomorrow is going to be such a long, long day, especially for mom.  It's very difficult for her to sit up for even a few minutes much less driving to the airport, waiting at the airport, connecting in Atlanta, landing, getting our luggage, getting the rental car, and driving to our hotel tomorrow night.  So my prayers for tomorrow specifically are for my mom to have the energy needed to sustain our travels.

I already did

I went to check on my 6th grader, Abby, tonight to make sure she was all tucked in and hopefully, on her way to a good night's rest after a stressful day as a new middle schooler.  When she said mama, I could tell by her voice she wasn't ok.  She grabbed me around my neck and sobbingly asked when nanny was going to get better.  And although this question has been asked many, many times by my precious babies since May, it never gets any easier to answer.  In fact, it just gets more difficult.  I told Abby how much hope we have for this new appointment with the doctor at the Cleveland Clinic.  I told her she can't give up hope and that we can't stop believing that Nanny will get better and she needed to say a prayer for her.  Abby said I already did.  

Cleveland, Ohio here we come!

I had took mom to yet another doctor last Friday who gave us his opinion and some tests he thought should be done.  Armed with that info, we went to her recheck appointment with her Tuscaloosa neurologist this morning.  Her symptoms have been getting worse and no relief seemed to be in sight.  Her doctors have tried so many drugs, but nothing has alleviated her symptoms.  Mom's quality of life is at an all time low right now.  And although we have an appointment at Mayo, we haven't been sure how she was going to make it until Oct. 23.  After discussing the recommendations from the other physician with her Tusc neuro, we were completely and utterly deflated when he didn't agree with any of the recommendations.  Tears started flowing.  Tissue handed out.  After discussing how unsatisfied with UAB Neurology and how mom needed help as soon as possible, he asked us if we would like for him to refer us to the Cleveland Clinic in Ohio or Mayo clinic.  We told him about her appointment at Mayo on Oct. 23 and how we couldn't get one any sooner.  He talked of the good results he had gotten from the Cleveland Clinic recently.  We told him we would go where he recommended and could get an appointment the soonest.  Mom's neuro said he would have his chief nurse work on getting us the appointment and let us know something no later than tomorrow.  He is also increasing one of mom's meds and starting a new one.  We left the appointment with mixed feelings.  Defeated.  Sad.  Frustrated.  Hopeful, but cautious.

I had to look twice when the neurologist's name popped up on my phone.  His nurse was calling to tell me she had mom an appointment with the Cleveland Clinic for Sept. 3!!  I'm still in shock, but so, so relieved.  Three weeks is a whole lot better than ten weeks.  Yes, we will certainly take that appointment.  In the meantime we are hoping and praying the next three weeks are manageable for mom.  Praying for her endurance and strength (and my dad's) to hang on a little longer.  Praying for my party of five to get through this without too many bumps, bruises, and scars along the way.

In an attempt to help his Nanny, my sweet-hearted, precious souled son, has been doing his own "research".  Oh, how this broke my heart when I saw it.  We try so hard to shield them from these terrible trials of life, but they know when the ones they love are suffering.

3 good days

Amazingly, mom had 3 "good" days.  Good = less jerking and much better balance.  This happened on Wednesday.  When mom showed dad how much better she could walk, he cried.  Just the day before she was struggling to walk.  She has only had one other good day happened since the beginning of May.  Knowing this we tried to not get too excited, but in anticipation that it might last longer, Dad called me to see if they could take the kids to Yellow Creek for an overnight trip.  The kids haven't gotten to stay overnight with my mom since this started and she has missed them so much, so of course, I said yes.  On Thursday Dad ran around getting all the food, snacks, cooler, drinks, ice, etc.  He did it all.  I met them with the kids and off they went.  Mom had an amazing time!  If you've ever been around my parents when they are with their grandchildren, they ooze with pure enjoyment from just being with them!  My kids are their world and it shows on their face, in their voice, and in their actions.

Brady and I spent the next afternoon with them at Yellow Creek.  Mom was still doing good.  I COULD NOT believe my eyes when we arrived!  Of course, she was tired, , but she still had a smile on her face.  I'm sure Dad was beyond exhausted.  He not only took care of the kids and mom by himself, but he cooked, cleaned, and played with the kids in the water the whole time!  Mom and Dad couldn't wait to tell us how wonderful the kids had been and how much the kids had helped them with preparing food, carrying and setting up the umbrella and stand, applying sunscreen, washing dishes, etc.  And of course, the kids had been very entertaining!  :)  One story in particular they had to tell us about was something that happened at bedtime.  Mom said she was tucking them in for the night when John Brady came to her, took her by the hand, and told her she needed her rest and needed to go to bed.  John Brady took mom by the hand and helped her all the way to her bed.  And then of course, he got in bed with her and talked her ears off until he finally fell asleep!  John Brady was taking care of his Nanny.  Bless his sweet heart.  He has always been a Nanny's boy.  I think he always will.

