Giant steps

I was blessed to be given the "You Rock award" at school.  Means that a student took the time to write about me.  Coming from one of my kiddos, this is absolutely amazing!!

Rachael got her hair spray painted pink for her school's Breast Cancer awareness Pep Rally.

Libby, with Cindal behind, at our Pink Out Pep Rally.  Caprock raised over $1000 to donate to the Harrington Cancer Center.  Wow!  The stands were filled with PINK! 

Liberty on the Lite Gait.  Imagine a time when she could walk without sooo much effort.  It has been way too long since we have seen her take real steps, full stride steps. She was taking giant steps!  Steps forward.....  It was the folks at TurnCenter who are trying this out for Miss Libby.  Hoping the video will work.  If it doesn't it is uploaded on Facebook. 

 

Tomorrow begins week nine of classes in this school year and I feel like I've been hit by a truck- repeatedly!!  We just keep getting back up and going back at it.  The added strain of the newest test in Texas, STAAR, is making Rachael and I struggle more than ever before.  My campus also has new administration which means lots of changes and different expectations.  It seems as if due to the low test scores, everyone is so busy pointing fingers and assigning blame for why the kids didn't pass, that we're not focusing on teaching.  Too much pressure for a test that we have very limited information on. I am surrounding by amazing teachers everyday who are doing the best they can.   We are all pedaling as hard as we can.   Sooo much to do all the time.  We are trying to stay afloat.  I've been wondering why I didn't go for the coaching position or teach speech?  We have to keep focused on doing what is very best for the kids and remembering that they are what are most important.   I just want to teach.   

 Libby's new med for Dystonia, Artane, brings with it some less fun side effects.  This drug dries her body out inside, which has meant some troubles getting enough water into her her.  Another fun little addition are the nose bleeds.  Pulled up at school on Friday to a real gusher!!  "Yuck" and "Gross" are Liberty's reaction.  So, more fluids and cold mist vaporizer all weekend to help ease the drying.  Every day she is so different.  Today she is wiped out and there is no explanation.  No cold front, no hormonal business, no pork sneaking into her diet, no idea.  I am always glad when she has a rougher day and we are at home.  That way I can lay her out flat for some mandatory rest time. 

Had a couple of emails from our WISH Granters and do to time constraints and Libby's need to rest, they are now looking at a cruise to Europe!   WHAT???   Seriously?  A cruise?  With lots of nap time in between this might be wonderful!!  We really hadn't discussed cruises since Libby's experiences on boats has been small fishing or skiing boats and her equilibrium is off. 
My response was "as long as she gets to see Rome" she will be delighted!   I asked her about it, and she is nervous about the thought of a big boat.  I gotta admit, I am too.  How much Dramamine can Mommy have and still be able to function?   Just completely fascinating to look cruises up.  Disney does go to Europe, in case you didn't know.....  Still can't believe this is a possibility.  Still can't believe that my child qualifies.  Just can't believe....

Talking with Rachael and then Momma the Hun, AKA April, last week and I came to a realization.  It is not that the grieving process is completed in one round.  You have to cycle in and out of the stages many times.  This year, as I am dropping Libby off in the ACC room, I feel a sense of disbelief and pain.  I didn't have a child who belonged in there and now I do. I was supposed to be the person who always helped those kids and went above and beyond to make them feel accepted. I was raising my daughters to accept every one and be everyone's friend. Now, I have a Special child and have to rely on the kindness and acceptance of her peers.... There is also the acceptance of knowing that she is loved and well cared for within this group of Special friends. 
There are the late night fears and guilt that can still take my breath away and bring me lower than a worm's belly.  The different choices I could have made to keep Libby safe, the What if's and How come's..... I had been thinking that I should be over it by now, and most days I am.  I have an acceptance of the life ahead of us and the adaptability required of me to keep her healthy and happy. 

After seeing the video of Libby walking on the Lite Gait apparatus, it occurred to me that that is what I need- metaphorically.  I need belts and springs to keep me moving forward.  I am also on a tread mill, not the kind that my middle aged thighs need, but the grief mill.  I take three giant steps forward and fall back- on and on.  As long as Libby keeps taking steps, whether they are the little Mrs. Magoo or giant heart leaping steps forward in progress, it is enough.  It doesn't matter which round I'm currently going through in the grieving process, I'm still moving. 

We have to keep moving. 
Now, I have to wrap it up as I watch Libby get homemade tartar sauce all over herself and the chair.  Must be some really good fish sticks.....lol

Hugs and hope,
ileana

The Baclofen pump trial

Here's how the week went.  Tuesday was my birthday, 42nd, and it was spent in school preparing for Substitutes and getting ready for our doctor visits in Ft. Worth.  We left Wednesday morning and began the trek.  I was so proud that I had found a super cheap motel close to the downtown area.  Sitting at the traffic light, hotel in sight, we watch an exchange between a rather scantily dressed lady and three, uhmm, gentlemen.  We pull in, finally, and it is NOT okay.  I am given the key and head to go and check to see if the non-accessible room is Libby acceptable and watch the lady from before go into the room above us with a couple of fellas.  I came back out shaking my head and Rachael is frowning.  Apparently the entrepreneurial spirit was thriving in that little hotel.  We were able to get out of our reservation and not be charged since we booked an accessible room and none were available.   Luckily we were able to quickly call and find an accessible room in our price range with less "business" happening. 

