Wrapped up

We were finally able to celebrate Christmas with the family. Libby sent her letter to Santa letting him know that we were putting the big day off until Jasmin and Xavier were back with us.  So, December 29 was our Fake-mass. We kept the whole tradition alive, friends and family are invited to a huge food-filled feast.  Everyone is invited to stay the night and wake up as a whole family unit to open presents.  The rule is that Christmas morning, all gifts are passed out and then in our somewhat circle we wait as each person unwraps one gift at a time.   This way we all get to share in what the gift is and how excited the recipient is! 

Notice the stacks of gifts as each one waits to begin.  Liberty had already waited for several extra days and I was worried that we might have a princess style melt down if the waiting continued.  We were not able to buy very much and did many homemade gifts this year.  I was very impressed by my sweetheart.  She was excited for her little cousins and their gifts and was appreciative of her own.  This is huge for us as we have been battling with a spoiled attitude, which I will not tolerate.  I know she deserves the world and more, but she needs to be thankful for it!  Liberty made me very proud of her kindness and her easy acceptance of waiting for Christmas.  She told me she wouldn't want Christmas without her cousins and to me that was the sweetest thing ever. 

Kim and Jeff Davis were able to join us and it is always amazing to spend time with them. Being around Kim and Jeff is a treat and I wish that we were able to be with them more.  They have many amazing changes coming in their lives and it is a gift to have the chance to be a part of their lives.  Rev. Belle and Carol were also able to join us.  Rev. Belle remains my spiritual mentor and I find myself just needing to talk to her, to touch base.  I appreciate these people so much and am grateful to know them.  Jamie, Jennifer's best friend, also joined in the festivities.  She has become another important part of our lives. 

Mariah and Bobby, plus a couple of friends, were able to be with us.  My big kids are just nice people.  Bobby fits right in and we love him.  He and Mariah are great together.  I must say that at the rate in which our crew is growing we are going to have to add bunk beds, tents, or we'll have people sleeping in their cars!  I brought up the idea of taking over several rooms at  a hotel in Amarillo that has a restaurant attached to it to make life easier.  As we were will still straightening up at 2:00 pm, it seems that a really good idea.  

 

I was filled with joy throughout the afternoon as I reflected on the heart felt gifs that were shared. The kind and thought-filled ways in which our family and friends were able to share their love is inspiring.  I am not a fan of lots of material things and this was all too perfect for me.  Life is not about more things, but about more love.

 

Libby waiting to head home on Fake-mass day.  She was locked up and super tired.  Major changes in her schedule make life so much fun.  When we know there is going to be a change, we start days ahead telling her of the upcoming change. The changes in weather cause her body to react in that sometimes she can't even move.  More and more she is getting what I call "T=Rex" hand where her right hand isn't working.  Not fun.  This kid should have at least one hand that works.  Here's a scary progression, her chewing and swallowing ability are also becoming more challenged.  Looking into different ways to feed her that are within her dietary guidelines. 

 

Liberty had asked for a baby doll and coloring books for Christmas.   We have been encouraging her coloring as it helps with her motor skills.  This princess/baby doll stuff is out of my league.  She has never really been interested in baby dolls before as she has always been into her stuffed animals and Lego's.  Now, she wants more of the typical little girl stuff.  For her sweet 16 birthday party this next month she wants a princess party.  I have taken flack for allowing her to have these somewhat little girl things, but when possible she can have what she wants.   My child has been regressing for several years now.  Part of my child's brain is not working any longer, she lost these parts before the age of 12.  If she wants little girl stuff for her Sweet 16, then so be it.  Unless someone can find a way to grant my wish and bring the parts she lost back, then a baby doll and princess stuff she will have.  Please know I am not enabling her decline but her happiness where she is and trying to slow the regression.  (Yuck, really don't like the whole princessy stuff...).  And I am not fussing, just addressing publicly what has been said to me. 

