Monday, October 12, 2009

A splinting we will go

Reagan woke up once last night and ended up in bed with us. She was crying and upset when I picked her up but a few seconds snuggled up next to Daddy and she was back fast asleep! Little turkey! This morning started off well enough. Our new helper started today and she was definitely a help. Reagan was in a fair mood this morning but started getting a little fussy just as we were loading up to leave for therapy. She continued to fuss/cry in the car and then got pretty hysterical during OT. She had several bouts where she'd cry her breath away and turn purple, but her therapist just worked through it and somehow managed to save the session. She also measured her for some hand splints. Reagan's hands are clenched into a fist a lot (the right more so than the left) so these splints will help to keep her hands open and her wrists straight or bent outward instead of inward. She had some benik splints that were made out of soft neoprene to try to pull her thumbs out but she'd bend her thumbs in against them and they'd turn purple so we never really used them on a regular basis. These will be thermoplastic splints that can be heated and bent to fit her exactly as needed and since they are plastic with a neoprene cover, they'll be more rigid but still comfortable. Then we moved down the hall to feeding therapy where Reagan's therapist (who has the nickname "the napwitch") managed to put Reagan into a deep sleep with her dark lighting and massage techniques! She was out cold, which allowed her therapist to at least get some good stretching done. She woke up just as we were leaving and seemed to wake in a slightly better mood. As we headed back home for her first session of vision therapy I was worried that she was not going to tolerate it in the least...but she actually did OK. I wouldn't say she was super cooperative, it seemed she was ignoring the therapist the majority of the time, but at least she behaved and sat in her chair as she attempted to get her attention. Finally tonight she seemed to mellow out a bit and just be her usual cuddly self. Not sure what all the drama was about today. You just never know with her. Still no word on when the EEG will take place, I guess I should probably inquire about that tomorrow so we don't get lost in the shuffle. Please continue to keep Reagan in your prayers.

4 comments:

Heather said...

Thinking of you tonight.And your mom.Knowing you are going to miss each other like crazy.And then there is Reagan.I swear tht was her first word.... "NaNaNaNa".She adores her Grandma and Grandma her.I will pray for you all as you transition through this time.God will guide you and see you through the tough times.You are so terribly blessed to be so close to your mom.It is something I envy.Distance will not change that.Love to you and the little turkey.

Mandy said...

Just found your blog and began reading this story about your amazing little one... I too am a mom of a 3 1/2 year old with CVI, infantile spasms, partial complex seizures and general global developmental delay. Boy do our stories seem similar.
I will add you to our prayer list. God has been so good to us through these last 3 years. We too are as of yet, completely seizure free. But through it all, somehow, someway I know that my Claire is bringing glory to God. For He promises us that "all things will work together for good for those who love Him and are called according to His purpose." And He was given us a "future and a hope". Amazing....

Please feel free to read my blog...
http://3daddysgirls.blogspot.com

Dawson said...

Where Can I find one of these
"nap witches"??? I would love one of those.. So glad to hear you have a helper now. Please know that that sweet girl always remains at the top of our prayer list.

the Grandma said...

Oh My!!! I can not even begin to tell you how my heart aches for my baby......and I don't JUST mean Reagan. Being so far away has really given me insight into what is really important in life, however, I KNOW that God has sent me here for a purpose. I have only been gone a day and my heart is near breaking! I can hardly wait to fly home this weekend! I love you!.........