Greetings from the land of mourning the end of our Holiday Break. Rachael returned to school last week; I start back Monday, and Libby starts a new semester the week after. I have to say that for the first time in my teaching career I have avoided school work. (I have read some educational articles, but that's it.) I have slept, watched entire seasons of various shows, eaten, and run a lot. I've tried to concentrate on recharging and focusing myself.
**Liberty turns 20 on Monday. I'll just let that sink in.
Libby has become the complainanator. She is saying a lot more, that is clearer for the most part. I think that having the muscle relaxer, Baclofen, in her blood stream has helped her brain begin to clear. She has a new laugh that is completely different from what she had two months ago.
Mariah and I took Libby for her Post-Op checkin and first Baclofen increase yesterday, a fast and furious trip that was well worth the time with Mariah. We got to use the family theater room after we got to the hotel Thursday evening; it was awesome! Getting time with both girls is priceless. Having a grown child who is so fun to be around is a blessing.
The appointment with the neurosurgeon went very well. Her DBS was checked and it is still doing its thing. Her pump incisions are all healed up and look great. She has gained two pounds! Not sure if that is the pump, the holiday foods, or me being with her more to nag. She is now getting 140 mcg of Baclofen into her spinal fluid. That is a 12% increase which is a good increase according to the physician's assistant in charge of Baclofen pump check-ins.
**Liberty turns 20 on Monday. Yep.
We are asked constantly if Libby is getting better. That's a hard one to answer. The multiple conditions attacked her body don't really get better- they get treated. The pump should relax her so that she will be, hopefully, more comfortable. That's the hope.
Hope is a dam that has worn thin holding too many wishes safely aloft. Liberty is not bending to sit very often any longer. Hasn't been since maybe the summer. She planks back into chairs, toilets, whatever. Her back and legs are almost human boards, so she complains a lot. But she can't always place the discomfort with right part of her body, we play find the pain/itch/cold spot/what the heck ever all over her little body. She also hasn't been sleeping very well. This is Dystonia and spasticity attacking intermingling their insidious tendrils through her body. Any relaxing of her limbs and torso will be a blessing, but a dam doesn't go for some or a little or any. A dam strives for all.
I'm a DAM momma. I'm here to hold back all these threats against this child and her body. I'm here to push for increases and treatments that will give her relief. I'm here stave off the complaints as her body adjusts and fight back when her body can't. I'm also here to nag, push, love, cajole and support both of my beautiful girls. (I try to be a dam for Mariah as I can.)
We are blessed beyond measure and we are going to strive to go and do more. We are going to live our story.
Boring info...
The Deep Brain Stimulator was implanted two and a half years ago to slow the progression of Parkinson's and spasticity.
The pump and DBS are amazing devices that are slowing the hateful and consistent progression; they are plugs in the dam.
Be blessed.
**Special thanks to Kristen Flowers and April Wolterstorff for Special Mommy conversations. You make me want to be stronger and braver.
**Liberty
turns
20
on
Monday.
