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Tuesday 3/29/2011

I read some of the guest-book entries today and was brought to tears. Thank you so much for the prayers, thoughts and concern about our little man. We love him so much!

I feel like there isn't a lot to report on from last week. Right now we seem to just be in a holding pattern - we have a routine.
-Each Monday Ethan's developmental therapist - hearing (DTH) comes for her visit. Ethan's DTH, is great!
-Tuesdays we try to go to Baby Talk, today we didn't get to because the plumber was here (we are working on getting the bathroom in the basement finished).
-Wednesdays Ethan's PT comes. She is great too! Last week she had Ethan work on an exercises ball for part of the session. We are still working on supported sitting.
-Thursdays and Fridays are usually low key. Although last Thursday Ethan had his appointment with the vision therapist. He is doing so great though, that instead of twice a month she may only come once a month! We will wait until our visit with the eye specialists in Iowa to make this decision though.

This Thursday we will return to the Audiologist, I hope that Ethan will sleep for them so that they can finish the ABR. He is doesn't like to nap and when he does it usually isn't for very long, so I'm not sure how well this will work out.

On Friday we have our first MOPS playgroup at church. I'm excited about MOPS coming to our church, but I have to admit part of me is worried because Ethan isn't an "average" child and I am beginning to feel out of place with moms that don't have special needs children. Please pray for me about this. I want to be able to be happy and celebrate with other moms as their children reach milestones, but it is hard because Ethan is on a very different timetable than the "average" child.

A week from today we have our appointment with the eye specialists. I hope that they will be able to give us more insight about Ethan's vision and ideas of what we can do to help him fully utilize the vision he has. I must admit, although we know that there are some vision issues, he does use his sight rather well.

Next week Ethan will start twice a month OT. I'm excited about this so we can try to work to increase his fine motor skills as well as his gross motor skills (PT).

One of the things that has been occupying a lot of my time lately is helping with the Global Foundation for Peroxisomal Disorders family registry. The GFPDs website is now up and running, please visit it at Ethan's picture is even on it - it's an older picture so I challenge you to find it. :)

I've also been spending time getting to know other moms who have little ones affected by PBDs. I am so thankful for the support group and the power of Facebook!

Prayer Requests
-Healing for Ethan and that God will continue to touch him and work in him. That Ethan will continue to make progress (on his own timetable) toward major milestones.
-Healing for all children impacted by PBDs.
-God's peace and comfort for families who have lost little ones to this nasty disorder.
-Dedication and knowledge for the doctors, researchers, therapists, and teachers working to help children and families impacted by PDBs.
-Development of new treatments and a cure for PBDs!
-Ethan would continue to eat well (he's beginning to eat a little more baby food).
-Ethan will continue to tolerate his helmet. He is now up to wearing it the recommended 22 to 23 hours a day.
-Pray for the upcoming GFPD conference this summer.
-That Jeff, Ethan & I will cherish and seek to honor the Lord each day.


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