Anger and fear

The lab results for the awful, terrible disease that Dr. Hottie tested Libby for was negative.  This disease is rare, untreatable and fatal.  Libby matches all markers, except for the skin and rectal biopsy results.    We didn't know which way to pray- make this test be positive so we have a reason behind her steady decline? Or, a negative so that we continue to not know why is underneath the Lyme and is causing her slow and steady decline.  

Neuronal intranuclear inclusion disease is not the one. As of now, the doctors have no other ideas or tests to run.  So, we will continue to plan for the DBS.  

The ceiling of Grandma Linda's patio is collapsing due to a leaky roof.  We were preparing that room for the upcoming fix it construction when  we got the call dreaded by every parent. Mariah had been in a bad car wreck.   (We took on a third car payment two weeks ago so that she would have a safe and reliable vehicle.) 

She is okay, her passenger is okay, the other driver is okay.  The car is not okay. I am rotating between ugly anger, absolute fear and immense gratitude.  We had a 40 minute drive to the crash site, during which I released a torrent of colorful words and desperate prayers, while knowing only that she was coherent.  The ambulance pulled away as I pulled up.  

I grieve daily over Libby, in a constant cycle.  Continuously grieving one child is awful, facing the loss of Mariah is simply too much.   Fear and anger are terrible bed fellows. Terrible.  Grateful she's okay, not happy at the risks taken- even accidentally.   

Mariah is okay. She's sore, has a pretty good knot on her head, CAT scan was normal, but she'll be sore for awhile.  She'll be home with us for a few days; if I don't smother her with love or slap her a few times.  

Parenting is amazing and it's not for wimps. Fear and anger may go well together, if they're spiced with gratitude.  She's alive and Libby has another day and hey, never claimed to be any good at this parenting business. And, I am much more grateful than anything else. Be a blessing....

Love and hope

Ileana

Libby proofing the house

So, we had made the decision to make some changes to the house to make life safer and easier for Libby.  This included having the bathroom redone. 

Say goodbye to the bathtub where I loved to soak and bathe the animals.  Also, the surround that was there was added by Rachael's dad, Terry and us girls. 

Enter the walk/roll in shower.  After another terrible shower with Libby several weeks ago, I left a year filled message to our caseworker for MDCP(Medically Dependent Children's Program).  Showers with Libby are the worst part of our day. For over a year, everyday has ended with tears and screaming- and Libby doesn't handle it so well either!  Now she has a more accessible shower area.    

Above Access guys Delano and Chad were here for four days and replaced the shower, the bathroom floor, and widened the bathroom door. http://www.aboveaccess.biz/1.html.  

They managed to get us on the schedule

and get the work done thoroughly and quickly. 

Before they arrived this week, we ripped the 

carpet out of both bedrooms.  This will

enable us to get Libby in and around easier.  It

also allows for better cleaning.  Libby hates 

it, but we've promised her a super cute rug. 

Yes, these are the original floors. They're cleaned, 

stained and polyurethaned. We were all a little high

for a few days, but I'm very happy to have the

 work done. I've also mostly finished her room. 

Parts from the prayer kneelers we recycled, 

sanded, painted, and added hooks. 

I painted her desk, made by Rachael's grandpa, 

the chest, found,sanded  and stained whole I was 

pregnant with Mariah and the toy cabinet we bought for 

girls.  We added new hardware and there ya go.

Now, we'll just be getting her used to the changes

Like any of our changes are small. 

"Archimedes" given to Libby by Cassie Foster, 

artist extraordinaire!   More exciting things 

coming from Cassie in the future! 

We took Aunt Judy out for a meal and to enjoy the 

First Friday Art Walk.  We had a fabulous time. 

It was nice to get to hang out and relax. 

Happy birthday Aunt JuJu!!

Blessings and hope

Ileana

Vent

I am going to have to be brutal for a few minutes.  I need a break- a serious break.  I feel like I've been fighting for Libby's life and worrying about Mariah's for so long that I don't really care about mine anymore. I hold so many of these types of thoughts in that if I ever start to let it out, the steam may burn!  Maybe a little vent every now and then will help.

At this moment, I am okay.  Libby slept through the night and has had her breakfast and round one of meds.  Rachael gets to sleep as long as needs since night before last Libby had her up four times.  

