Jeff was off today. He returned from his trip to his cousin's wedding in Georgia late on Sunday. We had a nice lunch out and then spent the evening with some friends. I was a bit nervous about Ethan and the fireworks. I made sure that I took out his hearing aids so that they wouldn't scare him too much. I was hoping that he might react to them visually, but in the end it didn't matter - he slept through them! Maybe next year! :)
Today we went to our playgroup at Baby Talk. It is so hard to believe that Ethan is now one of the older kids! I enjoy this time each week. I enjoy being with other moms and doing something that doesn't involve therapists or doctors. Yet at the same time it is getting harder and harder each week as the other kids Ethan's age are all crawling and/or walking - leaving Ethan behind in the dust. It is also hard to see all of the new little babies that I know will also soon be "doing more" than my precious little man. But we have much to be thankful for - we are so proud that Ethan sits independently (he can't get into the position by himself) and while we always keep pillows behind him in case he tumbles, he seems to really enjoy playing with toys while sitting.
I am very excited that Baby Talk is allowing us to use their playroom for the new Central Illinois Parents of Children with Special Needs group. We will have our first meeting/playgroup next Wednesday morning!
This morning Ethan had physical therapy. He wasn't in the working hard mood! He did not want to do any weight bearing - which is what we are really trying to get him to do. He tolerated being on his hands and knees a bit but didn't want anything to do with supported standing.
In the afternoon we had Ethan's 11 month pictures and he actually smiled! I was very pleased with how they turned out! We get to pick them up next Friday.
This morning Ethan had occupational therapy. He worked a little bit harder today than he did yesterday, but his OT didn't even try to get him to stand. We are working a lot on upper body strength and skills in OT, such as placing balls in a container and putting weight on his arms to help him transition out of sitting and someday into crawling.
Ethan and I stayed home in the air conditioning all day and then after Jeff got home we all got ready for our pictures for the church directory. Those of you who know me well know how much I dislike pictures, but I guess we did end up with a decent one. I'm sure Ethan was wondering why he was getting professional pictures done for the second time in a week. :)
Afterwards we went over to Jeff's parent's house and fed Ethan and visited for a while before returning home. Ethan did not want to go to sleep last night. I took a nap from 10:30 to 11:30pm while Jeff watched him and then we were both up with him until nearly 12:30am. He was one very unhappy little man.
- Pray that all families impacted by PBDs would feel the love and strength of Jesus. Pray that those who do not personally know the hope that comes with knowing Jesus as their personal Lord and Savior will put their faith in Him.
- Pray for healing. Pray that there would not be suffering or pain. Pray that the doctors will discover new ways to treat and someday even cure children of these dreaded disorders.
- Pray for wisdom, guidance, patience and strength for parents and caregivers who love these children so much. Pray that they will be able to make the best decisions possible when it comes to their precious little ones health and well being.
- Pray for the first annual Global Foundation for Peroxisomal Disorders conference that will take place in Omaha, NE in less than three weeks. Pray for safety as families and specialists travel from around the country and world to attend. Pray that amazing things will happen during and because of the conference.
- Pray for the new support group that I am starting up here in Central Illinois. Pray that it will minister to the needs of parents that have children with special needs.