Asher's Turnaround

06/22/2026

Asher had a fun day with his dad and siblings for Father’s Day. He went to church at his dad’s church and enjoyed the special needs ministry classes they had. Then they went to Dave and Busters for lunch and the arcade. Last but certainly not least was Asher’s favorite part of the day - the Metro bus ride home, where he bounced himself up and down like it was an amusement ride. He sure knows how to put the fun in any adventure.

06/17/2026

Another new thing for Asher - a communication device!

Asher has great imitation skills and is picking up sign language quite well. The nurses and I are constantly looking up more signs to teach him. He is teaching us. lol. So why a communication device? Asher’s fine motor abilities are delayed. His signs are “approximations” and many of the signs he performs look the same like star and socks for example. Context becomes important. Secondly, the public as a whole does not understand sign language. I have noticed that Asher attempts to communicate less and does not sign to people he knows doesn’t understand him. Third, even though the nurses and us at home use a lot of language and will name the sign when he says it, this device has speech output. So, every time he pushes a button, the device speaks the word.

The hope is that this device will encourage him to speak. But, in the meantime, it will allow him to express his wants and needs more efficiently to the world.

06/13/2026

Another first for Asher - VBS! He enjoyed it so much. His nurses went with him. Georgia and I volunteered, and the twins enjoyed it, too. Asher receives little interactions with others his age, so this was a great opportunity for him. We love our church. They love us well, and they never mind doing extra to accommodate Asher to be included in all the things. ♥️

06/07/2026

Heart Update

Well, I planned on making a lot of fun Asher adventure posts this summer (still will), but there’s been sort of a change in timeline of Asher’s heart journey. We thought we had more time before the last open heart surgery (Fontan/Bivent). But, when we saw our cardiologist last week, he said Asher has diminished pulmonary blood flow. In plain terms, a lot less blood is going to Asher’s lungs and a lot more blood is going to his body. Mind you this blood going to his body is mixed blood - meaning it all hasn’t gone to the lungs and isn’t oxygen rich. Our cardiologist said, go take your trip to MS, and then when you come back, I’ll see you and we will put in a request for a heart cath. He’s estimating 3-6 months before we need the Fontan. This news is hard for a lot of reasons including the cardiologist saying last week that this surgery would be tricky. When I asked because it’s a Fontan or because it’s Asher. He said because it’s Asher. Asher looks and acts so stable. It’s hard to say yes to a “tricky” surgery when it seems healthy. Also, our surgeon that we moved to Texas for no longer works at this hospital. Granted Asher is well known by many departments at the hospital, it’s just not the plan we had in mind when we decided to move here. I ask you to pray for us. For discernment on next steps. For peace in the waiting. For peace in the decisions. For Asher’s health. For the upcoming procedures. For logistics. Thanks for all your prayers and thoughts as we continue our journey.

05/30/2026

It’s been 2 years since a normal heart cath turned Asher into a neuro patient. This is the last picture of Asher before his series of craniotomies. That summer consisted of 2 strokes, seizures, hydrocephalus, a VP shunt, and a pacemaker. He lost every developmental skill he had. His incision leaked spinal fluid and he was put on the big gun antibiotics. When you look at him now, you would never know all this happened. God saved him from the fire again and again. Asher is living a life of joy, and I’m living a life of gratitude. If you are sad, come spend 5 minutes with Asher. He will cheer you up. He has that gift. Praises to the Lord for Asher’s life and an amazing 2 years.

Update: 4:50 pm Asher is in the operating room and they are doing the emergency craniotomy(cutting the skull open to access the vessel to remove the coil). 🙏

Pray pray pray. They are taking Asher down to the cath lab then the OR and Brittany GreerHerrington and I will be in surgery waiting. They are doing an Angiogram and pending those results they most likely are gonna remove a portion of Asher’s skull, cut open the vessel, remove the coil, and stitch the vessel back, and put back the portion of the skull they have to cut to access it. Neurology is new to us and we know nothing in this regard. We pray 🙏 that God is with his team. Love you guys. ❤️

05/29/2026

Asher got a good report at the Down Syndrome Clinic this week. He’s on track on all the extra testing they do for children with Down Syndrome. He’s making developmental progress. Got some pointers for some of his undesirable behaviors. 🤪 And, he also played with a baby doll for the first time. He loved it! He got his own later that night. Peep the video below of him moving his new baby.

