Coming home was amazing. But I am going to be really honest, it's been difficult. It's overwhelming. I immediately had to do some major grocery shopping. I was trying to find healthier options for Wyatt and trying to keep his menu. THEN to come home to cook, measure, mix, divide up and freeze. It's a lot if you come home blending. I'm sure it's a lot no matter what.
|I feel ya buddy! lol.|
We also had a mess of a house from being gone for a month, needing to unpack, and construction mess. I'm still figuring it all out and getting it all cleaned up.
The vomit volume the first week was astronomical for Wyatt. I don't know what the deal has been. This weekend into this week it has gotten better and better but it's still happening.
|Wyatt loves his new school bus! He |
We had a GI appointment on the 1st, previously scheduled, and she changed a med to see if it helps with the vomiting. She said it's her last med to give him and referred us to general surgery (Dr. Schindle, who did his CDH repair and g-button placement) to take a closer look at his insides. His upper GI showed his intestines not where they would be on a normal kiddo but not out of the norm for a CDH kiddo. We'll see him next week. He's making a special trip to the Plano campus just to see Wyatt. I feel special. :-)
I made a binder to keep track of Wyatt's blend recipes, volume intake and hopefully the calories he's taking in, once I actually get a handle on the calories. I've never felt so out of order in this entire journey. I've always known exactly how many calories he's taken in each day. I just don't have it down with this menu. I'm getting there though. And PTL, Wyatt has not lost any weight. He hasn't gained but he hasn't lost. I'll take that considering the mess I've been. lol.
A couple people have asked me how it's gone and I've had to say, I've cried more since we've come home than I have in the past 2 or 3 years combined. It's been crazy. God has been so good though. He has shown me He is here and I am His, Wyatt is His. He is in control. Wyatt will be an eater.
|Playing while waiting at Scottish Rite.|
God is also in control of what I'm about to tell you next...
*takes deep breath*
Wyatt was given a new diagnosis today, Infantile Scoliosis. I think I knew that they were going to be concerned about Wyatt's back today. I don't think I knew an official diagnosis or what they'd want to do about to correct the problem.
|Left= today and Right= 14 months ago.|
We look at Wyatt every day so I didn't notice how much worse his spine had gotten. And who knows, maybe it just looks worse on the X-ray. And I think I hoped that they'd just look at it and be like, "Nothing to worry about, see you in a year..."
No such luck... not that I believe in luck. We didn't get to see the actual doctor. We saw the nurse practitioner and she is going to go over the results and her recommendation with the doctor as well as having conversations with Wyatt's GI, general surgeon (the one that preformed his CDH repair and g-button placement) and pulmonology doctors. They also are taking in his speech and occupational therapy into consideration. With all that said, this is the current recommendation to correct Wyatt's scoliosis:
|More playing while waiting.|
To place Wyatt in a chest cast. He would get a new cast for sizing and correction every 2-3 months for 12-18 months.
Just when I thought we were on our way to "NORMAL".
I want so badly to be angry with God. Why this? Why now? When does Wyatt/do we get a break? I'm not angry with God. I know better. I know He is good and He is perfect and He has a plan and this is all under control. He has and will continue to equip us to handle this and take the absolute best care of our sweet boy. He's got this great and amazing story for our son. You know, the ones we hear from older kids and adults and we go,"Wow! You're one amazing and miraculous person." I know deep down that that is going to be Wyatt. He is so strong and so take it as it comes. I know I learn each and every day from him.
The NP also mentioned a brace instead of a cast. She said it doesn't work as quickly as the cast does. I've already started to write down a list of questions for when they call or we meet with them again. One being, what exactly is the difference of time here? Does it ever correct faster than expected? Ect...
I just want so badly for my boy to get to be a boy, ya know. He will get to be. A carefree, no worries little boy. It's going to happen.
I'm praying for miraculous spinal movement/healing. I'm praying for increased volume in his eating without vomiting it all up. I'm praying for joy through all of these "crosses we bear". And most of all, I pray for fun for Wyatt and a love for life that is explainable. That he thrive in all that he does.
God is good, Y'all.
He's got this.
He's got us.
He's got Wyatt.
He is not surprised.
WE ARE HIS.
Wyatt turns TWO on Saturday. Can you believe it?!? We're having his party Saturday morning. I'm having fun planning his party and getting everything ready. I am so thankful for the fun distraction! Be on the lookout for a blog with lots and lots of pictures! :-)
Here is a bit of our first week at home through pictures.
|On the way to watch the neighborhood 4th of July Parade.|
|On the way to watch fireworks in our neighborhood. Wyatt and I were both on our THIRD outfits of the day.|
|Wyatt's first fireworks show! He just laid on my lap and watched like a champ!|
|Best show I have ever seen and it was in our neighborhood! |
Love where we live!!
|About 3 minutes after they were over, he fell asleep.|