Skip to main content

A tough couple of days....

It has been a tough few days around here....


  • We got a huge water bill and found out that one of our toilets has been running nonstop and needs fixed.
  • The oven stopped working correctly this week.
  • Ethan didn't fall asleep on Thursday night until 2:30am on Friday morning. At 2am we put him in the car and drove around!
  • Friday afternoon Ethan started running a pretty high fever so we headed to the doctor's office. Doctor Smith said it was either a virus or related to the teething and to just keep treating with Tylenol and ibuprofen. 
  • On the way home from the doctor's office we got a flat tire! Jeff came and got us and he took Ethan and I home and then headed back to change the tire and then take it to Walmart to buy a new one.
  • Ethan was fussy much of Friday evening and didn't go to bed until 11:30pm (with us) so I didn't sleep well at all.
  • And we are still waiting for text results.....
Today was much better though....
  • We all slept in! And although Ethan was still a bit warm he was acting much more like himself. I really think it is his teeth. The poor little man has been working on those top two teeth for so long!!
  • We worked on laundry and dishes and spent time as a family.
  • A friend came over and helped Jeff fix the toilet. 
  • Jeff's parents came over and watched Ethan so Jeff and I could go to Sears to look at ovens. We found one and it will be here on Thursday, so we'll be doing lots of microwave, toaster oven, skillet, and crock pot meals for the next couple of days - which won't be bad. When we got home we all enjoyed pizza for dinner and Ethan at really well for the first time in a few days -- eating all of his carrots, peas, and pears. It was a good day!
Prayer Requests
  • Pray that Ethan will finally cut his top two teeth and feel better. 
  • Please pray for me, all mom's of extra special little ones, and all mom's whose little one's have gone to heaven before them - Mother's Day is very difficult for many of us.
  • Pray for us as we continue to wait for test results. Pray that the Cystadane has been working and that we will see improvements in his labs.
  • Pray that Ethan will continue to grow and remain healthy and develop physically and mentally.
  • Pray that the doctors, researchers, therapists, and teachers will find new ways to help us help kids with PBD reach their fullest potential. Pray for miracles, pray for treatments and for a cure! 
  • Pray for the world to be more understanding of kids with special needs and parents of children with special needs.
  • Pray that more people will put their trust in Jesus!
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