I am just feeling very discouraged right now. We went to Cincinnati Children's Hospital late this afternoon for an appointment with the surgeon who will repair Wesley's esophagus. (Side note: since we had the last appointment of the day, we were able to spend a lot more time with the doctor - almost 45 minutes) Anyway...the doctor wants to do a MRI in early April and possibly a scope to determine how much esophagus Wesley has from the top down. Wes has nothing from the stomach up, so it's not likely there will be much from the top down. The doctor told us that he isn't sure that Wesley will be a good candidate for the stomach pull-up surgery. The other option (which may have more complications) is to use a section of Wesley's colon as his esophagus
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The doctor also wants us to continue to work with Wesley on eating. He thinks that after surgery the transition to eating only by mouth will be much faster if he's already used to eating. I was just hoping that Wesley would love to eat so much that he just picked it up...I know how important this is, but it is just such a hassle. To do it, I have to take off most of his clothes and get out at least five towels and washcloths. After he eats about two ounces (which takes at least 20 minutes, usually more like 30), he HAS to get in the bath (which takes at least another 20 minutes since he now loves the bathtub). I do know that the more Wesley can eat now, the better off he'll be after surgery.
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The delay of the surgery is hitting me a lot harder than I thought it would. It's just that Damon and I absolutely love to eat, and we want Wes to learn to like it as well. It's just so frustrating to go out to eat (which we do more than we probably should), and tell the wait staff "no thanks, he's already eaten" or that he'll have some of ours (and he doesn't). I know most of them think we are crazy. They probably think "hey lady, your kid wouldn't be so small if you let him eat at dinner."
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Please just pray for us (especially me) because I am taking this hard. I know that everything will happen in God's perfect timing, but to be honest, I like when my timing and God's are the same. Thank you for your support and prayers!!!!
Staci
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10 comments:
I am so sorry. That is so incredibly frustrating. I know it sounds a little trite, but I really DO know how you're feeling.
When we brought Maddie home last year I was convinced all she needed to do was to go through a surgery to recreate her ears...presto, chango, her life would be forever changed and she would be completely normal.
After a CAT scan and a trip to the ENT I found out differently. They can recreate her ears...but can't open up the canals, so she'll be dependent on a hearing aid for the rest of her life.
It was so disappointing. Still is...but I'm blessed to have this little girl in my life. I wouldn't change anything.
I know you wouldn't either.
Hang in there. (Again, trite, I know.) We're rooting for Wesley...and praying for you. The day will come, way too soon, that Wesley will be eating you out of house and home! :)
Praying for you and Wesley here. I swear the hardest part of being a mom is being helpless to fix something.
sorry to hear your disappointing news. I agree with Mandy, it is hard not being able to help your child when they need it! Our prayers will be with you and we could still pray tha the stomache surgery is a possability, right? Blessings my friend.
Hey Staci,
One of the toughest things to cope with as a parent is not being able to "fix it" and make it better for our kids. I can't say I know what you are going through, but I have 3 boys and each of them have at some point have had difficulty in their lives that as a parent you just want to fix but can't.
Take the time to permit the mess...one day there won't be a mess anymore.
Praying for you all!
Lisa
This just stinks Staci. You know that Kendall and I love to eat too, so I can imagine the frustration. Plus, it puts a lot of extra work on you for longer. Hang in there. If there's anything we can do, just let us know. You'll be in our prayers.
I can imagine it is difficult for you guys. I really hope all goes well and sooner than later. I find you incredibly strong & admire you for what you have done for Wesley, he's lucky to have you two!
How frustrating. I hope you get everything figured out for Wesley. :o)
Keep the faith. You will be in my prayers.
Praying that you can find peace through this rough time and that the medical professionals can figure out the right solution for Wesley.
O Staci! It is heartbreaking when there are so many delays to the healing we know that is in store for our little ones! Grieving with you, and praying for strength, peace and NO MORE DELAYS! Blessings!
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