October 31, 2014

Happy Halloween!

Happy Halloween!

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.

October 29, 2014

Outpatient PT Evaluation & Our First Visit to the Peoria Zoo

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.

October 22, 2014

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 become our motto. Although, we aren't exactly keeping track of all the places that Ethan has gone potty, we are excited that he seems to be pretty flexible and is still pretty successful even when we aren't home.

October 15, 2014

Columbus Day Weekend Getaway 2014

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.

Ethan's favorite thing about the Children's Farmstead were the cow bells!

Although it isn't a great picture, its proof we were all together.

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 room along with the Gamble family and our friend Abby who drove in from Lincoln to hang out with us. Abby is very special friend to the GFPD and has volunteered in the childcare room at all of our conferences. It was great to spend a few hours catching up. Ethan warmed up to Miss Abby right away. He is such a charmer!

On Tuesday morning we left the hotel early to go to the Children's Hospital. Ethan did great during the DEXA scan and then we headed over to see Dr. Rizzo. The appointment went as well as could be expected and Dr. Rizzo assured us that we were doing everything we needed to be doing to manage the symptoms of PBD-ZSD. Ethan's DEXA scan showed that his bone density seems to be pretty stable and that probably isn't contributing to why Ethan has lost some of his mobility. While it is great that his bones aren't bad enough for us to need to look into possible bone density treatment options, the reality is that Ethan's loss of mobility is likely related to the progression of PBD-ZSD and/or that Ethan's mobility has simply plateaued. Despite that, Dr. Rizzo was encouraged about Ethan's progress in potty training/scheduling and that Ethan's overall health is good, considering he has PBD-ZSD. We also discussed Ethan's increased irritability and his problems sleeping, and although Dr. Rizzo didn't have any immediate solutions we are going to talk to Ethan's neurologist about some possible medicines to try.  The hard truth is that many children with neurological diseases have a difficult time sleeping and can become very irritable.

The drive home on Tuesday was a tough one, but we made it home eventually. Ethan was a real trooper. While we were sad to have to leave all of our friends and missed them even before we left, it was good to be home.