The Journey We Are On.....

When we learned about Ethan's diagnosis and that there were no real treatments or cures there aren't really words to describe how we felt.... Now that we are over a year into the PBD world we know that there still isn't any magic treatment, pill or transplant that can save our son and give him a "normal" life... but I have learned that in some ways the experts know a lot more today than they knew about PBD thirty, twenty, even ten years ago. For example: The old terminology, although it is still widely used, has changed. Ethan's disorder is a spectrum, some kids are affected so severely that there little bodies wear out and are with Jesus by a year old. Some are less severely impacted and live through the toddler years, and those that are the most mildly affected can live into their twenties or even thirties! The disorder was once thought of as three separate diseases - Zellweger Syndrome, NALD, and IRD. Now the researchers know that it is one disorder and ...

Ethan got his Ankle Foot Orthodics (AFOs) today!

Please check out the following link. It is to a "poem" written by Julie Keon, a mom of a child with special needs. While I might not agree with every single thing she says in the "poem," I do pray that one day I will have her strength and be an encouragment to moms new to this unique journey.... "What I Would Tell You" by Julie Keon

As you might imagine, my life is turning out much different than I had expected. I hope that I was never a person that took too much for granted, but I do believe that I am more thankful now than I was before Ethan came into our lives. I am also more aware of how much is taken for granted.... We are in the process of selling our house. Why move? We want a house that is more Ethan friendly. We want a house without stairs so that when he is able to walk with a walker or if he needs a wheelchair that our home will not be a hinderance to him. So as we began this process of looking for a different house we started with a long list of it can't have this.... NO Bi-levels NO Two story homes NO one story homes with large steps up to the house NO one story homes with step ups or downs from one room to another NO narrow hallways All of these things seem like they shouldn't matter, but to a family who is uncertain about the future health and mobility of their child they are.... ...

We had a huge answer to one of our many prayer requests this morning. We have qualified for help with the experimental medicine for Ethan though the National Organization for Rare Disorders assistance program. We have to do some baseline blood tests before he starts the medicine but then he should be starting the medicine within the next couple of weeks! Since our insurance doesn't cover the medicine it would have been over $700 a bottle without this assistance. We know that the medicine is not a cure for PBD. We aren't even sure if it will really help, but we are going to try. The hope and prayer is that it will help restore some of the peroxisomal function. We are praising the Lord for this answered prayer! Now, to sell our house. :)

Ethan has been "signing" eat for a few days, and I finally got it on video!

We had Ethan's one year review of services or his IFSP (Individualized Family Service Plan) back on August 31st. This meeting was to review the progress Ethan had made over the last six months and to set goals for the next six months to a year. It also is the time were we review all of the current services he receives through Early Intervention and if necessary make changes. I was very glad that Ethan's Physical Therapist (PT) and Developmental Therapist - Hearing (DTH) were able to attend the meeting along with our service coordinator. The PT and DTH have been with Ethan since the very beginning! I thought the meeting was helpful. There are a few changes that were made but several of the services remained the same. Occupational Therapy (OT) is increasing services from twice a month to weekly. Speech is increasing services from once a month to weekly and will be working on feeding in addition to language development. Developmental Therapist -Hearing (DTH) will contin...

Here is a video from dinner tonight!