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Showing posts from August, 2012

STEPS - Day 2

The second day at STEPS was a lot better. I think we are going to be able to work out a schedule/routine that works for Ethan. No tears from Ethan (or me) this morning.

Today he had "free play" from 9-10am, PT from 10-10:30am, Speech from 10:30-11am, then he played a little and then it was time for all the kids to go to the gross motor room to play so Ethan went with them and stood in his stander for 25 minutes and played with toys 11:15-11:40am, and then we all came down for circle time 11:45-noon. Ethan started circle time in my lap, then he was done and he crawled/played and made his way to his speech therapist and they sat an clapped, played the drum and smiled along with all the other kids.

Now if we can only find a way to change his feeding schedule and still get all of our meds, food, and liquids in that he needs. He is drinking a bottle in the morning before he goes, but he won't eat there. When we got home today he refused to eat and take his meds for me but di…

Ethan's First Day of "School"

Today was Ethan's first day at the STEPS program, a local program for mostly 2 year olds with special needs. It was a really rough morning for Ethan and I. There were lots of tears and Jeff and I stayed the entire time 9am - noon. We will try again on Thursday -- it will just be Ethan and I the next time. Hopefully we can make this work and it can be an enjoyable and positive experience for Ethan.

I think one of the reasons that I was really overwhelmed is that it seemed like so many of the kids in his class are doing so much more than Ethan. There are nine kids in total and more than half are either walking independently or with just a bit of assistance. Almost all of the kids could sit in little rifton chairs for snack time and most are doing some form of self-feeding, some even with utensils! Almost all the kids sat in the rifton chairs for circle time at the end of the day with no problem and seemed to enjoy beating on the drum and the signing of songs, etc. I know that Ethan …

Eye doctor, blood work, and therapists, oh my!

It has been a busy week for the Marshall family. We typically stay pretty busy, but this week was a bit more busy than normal.

On Monday we headed to Champaign for Ethan's eye doctor appointment. Jeff's dad came with us and Ethan enjoyed spending some time with his grandpa. He was so happy that while we were waiting for the eye doctor that Ethan wore his glasses for nearly half an hour. As you know that is very unlike our Ethan.

It was an emotional appointment for me. As most of you know when we were there three months ago we got a new prescription for Ethan's glasses and were told that we needed to dilate Ethan's right eye "the good eye" to force his left eye "the bad eye" to work better. We have been unsuccessful at getting Ethan to wear his glasses, and because of that we made the decision not to dilate his eye. I knew the doctor would chastise us for the decision, but after talking with other PBD parents we felt that we had made an informed deci…

Ethan pulled up!

Ethan pulled up on the couch into standing for the first time yesterday during Physical Therapy. He did it 3 times during the PT session!!!! We are so excited!!!

He did it once for Jeff last night and then one more time for Jeff's parents last night when they came by to visit. Ethan needs to be "bribed" with a toy he really wants, but who doesn't like a little incentive when it comes to attempting something that is really tough.

Not sure when we'll get proof on video, but I do have witnesses!

2012 GFPD Conference - Part 2

It is pretty hard to believe that we've been home a full week. I ache already to be surrounded by other families who get me and who understand this disease all too well. There was a lot of discussion about how we all "get it," and we wish we could all move to a tropical island and bring the best doctors, therapists, and teachers to join us and we could escape all the "normal" people and just create our own little world. Here is just a few of the people who'd be there


There are so many other amazing people and hundreds of pictures from the week, but I guess you are probably wondering what the week was like.

Well, I don't feel like I have a very good answer. I mean, it is always amazing to spend time with other PBD families, and this year there were over 30 PBD families in attendance, but at the same time the conference is really hard. PBD is a terminal illness with no real treatments and no cure!!! It is a nasty, horrible disease that steals a child…