Skip to main content

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!

Comments

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

    ReplyDelete

Post a Comment

Popular posts from this blog

"God Chooses Mom for Disabled Child" by Erma Bombeck

I don't think this is exactly how it works, but I had to share anyway. I believe with all my heart that God does not make mistakes, and although I will fully admit that it hurts my heart that any child is born (or develops) disabilities and/or life threatening illness, I know that God is sovereign and that He has a divine plan (even when we don't understand it!). I believe that God brought Jeff and I together and that He knew Ethan even as he was growing inside of me. While this is not the journey we would have dreamed of or chosen, and there are going to be times (and have been already) when we struggle, stumble and fall  it is our hope that in the end that we will bring glory and honor to the Lord.  God Chooses Mom for Disabled Child Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993 Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothe...

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. 

Here we go again!

Yesterday, our family got to take another trip to the ER. Just a little after 7am, after I had fed Ethan breakfast and gave him his morning medications, he and I came into the living room to play before we had to get ready to leave for school. Ethan had 5 seizures, each lasting 10 to 15 seconds, back to back. Jeff had not yet left for work so I had him get the Diazepam, Ethan's rescue medication, and we gave it to him. The Diazepam is supposed to stop the cluster seizures, but it didn't. The seizures continued and didn't show any signs of stopping so the three of us packed up and headed off to the ER. By the time we arrived at the ER the drowsiness that is a side effect of the Diazepam was very evident, and although Ethan wasn't sleeping, he was definitely out of it. He had another small seizure shortly after we got to the hospital while we were being checked in. Once again his vitals were monitored and blood taken. The doctor spoke on the phone with our neurologist...