Skip to main content

Returning to Normal??

We were so glad to get home from the hospital yesterday afternoon. Unfortunately, instead of Ethan getting better at home he chose to eat and drink even less last night, which had us really worried. Fortunately, he must have just needed a good night of rest - and he slept in his own bed for almost the whole night! When he woke up this morning around 7:30am I was hoping we'd see a return of our little guy and for the most part today was much better! Jeff stayed home with us today, as he is now sick - which probably only means I'll be next! URG - I hate when families share, germs that is..

Overall, Ethan is acting more like his usual self - definitely not back to 100% but better than he has been. We are continuing to struggle with getting him to drink. He is almost always refusing the bottle and since we have tried every sippy cup and straw cup that I can find - I have a whole huge basket on the top of the fridge as proof - and our Speech Language Pathologist, who we love, hasn't been able to get him to accept one yet either... getting his formula is a chore. Especially since Ethan doesn't have a "normal" 17 month old diet we rely on his formula to help bridge the gap (it is sorta like a soy-based Pedisure) to make sure he is getting proper, balanced nutrition.

I had a few deja vu moments today as I started to write down and journal all of Ethan's intake and output - we did this almost everyday for the first year of his life! When were getting ready to leave the hospital yesterday we asked the pediatrician on the floor how much fluid Ethan should be getting a day - he said that the minimum Ethan should be getting is 30 oz. a day to keep him properly hydrated and that 40 oz. a day would be even better. Remember this isn't all fluid intake, because we all get fluid from the foods we eat. So since right now Ethan isn't taking hardly any of his formula and won't take any other fluids, he really needs to eat a LOT of applesauce or other high fluid foods.

So, what did we get down our little man today?
  • 5 oz. of formula by bottle.
  • 16 oz. of applesauce.
  • 2 oz. of soy-based yogurt
  • 4 oz. of baby food
So, we aren't at 30 oz. of fluid, but at least we are getting something in him. In order to get all of that in we are back on every 2 hours schedule throughout the day, but that is fine. I am praying that if he feels even better tomorrow that his appetite and thirst will start returning. Poor kiddo still has an awful cough.

Prayer Requests
  • Please continue to pray for Ethan's recovery and that following this we'll be illness free for the rest of the winter.
  • Please also pray for all little ones everyone that can't fight off these typical childhood illness as easily as others.
  • Please pray for a little baby named Bella. I went to high school with Bella's dad. Bella is in the hospital in St. Louis and is just a couple of weeks old. She is fighting hard and the doctors aren't sure why Bella is sick. Jeff and I know how Bella's mom and dad feel - as we were in their shoes after Ethan was born. Please pray for Bella, her family and for the doctors who are treating her.
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

Asking for prayer

Asking for prayer from all my prayer warriors out there. Yesterday we went up to Carle for blood work. Ethan has been on the higher dose of Cystadane (betaine) for a month now so we wanted to check to see if it has made any positive impact to his VLCFA levels and there were a few other things that needed to be checked including his Vitamin D level and his ACTH levels (we check ACTH every 5 to 6 months because most children with PBD develop adrenal problems at some point in time). This morning while Ethan was at school I got a call from our geneticist and his nurse. I left Ethan at school for the first time today and he did great, but that is for another post. They called to let me know that two of the labs had come back so far and the rest were still pending and would take a while, some like the VLCFA will take several weeks. Well, the test showed that Ethan has low levels of Vitamin D. He already takes a multivitamin and gets additional Vitamin D from his Bright Beginnings Pediatr...
1 comment
Read more