Being a parent is hard work....

Being a parent is hard work.... and it is even harder when you have an extra special little one and you have to make decisions that you'd never have thought you'd have to make for your child.

For example, a good friend whose little one has the same disorder as Ethan is facing the decision about when and where to do the little one's cochlear implant surgery. This is a decision that we will most likely face someday too... We are struggling with the decision about what to do about an experimental medicine that might help Ethan, but it hasn't ever been studied in PBD kids before.... so they don't know if it will really help or not... not sure what the side effects could be (although the medicine itself typically has few minor side effects) in kids with PBD..... The medicine is so expensive that the nurse at our genetics office couldn't get the distributer to even tell her how much it cost.... So we have so much to think about, pray about, and decide.

Last week, Ethan finally got his 1 year shots. Ethan had meetings with his hearing teacher, speech language pathologist, and occupational therapists. For the most part Ethan did pretty well in therapy and even showed off a little.

We took it easy on Monday morning, and went with Jeff to the Social Security office to begin the process of applying for disability for Ethan. While Ethan will most likely be denied, it is an important step we need to do. Zellweger Syndrome and NALD are on the Social Security Office's "Compassion" list, but since everything is income based.... I sure wish they would take in account all the expenses that come with having a kid with special needs, but they don't...

This morning we went to playgroup at BabyTalk. I am always happy when we get to go. Ethan's friends Will & Alex were there too. These boys and a few others who weren't at playgroup have been together for months. While it makes me sad that Ethan isn't where they are, it is so neat to know that the boys and my BabyTalk friends just see Ethan as Ethan. They know he is special and they are supportive and loving, even if they aren't able to relate to what we are going through. I'm also super excited that the "Special Connections" playgroup is starting next month!! I'm looking forward to that time with other moms who do "get it." Thank you BabyTalk for adopting us and helping my dream of a parent support group become a real reality!

We were supposed to go walking this afternoon with Sarah and baby Grace, but Ethan has decided to take a nap instead, which is just fine. Maybe we'll take a family walk this evening when Jeff gets home.

Tomorrow is Ethan's 1 year review of all of his Early Intervention services (IFSP). I think it is going to be a tough day for me. I know that Ethan is behind, but when I hear how far behind he is, it still hurts. One thing that I can't help but think about is that he is going to just keep falling further and further behind. Although he is making progress, he just can't keep up. It makes me sad, but I know that Ethan is exactly where he is supposed to be -- he is on his own timeline and schedule and he'll do things when he is ready. I am so thankful for his great team of therapists. I know that they care about Ethan and are dedicated to helping us help Ethan reach his fullest potential.

Prayer Requests
-Pray for all families and children impacted by PBDs.
-Pray for the doctors, researchers, and therapists who dedicate themselves to helping PBD kids. Pray for new treatments and a cure!
-Pray for miracles!
-Pray for Ethan's IFSP meeting on Wednesday. Pray that the team will be able to continue to meet Ethan's needs and that he will continue to grow and develop.
-Pray for wisdom for Jeff and I with the decisions we need to make regarding what is best for Ethan and our family.


Popular posts from this blog

Faces of Peroxisomal Biogenesis Disorders

#PauseForPBD -- October 5, 2017

2017 GFPD Conference Recap