The Journey We Are On.....

This month marks 1 year since Ethan became dependent on a feeding tube. Ethan has eaten very little by mouth in months. Today he ate 4 oz of orange banana medley baby food for his afternoon snack. Although we know Ethan will most likely be dependent on his feeding tube for the rest of his life,  it was great to see him interested and tolerating more than a bite or two of food by mouth.

We've known for a long time that because Ethan has PBD-ZSD  his hearing loss would probably be progressive and that at some point hearing aids alone would not provide him with adequate access to sound. Ethan received his first set of hearing aids when he was just 4 months old. Over the last 3 years his hearing loss has been monitored and his hearing aids were turned up, then last year he got new stronger powered hearing aids and those were then turned up several times, but Ethan just didn't seem to be responding well to them. In November Ethan had another sedated ABR (hearing test) along with an MRI and a bunch of blood work. The ABR's results showed us that Ethan's hearing loss had gotten worse and it was now time to move forward towards a cochlear implant. So, following the ABR we began having all of Ethan's records sent to implant team at Carle Clinic for review so that the surgeon, audiologists, and speech language pathologists, etc. could determine if th...

Following a busy Christmas season with family, the New Year started out slow as the cold weather and snow/ice kept us inside where it was warm. School was closed numerous times throughout the month due to the snow/ice and/or biter cold temperatures and there were even a few days that the roads were too treacherous for Jeff to make it across town to go to work. One of the best days of the month was Sunday, January 12th when Vicky and Kenna came to visit us! It was a joy to attend church with friends who we consider family and spend the majority of the day with them before they had to head home. I don't think I'll ever get tired of spending time with other GFPD families -- there are so few of us and we are spread out throughout the country/world -- that anytime we get to spend with one another is very special. Despite the weather, Ethan did have several visits with specialists.  On the 13th Ethan saw both the GI and the Neurol...

Dear Family & Friends, Merry Christmas and Happy New Year from the Marshall family! We are once again praising God that we are wrapping up another wonderful year with Ethan. Two thousand and thirteen has been a year filled with many changes, challenges, and celebrations. Last winter Ethan mastered cruising along the furniture and became a super speedy crawler who enjoyed pushing his toys from one room to another. He even began taking steps with his walker! We also reveled in the improvement of Ethan’s sleeping habits! Ethan received more powerful hearing aids to provide him with additional amplification and they appeared to make a great difference in Ethan’s ability to hear the world around him. Unfortunately, in the midst of the happiness, Ethan seemed to be continually battling illness and dehydration which led to many doctor appointments and the introduction of a GI doctor to our team. On the first day of spring we found ourselves on the way to Carle hospital. Ethan...

Have you ever heard of Giving Tuesday? I hadn't until today. You can learn more about this amazing movement on their website . If you are feeling in a giving mood today, would you consider making a donation to the Global Foundation for Peroxisomal Disorders (GFPD). You can do so online or by mail. For more information visit www.thegfpd.org . We are so blessed to be part of the GFPD family. We can't even imagine what our PBD-ZSD journey would be like without the support of other families who understand this diagnosis and how it changes live forever. Thank you for your continued love, support & prayers, Jeff, Pamela & Ethan

As most of you know, the Global Foundation for Peroxisomal Disorders (GFPD) has become our second family since Ethan's diagnosis and we are very involved with the organization. I feel honored to serve on the GFPD Board of Directors as the Registry & Support Group Coordinator. We are a completely volunteer ran organization and all of our Board of Directors are parents of children (living or deceased) impacted by PBD-ZSD. I'd like to invite you to take a few minutes to read GFPD's Winter 2013 President's Letter  and check out what we've been doing this year.

When Ethan turned 3 years old his therapy services through Early Intervention (EI) ended and in August when he started preschool these services were for the most part transferred to the school setting. While he still receives similar services at school, the amount and goals of his therapies are slightly different, and we felt that Ethan would benefit from additional outpatient physical therapy and speech therapy. So Ethan has two physical therapists, Ms. Angie who works with him at school and Ms. Lindy who works with him at the hospital. Although these two ladies make him work hard, I think that they are probably his favorite therapists because they not only let him move but encourage it! Our boy loves to move. During outpatient PT on Thursday Ethan decided to show off and show us just how close he is to taking independent steps. To see Ethan's awesome moves click here . We continue to pray for at least 5 independent steps by Christmas. We are so proud of Ethan and are so ...