Growing Pains

     When I was little I would wake up in the middle of the night with terrible leg cramps.  Jumping out of bed and hopping around- stretching until the pain subsided. It was years later that I learned that by keeping moving I made the growing pains release sooner.  In my world still have to keep moving even if there is a little pain involved. 

     We went to Cook Children’s for a refill on her Baclofen Pump. During the visit we were told that we would need to “find someone” to manage her pump and DBS now that she is “of age.”  Not what I wanted to hear. 

         I love this hospital- it’s doctors and staff.  It is here that we found so many answers and opportunities.  Our beloved doc, Dr. Hottie, has done the testing and questing for our girl for eight years.  It is my trust in him and this place that allowed for the placement of the deep brain stimulators and the baclofen pump.   I do realize that as she progresses we will need someone closer to where we live, and this switch won’t happen overnight.  I love this hospital, and it will hurt to not have the comfort we get there. 

Little One ready to deliver a painting to her doctor, and he wasn’t there.   

   

        Libby’s pump is pumping and her Deep Brain Stimulators are stimulating.  Her weight has been steady since December 8!  That is a huge blessing!  I was warned that as her conditions progress it will be harder and harder for her bionic interventions to make a discernible difference in her tone. I’d rather not know exactly how stiff and spastic she is without the muscle relaxer or the electronic impulses. Some relief is always better than no relief. 

         So, we will be stretching and moving through this transition to an adult neurologist.  Luckily, Libby has an appointment next week with her primary care physician for a complete check up.  It has been a shamefully long time since she has had all the blood work done, so I look forward to establishing a baseline. I will request the referrals needed and move through these growing pains.  

      Be blessed and know that you are loved and appreciated. 

ileana

**Following are pictures from the pump refil procedure. If you are needle shy don’t look.  

               

Birthday

    Tomorrow Liberty will be 21. In a different world I would have fulfilled my duty and finished raising both of my children.  In a different world Liberty’s body wouldn’t be fighting us at every turn.  In a different world I wouldn’t  have to pray everyday that the spark that keeps her her, stays lit.   I wouldn’t have missed the tick that triggered the decimation of her neurological systems.  Her body wouldn’t be fighting so hard against us. She would be whole, and I wouldn’t be a Forever Special Mommy. 

      But this is our world and she is turning 21.    The insurance companies have been calling and sending information since May that reminds me that she will be 21 and an adult. Reminding me that we have to have her adult medical coverage in place to roll it over before she becomes a legal adult.  I stopped counting the number of calls at 27.  That was in October.    Casually saying that many of her caretaking hours and various programs will be cut as she won’t need the same level of care once she’s an adult. Yep. They’ve obviously never dealt with constant incontinence  in an adult size body.  I am grateful that said insurance has been on top of her transition, and we believe we have the next few steps in place.  And many more appointments in the next month. 

      At her regular Botox in December we were reminded that as her body continues to stiffen and the spasticity worsens the Botox will have less and less effect.  My response is that any relief is still relief.   I have nothing but gratitude for any relief she can get.  She had dropped several more pounds.  This is a huge battle.  Getting calories in her as her body burns them constantly being so tight and spastic. Her muscles are constantly in flexion.  Constantly.  Even in a deep sleep.  That’s with the DBS, Botox, and the Baclofen pump.   Don’t want to see her without it. 

       Tomorrow she will be 21, and I am humbled. This day was not promised, none of them are, and it certainly wasn’t expected.  But I believed; many of us did.  I know Liberty’s journey has had a purpose. Some reason.  Some thing.   

       We are celebrating by fulfilling one of her dreams and showing her art work in a real gallery in a real art exhibit.  I am excited and pray she will love her Art Show.    We will have some finger foods and play her favorite music.   Hoping that so many of our loved ones will be able to make it. I believe it will be magical.   

     Happy birthday, Liberty Alaine.  May you continue to be a spark for all of us.