Skip to main content

God is good, all the the time. All the time, God is good!

"God is good, all the time. All the time, God is good." I know this in the depths of my heart, but sometimes it is good to say it aloud anyway. Especially when things aren't going the way that we'd like them to go or it seems like there is more bad than good occurring in the world around us. I try to always remember that God is good, all the time and all the time, God is good!

With that being said I will admit that in many ways the last week has been an easier week to believe that. Things are almost "normal" around here. I don't like the word "normal" anymore, since everywhere I go and everything in our lives reminds me that Ethan isn't "normal," but the word works well to describe the last week or so.

Last week we had our usual Wednesday, Physical Therapy, on Thursday, Ethan met with the Dietitian in the morning and his DT-Hearing in the afternoon, and on Friday, I took Ethan to JCPenney's to get his 10 month pictures taken. All the visits went well and Ethan is making progress, even if it is slow, there is still progress, so we have so much to be thankful for!

Another huge answer to prayer came Friday in the mail. We were awarded a stipend from the ARC of Illinois that will cover all the remaining costs associated with us attending the GFPD Conference in Omaha, NE later this summer! This is an enormous blessing for our family! Thank you DSCC and ARC of Illinois! Thank you for everyone who partnered with us in prayer. Please continue to pray for other families as they continue to fund raise and wait to hear from the different sources they have applied for help from -- several families will not be able to attend the conference if they do not receive assistance.

This week may end up to be a quiet one.... only one therapy appointment this week, OT on Thursday - it usually isn't like that but with it being summer and therapists on vacation, etc. it just turned out that way.

Yesterday, Ethan and I went for a nice long walk with our friends Alex and Sara. Alex is one day older than Ethan. Sara and I met at our BabyTalk playgroup. It was great to get out and enjoy the nice day with a friend. After our walk, Ethan and I went to my in-laws and were later joined by Jeff and we all enjoyed a nice dinner cooked by my mother in law and spent some time catching up as a family. All of the visiting must have really wore Ethan out, because he slept from just a little after 8pm to almost 5:30am this morning!

It was raining this morning, so Ethan and I stayed in and didn't adventure out for our usual Tuesday and Thursday walk with Sarah and Rachel. We did get to BabyTalk though, and I'm always glad when we get to go. I'll admit that it is hard to see how much all of the other kids are doing, compared to Ethan, but it is still good for us. I enjoy spending time with the other moms and it is good for Ethan to be around other kids - even if he doesn't really play with others.

Ethan has had two great achievements in the last two days as well. Yesterday, he ate an ounce of stage 3 baby food! This is very important because we are trying to get him to accept different textures and the stage 3 baby food has "chunks." I was very excited! Then, this morning Ethan took 2 oz. of his formula from his new cup. His speech language pathologist (SLP) recommended us try the NUK learner cup with silicone spout, so we got one yesterday. I tried it this morning and he drank from it! He isn't holding it yet, and he took it like a bottle, but at least it is a start. I'm still thrilled!

This Friday the MOPS group I'm a part of has a picnic scheduled. Hope the weather will be nice, we are having it rain or shine! :)

I have also been attempting to get a parent network together here in central Illinois for parents who have children with combined hearing and vision impairments. I have been so blessed by the parents that I have met through the GFPD that I want to try to find other parents in my area that although their child has a different diagnosis may have similar challenges. Ethan's EI therapists are sharing my desire to start a group with their other families. BabyTalk has even offered us their building as a place to meet! I hope that other parents will be interested in getting together.

Prayer Requests
  • Prayer for all families impacted by PBDs. Pray that those who do not know the hope of Jesus Christ, will come to know Him personally.
  • Pray for the families whose little ones are now in Heaven. Pray for the Lord's comfort and strength.
  • Pray for healing for the children who are still fighting this disorder each day. Pray for miracles! Pray for the discovery of treatments and a cure!
  • Pray that parents will have the wisdom to make the best decision they can when it comes to the health, well being and quality of life of their children.
  • Pray for the continued preparations for this summers GFPD conference.


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.