Constraint Therapy Update

We're almost two weeks into Shelby's 3-week stint with the cast on. The cast is now filthy and somehow, Shelby has figured out how to wiggle out of it twice this weekend (which may become a problem). I told Shelby's PT and OT on Friday that this therapy has been successful in many subtle ways, but that I was hoping for more dramatic results. Shelby is definitely engaging her left arm more. It is much more loose, and no longer hangs down by her side most of the time. She is also not fisting her hand as much. I was hoping that she would learn to take her paci out of her mouth and put it back in with the left hand. Yesterday, I turned around and saw her doing exactly that. Very exciting stuff. Check it out:

I'm interested to see how she does after we finish this three weeks with the cast on. I know that her left arm will regress to some extent because she will be able to use her preferred right arm. However, I think that casting has helped her to be aware that she has a left arm--hopefully she'll continue to put it to some use.

bath-talk with baby Harding

I realize that Harding is majorly underrepresented on our blog, partly because we started this as a way to keep friends and family updated on what was going on with Shelby in the weeks after her birth. Also, we didn't have a blog for the first 2 1/2 years of Harding's life. Now we do though, and it has turned into a wonderful way for me to record what my children are up to--especially the little things that I know I won't be able to remember down the road.

I was going through old picture files and found a couple video clips of Harding when he was a baby. I love this one....I think he is 10 and a half months old and says "dada", mama", and "duck" while playing in the bath tub.



I wish I had a clip of him saying, "bookah" (for book) or "ca po po" (caterpillar). He was a very verbal baby. We've got tons of videos on tape that document this, but I'm not sure how to get them on my computer.

Constraint-Induced Movement Therapy

No, Shelby Frances did not break her arm. Because of the huge difference between Shelby's abilities on her right and left sides, we have decided (along with her physical and occupational therapists) to try constraint induced therapy. She will be wearing this rockin' hot pink cast 23 hours a day for the next three weeks. This was not a decision that Tiff and I came to easily. With the cast and the hip brace, Shelby really only has full range of motion with her left arm now--the arm that she can't do much with. We hope that will change in the next few weeks. This type of therapy was developed for stroke patients, but has been shown to be successful with children as well. Shelby is the youngest child ever to be fitted for a cast at Mission Childrens Hospital. We'll keep you updated as she progresses, her therapists think she has a lot of potential. In the meantime, here is some information on constraint therapy: http://ptot.chsys.org/default.aspx?id=2055.

Happy Valentine's Day!

Too much snow?

I am a Georgia girl, and a teacher to boot. The prospect of snow has been known to make me too giddy to sleep. I did not get nearly enough sledding time in as a child. Plus, its usually so nice to have an unexpected teacher work day without students when the roads are too snowy for school buses. It takes a whole lot of snow for me to think we've gotten too much! We've gotten a ton of snow this winter...I'm over it! Thank goodness I'm on maternity leave, because Spring Break has already been taken away and it looks like there will have to be several sessions of Saturday school to make up for all the days we have missed. There was a good bit of snow on the ground yesterday, and we didn't even go outside to play in it. So I included a picture from the first snow we got (back in the old days when snow was exciting). We're looking forward to Spring and sunny days outside!

Persnickity Click

When we went to the beach last October, Matt started telling Harding stories about Persnickity Click. This adventurous character has become Harding's alterego and he is forever asking me and everyone else to tell him another story about Persnickity Click. Unfortunately, no one tells stories as well as Uncle Matt. Lucky for us, Matt and Ashlee just finished making Harding his very own book about Persnickity and his little sister Susie. See if any of the people in the illustrations look familiar to you.

Thanks Matt and Ash. We look forward to the next edition.... Until then, we will continue to read this book five times a day because Harding can't get enough.

Curls!

It's hard to tell, because Shelby Frances has such light-colored hair, but it is finally starting to grow. It might even be coming in curly. I see bows and braids and pig-tails in her future!

Yum?

Harding and his Aunt Ashlee made a gingerbread house a couple weeks ago. Was it an on-sale, after-season Christmas decoration or a tasty snack? We'll let Harding tell you....

   

Baby Shower

My sister is having a baby sometime in March. I can't wait to be an Aunt, Trip can't wait to be an uncle and Harding is so excited about having a cousin. Chris and Grant decided to forgo finding out the sex of this baby at the ultrasound, but are naming him/her "Riley" either way. Harding predicted accurately that Shelby would be a girl. He is adamant that Riley is a boy. I wonder if he has some kind of baby-gender-predicting-sight? I guess we'll know in about a month...

Anyway, I co-hosted a shower for Chris at a coffee shop in our hometown (Covington, GA) last weekend. By the way, there were no coffee shops in Covington when Trip and I lived there...no fair! Chris enjoyed herself and received some much-needed baby items. I was really happy to get to spend time with some old friends. Here are some pictures:

The Guest of Honor poses with the Hostesses: Ms. Theodosia and I watch Chris open gifts:

Adorable (and delicous) Party Favors:

My cousin Jessica and I dig into the cake:

Chris is showered with the essentials:

Check out that belly!

3 Cute Babies (and mommies)!

Amazing

Some wonderful things are happening with our Shelby's vision!!

When she was diagnosed with cortical blindness, we were told that her vision would improve, but of course, only time would tell how much. I kept reminding myself of this and hoped that it was true, but in the face of yet another uncertainty about Shelby's development, it was so hard for me to get past the sadness and grief that I felt at the time. We communicate so much through our eyes. I remember thinking (very irrationally), how will my daughter know that I love her if she can't see me?

When people told me, she doesn't know that she can't see in an effort to make me feel better, it only seemed to reinforce for me everything that she was missing. I eventually was able to pull myself out of my funk though. Another hydrocephalus mom who I respect very much has written on her blog about finding a careful balance between acceptance and hope. I have gotten much better at towing that line. And lately, it really hasn't been difficult to hope, because we are actually witnessing Shelby beginning to see things.

It is amazing. On Sunday, Trip was shaking his head back and forth at Shelby while making a funny noise. She started laughing, and then imitated him by shaking her head just like he was. I know that this sounds like a small thing, but it was a huge step for Shelby. She had to have seen what he was doing pretty clearly to be able to mimic it.

Yesterday, there was another amazing vision breakthrough. This may be a bit masochistic, but I have always snuck silently into Shelby's room to get her up from naps. I creep over to her crib and slowly put my head right in front of her face, to test her vision by seeing if there is a reaction. I never got one without speaking to her first.....until yesterday. She actually smiled at me and babbled when I came into her line of vision. What a miracle!

I still would like to know how much and what kind of detail Shelby sees.... She has come so far, from seeing nothing at 6 weeks of age, to actually looking at us now. It is exciting to know that she will probably continue to improve. Plus, all this vision improvement is due to lots of new brain connections being made. Think about all the other good stuff going on in that brain of hers. Keep it up Shelby Frances!!