 

Tomorrow begins the new year.  I didn't have any goals for this year other than finish the Master's program and survive.  This year, I have a list, and much of it is centered around self preservation.  I have been on fight or flight response for too long.  I have been racing from one person's need to another without thinking.  The complete exhaustion I have been experiencing is not okay.  I am going to have to prioritize to keep myself sane.  Other people will have to step up to help with some of the responsibilities I have willingly and lovingly been taking care of.  Promises that have been made to us are forgotten. My life will become more focused on taking care of us and both of my children.  I keep giving myself away and have not saved anything.  

 

Life with Liberty is a marathon and I have been running it as a race.  I have to learn to pace myself and to stop waiting for joy.  I found this quote several weeks ago and it has struck a chord with me-"It could be senseless to go on waiting for a joy, when joy was on the doorstep, as time hurried by"  T.H.White, The Once and Future King.

 

I will be better at enjoying more and planning/cartaking/ stressing/ schedule squeezing/ guilt carrying LESS.  I will try not to be as wrapped up in so many things that other people could take care of and focus on what is most important.  I will stop waiting for joy and simply open the door to the joy that is waiting for me. 

 

Love and hope for 2013, the year I am calling the "Year of Yes".

"Breaking"

Yesterday began our Holiday break.  Two weeks of blissful napping and eating and napping and eating.  My goal is simple, to try to get enough rest so that the bags under my eyes go from being bags that I would have to check- to carry on bags!

This last month we have attended Jasmin's Holiday show.  I was super proud to see our little doctor doing shining and getting past her shyness!  She is a natural beauty that has a light in her that cannot be denied. 

We also made it to Liberty's concert which is a feat in itself.  On nights when we have something going on in Amarillo, that means a race home, usually to eat and change, and then a race 38 miles back.  Even if the event ends by 8:00 that means that we are off of our night time schedule.  I have been knowing to give Libby meds as we are getting her into the car to head home.  It is always an adventure, but doing it all in a loaner car that is not exactly Liberty proof makes life even more interesting.

Update on my lack of vehicle- I don't own one.  My car has been declared totaled by my insurance company and the gentleman's insurance is making an appointment this week to make their determination concerning damage and repair-ability.  I am now at a standstill waiting and no car of my own.  I finally consented last Friday to get a rental, only because the other insurance was paying for it.  I just could not justify paying $20.00 a day when I had a loaner which was working just fine.  

We have spent a little bit of time looking around at cars and I know that  I need something slightly lower than what we had.  Getting Libby in and out of the car can be a nightmare, an absolute nightmare.  Some mornings it is all I can do to not completely break down with Libby as she is stiff and not moving well and I am not fairing much better!  So smaller it is, but not too small.  Because of the distance and the weather that we are capable of having in the High Plains, a vehicle that is able to handle adverse weather conditions is needed. Really ready to have this whole thing over!  Without the guidance of Bernard's Advanced Auto Collision, I would have signed over my rights within the first week and been out many, many thousands of dollars. 

We have to have a car that has a wide opening in the back seat to get Libby in and out.  The rear seats have to be adjustable and have the ability to lay partially flat to carry massive loads.  Have to have a middle console so that I can prop Libby up when her left side gives up.  Hoping credit will hold through the coming process.......

Medically, we have attended two appointments with Dr. H.  Libby had complete blood work done and received her scripts for new leg and hand braces.  All her blood work is good, very good.  Liver and thyroid are great.  Her vitamin levels are finally within normal.  Her blood sugar levels are down to within normal and she is no longer showing the progression towards diabetes- THANK GOD!!  The only issue was that her milk protein levels, casein, are still very high. This is not okay, especially since we have been rigidly dairy free for several years.  I am now reading labels and checking for the hidden dairy in everything. 

Dr. H. agrees that it is a good thing that Libby is has more sensation all over her body, since for so long she didn't feel much of anything.  Now, she hurts.  Her legs, her knees, ankles, hips, arm, wrist, head, ... hurt daily.  He is setting up a referral as soon as he finds a neurologist who knows about pain management.  We know, assume, that the pain is from her brain damage.  I need to know where it is coming from and how to control it without further clouding up her thinking.  It is a good thing that she can now feel more, but this child should not hurt.  No child should hurt.

