Ethan had occupational therapy (OT) on Thursday, July 16th. The OT is working to help Ethan improve his fine motor skills. We have noticed that his reach is much more accurate when he wears his glasses, but he just doesn't like them. He loves to rip them off of his face, taking his hearing aids with them. So, we try everyday but we haven't had a lot of success when it comes to keeping them on.
Last week was Vacation Bible School (VBS) at our church. We only made it to VBS on Monday. Ethan and I went to the opening worship rally and I think he liked the music :) and then we hung out in the nursery. Tuesday, we went to our playgroup at Baby TALK. Wednesday, Ethan had physical therapy (PT). The PT is working with Ethan to improve and advance his gross motor skills - particularly weight bearing on his arms and legs - so that he can gain the skills needed to crawl and eventually walk. Thursday, Ethan had speech. The speech language pathologist got to see Ethan eat his breakfast and we tried to work on the sippy cup -- he just isn't impressed. She was glad to see how well he was eating, texture and quantity. She also got to hear him vocalize the "b" sound - which he has been doing for about two weeks now! We are also starting to explore using PECs (picture exchange communication system) to use in conjunction with verbal and sign communication.
Yesterday we had an appointment to check the progress of Ethan's head shape. He is only wearing his helmet at night now. Ethan has continued to make progress and we'll go back again next month to see how it has improved. When we were at the office I got to tell a mom about the new group, Central Illinois Parents of Children with Special Needs, that we have formed. I was so excited! The support network isn't about isolating our kids from the rest of the world, but rather to find others who "get it" when it comes to being the parent of an extra special little one!
This morning after our our walk, with Sarah, Rachel and Anna, Ethan and I went to Baby TALK. Ethan played with toys and didn't get to fussy until the end. There were several new moms to the group and I was able to share with them about the new support group. I am so thankful that Baby TALK is going to allow us to use their building for our meetings/playgroup.
Tomorrow afternoon Ethan's hearing specialist is coming to the house and is meeting with us and the deaf-blind specialist. Due to Ethan's combined hearing and vision losses, he is considered deaf-blind. But if you have ever met our little man you know that he uses his hearing (the hearing aids bring him up to almost normal) and his vision really well. He loves to play and laugh and eat and interact with his surroundings. It is still important though that we are a proactive as possible by using techniques and strategies that will help him learn, explore and communicate.
We are staying busy.....
Please continue to pray for us and all families impacted by by peroxisomal biogenesis disorders. We are looking forward to the conference next month and getting to meet so many other PBD families.