Our son, Ethan, was diagnosed with peroxisomal biogenesis disorder - zellweger spectrum disorder (PBD-ZSD), a very rare genetic disease, when he was just four weeks old. There is no cure for PBD-ZSD and treatment is symptomatic. This is our family's journey.
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I just want to say a big thank you to those of you who must have prayed for Ethan's eating! Tonight at dinner he at 2 or 3 oz. rice cereal, about a 1/2 oz. of green beans and 1 oz. of peaches. He was a hungry little hippo. :)
I read some of the guest-book entries today and was brought to tears. Thank you so much for the prayers, thoughts and concern about our little man. We love him so much!
I feel like there isn't a lot to report on from last week. Right now we seem to just be in a holding pattern - we have a routine.
-Each Monday Ethan's developmental therapist - hearing (DTH) comes for her visit. Ethan's DTH, is great!
-Tuesdays we try to go to Baby Talk, today we didn't get to because the plumber was here (we are working on getting the bathroom in the basement finished).
-Wednesdays Ethan's PT comes. She is great too! Last week she had Ethan work on an exercises ball for part of the session. We are still working on supported sitting.
-Thursdays and Fridays are usually low key. Although last Thursday Ethan had his appointment with the vision therapist. He is doing so great though, that instead of twice a month she may only come once a month! We will wait until our visit with the ey…
Stayed up late last night reading "Heaven is for Real" by Todd Burpo, I just couldn't put it down! I have always believed heaven is real, but with Ethan's diagnosis, this book was a refreshing reminder of how great a God we serve and that truly "For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life." - John 3:16
Just heard this song today - Mark Schultz "What It Means to Be Loved." You might want to have some tissue ready... but it just be our new theme song for our family. And although our story may not end up like the one in the song, my daily mission must be to alwasy so Ethan "what it means to be loved."
Another little one is now with Jesus. Yesterday, Joel Smith, left this world and was healed forever of PBD by the Great Physician. Joel's parents, Karen & Steve, are believers and know that their son is in heaven, but please keep them in your prayers.
When I talked with Karen yesterday she asked that we pray for a couple of things specifically:
-that her, Steve and brother Caeden would be able to get some rest
-that through Joel's life and death that others would come to know Christ personally.
I would ask that you would also pray that they would feel God's presence and comfort each day as they will miss little Joel so very much.
This week has been a week of adjustment. As I wrote last week, Ethan finally got his helmet - a real answer to prayer since we started the process before Thanksgiving!
Monday afternoon after coming home from the doctor's office we had Ethan's weekly session with the Developmental Therapist - Hearing (DTH) Julie. We love Julie, she's great! Ethan was in a pretty good mood, everything considered. On Monday he wore the helmet for one hour, then got a one hour break, and then started the cycle over again. He did not have to sleep in the helmet Monday night.
Tuesday, Ethan wore the helmet for two hours then had an hour break, then repeat. This was tougher....
Wednesday, it was four hours on, one hour off. He also had PT on Wednesday. Ethan has had a slight setback in some of his gross motor skills due to the helmet - but our PT assured me that he'll make the adjustment in a matter of a few weeks, and he'll be fine. Ethan wasn't in a very good mood f…
It seems like its been such a long time since I wrote. The passing of Ellie Prince hit me hard. Ellie was born just about six weeks after Ethan and soon after her diagnosis her mom and I "met" through the online parent group. I had hoped and prayed that Ellie and Ethan would be on this PBD journey together for a long time, but that wasn't in God's plan. Little Ellie is now healed of this disorder and in the presence of the ultimate physician - Jesus Christ. Please continue to pray for the Prince family. It is my prayer that they will find the love and comfort only the Lord can provide.
Last week was a busy, yet productive one, for us. On Monday, March 7th we had Ethan's six month review of his Early Intervention (EI) services. It is so hard to believe that he is nearly 8 months old and we've known about this horrible disorder for over six months. I am so thankful though that despite everything Ethan is doing well.
Please pray for the Prince family from England. Their little Ellie left earth to be in heaven with Jesus today. Little Ellie suffered from the same disorder as Ethan and was born just about six weeks after Ethan was. You can read about Ellie's PBD fight on the blog that her mom wrote.