Our Christmas celebration has been postponed because Jasmin and Xavier will be in Tulia with Kent.  We are actually celebrating on the 29th.  This means that we get a full week to sleep and eat. Then, I'll try eating and sleeping.  Here is the reality of my napping, which is much less dignified.

There are always moments during a semester when I have a few doubts as to whether or not all the work is paying off, but this semester I had thoughts as to whether or not I could take another step.  I made it through several days of focusing on each minute, each student, each class, and taking one step at a time.  The added stress and requirements of this year are taking their toll and I know that all teachers will come out stronger because of it, but the toll is hard to pay for me.  Some days, I felt as if I were breaking from the outside in.  But, you get up, go, do your best, plan, plan some more, fail sometimes, plan again, and try again the next day.  Libby and all my kids don't need me to be anything other than willing to try again.  It's okay to break, as long as I can pull it back together. 

Uh, so now I need a nap.  I will update as we get further into the resting time.  Now, to work on my goals of eating and sleeping.  Blessings and hope....ileana

Teaching together

Rachael has seen me teach aerobics, swimming, religious classes, disaster preparation and English Language Arts.  She has been along to help with me with so many educational endeavors and I have always loved having her there to cheer me on and guide me. We have taught workshops for other teachers, but never kids. So much of our lives is spent brainstorming, discussing, whining, and preparing for our roles as teachers, but we have never actually co-taught a class of adolescents. I had never seen her in action with students and I must say it was a delight.  A quiet authority, laced with an amazing sense of humor, she definitely has a presence in the classroom.  When I asked her to help at Caprock's EOC Rally before the retest on Monday, I had no idea the impact seeing her in the classroom would make on me.  

 

Saturday morning teaching means kids and teachers are even more tired.  The upside is that the kids who were there are kids who really want to pass their test.  Rachael was introduced as a teacher from another district who was there to help.  The Caprock kids didn't even blink, they just went right on and were willing to learn!!  Just shows the adaptability of our kids. 

 

I share so much of my life with everyone that I thought I would share this reflection as well.  I have often said that Rachael is the analytical side of my brain and seeing her in action may make me change this thinking.  It was a gift to witness great teaching first hand and I am grateful we had that opportunity. 

 

Lisa Lindsey was also there in our session and she completed our group and made us an amazing trio!

Our students benefitted greatly from her expertise.

You can never really KNOW someone until you have been in the trenches with them and seen how they really are with the students.  I love being able to actually share teaching with people who I already admire.

 

Rachael, as a side note, I am certain that Terry Collins smiles down everyday from the great classroom in the sky as he watches you teach, Rachael.  You are an amazing legacy to your father, the teacher. 

 

Have your kids hug their teachers, this is a very hard time to be an educator.

Giving of Thanks

Miss Libby in LOVE!!  Libby and her football boys on the Tuesday before Thanksgiving.  She is totally blushing!  Love these boys and am very grateful for their sweetness in our lives.  These boys graduate this year and I will be a mess, I'm telling y'all now, I will be one proud Momma Jenn!

Libby and her class during their amazing Thanksgiving feast at school.  April Wolterstorff ACC teacher extraordinaire had combined our Culinary Arts and Floral Design to put this meal together. It was a beautiful gathering for the families of these kids and the exceptional guests of five of our football team really made many of the kids happy!  The amount of love so many of the Caprock students show to our special students is amazing.  I am grateful for these kids and the many others who are so very kind. 

Bobby hanging decorations at Grandma Linda's.

Thanksgiving meal at our house.   David and his girl friend, Mirtha, Mariah, Bobby, Jennifer, Caebhin, Xavier, Jasmin, Grandma Linda, my Mom, Aunt Judy, Grandmother and our three were all able to share in our giving of Thanks and turkey!

In the background are my Grandmother (96), Aunt Judy, and My Mom.  Xavier, the Ham, in the forefront. Goofball....

Jasmin and the tree Friday afternoon.

Jennifer dressing up the tree!

Libby with her serious face.

Libby took great care to decorate her area very carefully. 

Helping with the crocheted popcorn.

Mariah and Bobby, love my kids!

