Nica's SDR Journel Our families journey through Nica's rhizotomy surgery and recovery

Nica is continuing to do well. She got a bed side bath today and her hair washed. Both of which weer desperately needed. Today was also the day Anne gave Nica a get well gift. She picked out an animated flying duck. The propeller has LEDs in it and spells out get well soon and plays “You are my Sunshine” It’s really cute. We also got a our first good look at her incision. It’s bigger than we had originally expected but the scar should be fairly subdued. By the time she grows up I reckon it she be barely noticeable. I told Tammy she needs a tattoo of a zipper fob at one end of it.

For any one who has changed Nica’s diaper, put on her pants, or worked with her for PT I imagine one picture will come as a surprise. Her scissoring was getting so bad that her legs were difficult to spread and had in fact begun to chafe against her diaper elastic. Now, she can really relax without even trying. It’s helping her bottom to heal and cleaning her for a diaper change is hurting her less and less. Her legs are so loose it’s amazing. Her hands too are showing increased functionality. Miss Heather, her OT, was right sooner than she expected. She’s not going to need her supinator strap any more. That’s especially true when you stop and realize that they put her IV and it’s support on her “good” hand. So everything she does is OT. She’s crossing mid-line more easily and readily even with the awkwardness of the IV.

We never made into the wheelchair today. She’s still been protective of her back and hesitant to move a lot and be held for long. As a result, Daddy is the only one who’s gotten to hold so far. We got to snuggle on the couch for about 45 min while we watched Rio. That was when I realized her diaper had twisted and she peed all down my front. Mind you I had just gotten out of the shower right before I picked her up. That was her first voiding following the catheter removal. At least we now that’s working OK.  After cleaning both of us up we tried letting Mommy hold her but Nica asked if she could just lay instead. She’s been really sleepy most of the day and she’s managed a small nap in the early evening. I’m hoping she and I both have a more restful night.

We’re still waiting on the order to come through for the PT to come visit. They’re being cautious about too much stretching of the wound area. We can certainly appreciate that. We haven’t been told what to expect tomorrow from the doctors that are treating her so we’re just going to wing it. We do have some visitors coming tomorrow, Grandma Kathy and Grandpa Joe, Grandpa and Tutu, and Miss Megan are all planning to stop by throughout the day.

May you all have a good night and check back tomorrow. Various Bat times, same bat channel.

Ray

Nica was able to have a yummy pancake with peanut butter and syrup, a few bites of bacon, and a chocolate milk for a late lunch! She ate it with record speed. She’s been catnapping all day but has had a lot of awake time today and is enjoying being able to move a little more and especially being held by mommy and daddy. Thanks to everyone for the love and prayers that you’ve been sending. We couldn’t have picked a more wonderful bunch of friends and family We love you all!
The girls were so happy to see Uncle Pastor Tim. Anne was such a silly willy during his visit lol. Nica just kept listening to the banter and smiling (makes me smile too to see her smiling). We are just sooo amazed at her progress already. Her ankles are loose and pliable and her hands are nearly fully functional with wide finger extensions (Ms. Heather her OT would be so proud!) She’s transferring objects from hand to hand and I can’t express how easy diaper changes are now that there is hardly any leg scissoring! I just sent Anne and Daddy out for some much needed Daddy/Daughter time and Grandma Joyce is having another tea party with Nica so I think I’m going to catch up on my book or some sleep now. Stay tuned for more pictures when Ray returns!

I haven’t gotten up so much in one night since Nica was a newborn. She’s still begging to get out of bed, but after 2 days of asking, this morning she finally got to have her tea party. The Nurse Practitioner came by and showed us little exercises we can do with Nica’s legs.

Dr. Rodriguez just left and order the catheter removed. She doesn’t have to lay flat any more and they’re going to get Nica out of bed and moving. It’ll be the first time we’ve held her since before the surgery. They’re also wanting to try her in her wheel chair today. Dr. Rodriguez said that because of all of her fluid loss during the surgery sitting up could give her a headache.

Doing the exercises is amazing. I’m not sure I’ve ever seen her legs move so easily. She’s able to move them on her own and she has some normal feeling as well. There seems to be some hypersensitivity in her feet but that will pass. They’ve put her on Valium to control the muscle spasms that are common for the first few days.

She is allowed to have visitors. Just let us know if you plan on stopping by.

Ray