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Asher's Turnaround, Houston, TX (2025)

11/27/2025

Asher celebrated his Thanksgiving a day early. He spent the day with Ms. I Lun!

I’m grateful for a lot of people, but Ms. I Lun is irreplaceable in our lives. ❤️‍🩹

Happy Thanksgiving to all of you who continue to love and bless us. ❤️‍🩹

11/26/2025

Asher update:

As we celebrate Thanksgiving, there is so much to be thankful for on the Asher front!

This nursing company and these new nurses are amazing! We should have switched companies long ago. The pain and anxiety of Ms. I Lun not working for us anymore was indescribable at first - losing her as a constant in MY life and as an amazing nurse for Asher. But, the Lord knows better than we do. We never would have switched companies. And, great things more than I Lun knew have happened in her life. We see her a couple times per month still. She’s coming tomorrow! Thank you, Lord, for this company and these nurses and for knowing what is best for us even when we can’t see it.

Asher is continuing to make progress on the development front. He’s walking in his walker literally all over the living room, pulling to stand on occasion, and picking up signs/imitating so much! He even has been trying watered down milk. Tonight he randomly signed milk and then drank some! (Thank you, Tina Hamilton Palomino!) Thank you, Lord, for Asher’s development and for our therapists who constantly push him. And, thank you that these therapies can happen at home.

Asher had a check up with his cardiologist last week. It looks like he might be ready for the Fontan (hopefully last open heart surgery) sooner than we thought - within the next year. Thank you, Lord, for a good check up and thank you that Asher is still a good Fontan candidate.

We finally received the bipap last week. I’m going to make a post about just that after Thanksgiving. But for now, thank you Lord for Asher finally getting the bipap and that Asher may rest more soundly because of it.

Lord, thank you for the little things - Sunday afternoons outside playing with the families on our street, the ability to go to parties, park adventures, hair cuts, adjusting to church nursery, playing at home, FaceTime…Lord, thank you for allowing Asher to experience “normal” toddlerhood. ❤️‍🩹

11/16/2025

A couple of weeks ago, I realized Asher seemed to be drinking more. So I measured the amount throughout a Saturday, and he drank 60 mls. I knew I better tell the cardiology team since he is volume restricted. They said to subtract what he drinks from his daily water intake (225 mls). Yesterday, Asher drank 140 mls of water - over half of his daily water intake!!! This is him signing water. He requests it throughout the day (and expects it will appear 1 second later). The little things are just the best! ❤️‍🩹

11/09/2025

Asher had a fun-filled day of a STEM Celebration at the library with the twins, new books checked out, and a toddler signing class at GiGi’s Playhouse. Fun fact: GiGi’s is global program that offers free services to individuals with Down Syndrome. Asher showed off all his current signs and imitated a few new ones. Penelope was a big help being his side kick. Asher loves going places on the weekend! ❤️‍🩹

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. ❤️‍🩹

Asher's Turnaround

11/27/2025

11/26/2025

11/16/2025

11/09/2025

11/03/2025

10/29/2025

10/26/2025

10/22/2025

10/14/2025

10/13/2025

10/08/2025

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