05/27/2026

Asher has just been cruising along since his hospital stay. So many small changes yet he’s stable. We have a lot of adventures planned this summer. I think I’m going to do multiple short updates and glimpses into his life this summer rather than far apart long updates. For my brain and your reading. lol.

First up on the fun - another first for Asher. Toddler story time at the library. Blessed to spend my first day off for the summer doing this with Asher. He enjoyed it so! Engaged with reading, singing and definitely socialized in play with peers.

Update: Asher got another small sickness last week that he’s almost fully recovered from. Blessed to be able to manage minor things from home!

Look at my new super hero shirt Mr. Ernesto (nurse) got me!

05/06/2026

Since coming home from the hospital a little over a week ago, Asher has been happy, having fun, and soaring with development. The wilder and crazier something is, the more he likes it.

He is cruising furniture, standing for brief moments unsupported, and walking with his hands held. Peep the video. Last night when I was holding him, my phone buzzed and I picked it up. He clearly said, “call Papaw.” I repeatedly loudly and in question because I couldn’t believe what I heard - “call Papaw?!” He grinned and signed “phone” and said “Papaw.” So, of course we called Papaw.

It’s such a joy to see Asher do all these “normal” things and continue progressing with development. ❤️‍🩹

04/24/2026

Final Update! Asher is home! The team is attributing the sickness to all his issues. We’ve changed some meds as well. We’ve already been in touch with our cardiologist on following up with him. Thanks for all the prayers. ❤️‍🩹

Update 4/25/26 at 8:45pm: Asher hasn’t had any more fever or diarrhea or vomiting. The team started formula feeds today. His regular formula. The team at the hospital thinks everything was related to the sickness. We shall see. He’s been mostly happy today. Not 100%. You can tell he’s sick but he’s still acting better than if I were sick like him. The plan is to check his blood early in the AM tomorrow. When he gets back to kidney number baseline, he can go home.

Update 4/25/26 at 12:03am: We are on the heart floor. Asher has rhinovirus, enterovirus, and adenovirus. This explains all the sickness symptoms and possibly some of the BUN elevation. However, our cardiologist thinks the recent feeding change is what is elevating the BUN. For the rest of the night, we do pedialight. Tomorrow, we tackle the formula.

Update: waiting for a million test results to come back and being admitted to the heart floor

Asher could use your prayers. We are at the ER trying to determine why his BUN level is so high. Also runny nose, cough, good bit of fever, diarrhea, and vomiting. Update as I can.

03/28/2026

When you get a front row seat to live music at the park, you are living your best life! Music is the key to Asher’s heart. Preschool songs from Ms. Rachel, worship songs in church, instrumentals that lull him to sleep, music to line dance to at Mrs. I Lun’s wedding, and now older music. I missed getting a picture/video when Penelope first sat him there of the biggest smile on his face and crazy arm dancing.

On to business…during Asher’s cardiology appointment this past week, his cardiologist text me at work and said they couldn’t get the echo because Asher would not cooperate and is a really strong boy. Later, I found out that minute he was hitting the tech, spitting, pulling hair, and destroying anything he could get his hands on - including our sweet nurse, Melanie. The cardiologist came into the echo room an guided the tech to show him key items. Then, he said cut it off. Whatever he saw was good enough to get us a 10 week jump to our next appt - the biggest ever! The cardiologist said Asher looks really good!

A lot of changes are happening for Asher. We are titrating down to lose another medicine. Asher’s formula, feeding rate, and feeding dosage are about to change. It’s all exciting things. Things that can only happen because he is stable and doing well. I’m so grateful.

In addition - the owner of the speech therapy group came out with our therapist last week…to explore AAC devices. His sign language continues to grow. When I was at home for spring break with him and a part of all this therapies, I learned he knew more signs that I knew he did. He’s pushing us. I’m all out of signs and need to learn more. Also - he’s starting to take steps with hip assistance. He can help pull his socks on, do a few puzzles, retrieve his sippy cup he’s thrown back to you (🤪)…Asher continues to thrive. It’s such a joy to be a part of it!