Matthew's 8P Journey

Matthew's 8P Journey Living a happy life with 4 Rare Disorders

Matthew had a difficult time waking up this morning 😀 he got used to sleeping in in the morning, me too, Matthew, me too...
12/08/2025

Matthew had a difficult time waking up this morning 😀 he got used to sleeping in in the morning, me too, Matthew, me too 😂

He had a great time at school and I'm hopeful he will stay healthy. His sister woke up with a high fever today, AGAIN! She's been fever free for exactly 7 days. I think she just caught a new virus, I hope it's something new and not a complication. She does a lot better with sicknesses than Matthew, but I'm still worried for her and for him too.

We have an exciting week ahead of us and hopefully we stay healthy, and baby sister feels better soon 🙏🙏❤️

Shopping with mama at Matthew loved ordering me a pizza slice at the food court 😋 can't go to Costco without getting a...
12/03/2025

Shopping with mama at

Matthew loved ordering me a pizza slice at the food court 😋 can't go to Costco without getting a cheese pizza slice😂
Matthew lost a lot of weight while sick, and he is still recovering. He's staying home from school, eating and resting 😃 how I wish he could've enjoyed a slice of cheese pizza with me 🥺

Update on Matthew:He is feeling well, but has a bad cough. Tomorrow morning I'm going to call his pediatrician to get hi...
12/01/2025

Update on Matthew:

He is feeling well, but has a bad cough. Tomorrow morning I'm going to call his pediatrician to get him seen. Other than that he feels good. He has lots of bruises (wherebhe was poked) and as they are healing they get darker and darker. I hope soon they will be gone and no more remonder of that time.

No more fever for Daniela, but she still has a sore throat and a very hoarse voice, just like Matthew and me.

If you hear Parainfluenza, RUN!

Matthew stay healthy, please ❤️

Picture #1 or picture #2?

Happy and thankful everything is behind and now he feels better ❤️🙏Now guess what, besides me being sick, probably with ...
11/29/2025

Happy and thankful everything is behind and now he feels better ❤️🙏
Now guess what, besides me being sick, probably with the same virus, Daniela is also sick 🤦‍♀️

Thankfully she still has lots of energy and is eating drinking ok.

Parainfluenza is a very nasty virus, I don't recommend it 😂

Favorite picture?

Looks like we're going to spend Thanksgiving in the hospital. 😢 but I'm happy Matthew feels better, still not back to hi...
11/27/2025

Looks like we're going to spend Thanksgiving in the hospital. 😢 but I'm happy Matthew feels better, still not back to his baseline, not drinking and eating much. They offered to place an NG tube and provide feeds this way but because of the holidays it wouldn't get us home earlier than Saturday or Monday either way so I rather give him more time to recover than traumatize him even more. Yes, inserting an NG tube is traumatizing for Matthew. We're not in a rush, we want to make sure Matthew feels well and that he is as comfortable as possible. Thank you for your support during this time❤️ I'm thankful for such an amazing community ❤️

Happy Thanksgiving

11/25/2025

It didn't last long but I got to see him smile. He is still very weak and barely eats and drinks anything.

Labs showed some infection going on and they started him on the antibiotics while waiting on some labs that take longer.
And of course this morning diarrhea kicked in 🤦‍♀️
And due to the fact that Matthew doesnt accept a lot of food or drink orally we might not be able to give him probiotics for now....

He got poked 6 time yesterday, any procedure they have to do on him is so hard... I feel like I'm allowing them to do this to him, at the same time it is for his wellbeing, but where is the limit?

I hope he's going to eat/drink better today and I hope no more labs 🙏

3rd IV line lost.... I feel like a failure for not advocating better, for not doing better. A new IV is needed because ...
11/24/2025

3rd IV line lost.... I feel like a failure for not advocating better, for not doing better.

A new IV is needed because he's still not drinking, he still needs iv fluids. Matthew doesn't eat Popsicles, ice-cream, drink juices or anything of this sort.

Before judging, remember, that every child is unique, every situation is unique, and if something worked for you it doesn't mean it works for someone else.

Thank you

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Chicago, IL

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