ENT visit

We had Ethan's six month check up/in with his ENT this afternoon. Overall, the visit went well. Ethan's ear canals are still REALLY small and I'm not sure that she could see much but otherwise she said Ethan looked good and that his cough and the boogers were likely just viral since his throat looked fine and she didn't see any redness in his ears.

Ethan's hearing tests over the last year had some really mixed results, so we are planning on doing a sedated ABR this fall. He has never had one. We've done natural sleep and booth testing, but we need a good picture of where his hearing really is, especially since for many kids with PBD it seems that there is a dramatic change in hearing around the ages of 2 to 4. What makes it more difficult is that we are trying to coordinate having an MRI done at the same time/day so that Ethan would only have to be put under once.

Why a sedated ABR? It will give us the best results to let us know where Ethan's hearing really is. This will allow his audiologist to set his hearing aids at the optimal level/setting and/or if the results show us that his hearing has gotten bad enough it will allow us to begin the road toward cochlear implants.

Why an MRI? Well, Ethan has not had one since he was 3 weeks old and while nothing an MRI shows/tells us will change anything that we are doing for Ethan, it might give the specialists a bit more insight into PBD and also let us know how the disease is impacting our little man's brain. Do I want an MRI? NO, I mean I know my son's brain is impacted by PBD, but could knowing more about the progression of this disease be helpful -- I think so. This might be even more important since as you all know Ethan has continued to take Cystadane, the trial medicine that we hope may increase the function of his peroxisomes. So, while I don't want it, I know we should.

Prayer Requests

  • Pray for Ethan's friend Ginny. Ginny had her cochlear implant surgery today. She will be 4 this summer. Her mom, Melissa, is a dear friend to me - a sister in Christ and in this PBD journey. Please pray for a speedy recovery and a very successful transition in the coming weeks and months as the implant gets activated.
  • Pray for families who have just recently received the news of a PBD diagnosis. It seems like we (the GFPD) have had a large number of families join our group in the last few weeks, most with very young little ones.
  • Pray for miracles, pray for healing, pray for treatments and a cure. Please lift up the doctors, researchers, nurses, therapists, and teachers that help us try to help our kids reach their fullest potential.
  • Pray that Ethan would wear his glasses. He is still refusing. He rips them off so quickly and even with two adults we can't keep them on him. He lurches and screams and cries. He really hates them.
  • Pray that Ethan would remain healthy and that he would continue to grow, develop and learn. Pray that he will learn to stand, walk, talk, and be happy and healthy.
  • Pray that we will have wisdom and feel God's presence as we make decisions, care for, and love Ethan daily.
  • Pray that people will come to know the Lord and His hope.


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