I need a break. Rachael needs a break. Rachael probably needs a break from both of us. I have caught myself saying more and more that I am not the parent I'm supposed to be. My tolerance for Libby's whining and ability to have a perspective on her needs is diminishing daily.  My stamina is much lower.  I am more and more disconnected from my own feelings and needs.  I'm no expert, but this isn't good. 

We need a break. I am having more jealousy and anger towards other grown ups who get to go to the movies, to eat, to grocery shop, to simply sit and talk with their other half.  Serious jealousy.  (The mean girl in my head responds to Facebook posts..."I'm sorry, you only got to see one movie this weekend and managed to eat out together twice.  That must be rough.  We spent the weekend taking care of Libby and the fifteen other areas."  

Our relationship account is very low in funds.  I keep taking and taking from Rachael and it feels like I can't give anything back except for heartache, increasing needs and exhaustion.  Why would anyone chose to be a part of something that is so draining and heart wrenching?  We have given so much away, what is really left? 

Since before November of last year we have had a total of 40 hours away.  That was divided into two days.  There is not a  time that I don't wake up in a frenzy of anxiety to get her meds to her and take care of her needs. My patience seems to be dwindling, just when Libby (and Mariah) need more.  

I'm not saying all of this to get sympathy or a torrent of comments about how I can take advantage of friends to get us some real respite care.  I'm saying it because it needs to be said.   I am human and I am still somewhat young and at some point I would like to enjoy something again without the guilt.  (She says feeling guilty as she types this.)

I'm not saying this to get the great slap of a comment that I made the choice to have this child, I can simply deal with it.  Yep.  Got it.  That kind of attitude toward parenting is barbaric.  Every parent needs a break of some sort, that's why it takes a village.  (Remember, Libby even goes with me to school.) And, too many of our close family have health issues and Libby requires a higher level of physical ability.  (Part of why we work out so much and eat so healthy.)

Now, if I post and share this, family and friends will stop asking us for, or allowing us to help. Too many already try to "protect us", which is crap.  We are tough.   But, we need a break, before we have given too much of US away. 

If I seem pissy, this may be why. If I seem exhausted, this may be why.   I worry that I will lose my mind and be found in a fetal position, in a small corner, eating my weight in ruffles.   Or I'll go postal and start telling, the seemingly selfish people around, off.   Ruffles may be the meltdown of choice. 

I'm sharing because we are not alone.  I mean, we have support and we are grateful so we are not alone. But today, we ARE alone.  No one is coming to help today.  Every bite Libby takes, I'll feed her. Every pill she needs, I'll give her.  Every trip to the restroom involves me. Love this child and love that she's mine, but I need a break.

We are not alone.  Many caretakers are in the same boat.  People want to help, but they have their own lives. They want to help, but they aren't sure how or they are overwhelmed by the needs of this child. The longevity of couples who take care of special needs children is not good.  Divorces already happen all too often. You add the stress and heartache involved with Libby and the numbers go up even more.  We need to make some serious deposits into our relationship account.   

I have to find a way to save myself and my relationship.  I have to.  I need a break.  

**Hopefully, no friends or family will be harmed in the post.**

 

Home

We are trying to get out of the hospital on Friday and leaving any hospital is always a hassle and a gamble.  (Keep in mind we have an appointment at 1:00 with the pain neuro doc, who is not IN the hospital.). Liberty's last treatment began at 8:00 am.  Around 10:30 Libby's IV died after four days of hard work.  This meant another IV installation, which added another thirty minutes. It's 12:40 and discharge papers have been signed and I HAVE them in my possession.   I know we'll make our appointment, but this is cutting it a little close.  

Libby has now had five days of IVIG treatment and we may not see the advantage for a week. Hoping that her Dystonia settles down.  This is how the thinking has to go. 

1. Is this treatment/procedure terribly invasive? Do the risks outweigh the possible gains?

2. What is her level of discomfort going to be during the proposed treatment/procedure? 

3. Is their data to show that the results can be measurable?   

4. If we don't try this treatment/procedure, will we regret not having exhausted every avenue?  

There ya go, so we tried the IVIG and not too bad,  so far.  It's now Saturday morning, 7/20, and she's a fussy, tired, locked up mess, but she's cute and she's home. 