 

We had to report to the Hospital at 6 am and needed to go by the Apple store to get the iPad fixed.  Went by Apple, and must say wow- wish we had money to burn, and had to set an appointment.  We all had a hard time getting to sleep. 

Rough morning, but we made it to the hospital in one piece. No water or food.  Libby has a VERY hard time going potty in the mornings, it is like her muscles are so tense when she wakes up that she cannot even let the water flow... Of course, before they could get Libby into the Day surgery room we had to have a pregnancy test.  So fun.  They tried to hand me a tinkle cup and I handed it right back!  Amazing how quickly they can get ya a tinkle hat when you offer to let them hold the cup!  

Getting the IV put in- I was ready for the Happy Juice for myself. Sad that they don't offer it for parents as well. :)   The actual lumbar puncture took less than 30 minutes and they warned us that she would be out for a long time afterwards.  This was our fourth LP and we know better.  Libby is hard to keep knocked out.  Always has been.  She was wide awake by 10:00 and they had actually done the LP at 9:00.   When we were able to go back she was a fussy, hungry, sore kiddo. 

 

I usually don't share the pictures of when Libby is miserable because it is too hard.  No one wants to know the icky side of seeking treatment and daily ups and downs.  I had a moment after she was wheeled away for the Lumbar puncture of hating it all.  Hating every minute that her illness has brought her.  Being so heart sick that there are things that my child faces that I cannot take away or make better, much less carry for her.  It is not fair that her body struggles every day and I am strong and healthy and able.  (Although I am very grateful for the stubbornness my body shows- even at my age...:))   I would take it all for her if I could. This is parenting and I have the same feelings for Mariah.  As a mom I would gladly give up whatever I have for my children.  Gladly. 

 

She had to lay flat until 11:00 and then the Physical therapists come in to evaluate how well she moves after the muscle relaxer Baclofen had been pushed into her spine.  They tried to give us a bed pan somewhere during this time and that's a "negative Ghost Rider"... At 1:00 the PT ladies were to return to give the final observations and send us on our way.  We had the Neurological consult at 2:30 and needed time to feed this kid!! After many questions, by 1:30 I am getting Libby dressed and ready to go.  PT came, finally, and we asked to see how her ability to walk is affected.  Picture tieing your knees together with panty hose, lean way over to the left, arms are lose and in full command, feet are heavy like they have lead in them....now walk.  What we didn't know is that the Baclofen into the spine stops the spasticity and takes the muscular tone from the waist down.  It was like seeing John Wayne walking with his knees glues together!  :)

 

 I finally got pushy and asked to have her IV removed and her paperwork completed as we had to get this kid out of the itty bitty area and feed her before her next appointment.  We were cleared by OT at 1:50, raced to cafeteria, shovelled food in and made it to the Speciality clinic by 2:28.  Geez. 

 

After our meeting with Doctor Honeycutt, we are even more unsure. This is the size of the Baclofen pump that we may have implanted into Liberty's mid section.  Then a catheter runs through across her body and up her spinal column.  Once the pump is situated inside the midsection, there is a metal covering that would live on the outside.  My kid would then be robo teen!  They would have to keep her in the hospital for several days to adjust the level of baclofen.  That would be a five day stay.  Okay.  Then we asked about the walking episode.  Dr. Honeycutt said the pump is great for those who are non-ambulatory, but for those who are able to walk it makes for a long battle.  After the implantation, Libby would have to work very hard to build and rebuild her leg muscles to learn to walk again.  Once she regained and retrained her muscles then she would have a more controlled walk.  Much more information and praying and thinking before we can make this step.

Both Dr. Acosta and Honeycutt said that there is no reason that Libby cannot do a long flight.  So, if Make a Wish okays Rome or New Zealand we will just have to plan for jet lag and recuperation time! 

 They also brought in a nurse who is also a patient and has the Brain stimulator's in place due to her Dystonia.  We are not there yet.  The sweet Megan is doing very well and is able to lead a normal life, working and caring for her children, but we are not there yet.  I feel like we need to seek treatment for Lyme before we do anything so invasive. 

Wednesday night we made it back to the Apple store and nearly $400 later have an unblemished IPad for Libby.  I also bought the Apple care insurance just to be safe.  Ughhh.  So much money being spent NOT in the budget...

Driving home was not fun.  A cold front was/is gripping North Texas and Libby was locked up.  Her walk as still sideways and very labored.  We stopped in Wichita Falls to eat and gave her the Clonopin- before and after eating.  This was a meal where every bite was fed to her since her hands weren't working.  Rough to say the least.  Libby's walk is back to "normal" this morning. 

Home Thursday to realize that a cat had been locked into our bedroom and then commenced the bed washing until the wee hours in the morning.  I checked the bank account to realize that we had been overcharged by $160.00 for our satellite bill.  Not happy and not a month where this would be okay.  An angry phone call later and it will be reimbursed on NEXT months bill.  Ughhhh.

I know that there will always be enough of whatever we need.  I know that I will always have enough energy for whatever needs to be done.  I know that there is nothing placed before us that we cannot handle.  I know that I am grateful, always, for Rachael's support and strength.  I am grateful for the chance to be grounded at home yesterday and today due to the cold and finances so that we can recuperate.   Glad to go and learn more, glad to be at home.   

Love and immeasurable blessings,
ileana

http://www.webmd.com/multiple-sclerosis/intrathecal-baclofen-pump   more general information
http://www.medtronic.com/patients/severe-spasticity/therapy/index.htm  From the company who makes the pump.