Skip to main content

Friday 11/5/2010

It has been a busy week!

Monday
Ethan saw the dietitian and the developmental hearing specialist. The little guy weighed in at 12 lbs. and 3 1/2 oz. and was 24 and 3/4 inches long. YEAH! Ethan played with the hearing specialist and we are looking forward to meeting with her two times a month. She'll see him again near the end of the month after he gets his hearing aids.

Tuesday
Ethan and I went to our first Baby Talk Times (playgroup). This was great - something very "normal." We plan to go back.

Wednesday
We had a play date with friends! Yeah, I was so glad that we got out and did this. :)

Thursday
Ethan and I went to Springfield to see the Audiologist for another ABR and his hearing aid evaluation. He slept long enough to get another complete ABR!!!! This was so great, because it allowed them to get a more complete picture of his hearing loss. At this time, he has moderate loss in both ears (hearing loss is measured on a scale - mild, moderate, severe, profound). Following the ABR they made ear mold impressions for his hearing aids - which will be a very nice blue color - that he'll be getting on the 23rd. I am very excited that we'll be able to get hearing aids on him so soon - the sooner the better when it comes to development!

Jeff's parents came over to visit in the evening and they got to see Ethan roll from his tummy to his back! I was so excited because although that was the 4th time he'd rolled from tummy to back, Jeff and his parents had never seem him do it before! I am so proud of our little guy!

Friday
We went to the infant play group at Pershing Early Learning Center (where Ethan will go to preschool - when he's older). There was only one mom and her son, a very cute 2 month old, there, but we had fun anyway. It was nice to get out of the house and to talk to another mom of a little one.

This weekend Jeff's brother and his wife will be visiting with their two little ones, so we'll have lots of great family time!

Monday I'm going to get to meet another mom whose little one has a PBD. I'm so excited about meeting my new friend in person.

Please continue to pray for all of the children affected by PBDs. Please pray that they will be able to avoid major illnesses this winter (getting sick is really tough on our kids).

Labels

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