I am not happy about these skin biopsies and where they are placed and how icky they are.  That's all.  I am not happy about these at all.   We won't know the results for up to four weeks.  That sucks.  Long time to seriously worry and prepare myself for these life changing results.  If these results are negative, then we are back to square 500,291!  Yes, she has Lyme, but there has to be something more going on.   I just wish it would go away and leave this child alone.

Mariah now has the key

To her very own place.  I cannot shine what this feels like for her.  She is doing something I never really did.  I did live alone, but there was always a little one involved.  She is completely her own and I hope and pray she relishes this opportunity. 

And, she's living in her very own secret garden! May she take the time to heal herself and focus her twenties in the beautiful life she has now and ahead of her!!  Proud mama!  

It's now Friday and we've been home for the whole week.  We've managed to wear ourselves out every single day.  We've mowed, cleaned, organized, made it to therapy, ripped carpet out of both bedrooms and will be sanding and finishing the rooms today.  I cannot explain the sense of urgency I feel.  I just know that in many ways time is limited. I'm nesting and both my eggs are definitely hatched.

Our bathroom redo has been approved and the walk in shower for Libby will begin being installed next week. I cannot continue the ugliness that occurs every single day during Libby's shower time.  That is truly the most dangerous time of her day.

We bought another new car and Mariah will take over the Tucson.  Knowing that she is in a reliable vehicle helps the guilt/worry/pride cycle. 

7/26/13 

And by the way, if this last week has been any indication of Libby's reaction to the IVIG treatment, we won't be doing this again!  She has been in lots more pain, locked up, pissy, whiney, and a whole bunch of yuck since we returned. Not fun!  

Part 2: Treatments, Tests and Theories

There are quite a few things in the works with the testing and theories the docs currently have.  We have made it through day two of 2 1/2 hour IVIG treatment and no discernible reactions as of yet.  This treatment has helped with Dystonia in the past, so it will be great if she can get some relief.  The IVIG involves infusing blood plasma into her stream. 

 

Libby woke me up before 5am with pain and general complaints.  Docs are interested in possibly starting her on another drug, stronger relaxant, to help her sleep through the night.  They keep adding stronger meds which are really just another Band-Aid for her increasing symptoms.  Whatever it takes for her to be as comfortable as possible, with as little drug interactions in her system.  

 Tomorrow morning Libby will be sans food, which makes for a "happy kid" until after her procedures.  She is having several skin biopsies tomorrow and she will be sedated for at least one.  The illness they are looking into is intense, but it sure checks off many of the boxes this sweet girl has.  I'll be able to say more when I know more.  I don't want to trigger an avalanche of panic.   Faith.

 

We had a battle Day one with the pharmacist on this floor, it wasn't his fault, he just didn't get the memo.  Many health professionals have a protocol set up because caretakers and medical employees have taken advantage and stolen, this means something to me that I find memo-able.   Here it is: I had to hand the many scripts and vitamins over to the pharmacist.  This included taking all the pills out of her pill organizer, which takes forever to plan and organize and longer to place every pill back into it's original container.  I had even brought the pill bottles and the most current scripts with us.  But, we still had to hand everything over.  They even wanted to take the melatonin and the stool softeners away from the family pill bag.   **Here's the issue, besides the obvious control issue, when Libby needs a rescue med, she needs it immediately. Not after the 15 minutes it takes for the med to be ordered and the additional 15 for it to be sent and then, the 15 minutes for it to make it to her mouth.**   I felt like I was not being trusted to be a reliable parent.  I even asked exactly what kind of credentials a parent had to have to be able to give their child pills.  There were a few minutes where I wondered if Rachael would actually yell and completely lose her cool.  We really just wanted to keep the rescue meds with us, but we played nice and have been surprised and impressed by their vigilance to get Libz her meds on time.  

 

 

 

Day two of our hospital stay and we have escaped to the great outdoors.   We did parts of a playground workout and played with the kid.   She was not amused when we tried to make Sparkles fly. 

Look at her go!!!