My Thanksgiving ouch....THANK GOD I was alone in the car. I had just driven Mom, Grandma, and Aunt Judy back to Amarillo and was headed home.  An older gentleman pulled out right in front of me.  It would have been very, very bad if I hadn't swerved over and popped the curb- after hitting his back bumper. 

Lights at our house. 

Xavier and the tree.

I am so thankful for getting a chance to be home for the entire Turkey break.  This is the first time in four years that we have not spent at least part of the time in the hospital or driving back and forth.  Thanksgiving is not a resting holiday as it is time to clean and cook and hang out with family.  Not to mention getting our house and Grandma Linda's decorated for Christmas.  Plus there's the outside stuff, which I really love having up.

 

There are so many things to be thankful for and the greatest of all are our family relationships.  We are very grateful for our family and friends for their continued love and support. 

 

Libby has been even more challenged lately and with that comes more of a pull of on our energy.  It is now December 1, and Libby remains very locked up and has a long list of complaints.  We have had a an appointment scheduled on December 3 with Dr. H. for awhile.  We are going in to get scripts for new braces and I am going in with a list of questions and issues.  Hoping that he can help up get her straightened up somewhat. 

 

She is also finishing a very heavy menstrual cycle, which we have been grateful for.  Many months her body tries to cycle and just can't, so when it happens, we are grateful.  Healthy female bodies should have cycles.  Hoping that her body will begin returning to a semblance of normal.  We just have to pray that this current body reaction is not our normal. 

 

We remain grateful for today and hopeful for tomorrow.  Much love....

 

The Wish

It's official!!  Liberty has been granted an European cruise!!

Libby and her Make a Wish Granters, Jenny McDaniel and Trish Brock, in room 1406 changing a life! 

At 4:30 Wednesday afternoon, I received an email asking if Libby's Wish Granters could meet us at Caprock.  We wrangled around class times, so that neither Libby nor I would miss core content time.  The time was set and Libby was coming to my room at 11:00.  Thursday morning our head secretary and conqueror of the world Misty came to my room and said that Make a Wish had called and were wanting to make a very big deal out of this presentation.  There is no way that we could have disrupted so many classes in such a short amount of time.  No way.  I thought it would be just fine to have the announcement in my classroom with my students and a few others who were able to get away.  Special thanks to Terri Morgan, Mary Larkan, Deborah Topper, Dr. West, and many others who came crashing into our classroom.   Extra special gift of the Caprock Cheerleaders for coming in to cheer Miss Libby on!!  Thank you.

This is Libby on our way home, fighting the balloons while trying to listen to our new audio book.  We were both saddened that with the short notice, we were not able to have any other family there and Rachael, in particular, was missing. 

So many questions still....where exactly are we going?  How long do we plan for?  Where- again??

Do they serve iced tea in Europe?  Can I get some ranch?  What about the kid being dairy free?  And the BIG problem, guess I better buy us all some underwear since none of us have more than 5 days worth of undies!!  lol. 

We have looked at the whole Passport process and wowza it's a lot of stuff to do.  They are VERY expensive and I have no idea how we will pay for them.   It has all been very overwhelming, we are trying to wrap our brains around it.  So much and so grateful.

I have heard the following...
"Man, I wish someone would give me a cruise"   (Man, I wish someone would cure my kid!)

"You all deserve it so much!"  (Every parent deserves a break, I would never ask for what I deserve- that could be UGLY!!)

My students and co-workers have been super sweet about the whole Make a Wish thing.  Many of my kiddos have told me they now get that the money they can give to Make a Wish really does matter.  That is the very best of it!  If my students have now learned the importance of giving to others then I am truly happy. 

Many thanks and prayers for all and a heart full of thanks-

Happy Thanksgiving

Halloween Carnival

Not a whole lot I can say other than we all had a great time.  The extra help of the All School Boosters eased the loss of the Band Boosters.  We had an amazing turn out and saw lots of really cute people.  Grateful for our little community and all who make it so special. 

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.

Beginnings

Liberty and her constant snuggle companion Jar Jar Binx.

