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Showing posts from October, 2014

Happy Halloween!

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Ethan has been getting a little bit stronger each day. We are so thankful to his therapists and teachers for helping him get back some of his mobility. This past week he has been working on steering his walker. Want to see Ehan on the move? Click here.

Outpatient PT Evaluation & Our First Visit to the Peoria Zoo

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This morning Ethan had an appointment at Easter Seals to be evaluated for outpatient physical therapy. While we are very happy with his PT at school, it is our desire to supplement it with outpatient, and specifically with water/pool PT. The evaluation went well, Ethan even showed off and walked with his walker for the PT. Hopefully, he'll start outpatient PT within a couple of weeks.
Afterwards I took Ethan to school, but he was only there for a short time since it was a half day. We decided to spend part of the afternoon with some of our new friends, Michelle and Khloe. Khloe is in Ethan's class at school. We headed to the Peoria Zoo. It was Ethan and I's first time there. While Ethan didn't care about the animals we had a nice visit and the kids enjoyed playing in the leaves. This was the first time Ethan's really "played" in the leaves. It took him a while to warm up to it, but overall I think he liked it.








UNMC researcher heads $3.3 million national study

This week we got some great news, Dr. Rizzo, who saw Ethan last week at Children's Hospital in Omaha, and who is a member of the GFPD Medical Scientific Advisory Board, has received a five-year, $3.3 million grant to study 10 rare diseases, and one of the diseases that will be included in this study is PBD-ZSD!

You can read the press release here.

Please keep joining us in prayer for the doctors, scientists, and researchers who have dedicated themselves to the study of PBD-ZSD and other rare diseases. The GFPD considers ourselves blessed to have such a great team of professionals who are searching for ways to increase the quality of life for our children and ultimately discover a cure.

It's POTTY Time!

At the end of August we began working on potty training/scheduling with Ethan. We weren't in a hurry to start working on this since Ethan can't tell us he needs to go and he can't walk to the potty, but since other kids in his preschool class were working on it, we decided it couldn't hurt to give it a try.




Ethan has really surprised us! Ethan's been using the potty at school and at home for about 2 months now. He averages about 50 to 75 percent success while he is awake, and is now wearing more pull-ups than diapers. He still can't tell us he needs to go, so it is more about scheduling and we give him the opportunity to try typically every two hours. When he is successful we cheer, sing, and celebrate! Ethan claps his hands and smiles. At this time he seems to really enjoy being successful and so we'll keep on taking him.




Since we have done a bit of traveling since Ethan started using the potty, we just take it with us -- have potty, will travel -- has be…

Columbus Day Weekend Getaway 2014

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Jeff, Ethan, and I spent the Columbus Day weekend with friends in Kansas City, KS. This was a special trip for several reasons 1) none of us had every spent any real time in KS; 2) this was our family "vacation" for the year; 3) we got to see some of our GFPD family!

While in KC we enjoyed swimming in the hotel pool, walking around the KC Botanical Gardens, and visiting the Deanna Rose Children's Farmstead with the Maag family. Of course, the real highlight of the trip was getting the chance to spend time with three other families who understand PBD-ZSD.





On Columbus Day we checked out of our hotel in KC and drove to Omaha, NE since Ethan had a DEXA scan (which measures bone density) and an appointment with Dr. Rizzo (one of the top PBD-ZSD experts in North America) the next day. Our friends from Oklahoma also had doctors appointments in Omaha, so our two families stayed at the same hotel so we could spend a little more time together.

Monday night we enjoyed pizza in our …