Skip to main content

Monday 1/24/2011

Ethan's been on antibiotics since Thursday, and he seems to be feeling a tad bit better. He's still really congested and has tons of snot, but he has had a better appetite today, so that is really good.

We had our monthly visit with Ethan's speech language pathologist, Betsy, today. She was excited about Ethan's ability to make and maintain eye contact. She was hoping to hear more constant sounds (right now all he has is the "m") but she was thrilled to see him rolling and trying to sit.

The big news of course is that yesterday Ethan was 6 months old. With his disorder that is a big date to get too, and 1 year will be even bigger. I've already told my father-in-law that we'll be having a huge first birthday at the church for this little dude!

I continue to pray for a miracle each day, and recognize that God's already been answering our prayers - overall, Ethan is doing so well. My grandma reminded me of something that is important to remember - prayers are always answered, the answer may be, yes, no, or not now/not the way you think. I know and have faith that if Ethan is not healed here on earth that he will be healed forever in heaven at the throne of Jesus.


Prayer Requests
-Pray for a family in MO whose baby went to be with Jesus last week.
-Pray for baby Ellie in England.
-Pray for all of the kids and families impacted by PBDs - please pray that our kids will be able to stay healthy throughout the winter, and if they do get sick that they will be able to bounce back easily.
-Pray for wisdom as Jeff and I decide about a new eye doctor for Ethan - we may go to Children's Hospital at St. Louis or the University of Iowa (Iowa City) to see specialists.
-Pray for the families who have recently lost their little ones.
Labels:

Comments

Post a Comment

Popular posts from this blog

"God Chooses Mom for Disabled Child" by Erma Bombeck

I don't think this is exactly how it works, but I had to share anyway. I believe with all my heart that God does not make mistakes, and although I will fully admit that it hurts my heart that any child is born (or develops) disabilities and/or life threatening illness, I know that God is sovereign and that He has a divine plan (even when we don't understand it!). I believe that God brought Jeff and I together and that He knew Ethan even as he was growing inside of me. While this is not the journey we would have dreamed of or chosen, and there are going to be times (and have been already) when we struggle, stumble and fall  it is our hope that in the end that we will bring glory and honor to the Lord.  God Chooses Mom for Disabled Child Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993 Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothe...
Post a Comment
Read more

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. 
1 comment
Read more

Here we go again!

Yesterday, our family got to take another trip to the ER. Just a little after 7am, after I had fed Ethan breakfast and gave him his morning medications, he and I came into the living room to play before we had to get ready to leave for school. Ethan had 5 seizures, each lasting 10 to 15 seconds, back to back. Jeff had not yet left for work so I had him get the Diazepam, Ethan's rescue medication, and we gave it to him. The Diazepam is supposed to stop the cluster seizures, but it didn't. The seizures continued and didn't show any signs of stopping so the three of us packed up and headed off to the ER. By the time we arrived at the ER the drowsiness that is a side effect of the Diazepam was very evident, and although Ethan wasn't sleeping, he was definitely out of it. He had another small seizure shortly after we got to the hospital while we were being checked in. Once again his vitals were monitored and blood taken. The doctor spoke on the phone with our neurologist...
Post a Comment
Read more