Last Wednesday we drove to Ft.Worth for a Botox treatment and DBS programming. The weather was interesting, as a snow storm followed us all the way down. Because Dr.A was adding injections into Libby's feet, the soles, she was sedated for the Botox injections. Trying to relax so that her Parkinson's toe walk will be more like a flat footed strut. He also treated the huge knot on her neck as holding her head upright remains challenging. We have been battling some skin breakdown on various places on her head and neck because of her head constantly laying to the side. Along with neck injections comes the chance of swallowing issues which we are facing now. Monitoring every bite and thickening her drinks to make sure she doesn't aspirate. It's a balancing act of medications, DBS changes, and Botox. He did increase the power going through her DBS and we have seen a larger range of motion already. I really wish we had her in more physical therapy, but too late to change the schedule now.
We also grabbed her prom dress while in Ft. Worth. We are keeping the dress under wraps until the prom. Her goals are to dance at her prom and walk the stage at graduation.
We made it home on Friday, March 6 and Saturday Libby had art competition and I had AP scoring training. It was a lot to push for after a doctor trip, but Libby insisted in staying through until the awards ceremony.
This one is titled "Hope". I love that both of her art teachers have found ways to help Libby make her own marks on the page. Grateful. Oh, and she got two gold medals. She's may have glowed for several days.
On Sunday morning, our beloved cat, Jar Jar Binx passed away. He had waited until we made it back. He is missed by his two and four legged family.
Now it is Spring Break and I think we all need this time so desperately. I haven't been able to fully process everything has happened and need to work through some grief of various kinds.
Missing my Grandmother and unable to find a way to get my mom into a safe and healthy environment. I will take all the blame if she would just let us get her into a safe place. So many painful decisions have to be made very soon.
We are also making the appointments to get Libby into college and figuring out how that will work. She has goals and dreams that we will support as best as we can. The paperwork and obstacles are full of learning opportunities (pardon the bit of sarcasm).
This weekend we are focussing on eating and sleeping, and a little ride in the country. Time to recharge.
I'll not be choosing but will continue to add to. My heart grows bigger and makes more and more room for so much love and gratitude. There is still so much to do and I know that with a little rest we will be ready.
The farm equipment gives you away! I lived right across the street from there as a kid but the house no longer stands...You are such a strong person! I pray God continues giving you, Rachel, and Libby strength. Her art work is amazing! So very sorry about Jar Jar Binx...I finally found the strength I needed to adopt a new baby. (A 4 year old baby that is). I know yours will be waiting when you have been renewed. Prayers for all of you Ileana!
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