A Change and Challenge-filled Summer (the short version)

This summer has been one of changes and challenges. Not all of the changes have been bad, but some of them have been and are continuing to be ongoing challenges. I'll share more in a longer update soon, but here is the short version of what's going on for our family.

  • Over the months of June and July Ethan went from walking dozens of independent steps in a row to not taking any steps, barely cruising, and basically not even wanting to bare weight on his legs/feet. To say that we are devastated about this setback and loss is an understatement. We are thankful that at this point Ethan is still mobile, he crawls and he scoots on his butt, but my heart aches for the boy who was on the verge of truly walking independently back in May that seems to be, at least for now, gone. Ethan has started school and we actually have his IEP meeting tomorrow. We are hoping that the new PT and the increased minutes will help us try to get some of this back. I want my son back. I hate this stupid disease.
  • We've been in Peoria as a family for just over a month. We are no where near being settled, there are still boxes that need to be unpacked and several rooms that need to be organized, but we are beginning to be more comfortable here. There are lots of projects that need to be done over time to make this house our home, but those aren't going to be happening for a while. We are thankful for the house we have and although we haven't met a lot of neighbors it seems like a nice neighborhood.
  •  Jeff is continuing to enjoy the new job/position and has been able to reconnect with several former coworkers that used to be in Decatur but over the years relocated to the Peoria area. I am very proud and thankful for Jeff's job and the provision that it has provided us as a family so that I can stay home with Ethan.
  • Ethan started school! He is in the Deaf/Hard of Hearing preschool class in Peoria. Yes, we did buy in Peoria school district, and so far do not have any regrets. Due to Ethan's needs, the smaller school districts would have "bussed" Ethan into Peoria for services anyway, so it just makes sense for us to live where Ethan can have the best access to the special education services that he needs. In his class of 5 students, I know that one of the little girls is from East Peoria, and another is from Pekin, since those school districts don't have a Deaf/Hard of Hearing preschool class the girls come into Peoria. So far things are going great and Ethan seems to love his teachers, therapists, and school in general. We have his IEP meeting tomorrow which will help us develop a more solid plan for this year.
  • We are slowly changing most of his specialists to ones here in Peoria. It will be so nice to have specialists and a Children's Hospital in town, verses having to drive an hour for appointments all of the time. At this time we are going to keep a few of our specialists in Champaign and Springfield, but the majority of them will soon be local.
  • Ethan went to the dentist for the first time! It wasn't nearly as bad as we had thought it would be. I won't lie and say that it was fun or easy, but it went okay and he'll start having checkups/cleanings every six months now.
  • I'm training for the Susan G. Komen Half Marathon that will take place here in Peoria in the middle of October. So far I'm a bit behind on my training, but I think I'll be able to do it. I want to improve on my time from April's Illinois Half Marathon. I plan to once again proudly wear my bright green "Exercising for Ethan" t-shirt. My little boy has to work so hard to do anything, so challenging myself to do something like this (although I admit to enjoy running) is hard and when I'm really struggling it gives me the tiniest bit of feeling like I might understand a fraction of the frustration Ethan must feel every minute of his day when he can't do what he wants/can't communicate what he wants/needs, etc.
We would greatly appreciate your continued prayers for our family. I'll be working on a more specific list of prayer requests for my next update.

Thank you!


  1. Sending so much love to a very strong family and an adorable little boy!


Post a Comment

Popular posts from this blog

Faces of Peroxisomal Biogenesis Disorders

#PauseForPBD -- October 5, 2017

2017 GFPD Conference Recap