Skip to main content

Monday 2/14/2011

Happy Valentine's Day. This year I am blessed with two valentine's - my wonderful hubby and my precious little boy.

This past week was a busy one - but I guess most of our weeks are.

Monday 2/7
-Ethan had a visit from an Early Intervention developmental therapist. Ethan doesn't see a DT regularly, but she was here to do his six month assessment.

Tuesday 2/8
-Ethan had his monthly visit from his dietitian, Jen. Ethan weighed in at 17 lbs. 9 oz. and is 27 1/2 inches long. Jen had us introduce a sippy cup - Ethan was not impressed. She has encouraged us to attempt baby food twice a day and to introduce the sippy cup each time we feed him in the high chair.
-Ethan "likes" bananas, peaches, pears, apples and sweet potatoes. He "tolerates" carrots, and HATES peas!
-The sippy cup isn't going to well, but we'll keep trying.

Wednesday 2/9
-We had a visit from our Department of Specialized Care for Children (DSCC) case worker. The DSCC paid for Ethan's hearing aids and is a state organization whose entire focus is on special needs kids. Ethan will be able to be involved with the DSCC until he is 21.
-We had hoped that they would be able to help with the helmet we've been trying to get for Ethan (to help reshape his head) since before Thanksgiving, but they aren't going to be able to. Our case worker spoke with our Early Intervention care coordinator and EI is going to try to help. Our insurance denied the helmet because they consider it cosmetic - yeah, right!

We didn't have any appointments Thursday or Friday. On Saturday night Jeff and I took Ethan with us to our church's Valentine's Day dinner - overall he did really good. :)

Sunday was great. Ethan and I were able to hear the whole sermon (we sit out in the foyer, and there are speakers so we can listen) which was a great sermon on the Sanctity of Human Life. Pastor Tracy shared scriptures that helped me remember that God knew Ethan even before he was concieved and that He has a very special purpose for my little man. Psalm 139:13 says "For you created my inmost being; you knit me together in my mother's womb." It was a wonderful sermon reminding us of how precious life is. Afterwards we had a fellowship meal and then had our second winter Bible study session. Pastor Tracy is leading us through the book of Galatians. I am really enjoying this study. Yesterday's focus was on GRACE, and that it is only God's Grace through His son, Jesus Christ, that we are saved! We also talked about how Paul's life is a testimony to God's grace and how Christ's love is transforming - you just have to believe. John 3:16 says "For God so loved the world that He gave his one and only Son, that whoever believes in Him shall not perish but have everlasting life."

I'm looking forward to this week - it's supposed to be so much warmer! High 40s to low 60s by the end of the week! I'm so excited - I may bundle Ethan up and go for a walk outside. :)

On Tuesday we are going to go to our Baby Talk playgroup - we've missed it, 2 weeks ago it was cancelled due to the snow and last week we didn't go because it was so cold! In the afternoon Ethan has his six month visit with Dr. Smith and of course those wonderful six month shots!

Wednesday Ethan has Physical Therapy in the morning and his Occupational Therapy evaluation in the afternoon. I am hoping that we'll be able to add OT to his therapies. The OT will be able to help Ethan with fine motor skills and help him learn to use a cup, hold a spoon, etc.

On Friday we might try to go to the Pershing playgroup again. We haven't been there since before Christmas. We'll just have to see how the week turns out.

Prayer Requests
-Please continue to pray for all families impacted by PBDs.
-Please pray that Ethan will continue to eat more baby food and be successful as we begin transitioning him from the bottle to the sippy cup.
-Please pray that Ethan will continue to make developmental milestones. We are still working on sitting - he can know tripod sit for 10 to 20 seconds.
-Please pray that the financial cost of the helmet will be taken care and that EI will be able to cover this for us.
-Please pray that Ethan will remain healthy and happy.


Popular posts from this blog

So much and so little to write about...

When I started this blog I don't think that I could have imagined a time would come in which months would go by without me writing. However, that is what has happened.

So much has changed over the last almost eight years since Ethan's birth and subsequent diagnosis with PBD-ZSD, yet at the same time so much hasn't. Unlike parents of typically developing children we find ourselves still parenting a child with complex medical needs who's developmental skills range anywhere from 9 to 18 months. Ethan still has PBD-ZSD, and right now his uncontrollable seizures are a major issue. We still fight PBD-ZSD the best we can each day with a basket full of medications and supplements and other medical interventions (feeding tube, cochlear implant, AFOs, etc), numerous therapies, school (which Ethan loves), and prayer. We advocate for him and all children and families impacted by PBD-ZSD and related peroxisomal disorders through our involvement in the Global Foundation for Peroxiso…

#PauseForPBD -- October 5, 2017

October 5th is a special day for our family as we celebrate #PauseForPBD, the annual awareness day for The Global Foundation for Peroxisomal Disorders (GFPD). [Jeff's birthday also happens to be October 5th but he doesn't seem to mind sharing it with #PauseForPBD day.] Our son, Ethan, is 7 years old and is one of less than 200 children, known to the GFPD, living worldwide with Peroxisome Biogenesis Disorder (PBD).  Ethan has a contagious smile and laugh, despite the fact that PBD has caused him to have severe cognitive and physical delays. Peroxisome Biogenesis Disorder (also known as Zellweger Spectrum Disorder), is a rare, genetic condition affecting multiple organ systems in the the body. PBD is generally fatal in childhood. As a parent, it is difficult to express the sense of loneliness and feelings of isolation that enter your life when your child has a rare genetic disease that most people have never heard or and has no cure.
However, #PauseForPBD, is a day that brings o…

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit.  All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL.  We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders.

Here are just a few of the faces of PBD.