This is right after she got the precious bear back, she is clearly rubbing the rescue in to Rachael.  :)

Getting a little work out in.  We found a few nice, long ramps to push Libby up and then down.   Gotta tell ya it's a great workout that goes right along with the Pee Squats.   Every time we go to the restroom we are doing either ten squats or ten vanity push ups.  When time is short, these little tricks help me feel a bit better about not being able to work out. 
**If I were going to design a children's hospital for Chronically ill kids, I would have a workout area available for parents to release the steam.  Just saying. (And I might add a wine cellar as well.)

These are the little cards that we are handing out as we go. Anytime Libby wants something like a new stuffed baby, she has to find one that she can donate.  Or, I'm letting her pick a family out while we're eating who looks like they need a blessing and we try to either pay for their meal or leave a portion of their meal paid for.  It's the anonymous part that's so fun and we leave the card. 

Mariah is very close to moving into her own house and I am excited for her and nervous.  Living alone is something every young person needs to do.  BUT as a mom, it is in my job description to worry and nag about planning and budgeting.  It is a joy to have the chance to be her safety net as much as I can.  Enjoy sweet young lady!!   Budget time and money and keep your life and surroundings clean. There's the inner mom releasing. 

Be a blessing!  

@@@@@@@@@@@@And by the way, one of Libby's skin biopsies is actually a Rectal Biopsy.  Anyone wanna tell her about it for me?  They are going to sedate her during, wish they'd knock us out too!
 Gotta say,  "Eeeeeewwwwwww!   You're gonna do what?   Get the skin from where?? EEEEWWWWWWWWWWW!!  Coooooooooooolllll!  MY POOR KID! Eeeewwwwwwww!"

Treatments, Tests, and Theories

On Saturday, we were able to meet Thomas Jefferson Davis.  Kim and Jeff have been our closest friends for years. They have been with us through rain and shine: we judge time periods as before we met them and after.  This baby was greatly anticipated and long awaited.  Knowing this hospital stay was coming up I was worried that we would miss his entrance to the world.  In perfect Kimberly fashion she delivered beautifully and  calmly.

Jeff has been the reference for the kind of man we told our daughters to find to marry. Libby was in love with him for years and after Kim and Jeff married it took her awhile to accept that he really was Kim's.  Kim has been our example of a strong woman, who gives her all to everything she attempts.  Together, they are a great couple, and will create a beautiful family. Libby has already said that this baby boy will be a welcomed cousin and that she'll show him around the fort. Words cannot express our love and respect for these two and their impact on our lives.  Congratulations Kim and Jeff!
Love and excitement!!

We are on our way for a full week stay of treatments and tests at Cook Children's. Doctor Hottie, aka Dr. Acosta, Libby's name for him, has a list of tests to run and a treatment to try.  In the past three weeks she has gone only two days without her Klonopin.   Some days she is so locked up that it takes several doses and extra pain meds.   Multiple nights getting up with her has also returned.  Maybe we can find something that will help.  Maybe....

We will also be trying out the IVIG treatment, hopefully discussing and finalizing plans for the Deep

Brain Stimulators.  Lots of questions and info coming.   Strangely, I have a peace about the DBS. After some discussion Libby said she wanted the surgery if it will help her move.  Maybe...

Professionally, I've received several hard lessons.   Although I feel that I am ready to leave the classroom and spread my wings, I haven't found the position that needs me.  As with any disappointment, I worry that I am underestimated due to my commitment to Libby.  For the record, I am more focused and driven because of her.  I have become MORE because of her, not in spite of her.  I'll continue to work hard and trust that I'm where I am supposed to be.  I know that amazing things happen when I trust that I'm doing what I need to do- where I need to do it. 

Libby asked for her new journal this morning before we left the house.  She had a story to write.  I miss being able to read her stories.  She worked very hard at her story for the first 2 1/2 hours! When she was done she told us, laboring with each word, that this was her Lyme disease story.  Damn, wish I could read it. Wish I could get into her head and really understand what she's thinking and feeling.  My theory is that Libby probably knows exactly how to help her, she just doesn't have the words and/or the ability- yet.

