Jonah ate only two ounces of Pedialyte today but ate 22 ounces of formula! HOORAY!
Today has been a much better day on all fronts: he ate more, had more wet diapers, coughed less, my allergies were much better (Zyrtec is better than Claritin), and we got to go to the park.
I'm feeling refreshed and rejuvenated.
But I'm still feeling like we should probably pursue a g-tube. We have our consult appointment with the pediatric surgeon on Monday.
Thank you so much for your prayers. My prayer now is that we can build up Jonah's nutrition and hydration so he can go into the g-tube surgery (if that's the decision we make) strong and healthy.
I love you guys. Really, I do. Thank you so much for loving us and caring so much.
35 comments:
It is a privilege you give me to pray for your Jonah! Thank you for allowing me to read this blog and love your family. I am praying the Lord will guide you as you have decisions to make.
I will continue to pray for all of you. Wonderful to hear Jonah ate more today.
I am so glad y'all are feeling better & he is eating more! Continuing to pray. Good luck on Monday!
Yay!! I will be praying.
Glad you all are improving...loved your singing too. I won't even put a picture of myself on my blog! Way to go! You are on my blog friend prayer list!
Like Shari above I feel like it is an absolute priveledge to pray for your family. You guys are amazing and inspiring and I only want good things for you guys! Thank the Lord he drank today! What a relief that must be for you!
Whatever choice you make, you have so many people that will be right here, supporting you every step of the way. Isnt modern technology amazing?
Sleep well!
Go Jonah, Go
Go Jonah, Go
Chug, Slurp, Slurp
Chug, Slurp, Slurp
Go Jonah, Go
Okay, Okay so a I stink a cheer leading... I try!!
I'll stick to praying and sending cyber hugs...
Barbara Lyman :-)
Marysville, WA
YAY! Praise God and may he continue to bless baby Jonah!!!
Oh sweat tea goodness! Go Jonah!!
Soooo glad to hear that... Why we couldn't lve closer to each other I don't understand. Keep me updated, and call me when you need to! Love you lots! Keep up the good (great) work, Momma!!!
PS. I had black hole sun stuck in my head alllll day. That was great!!
Love you guys!
Yay! I'm so glad to hear he's getting better. I'm keeping you all in my prayers and we love you all too!
~Amy
We are thankful that you share precious Jonah with us!! Praying for him is an honor!!
Wooohooo Jonah!!! What an answer to prayer!!
I love your family too! I am so glad your blog is public and that I found you. I will be praying for you guys.....still and always.
Much love
PS...just saw the Easter pics....what a basket! WOW! I loved the pictures. He is such a happy baby!
Hi Patrice!
Starting following your blog shortly after Jonah had been born. I have admired strength and faith as you cope you parenting challenges.
My girls (8&10) have asked questions about Jonah's pictures and it's been great to be able to share with them what's going on with him and the challenges he faces.
Now I apologize if you've answered this question before. I know that Jonah needs extra fluids and nutrition to physically cope/heal with the blisters. I would think that those needs would also make him more hungry/thirsty and they say that kids will eat when they're hungry. So I guess my question is, is there something about EB that makes the feeding process/swallowing difficult for him or are his nutritional/fluid needs so great that you need to keep him on the overfull side so never really feels hungry? I apologize for my ignorance but I know that this is such a huge part of your lives and I think it would help me understand and pray better.
Thanks and blessings,
Melanie Pierce
You are an amazing woman, I am awed by your strength and love for Jonah. He is one lucky boy!
Yah for Jonah. I said a little prayer for him yesterday! Zyrtec is the only thing that works for me too.
YEAH!!! Thank God Jonah is doing so much better. Keeping Jonah in my prayers. Hope Monday gives you the answers you need. Love you guys. Give Jonah a kiss for me. Love Leah's Nana
That is excellent news! Yay Jonah!! And even though we'll likely never meet or even speak to each other, I cant help but love sweet Jonah and your family. You seem like such a cool chick who has an amazing capacity for love and kindness. Jonah sure is lucky to have you for a mom!!! :) Lots of prayers for a guided decision from God on Monday. Have a great weekend! I pray he only continues to improve.
p.s Also, thank YOU for the priviledge of sharing your journey with us and allowing us to pray for your sweet boy. It really is an honor.
Go Jonah! Hope he continues to do better on the eating front. Happy weekend.
SO glad to hear that Jonah is doing better and that you are feeling better! Good luck with your consult on Monday!
Yeah Jonah!!! Keep up the good work little buddy! I'm praying for you and mommy & daddy!
Praying for Jonah. What a tough little guy!
Yay for all the formula!!! Praying for wisdom and peace for you guys.
The honor is ours to know you and Jonut, Patrice....and Matt too of course. We will be praying.
God bless you.
go Jonah Go Jonah GO GO GO Jonah!!
I am breathing a sigh of relief!! Prayers Answered!!
Tiffany
www.takeahillpill.blogspot.com
WONDERful news! I'm so glad to hear your family is feeling better . Eat Jonut eat :)
As always, keeping your family in our prayers. We all love Jonah and pray for him daily!
I will be praying that the g-tube answer is a clear one. So glad you are all feeling better.
Thinking about you and praying you find peace in whatever decision you make about the g-tube!!
All my love!!
Thankful for little miracles and I know you get them everyday! Hugs!
SO glad everyone is feeling better! Especially glad to hear that Jonah is eating better and that YOU feel rejuvenated. We are all praying that Jonah will continue getting better and maybe he won't need that G-Tube. It never hurts to ask, so that will definitely be my prayer.
Janet
Glad to hear Jonah is eating and feeling better! And you too!!
Praise God!! I'm SO glad he's better (and that Zyrtec is working for you!) I'm also glad that you're having more clarity on the g-tube, and will keep praying that you and Matt will know exactly what to do for sweet Jonah and when.
Have a wonderful weekend - will keep praying!
Love,
Laura
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