Monthly Archives: September 2015

Pause for PBD

Faith & Hope, Parenting, Special needs children, ,

On October 5th, we will Pause for PBD and I would like for you to join us.

On this day, the Global Foundation for Peroxisomal Disorders will be celebrating it’s 5th birthday, and in honor of this foundation that helps families affected by PBD, I’m asking for some favors from my readers. But before I do, let me tell you how this organization has blessed my life.

When Gideon was diagnosed, I didn’t know anyone who had a child with PBD. It’s pretty rare. Shortly after, I began blogging about my son and within a few days, my first post was shared with Shannon Butalla…who lives in Omaha Nebraska. When I told her what the doctors said (Gideon wasn’t going to live past one year old) she said, “I don’t want to tell you that your doctors are wrong, but they’re wrong.”  After 30 minutes on the phone with her, I was relieved to finally know someone who actually knew what the heck they were talking about in regards to PBD. Shannon has lived and breathed it for the past 13 years with her son, Sam.

Shannon and a few others are responsible for the inception of this organization that provides hope and support to families like ours. They provide a means for equipment exchange and through donations and fundraising, the GFPD was able to help cover the cost for us so we could attended their Family & Scientific Conference in Omaha.

Today, we are now connected with an enormous family of some of the strongest people I know…people who battle this horrible disease every day as it slowly pulls our children away from us.

So it’s my hope that you’ll be able to help the GFPD celebrate its 5th birthday in one or more of the following ways.

  1. Click HERE to purchase a Pause for PBD t-shirt (their goal is 300 shirts..but I think we do better than that!!)
  2. Share this LINK on your social media sites to help raise awareness & funds
  3. Use the hashtag #PauseforPBD on social media as well a photo of Gideon (or any other PBD babies you may know…You have my permission to share the one below.)

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I just want to say thank you to all my readers. Your comments and messages of support have meant more to me than I could every adequately express.

Thank you for continuing to follow our journey and don’t forget to Pause for PBD on October 5th!!

To learn more about PBD, click The GFPD.

 

 

 

Hope Kids- Legoland

Faith & Hope, Parenting, Special needs children

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Tonight we attended our first event with Hope Kids; which is this amazing organization for children with life threatening medical conditions. It’s the kind of club that we are so thankful for, but we wish no one needed it.

Hope Kids sets up different events every month. This evening was Legoland, next week is Jump Street, the week after that is family photos, and this list goes on and on. The best part is that every event is free for Hope Kid families.

We had such a great time tonight. Legoland was open only to our group so the lines were almost non-existent. Gideon actually rode a ride (he sat between Kevin and I) and he seemed to be engaged. It was a dark ride with flashing lights and right until the end, he sat between us like a big boy! Unfortunately, he passed out half-way through the night. Don’t worry, big sister hit every other ride for him.

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The people we met were amazing. All facing similar, heartbreaking struggles and yet I didn’t see one person downtrodden. Everyone was smiling and laughing… even in the midst of the trials they face. That’s when I realized what Hope Kids really does. Sure they provide the obvious free event; but what they really provide is hope.

Hope that these kids can have some sense of normalcy while they’re here with us. For the parents it’s a relief that for a few hours, no one is concerned about medication or the upcoming doctor’s appointment. And the siblings aren’t worried that people are going to be staring at them because their brother or sister is screaming, self-stemming, and/or drooling.

Tonight we felt like we were at a family reunion….and we only previously knew two other families there!! (One of which we met at Camp Allen! Shout out to the Sakzenian family!)

Thank you Hope Kids, for bringing us together. Thank you Legoland for opening up after hours, just for us. And if you give to this amazing organization let me just say another sincere thank you!! It’s only my first event, but I can say with confidence that with your money, you gave more than an experience… you gave a family hope.

If you or someone you know has a child with a life threatening illness, CLICK HERE and register to become a Hope Kid member. 

If you’d like to donate, click HERE.

Moving Forward

Faith & Hope, Parenting, Special needs children, ,

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Moving forward can be scary. When we move forward that means we leave behind what is comfortable and we venture towards that which is unfamiliar to us. Our entire journey with our son Gideon feels like the never-ending uncertainty of moving forward.

Last Thursday, after fasting and being sleep deprived, we took a very mad Gideon to Dallas Ear for another ABR (Auditory Brainstem Response….that’s fancy talk for a sedated hearing test). As always the doctors, nurses, and staff took very good care of our little man.

Unfortunately, the test results came back only slightly better than his April ABR (that is due to the fact that Gideon had fluid in both ears back in April). So as it stands now, our son is still severely deaf in his left ear and profoundly deaf in his right ear. This news was not shocking to us, because we’ve always known that many children with PBD lose more of their hearing (and vision) over time.

Aside from that crappy fact, the good news is that Gideon is now considered a candidate for a cochlear implant (CI). There are still a few hoops to jump through, but if everything is anatomically correct inside G’s head, we can move forward with the CI process.

While I am excited by this possibility of moving forward, I’m also a little uneasy. If I can be so honest, I have to admit that if Gideon had his vision, I’m not sure I’d be considering this route for my son right now. If deafness was the only challenge he faced, I think I would want Gideon to be able to make the CI decision for himself. But the unfortunate & sad truth is that my son cannot see & his life expectancy is short.

So what’s a parent like me to do? I’ve gotten lots of feedback from both sides. We have met several families who have been so pleased with the decision to go the CI route and the kids seem just as happy with their ability to hear. I’ve also heard from the deaf community, many of which make a great argument that there is not anything wrong with being deaf and I agree! Deafness does not stop people from living happy, productive, and fulfilling lives. My cousin and his wife are living proof of that of that truth and very much an inspiration to everyone they meet.

At the end of the day, our situation is simply unique. And no matter what we decide, moving forward is scary. Kevin and I have the daunting task to decide what is best for our terminal son. As I finish typing this out, tears are still wet on my face and truthfully I don’t want to make decisions like these…this part of life sucks. But I also don’t want my son to live his shortened life in both silence and darkness.

Since he can’t see my face, I want him to at least hear my voice.

Thank you all for your continued prayers as we journey down this road with our son. We are trusting in the Lord and in His timing for everything as we move forward.