Skip to main content

The end of June already?

Wow, I just can't believe that it is almost the end of June. It has been two weeks since my last update, and while it seems like we have stayed busy, there actually haven't been too many appointments.

Ethan had occupational therapy (OT) on Thursday, July 16th. The OT is working to help Ethan improve his fine motor skills. We have noticed that his reach is much more accurate when he wears his glasses, but he just doesn't like them. He loves to rip them off of his face, taking his hearing aids with them. So, we try everyday but we haven't had a lot of success when it comes to keeping them on.

Last week was Vacation Bible School (VBS) at our church. We only made it to VBS on Monday. Ethan and I went to the opening worship rally and I think he liked the music :) and then we hung out in the nursery. Tuesday, we went to our playgroup at Baby TALK. Wednesday, Ethan had physical therapy (PT). The PT is working with Ethan to improve and advance his gross motor skills - particularly weight bearing on his arms and legs - so that he can gain the skills needed to crawl and eventually walk. Thursday, Ethan had speech. The speech language pathologist got to see Ethan eat his breakfast and we tried to work on the sippy cup -- he just isn't impressed. She was glad to see how well he was eating, texture and quantity. She also got to hear him vocalize the "b" sound - which he has been doing for about two weeks now! We are also starting to explore using PECs (picture exchange communication system) to use in conjunction with verbal and sign communication.

Yesterday we had an appointment to check the progress of Ethan's head shape. He is only wearing his helmet at night now. Ethan has continued to make progress and we'll go back again next month to see how it has improved. When we were at the office I got to tell a mom about the new group, Central Illinois Parents of Children with Special Needs, that we have formed. I was so excited! The support network isn't about isolating our kids from the rest of the world, but rather to find others who "get it" when it comes to being the parent of an extra special little one!

This morning after our our walk, with Sarah, Rachel and Anna, Ethan and I went to Baby TALK. Ethan played with toys and didn't get to fussy until the end. There were several new moms to the group and I was able to share with them about the new support group. I am so thankful that Baby TALK is going to allow us to use their building for our meetings/playgroup.

Tomorrow afternoon Ethan's hearing specialist is coming to the house and is meeting with us and the deaf-blind specialist. Due to Ethan's combined hearing and vision losses, he is considered deaf-blind. But if you have ever met our little man you know that he uses his hearing (the hearing aids bring him up to almost normal) and his vision really well. He loves to play and laugh and eat and interact with his surroundings. It is still important though that we are a proactive as possible by using techniques and strategies that will help him learn, explore and communicate.

We are staying busy.....

Please continue to pray for us and all families impacted by by peroxisomal biogenesis disorders. We are looking forward to the conference next month and getting to meet so many other PBD families.


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.