Brady, I, and the kids took a relaxing ride on the pontoon that evening.  It was such a beautiful evening on the water.  More than usual, knowing that mom was feeling better.

By Saturday evening mom's symptoms were coming back.  Sunday and today have been bad days.  For whatever the reason, she had a few good days and we are grateful.

Appointment at Mayo Clinic!

I just got off the phone with Mayo Clinic and I am happy to say mom has an appointment!  Now, the appointment isn't until October 23, BUT they said we can call every day to see if there is a cancellation. The scheduler said they often have cancellations.  They said to expect to spend approximately a week there.  Mom will first be seen by a doctor in the Consultative and Diagnostic Medicine Department and then will see at least 3-4 more specialty physicians over the course of several days.  I am so relieved to finally have a "plan".  A plan that just might get us the answers we need.  A plan that doesn't involve bouncing back and forth between doctors who look at you and say, "I just don't know", and then run more shot-in-the-dark labs.  Labs that you wait for over a week to hear back from and then it's another waiting game until you have another appointment which is usually several weeks to months away.  It's a vicious and maddening cycle and I think we have let it go on for too long.  We can't look back now.  We are looking forward and praying this is the right path.

Update on mom

My mom is still without a diagnosis.  She's being seen by two neurologists.  A UAB neurologist and a Tuscaloosa neurologist.  Neither one knows what is wrong with mom.  We are awaiting lab results from her July 19th UAB neurology appointment.  Her UAB neurologist is checking her for several autoimmune disorders.  Honestly, I don't know how much longer she can last without proper treatment for her condition.  She has been unable to cook, clean, drive,  etc. since April.  Now she is struggling to walk and hold her body upright without support while sitting or standing.  She gets out of breath when doing the simplest of activities.  Her fine motor skills are deteriorating.  Each day is a struggle.  Physically.  Mentally.  Emotionally.  

We long for a diagnosis.  We long for a name for this debilitating condition.  We long for a clue as to what it is that is taking her from us.  We long for a doctor who can help her.  

Update on me

I'm mad.  

I'm mad that no one can figure this out.

I'm mad that no one seems to want to figure this out.

I'm mad that these doctors, these professionals, don't seem to care that this 57 year old woman is not the person she was just a few months ago.

I'm mad that my mom can't play with her grandchildren.

I'm mad that my mom can't cook.  

I'm mad that my mom can't walk from her bedroom to the bathroom without being out of breath.

I'm mad that my mom can't enjoy her simple country life with my dad.

I'm mad that my mom might be losing hope.  

Most of all, I'm mad that I can't do more for her.

BEYOND FRUSTRATED

Mom is no better.  As of today, her symptoms are WORSE.  I can't explain her movements other than she feels the urge to move and IS moving ALL THE TIME and she is jerking her upper body every 30 seconds or so.  Her movements are present in ALL her waking hours and some when she sleeps.  I've started videoing her for documentation.  She is not getting much sleep or much needed rest and it is taking a toll.  She was seen by a UAB neurologist last week who feels like mom has Restless Leg Syndrome (RLS).  Well, hello!  Yes, she does and we've had that diagnosis since the beginning of May and is on medication for RLS which has been increased many times over the last 5 weeks.  Mom had a follow up with her Tuscaloosa neurologist this morning.  He still has no idea what is going on with her, but he is trying everything he can think of to help her.  He does not believe RLS has caused these constant movements and jerking in mom's body.  He took her off the RLS med that she started in early May simply because there is no improvement, only worsening of her symptoms.  He is also increasing another med that supposed to help with the jerking.  She was jerking so bad this morning I thought we were going to have to take her to the ER.  Also, her Tuscaloosa neurologist wanted her to go back to her UAB neurologist.  So I called to get her an appointment, but the UAB neurologist is out of the country until JANUARY!!!  I've since called her Tuscaloosa neurologist to let him know.  I'm waiting on him to call me back.  In the meantime, I am researching other Movement Disorder Clinics around the country.  This has been on my mind 24/7 for many weeks now.  I've googled and googled.  I've thought and thought.  I've called and called.  I've talked and talked.  I'm so frustrated.  NO, I'm BEYOND frustrated.