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 for therapy, but he did cooperate during the first half. In addition to sitting, we are working on having Ethan bear weight on this hands and knees (in preparation for learning to crawl). Ethan slept in the helmet for the first night.
Thursday, it was eight hours on, one hour off! What a tough day on the little man.... Second night sleeping in the helmet.
Friday, the helmet is now supposed to be worn 23 hours a day! We've cheated a little bit, giving him a few miny breaks because he'll get so upset there is no way to console him, but we are trying our best to keep in on 23 hours a day. The more compliant we are, the quicker the helmet should work.
Friday evening we drove to Mt. Vernon to my parents. First we stopped at the hospital in Centralia to visit my grandpa (my mom's dad) who was recovering from surgery. It was a nice visit with my grandparents and my parents at the hospital. Ethan even showed off for everyone, which was great. Ethan and his great-grandpa are buddies.
Saturday my mom watched Ethan while Jeff and I attended a conference for parents who have children with hearing loss. It was a really great conference and we learned about some different resources for families with children who have hearing loss. There were nearly a dozen other families there in addition to professionals. Everyone was really nice and it was nice to meet some other families that are dealing with at least one of the issues we are. We got so much information!
I have to admit though that it was hard for me to stop thinking.... but, hearing loss is the only challenge your children face.... I know that is awful, because this is still a HUGE challenge, but since Ethan's hearing loss is one of the few things about PBDs that we can actually treat (if his hearing progresses to a point that his hearing aids are no longer helpful we will implant) it was still hard to relate in some ways with the other parents.
With that said, I am still very glad that we attended the conference! There is another conference next month for parents with kids who are visually impaired. We've got to decide whether or not we are going since there are some scheduling issues, but if we don't this year, I sure want to next year.
This week will be a bit busier than last. Monday, Ethan has his weekly DTH visit, on Wednesday will be his weekly PT visit, and Thursday will be his bi-weekly DTV (Developmental Therapist - Vision) visit.
One very cute thing that Ethan has really been doing a lot of lately is "dancing." He is so cute as he wiggles his whole body, especially to music. Hopefully, I'll be able to catch it with the video camera soon. He is also getting better at making "raspberries," although this is still only when he decides he wants to "talk" to you.
We just love our little man so much. Thank you to everyone who continues to pray for and support us as we take the road less traveled as parents of a beautiful boy with a very rare diagnosis. It is hard to believe Ethan will be 8 months old on Wednesday and we've known about peroxisomal disorders for seven months. Sometimes it feels more like seven years!
I am so grateful and thankful to the other parents that I have met that are on their own unique PBD journey. Thank you for sharing yourself with us! We are looking forward to meeting other families that have been impacted by this disorder in person this summer at the first Global Foundation for Peroxisomal Disorders conference!
Please pray that ...
-Ethan will continue to adjust to his helmet and that it would no slow his progress towards milestones.
-Ethan would be able to master prop sitting (using his hands for support) this month! We are working very hard at this - he can do it for several seconds and sometimes for a minute or two, but he isn't too steady yet.
-Ethan will continue to soak in all that he is hearing and seeing and that he will be able to learn to use his hearing and sight to their fullest potential.
-All families impacted by this disorder would find comfort and peace in Jesus Christ.
-The Lord would heal Ethan and all the children impacted by this disorder.
-The researchers, doctors, therapists, and specialists who work with our kids would be able to be given the strength, the knowledge, and the compassion to continue advocating for our kids.
-Treatments and eventually a cure for PBDs would be found. I am a firm believer that God has blessed us with modern medicine and often uses it to perform miracles for His glory.
-All the families that would like to attend the GFPD conference this summer would be able to. Attending the conference can be very costly, registration fees, lodging, and travel - the conferene is in Omaha, NE.
-Jeff and I will draw closer to God and one another as attempt to be the best parents that we can be for Ethan. Pray that we will find strength and refuge in the Lord daily. Pray that we will never forget that Jesus loves Ethan even more than we do.