Skip to main content

Tuesday 1/11/2011

Last week was a pretty quiet week, but we have big news - Ethan reached a major milestone this past week - rolling from back to stomach.

He started doing this last Monday, and by Tuesday nothing could stop him! We had Grandma and Grandpa Marshall over to see Ethan's "new trick" on Tuesday evening and then Wednesday when Grammy Chambliss came to visit (and go with us to the ENT) she got to see him roll as well!

I must admit, he is still working at getting both arms free after rolling, one is usually stuck underneath him which frustrates him, but he's turned into a little rolling machine. We are so excited!

On Wednesday we went over to Springfield to see Ethan's ENT. Dr. Bauer is great and was very encouraged by how great Ethan looks. She told us to come back in six months for another checkup, but otherwise she didn't have any concerns at this time. Dr. Bauer and our audiologist are very proactive with Ethan and know that if his hearing loss progresses to a level in which hearing aids are no longer helpful that we will seek implants. I asked Dr. Bauer about this and she's successfully implanted kids as young as one year old.

Saturday we attended Ethan's cousin Anna's first birthday party. She had a princess party - she is so cute! We had a baby boom on my husband's side of the family in the past year. There were four cousins born from December 2009 to July 2010 - so, they will all be in the same grade! Talk about four crazy moms when its time for Kindergarten! :)

Today Ethan had his visit from his dietitian, Jen. He weighed in at an amazing 16 lbs. and 10 oz.! He is 27 inches long. His weight is now at the 50th percentile and his height is just above the 75th percentile. I think that Jen was almost as ecstatic as I was! Tomorrow, Ethan has physical therapy, so we’ll have to wait and see what she says.

Prayer Requests
-Pray for a PBD family whose second child left this earth to be with Jesus in heaven recently.
-Pray for all families impacted by PBDs.

Comments

Popular posts from this blog

So much and so little to write about...

When I started this blog I don't think that I could have imagined a time would come in which months would go by without me writing. However, that is what has happened.

So much has changed over the last almost eight years since Ethan's birth and subsequent diagnosis with PBD-ZSD, yet at the same time so much hasn't. Unlike parents of typically developing children we find ourselves still parenting a child with complex medical needs who's developmental skills range anywhere from 9 to 18 months. Ethan still has PBD-ZSD, and right now his uncontrollable seizures are a major issue. We still fight PBD-ZSD the best we can each day with a basket full of medications and supplements and other medical interventions (feeding tube, cochlear implant, AFOs, etc), numerous therapies, school (which Ethan loves), and prayer. We advocate for him and all children and families impacted by PBD-ZSD and related peroxisomal disorders through our involvement in the Global Foundation for Peroxiso…

#PauseForPBD -- October 5, 2017

October 5th is a special day for our family as we celebrate #PauseForPBD, the annual awareness day for The Global Foundation for Peroxisomal Disorders (GFPD). [Jeff's birthday also happens to be October 5th but he doesn't seem to mind sharing it with #PauseForPBD day.] Our son, Ethan, is 7 years old and is one of less than 200 children, known to the GFPD, living worldwide with Peroxisome Biogenesis Disorder (PBD).  Ethan has a contagious smile and laugh, despite the fact that PBD has caused him to have severe cognitive and physical delays. Peroxisome Biogenesis Disorder (also known as Zellweger Spectrum Disorder), is a rare, genetic condition affecting multiple organ systems in the the body. PBD is generally fatal in childhood. As a parent, it is difficult to express the sense of loneliness and feelings of isolation that enter your life when your child has a rare genetic disease that most people have never heard or and has no cure.
However, #PauseForPBD, is a day that brings o…

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit.  All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL.  We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders.

Here are just a few of the faces of PBD.