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Asher's Turnaround, Houston, TX (2025)

11/03/2025

Nursing Update I said I would make: 🙂

This first week with the new nursing company has been so good I could pinch myself just to make sure it’s real. Either this company is REALLY good or the former company was REALLY bad or maybe a mixture of the two.

Highlights from the week:
- came home on day 1 to a bathed, lotioned, and hair nice and combed big boy Asher ready for the night and it was only 4:30. The milk for the night was already made.
- no one needed to be shown how to run the feeding pump
- no one messed up any meds
- one of our night nurses spent her first night with us walking around the neighborhood trick or treating for 2 hours
- “here, you hold Asher and I’ll help Grayson with his math homework” 😳❤️‍🩹
- “what can I do differently or better for you?” At the end of EVERY day shift
- toys literally all over the living area - like I can’t even walk - which means Asher wasn’t left in the crib all day
- therapists bragging on the day nurse
- rolled my trash can in from the road
- took Asher outside multiple days
- took Asher on a stroller ride
- made a list of meds asher was low on
- no turning Asher’s monitor off at night because it beeps too much!!!! 🙄❤️‍🩹

Some of these things may seem like part of the job. Most of them are. But when you’ve gone for so long without this being the norm…

Of course Ms. I Lun did all these things for us, and no one can ever compare to her. They could send the best nurse on the planet, and it still wouldn’t be Ms. I Lun because she’s a good nurse AND she’s family. She’s my Houston sister. We are hoping she can join us at our new company soon.

There are still little things here and there - part of being new. And, it’s only week 1. I don’t want to get ahead of the cart here, but I can breathe a little easier knowing that I have a new team that is devoted to Asher.

Thank you so much for all the prayers! They made all the difference!

10/29/2025

Milestone! Drinking out of a regular sippy cup and beginning to hold it himself. Thanks so much to our therapists for all that they do! Of course throwing it is just as much fun.

Nursing is going grand over here for all of you wanting to know. I’ll post at the end of the week on our first week with the new company. ❤️‍🩹

10/26/2025

Update on Asher’s nursing:

We start with a new nursing company tomorrow. This decision wasn’t reached lightly. The director at the new company used the phrase - fear of the unknown. We have been with the same company since Asher first started receiving nursing services about 2 years ago. Lots of things that weren’t awesome have happened. But, it’s hard to know what jumping ship would mean - better? worse? The past 8 weeks have been difficult. We still had no permanent day nursing even though we’ve been told she was hired 4 weeks in. We haven’t been fully staffed at night in 8 weeks. I would get a text at 4:52pm right before the office closed telling me that the temporary nurse for the next day can’t come so they were sending a random person. Random people came late, asked to leave as soon as I walked in the door, and worst of all kept him in his crib/strapped in a chair all day.

It was hard for me to tell our long term night nurse bye, but as my aunt reminded me - this is about what is best for Asher. So, here we are starting a new chapter tomorrow. I’m hopeful. I didn’t hold anything back in the meetings with the new nurses. I shared with them my expectations and they still agreed to take Asher on. Great news is that they are willing to hire Ms. I Lun when she is able to return to us!

Super thankful to a fellow medical mama for recommending the new company. So far the communication and ongoings have been top notch. I feel like they are working for me/Asher instead of me working for them.

Thank you to all of you have prayed about the nursing with us! Keep praying for this first week. ❤️‍🩹

10/22/2025

Standing is hard work! ❤️‍🩹 Gotta love this boy. 😘

10/14/2025

Asher is home!

Asher had a quick stay at CMHH. We got to see a lot of our medical family. Always so good to say hello and check in with them.

The cath went well. Asher’s 2 stints were expanded and the area around both was ballooned. There is a good deal of scar tissue that his built around the stints. The vessels were not actually shrinking, but the scar tissue inside was making the blood flow less through the stenosised (made that up…haha) section. There were some collaterals and pop off vessels, but they weren’t pulling much on the heart function; therefore, no coils or plugs were used. His pressures were good. That’s something they always check because if it’s too high, then surgical repair/reversal could be required. It sounds like we bought ourselves 9 months before we need to go back in with another heart cath to address the stints and tissue. The tissue is tricky. More stinting could cause more tissue which can cause the need for more stinting. Asher also has generally small blood vessels - smaller than others with Down syndrome. The heart cath doctor said creativity will have to be used for caths in the future.

At the end of the day, Asher got the repairs they wanted him to get via the heart cath. For that, I am thankful. I appreciate all the prayers!

10/13/2025

It’s heart cath day!

Noon update: Asher is out of the procedure. Today’s mission was accomplished. Pressures are good. No coils or plugs were needed today. Jury is still out on next steps from here. It might just the jury in my brain is out. As I digest the after procedure consult and chat with more providers, I can provide a better update. Thanks for all the prayers.

Asher was all smiles in pre-op. He went back at 7:00. Prayers appreciated! ❤️‍🩹 o

10/08/2025

Asher trying cheese cake for the first time. He signed “more” quite a few times. He’s such a great little brother - always up for an outing and go with the flow. He likes to ride and doesn’t get upset with in and out of the car. I mean if you put him close to items, he can destroy an end cap in 2.5 seconds. So, there’s that. But, he loves to experience all of life…including cheesecake. ❤️‍🩹

10/03/2025

Nothing says I have the best brother in the world than him asking for a gift for himself that just so happens to be my size and just right for me. And, he gave me a turn first. He cleaned up all the balls after I went to bed. Asher is the brother Grayson never wanted but absolutely lives for today!

Asher brings out the best parts of each of us. Loving Asher is so easy and so pure. ❤️‍🩹

10/02/2025

It’s Down Syndrome Awareness month. I won’t be posting a ton of things, but I’m an open book and not offended by questions. Feel free to ask.

Asher has Down syndrome but isn’t Down syndrome yet is more than Down syndrome. Asher is a son, brother, toddler, crazy guy, and a child of God. Despite his challenges, he is full of life! He loves life and is an absolute joy.

09/25/2025

At Asher’s cardiology appointment last week, his cardiologist shared that Asher’s femoral pulses were weak and hard to feel. He also said the diffference in his blood pressures between his legs and arms was widening again. And, the echo showed that the aortic arch stint was failing. Though Asher outwardly seems stable and full of life, the carnality wanted to kick the results to the cath team to see their thoughts. He scheduled an appointment next month to see us back. So, I assumed we would hear the verdict then. However, today I got a call from the hospital cath scheduler who was ready to book the cath. So, it’s scheduled for October. Specific prayers for no sickness before then, a cath that will address what is needed, and anxiety as we try not to think back to the cath of 2024.

Nursing is a bit more stable. Our fill in nurse’s patient was discharged so we have another fill in nurse this week and next. Plus our faithful Tuesday nurse and a separate fill in Wednesday nurse. The good news is that the company has hired a nurse just for Asher! The plan is for her to come out with the fill in nurse some next week to learn the ropes and then start the week after that.

Peep Asher below for his first time in a bookstore. Books are his new favorite. He even chose book reading over the Itsy Bitsy song yesterday. Iykyk. At the bookstore, he was certainly loving life. He growled at me everytime I put books backs on the shelf. He now points at characters and items in books with his pointer finger and will move your pointer finger to point at items. He expects everytime your finger or his touches something in the book, that you will label it. He uses you like a human audio touch book. 🤣

Praises and prayers! ❤️‍🩹

Asher's Turnaround

11/03/2025

10/29/2025

10/26/2025

10/22/2025

10/14/2025

10/13/2025

10/08/2025

10/03/2025

10/02/2025

09/25/2025

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