Wednesday, December 28, 2011

Long Overdue...




Many have been asking about Catherine since I don't think I posted anything since she started school in August! Catherine loves school. She loved it so much that we started sending her 4 days a week instead of 3. She practically leaps out of my arms into Shannon's (her aid) every morning and cheerfully waves bye. I think I've mentioned before that Shannon is wonderful. Shannon is way more than an aid to Catherine, she's like her own personal pre-school teacher, therapist, and advocate all rolled into one. We are so blessed to have her in Catherine's life. Just take a look at what her hard work has done!


video

This is huge. Shannon told me earlier that week that she was doing this, but it was difficult to believe, because I have a hard time getting Catherine to just stand for any amount of time, she just doesn't like to do it. But to see her taking steps and walking with support was a wonderful Christmas gift for us! Shannon has been working with Catherine in a stander, getting her up to 2 hours at a time in it. In the stander, she is completely supported, but she is bearing weight the whole time. No doubt all her time in the stander is helping build up her muscles to do the work of walking.


Her speech therapist is also just thrilled with what Catherine has been doing. She has been seeing Catherine since she was 4 months old, so she really appreciates the progress that Catherine has been making. She attempts to repeat words and sounds, she initiates play with the other kids, she mimics the words and gestures of the songs they sing during circle time, and even though she doesn't like to, she is making some small marks with crayons. She loves playing with the blocks and running cars on the floor complete with sound effects!



Over the break for Christmas I've been really working with Catherine to take more fluids. As you already know she's been eating all of her calories for several months now but she has never been interested in drinking so we've still been tubing her water everyday. Since Catherine has been eating breakfast and lunch at school, Shannon has had some success getting her to take small sips from a cup. I decided that what really needs to be done is similar to what we did in getting her to eat, cut the water she gets through her tube. So, about 5 days ago I started doing that. I knew that she liked applesauce and in the past I've gotten her to eat 4 ounces or so at a time, so I started with that. She still doesn't really like the cup so I've been spoon feeding thinned down applesauce to her and yesterday she "drank" via spoon 7 ounces total! Today I've had some success with a sippy cup that has a straw and I am able to squeeze the cup so that the liquid rises to the top of the straw. She's taken a few sips that way and she doesn't seem to mind. It's been 48 hours since I've put anything at all through her tube. I'm monitoring her for dehydration and overall mood and she seems fine. Hopefully she'll start to take off soon and we can start thinking about getting rid of the g-tube completely!

Health-wise she's dong great. Of course since she's started pre-school she's had about a cold a month, but that's to be expected. Her eye exams and MRIs continue to be clear of tumors and we have few regular appointments at Children's now.

The boys are doing well in school and they just performed the annual Christmas Program. It was a wonderful experience for them and they really enjoyed it.

Thank you for your continued prayers for us and our family. We continue to pray for you!

4 comments:

vincent said...

Thank you so much for the update! Very exciting news, so happy for her and your family!

Diane Rougelot said...

Wow, just like every other kid, stopping the walking exercise as soon as she sees the blocks she REALLY wants to play with. And, just like Catherine of Siena, strong-willed!

Pam Grossman said...

Thanks for the update of your kids Jim, May you all have a Happy and Blessed New Year! Good to see Catherine is progressing so well.

Anonymous said...

I saw one Mom using, well I suppose technically repurposing, a honey bear bottle of honey as her daughter's "sippy cup." She flipped the lid opened and inserted a shorter straw into the little spout. I almost interrupted her during Mass to compliment her brilliance! Her daughter could grasp it a little better and she had accomplished the ability to self dispense without a huge water spout. She didn't have to tip her head, which the daughter was unable to manage due to lack of muscle control and weakened muscles. Smart Mom. I appreciated her excellent problem solving skills.