Wednesday, January 26, 2011

Ear tubes and a new fancy chair

As a result of the many, many ear infections Meredith has had, she had ear tubes put in yesterday. Honestly, it was a piece of cake and Meredith was a champ, as always. It only took about 10 minutes and then Mer was awake again, and back to smiling away. The hardest part was getting up early enough to be at the hospital at 6:30am on a freezing cold, snowy morning : )

January has been a funny month for us. Overall, Meredith has been quite sick. She had 3 back-to-back stomach bugs, a staph infection and has lost 3 pounds. But despite her frequent illnesses, her seizures have remained under control. So while it's upsetting that her weight has dropped way off and she's felt awful, we just cannot believe how well she has been doing on her new medication. We are just bursting with joy and relief. Especially since in the past, illness always had triggered seizures. Had we not stumbled across this Lamictal and Dilantin now, I'm sure we would have spent a good amount of time in the hospital this month.

With the seizures at bay, we have noticed a lot of improvement with Meredith's vision and her ability to focus. She watches her hands now when she's playing with a toy, really watching and processing what she's doing. And the increased eye contact and smiles is enough to melt your heart into a giant puddle. Now that Meredith is well, we are back to our rigorous therapy schedule and working on getting her back up to her fighting weight. We are still doing PT 2x/week, OT 1x/week, ST 1x/week and Vision Therapy 2x/month. Perkins School for the blind made a chair for Meredith that Linda Collins brought over for us on Friday. It's the greatest thing, made of durable, lightweight cardboard, so it doesn't weigh a ton and Meredith sits really well in it!

Thursday, January 20, 2011

Clever Dad

Display of pillows came in handy in helping Mer take her first ride in a shopping cart.

Friday, January 14, 2011

Anonymous Letter

Dear Snarfy,

I have never sent a letter to a superhero so please read. Firstly, where did you get your powers? The ability to endure a spinal tap with a giggle and a squeak is kick ass! I have difficulty mowing the lawn without bawling. The power to listen and smile while people hold you and blabber?? Helen Keller had better listening skills than me. Being okay with having to work out three times a day!!! I get bloody stools about having to drag my lard ass to the gym twice a week!! That poor treadmill. I know it cries every time it sees my redwood thighs lumber through the doors. Happily going to ten doctor appointments a month. I bitch about having one a year. I have been following your blog closely and I think you are absolutely phenomenal. Your Dad seems like a bit of a handful but I am sure you are extremely patient with him. I just wanted to let you know that you are the reason I believe in superheroes. Life would be so boring without you. I also appreciate your humility. Personally, I think Batman's bat mobile is way over the top. Your understated, yet stylish yellow stander is a far less pretentious mode of transport. And Wonder Woman's red stripper boots have nothing on your classy blue and purple spotted AFO's. Now when I mow the lawn, I smile. Now when I meet people, I listen. Now when I go to the gym, I thank God I can walk. Now when I go to the doctor, I thank God I am healthy. Now when I wake up in the morning, I think of you and thank God you were born. Everybody should have a superhero and I am so grateful to have found mine.

Thursday, January 6, 2011

Chirstmas in San Francisco

This year we spent Christmas in San Francisco! We had an amazing time and enjoyed lots of quality time with our family. Meredith came down with a stomach bug the night before our flight which had us nervous to fly. However, she pulled through wonderfully and didn't get sick at all on the plane, thank goodness. We had a fancy little gadget that allowed us to strap her carseat to a piece of carry-on luggage so we could tote her around the airport easily. We were spoiled with warm weather (compared to Boston!) and were able to get outside each day for a walk or run and enjoy all those amazing hilly views. We were so happy to visit with cousin Graham, Uncle John and Auntie Jackie who were such generous hosts, as always. We also got to see Uncle Matt's new woodworking space which was really cool and see Matt and Melissa's new Hansel and Gretel style apartment, which I instantly fell in love with. We went kayaking around the harbor, walked around on the Goldengate bridge (something we always wanted to do and never had) and other than that, just took it easy. We had such a good time and can't wait to visit again.

Meredith has been doing AMAZINGLY well on her new medication. She has not had a cluster of seizures in weeks. She has had a handful of them, but no clusters. Just one here, or one there, and only when she's had an ear infection or other illness. We have not had to use Diastat in over a month. We are definitely making progress, and I cannot even describe with words the happiness that this brings Greg and I. We both feel we've seen some significant improvements in Meredith's eye contact and general interaction. She seems to pay more attention to people and things and notices more of her environment. Yesterday, I put on a Baby Einstein DVD for her to watch in her new fancy chair and she basically watched the whole thing. This is huge for her - normally, she may or may not notice it was on, and it would not keep her attention for more than a few seconds at a time. She's been her normal "chatty" self lately and has been tearing it up in the stander. Yesterday, she did 2 hours straight!