Friday, August 24, 2007

Home Again

It feels good to be home! After several days of doing laundry and getting the kids settled, we're starting to get back into the groove of our daily activities.

The ABR therapy training in Chicago went really well! Our sessions consisted of one on one time with the trainer who showed Patrick and Grandma how to do ABR!! It was exciting for me to hear the trainer tell us we have a "good team!" Team being the key word. (smile)

We met some nice families and enjoyed sharing stories with each other. They all had much more ABR experience than we have, so it was neat hearing about the improvements they have seen in their kids.

The trip was long but we had some fun family time with Papa and Grandma. Josiah especially enjoyed his alone time every morning with Papa. We all enjoyed a beautiful afternoon at the zoo, and a visit to an IKEA store.

Abby's therapy prescription now includes 4 exercises. We will continue the chest (anterior thorax) and top of the shoulder exercises. The trainer introduced us to two new ones: Jaw/skull division and lateral neck. Abby really disliked these two because they involved holding her head still which she can't stand!! I've been surprised and pleased to discover that she tolerates them quite well now that we are home.

Once again we are slowly building up our hours of ABR every day, but now Daddy's helping too!

Wednesday, August 15, 2007

Summer ABR Clinic

Well, we've made it to the first follow up session for Abby's ABR therapy! Now that we've gotten a good taste of what this involves, we are ready for more training and maybe some positive feedback on what we've accomplished so far.

Although our total ABR hours aren't even close to what was recommended, we feel that we've done our best. Since May we've logged over 128 hours of therapy. One consolation is that this is a huge jump forward in time spent on therapy with Abby, compared to before discovering ABR.
There have been some changes in Abby that are encouraging.

So off we go for another adventure. Grandma and Papa are coming along with us this time, so we should have lots of fun!!

Friday, August 10, 2007

Summer Vacation '07

More Flashbacks! Our family went to Florida last month for vacation with Papa, Grandma and Aunt Connie. We stayed in a beautiful condo right on the beach. The pool was luxurious and the place the kids enjoyed the most.

Abby thoroughly loved the water. She would just lie back and let her hands float freely, looking completely calm. Several times water washed over her little face and she didn't seem upset or afraid. She even began to kick her legs as if she were excited and having fun! Because of the joy she seemed to experience in the water, we would love to have a private pool someday.

Josiah liked the water too. He learned to jump into the water and go under! Daddy made it a fun game so that he would ask to do it again, and again. It was fun to watch him waddle around the pool deck while trying to keep him from carelessly stepping off the edge into the water.

We all had fun spending quiet, relaxing time with family. Can't wait for our next summer vacation!

Tuesday, August 7, 2007

School Days

Abby has started back to preschool again (Tuesday). I miss her. I am able to get more done in the morning instead of doing ABR therapy like I have been doing, but it feels empty.

She has the same nice teacher that she had last school year which is great. We are still praying and looking for a deafblind intervener to work with Abby at school. After finding out there are 11 students in her classroom compared to 7 last year, our concerns about Abby's needs being met have become more immediate. We have another IEP meeting coming up in the next 3 weeks. Hopefully we will be able to address this issue, again.

We wish Abby could tell us about her first day back. Was it scary? Was it noisy with all those new kids? Where they nice? Did you sing songs? Or read books? Did you have time to rest?

We look forward to the day when she will tell us these things.

She came home tired which is a good sign, I guess. She looked like such a big girl being rolled into school.

On a side note, we have switched to a different formula this month. She has been on Pediasure with fiber but we have been noticing signs of discomfort during and after her feedings. Reflux is still a problem for Abby and probably will be for a long time, despite appropriate doses of GERD meds.

We saw her gastroenterologist the other day who suggested a few things we could try. Changing formula was the first on the list. She's already 'failing' the medication trial that usually comes second. Next was to do an endoscopy exam to see what is going on in her tummy and esophagus. He also mentioned gj feedings, where her g-tube would extend down into her intestines. It would bypass her stomach so that she wouldn't reflux any formula. The major downside of this for us is that it's moving farther away from "normal" feeding behaviors; plus she would have to have a slow drip of formula going for 12-18 hrs a day. Yuck! What a pain. We've done this before and much prefer bolus feedings. He said this option would come before doing another fundoplication, which she has also already endured (at 9 months old).

For now we will continue to give this new formula a try. Her comfort level has improved since starting it, so that is a Praise!

Like Father Like Son

I'm still not entirely sure what I think about this scenario, but I must admit it's pretty cute. Daddy recently bought and then quickly sold a very small motorcycle.

I'm told its' official name is a "minimoto," endorsed by Honda... modeled after a Honda CBR. He couldn't resist placing our little son on this contraption, probably imagining what Josiah will look like riding along side him in about 12 yrs or so.

We did have fun taking pictures of him. "Motorcycle" is one of his favorite ASL signs. He does this sign every morning when he hears our neighbor leave for work on his bike. He does it when he hears a lawn mower and when he sees his daddy working on various bikes. I've even seen him sign "motorcycle" when he has overheard us talking about bikes!! Wow.

I wonder if he will love riding as much as his daddy. If so, his mommy will have to learn to relax! Motorcycle fumes tend to run in our families, so I suppose it's in his blood.

Maybe he'd rather be a cowboy.