Liberty and her beloved Yvonne Perea at our first introduction to Honey House.

One happy girl after the sophomores won the Homecoming Spirit Stick!

All three kids lounging in the super cool lawn chairs. 

I am not sure I can begin it all again.  The old Blog is gone.  I have been emailing Google back and forth and they are trying to find out what has happened.  It just disappeared.  Almost the entire duration of Liberty's saga, all of our trials and amazing victories are gone.  I am just not sure if I can repeat it all. 

And today, this week, we have much going on.  We leave Wednesday for a double appointment at Cook children's.  We are going to for a Neurological consult for Brain stimulation and a baclofen pump trial.  I am still not sure about either.  I feel okay about the baclofen pump, having the meds going straight into her system may help with her brain fog. The brain stimulator is another thing altogether. 

Liberty's Make a Wish wish is still unsure.  She has stuck with Rome being her first choice, but being unsure of the amount of travel and the distance makes this a somewhat scary choice.  Her second choice is Yellowstone.  She loves the idea of New Zealand and seeing Hobbiton, but the 24 hours plus plane ride is very scary.  It will be up to the wish granters as well as the Docs from here on out. Long plane rides and the possibility of jet lag are real ones for us when a change in air pressure put Libby to bed for over 24 hours last week.  Still so grateful.  Amazingly grateful and overwhelmed by thinking of a Wish.   I am still marveling at the fact that I have a child who qualifies for Make a Wish.  What a vastly different world this is, beautiful in its own way!

We were given an amazing IPad from a donor through TurnCenter.  We quickly bought the Speech program ProloQuo2Go and we are off and running.  We had been taking lots of pics with the IPad and the kids had made videos, in an attempt to create a personal album for Miss Liberty.   We ordered the Otterbox the same week we got it and it hadn't come in when we took it with us to see Honey House play in Lubbock weekend before last.  We waited until after everyone left to get to meet the other artists and to talk to Yvonne.  While using the IPad to get a pic with the group it was dropped and the screen is cracked.  We cried all the way home and often the next day. 

Knowing that Libby had been given something we could not afford without ever asking for it, was amazing.  And knowing that it is broken made me sick.  We are taking it with us tomorrow to the nearest Apple store, in Ft. Worth, to try to get the screen fixed.  Praying something will work out.  Managed to get the thank you gift together for the anonymous donor this week and dropped it off.  The donor received a copy of Libby's book "The Incredible Adventures of Sparkles..." .  Praying the donor knows how grateful we are and the amazing difference having the ability to push a button and have people understand our child is making in our lives.  Saying thanks is never enough.  I would NEVER want anyone to think we are not grateful, we are full of thanks, just a bit clumsy, nervous, and exceedingly tired.   

We are indeed blessed.  Beyond measure.

For Liberty's English class, she had to complete her own "Where I'm From" poem modeled after the George Ella Lyon poem.  This poem has a format that allows us all to list the required kind of word and then place them into the skeleton form of the poem. Rachael, Liberty and I worked on it Sunday before last and here it is.

Where I’m From                        9/2012

 "I am from Ivory, Sure Gel and Pine-Sol.

I am from the white house in Happy,

                which is a home just big enough for us all,

                and the garden where we labor in love.

I am from the Rosemary that Momma love

 and the Willow that grows just for me.

I am from hard work and determination,

                from Farley and Augello and Bumpus.

I am from eating stubbornness as part of every meal

                and raising beautiful, headstrong women.

From knowing I was raised to be KING, since queens and princesses really don’t get to rule,

                “put that bird down!”

and “make sure you listen to your sister”.

I am from the many hours spent serving in the church

and worshipping in the great outdoors.

I am from the High Plains, where we can our own jelly

                and make our pasta sauce from scratch.

From the blending and adopting

                overcoming heartaches and too many hospital stays. 

I am from the jewelry box where Momma keeps what she won’t wear

                -saving it all for my sister and me."

We will end my birthday evening with this thought...... every day we have to make a difference.  Every day we have to keep getting back up.

Love and light and new beginnings- even those forced on us through technological glitches...
ileana