Skip to main content

Ethan's "non" drinking habits!

Ethan hasn't taken his bottle since early on Thursday evening. Since he won't drink out of a cup, and with a straw cup that we squeeze the liquid into his mouth he gets very little volume, he has simply cut off his drinking. This has us very worried of course. We have been pushing tons of applesauce and have been mixing pedialyte with the applesauce to give it more fluid, etc.

Saturday morning we took Ethan to a local "Express/Urgent" Care clinic and saw a doctor. He ruled out strep, ear infection and flu. He told us to push fluids (HA HA HA, if it was that simple we wouldn't have been at the doctor, right?) and to watch for wet diapers, etc. He said that if Ethan didn't have at least 4 wet diapers in a day that it was time to head to the hospital for IV fluids. While I wasn't completely happy with the clinic visit experience, I am glad that we went.

We are pros at keeping a intake/output journal, although we haven't had to in a while, but here was Ethan's yesterday.

7:45am - wake up with wet diaper
8am - 5 and 1/2 oz. of applesauce
9am - wet diaper
10:30am - 5 oz. of applesauce; meds/vitamins; 10 ml of pedialyte via syringe
12:30pm - dirty diaper
12:45pm - 3 oz. of applesauce
1-4pm - nap
4:15pm - wet diaper
4:30pm - 6 oz. of applesauce mixed with 2 oz. of pedialyte (for a total of 8 oz.)
7:35pm - wet diaper
7:45pm - 6 oz. of applesauce/pedialyte mix
8:30pm - bed

Ethan slept almost 11 hours last night and woke up with a good wet diaper this morning. He is still refusing bottle, we tried "big boy cups" again, etc. to the same violent refusal. We got 4 oz. of applesauce/pedialyte in him this morning along with all of his meds/vitamins. We are going to pick up some baby cereal today at the store that I can mix his Bright Beginnings (soy-based toddler drink, similar to Pedisure) with, so that he can hopefully spoon in all those nutrients and calories.

Thank you for the encouragement and prayers. I'll keep everyone posted about how today goes.

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 mother

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. 

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 Perox