Hugs to Mariah and my aunt Judy.  They are attempting to clear out the extra bedroom at my grandmother's house.  Judy is a saint, for many reasons, but currently she has made a commitment to live with my mother and my Grandmother and take care of them.  This is a helluva way to spend her retirement!  She is doing this partly because Libby has taken so much of my time and ability away from  helping take care of my mom and Grandmother.  Judy is sacrificing so much to be here and to get to spend this time with Grandmother. I admire her more everyday for her fortitude and to use my Aunt Beverly's term, Judy's  grit.
 

Mariah continues to find herself at crossroads.  She is redirecting herself and forging a new path.  I know she will be fine and have faith in her amazing abilities.  Much love child and know that I love you immensely! 

My motto for Libby since this year began has been to be a blessing.  We are all embracing this.  

Be a blessing and be blessed. 

Will update once we see the Docs tomorrow. 

Visits

Sparkles was being attacked by the giant

Lego Loch Ness! 

Fun outside if Cook Children's.

 

Keeping all of us entertained can be challenging! 

New Flip Side, teen area at Cook Children's.  We had lovely naps waiting between appointments.

Ft Worth botanical gardens, beautiful and well worth the visit!   And free! The paths are mainly accessible and the heat was tolerable.

Dallas World Aquarium is expensive, but it is so beautifully put together.  We had an amazing time!  I can't wait to go back there!  Accessibility issues only occurred a few times, so a B+.   The noise level was high so if over stimulation is an issue, ear plugs may be needed.  

6th Floor Museum at Deally Plaza was a personal treat and it is right around the corner from the Aquarium.  You may not know it, but I am a JFK fanatic!  I loved being able to touch history on such a personal level.

The first appointment, on June 12, was with a Pediatric Pain Specialist.  Thus was a special staffing within her specialty. She never asked for Libby's back story, she simply asked the amount of Libby's pain.   Libby is beginning with a low dose of pain killers given as needed.  Then we played until time for her MRI.  We expected to see marked changes commiserate with her physical changes.

  June 13, appointment with Dr. Acosta. He was not happy with one look at her and reviewed the MRI.  Surprise! There has been no additional atrophy with the damaged areas if her brain.   

There is no reason, based on her MRI for her severe increase in spasticity and other symptoms.  She has reached the limit prescription intervention of her spasticity.  We can continue to increase her current meds, but that will also increase the side effects.   The extreme amount if increased spasticity can and is doing permanent damage to her joints. At some point her joints will lock and will never release again. We have a possible future with a very pretty pretzel.

 

What's next? 

1. We increase her sinemet- her Parkinson's med.

2. We continue to try out the pain meds to see if they are affective.

3. We have a week tentatively scheduled to return to undergo IVIG therapy.  This is a "Hail Mary" for her body.  We know there are some risks involved with this therapy, but when faced with the alternatives, risks seem less daunting.

 http://abclocal.go.com/kgo/story?section=news/health&id=5749369

 

https://www.unitedhealthcareonline.com/ccmcontent/ProviderII/UHC/en-US/Assets/ProviderStaticFiles/ProviderStaticFilesPdf/Tools%20and%20Resources/Policies%20and%20Protocols/Medical%20Policies/Drug%20Policies/IVIG_policy.pdf

 

  4. We begin the prayerful countdown to Libby getting the IBS or DBS, Deep Brain Stimulation, installed.  Yes, it is scary. Yes, it is another bandaid- we are almost out of band aids and no one can point us to an actual treatment.  The main risks are strokes and infections. They can now place the stimulators in one area that will help with the spasticity and the dystonia.

We will be looking at getting the initial implants in the fall and having the unit battery packs and activation over the winter.  Whatever it takes. 

http://www.mayfieldclinic.com/PE-DBS.htm

When a top rated group of neurologists discuss your child and say, "Hmmmm, well isn't that fascinating?  She is a puzzle......" it's not a good thing. 

Let us not forget that we have a beautiful 22 year old who continues to pave her own path.  I am blessed by her in many ways and I hope she knows how proud we are of her and how beloved she is to us!  Libby is all too often the squeaky wheel and so it is vital that Mariah know how important she is to us!   

While friends and family alternate between digest and freak out, Libby says she'd do whatever it takes to be able to move again.    Have to allow room for her wishes-Just a little food for thought.  Besides, I've never had a Franken-kid.