Skip to main content

Monthly visit with the dietitian...

Ethan has been growing!

Today he weighed in at 21 pounds and 3 ounces (50th percentile) and measured 30 and 1/4 inches long (almost 75th percentile).

We are so proud of our little man. We've come a long way from the early days of his "failure to thrive" diagnosis and visiting Dr. Smith's office every day to get weighed in just to make sure he was gaining weight and staying hydrated.... wow, what an answer to prayers.

Prayer Requests
  • Please continue to keep Ethan in your prayers. PBDs are unpredictable and although he is doing really great with his weight right now, depending on Ethan's ability to transition to more solid foods, etc. there may be a time that he struggles to maintain proper nutrition and growth (most kids with PBD are small and struggle with eating/proper nutrition and many are tube fed, to insure adequate calories/hydration).
  • Please pray that Ethan would continue to transition to more solid foods and that he would learn to drink out of a sippy cup. He doesn't want anything to do with it, and we've tried a lot of different styles, even one with a straw. He still won't really hold his bottle and drink from it, but we won't be taking his bottle away until he really masters a cup - which could be a long time from now.
  • Pray that he will easily transition from the infant formula to the toddler formula and that it won't cause any additional tummy trouble (he still has difficulty going #2 a lot of the times even with the prescription medicine he takes to help him go).
  • Pray for all families impacted by PBDs, and especially remember those whose little ones are in Heaven.
  • Pray for treatments and a cure. Pray that the Lord would enable the doctors and researchers to make breakthroughs that would increase the quality of life for children with PBD.

Comments

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...

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. 

Big Day - Field Trip to Bass Pro & Easter Seals Family Night at the Playhouse Children's Museum!

Ethan was so tired tonight. He had a busy day at school, which also included a field trip to Bass Pro to meet Santa and to go bowling, and then this evening we had our first visit to the Playhouse Children's Museum. More importantly though, here's a quick medical update: We are thankful to report that for the last two days no one has seen any seizures, so we are hoping and praying that this most recent increase in his medications might be making a difference. Our current neurologist (the one who is 2 hours away) called in a stronger dose for the diazepam. Ethan had been prescribed a 2.5 mg dose by the neurologist who saw him when he was hospitalized last month, but since it has not stopped the seizures the last 2 times it was administered, our neurologist calculated that a 7.5 mg dose is more appropriate for his weight.  So our hope is that the new dose will stop the cluster seizures, if they occur again. Obviously, the goal is to not have a need to use the...