Valen’s Journey with Severe Combined Immunodeficiency -SCID

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Valen’s Journey with Severe Combined Immunodeficiency -SCID Valen has been diagnosed with Severe Combined Immunodeficiency.

They said it may take 4-6 weeks for the hole where his tube had been for the past almost 2 years to close. But 2 days la...
03/06/2025

They said it may take 4-6 weeks for the hole where his tube had been for the past almost 2 years to close. But 2 days later it was already like this. It honestly worried me a bit, but they aren’t concerned about it.. with that being said, this may sound dumb to some ppl but last night was Valens first time ever to run around the house in just his diaper. 😆 He has always been fully clothed plus a belly band to protect his tube from getting caught on things. It’s the little things like this that are such big milestones and you don’t even realize it until it happens!! This whole journey with Valen is crazy in the greatest way.. 🥹😍

Valens last picture with his GJ tube and his first without !!! Today, he finally got it removed!! ☺️😊😎
29/05/2025

Valens last picture with his GJ tube and his first without !!! Today, he finally got it removed!! ☺️😊😎

I’m slacking 🤦‍♀️ but Valen had an appointment last week to see how he’s been doing since stopping his tube feeds. All h...
19/04/2025

I’m slacking 🤦‍♀️ but Valen had an appointment last week to see how he’s been doing since stopping his tube feeds. All his labs came back alright and he has not lost any weight. So we are planning on removing his GJ tube either the end of may or beginning of June.!

Today is Valens second “Life day” . Meaning on this day two years ago, Valen received his transplant. He has come so far...
21/03/2025

Today is Valens second “Life day” . Meaning on this day two years ago, Valen received his transplant. He has come so far since then and by looking at him now, you’d never know the struggles he faced and the battles he fought back then… he is so tough and we are so grateful for the progress he has made.!!

2 years ago today this was the post I made:

I always look for the meaning in stuff and sometimes I look a little deep to find it .. well, today is the first day of spring.. meaning a time for new beginnings... Also, we've been in the hospital 118 days ..

"What can we learn from Psalm 118?
I shall not die, but live : the psalmist was confident that God would keep him from death in the present crisis. As Jesus sang this song at the last supper with his disciples, he could proclaim this confidently - that death would keep no hold upon him, but he would live and declare the works of the Lord"

He’s so handsome.!! Little country boy attitude 😆
28/02/2025

He’s so handsome.!! Little country boy attitude 😆

Valen had his appointments yesterday and today. He had his usual 3 month GJ tube replacement as well as his hem/onc clin...
07/02/2025

Valen had his appointments yesterday and today. He had his usual 3 month GJ tube replacement as well as his hem/onc clinic visit. His IGG level was a bit low at this visit. He had IVIG 3 months ago and given his other levels are good, they want to wait and see how his IGG is at his next visit before giving another infusion.. They are wanting us to stop his tube feeds (he has been on a total of 350 mls over 6.5 hours at night) to see how he does. If he does well until our next visit and is able to eat enough to sustain himself and not lose a significant amount of weight then we will look at possibly removing the tube all together. His next visit is April 10th 😊😊

Within 2 hours of having fluids started, Valen was sitting up in bed and yelling for cheese balls. I got him his favorit...
27/12/2024

Within 2 hours of having fluids started, Valen was sitting up in bed and yelling for cheese balls. I got him his favorite , French fries and he snacked on them all night.! He was much better this morning although he tested positive for Sapovirus. We got sent home with as needed zofran.. so far, he’s doing pretty good.!!

27/12/2024

Honey-Glazed Roasted Brussels Sprouts with Bacon
A sweet and savory side dish that's perfect for any occasion.
Ingredients:
For the Brussels Sprouts:
1 pound Brussels sprouts, trimmed and halved
2 tablespoons olive oil
1 tablespoon honey
1/2 teaspoon salt
1/4 teaspoon black pepper
For the Bacon:
6 slices thick-cut bacon, cut into 1-inch pieces
For the Glaze:
1/4 cup maple syrup
1 tablespoon Dijon mustard
1 tablespoon balsamic vinegar
1/4 teaspoon red pepper flakes (optional)
Instructions:
Preheat Oven: Preheat oven to 425°F (220°C).
Prepare Brussels Sprouts: Toss Brussels sprouts with olive oil, honey, salt, and pepper. Spread on a baking sheet.
Cook Bacon: Place bacon on a separate baking sheet.
Roast: Roast Brussels sprouts and bacon in preheated oven for 20-25 minutes, or until Brussels sprouts are tender and bacon is crispy.1
1.
Easy Roasted Brussels Sprouts with Bacon Recipe - Taste of Home

Make the Glaze: In a small bowl, whisk together maple syrup, Dijon mustard, balsamic vinegar, and red pepper flakes.
Combine and Serve: Toss roasted Brussels sprouts and bacon with the glaze. Serve immediately.
Tips:
For a spicier glaze, add more red pepper flakes.
You can substitute bacon with pancetta or prosciutto.
Serve with your favorite main dish, such as roasted chicken or steak.
Enjoy this delicious and satisfying side dish!

We have been admitted (to our local hospital this time). Valen started not feeling good yesterday and got sick a few tim...
27/12/2024

We have been admitted (to our local hospital this time). Valen started not feeling good yesterday and got sick a few times throughout the night. Today he was nauseated and not wanting to play. He just wanted to lay around. I brought him to the ER to get labs drawn and his blood sugar and sodium were both a bit low. Hopefully we’re only here overnight 🤞🏻 and he gets feeling better soon..

We have had appointments every day since Wednesday. Valen had an endocrine follow up and so far, everything is ok there....
06/12/2024

We have had appointments every day since Wednesday. Valen had an endocrine follow up and so far, everything is ok there. We don’t need to follow up for another year. He had some testing done with audiology. His left ear wasn’t as good as the right. But given he’s been congested and such, she said she thinks that’s why he didn’t respond as well to sounds on his left side. We follow up with them again in a few Months just to be sure. He got his GJ tube replaced yesterday & He also had his regular Hem/onc follow up visit yesterday and his IGG levels were low so today we’re here getting his infusion… aside from all that, he’s doing pretty well.. his next follow up isn’t scheduled until February 😊😊

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