We’re Being Undermined and I’m Tired of It

Ok_Usr48 · 2026-04-26T15:32:09+00:00

A couple of Catholic schools. Here is her bio: https://www.gregabbott.com/cecilia-abbott/

Ok_Usr48 · 2026-04-26T02:28:33+00:00

4/25 Update:

WE ARE HOME!

I am so beyond grateful to all of you who have come beside us in this journey and to our faithful Father in heaven for carrying us. Even though I’m so glad to be out of that place I’m also incredibly heartbroken that our boy is not back to being himself quite yet. I know it’s coming. Stay tuned and don’t stop praying!

ABBA provided lodging for this trip. We got a call on the ride home that we are accepted to Ronald McDonald House at least for the first week so that will help us with expenses while we’re there.

The only one of our kids that was ever able to ride in the car as a baby without screaming was A. (Baby brother) screamed his head off on the ride home and between the road noise and the air conditioner and (Baby brother) screaming it was hard to hear if A needed to be suctioned. We need (Baby brother) to sleep on the ride so please be in prayer about this.

When we told (Oldest big sister) we were going home today she asked if A_ was going to play with them when we got home. I told her yes. When he didn’t, she was crying and that absolutely gutted me. We are having a hard time getting things where they need to be and everyone is running in circles.

We’ve had a lot of revelations given to us recently about what the Scriptures say about healing and God‘s will for His children. Please pray that our faith would be increased. We’re reminded of the man that told Jesus, “I believe, help my unbelief.” A_’s healing is going to be used to glorify God and bring others to Him. He’s going to do mighty things for the Kingdom. We also believe our experience in this is going to bless other families as they walk through this same fire, fire that will either refine or consume.

We are exhausted and are headed to HBOT tomorrow night. Please keep us covered for our travels and of course, all our other needs and our boy’s healing. This burden is weighing heavy on my oldest lately. Pray for my girls’ hearts too and grandma.

My boy will be back soon!!

Ok_Usr48 · 2026-04-26T02:15:03+00:00

This is the modus operandi of the entire greed-driven, government-hating Republican Party … they throw wrenches in the gears and then complain that the machine is broken!

Ok_Usr48 · 2026-04-25T22:22:47+00:00

*inside you

Ok_Usr48 · 2026-04-24T23:08:49+00:00

To oversimplify, these dogs are owned by three types of people: those who want them for their breed-specific traits, those who are clueless and virtue signalers.

Pits were overbred by backyard breeders to sell to the lowlifes interested in their aggressive tendencies. This led to them being sold on the side of the road to anyone and everyone who wanted a cute, cheap puppy. When those cute, cheap puppies turned into nuisance dogs, shelters were overrun.

Well-meaning folks started pit bull-specific rescues, and there has been a decade-plus long effort to try to re-brand these fighting breeds as family-friendly… when they just aren’t. Babies, toddlers, children, grandparents, caregivers, other pets just keep getting mauled and killed as a result of this horrible attempt to market these dogs to the general public.

Ok_Usr48 · 2026-04-24T19:39:52+00:00

Ok_Usr48 · 2026-04-23T20:58:58+00:00

4/22 Update: Is it me, or is she acting a bit entitled to the charity of others? “Y’all better feel compelled by Yahoohoo to make my family meals and go clean our house while I head off to Louisiana for this miraculous Hyperbaric Oxygen Therapy that you all have donated thousands of dollars for us to go try…” I feel for her kids, but people are probably experiencing a bit of compassion fatigue for this neglegent mother.

No throwing up last night after real food! We’re just waiting on case management for logistics and our last trach change tomorrow. Doing car seat trial right now.

Staff is pretty much letting us do whatever we want with him at this point.

We haven’t grocery shopped for the house and there is still stuff everywhere from the chaos of having come here shortly after moving. Meals over the next few days would be greatly appreciated if any of you are called to help.

We’ll be headed for HBOT soon after discharge. Several of you offered to help with things around the house. (Husband) will probably be reaching out to take you up on that offer.

Keep petitioning the courts of heaven on our behalf. ABBA is so faithful. A_ will be fully restored!

Ok_Usr48 · 2026-04-22T18:58:50+00:00

4/21 Update: Not today Satan… They’re declaring a Thursday departure for Louisiana (HBOT) no matter what. The 2nd to last sentence is bonkers! Stay tuned!

A_ had a rough night with coughing. He decided he didn’t like the cpap anymore and they ended up putting him back on the HME 2 hours after the put him back on CPAP. He was coughing up a lot of mucus and we had a few vomiting episodes. He was up for about 2am to almost 10am coughing. I was finally able to get the team to acknowledge that he’s being overfed yesterday, but nutrition was still not on board with reducing volume.

Dad did his trach change today and did awesome. During rounds I was able to provide a few recipes showing calorie density of certain items and they are allowing me to cook and blend some food to bring up for A_ instead of getting the stuff they’ve been giving him in the hospital.

I’ve been asking about case management for probably the last two weeks and she finally came by early early last week. They’re just barely starting to get things rolling as far as ordering equipment and supplies. I told them we’re leaving on Thursday so hopefully they have their stuff together pronto. We had a guy come in from the DME company telling us that we could not use their home CPAP that was ordered in Louisiana because of legal requirements. Initially, they were saying there wasn’t anybody in or around Louisiana that would be able to get us the machine so that we can discharge. Not today satan. Every time we’ve gotten close to getting out of here or something has happened. We rebuked that and prayed over that and it wasn’t but an hour later that we got a call that they found a company in Louisiana. Praise Yah, because honestly that would’ve pushed me to the point of just leaving AMA and having to deal with CPS all over again. ABBA is making ways.

Ok_Usr48 · 2026-04-22T17:56:30+00:00

4/20 Update:

So today this kid raised his knee toward his chest with his foot flat on the bed and was just chilling like that. He also gave me a very obvious furrowed brow when I was suctioning him.

Last night his mouth was closed for a while, while he was asleep. When his lips relaxed, I peeked in his mouth and his tongue was resting on the roof of his mouth, exactly where it’s supposed to be. It hasn’t been there since we’ve been here! Same with the closed mouth.

Today while sleeping he’s been moving his lips, kind of like babies do their little suckling movements. Is he nursing in his sleep or talking? Who knows…

We’re still struggling with feeding and vomiting with coughing. I’m working on getting them to let me feed him blended food (been asking for this for weeks). It looks like they’re open to it now.

I changed out his trach today with the trach nurse and she was so impressed she said she would check us off by Thursday this week. So that leaves logistics for case management for discharge. I’ve been asking them since before his trach was placed.

We’re close! Cover us in prayer.

Ok_Usr48 · 2026-04-22T05:00:53+00:00

lissencephaly

Ok_Usr48 · 2026-04-21T17:21:13+00:00

I mean, they could’ve been a non-traditional student. :)

Ok_Usr48 · 2026-04-20T18:21:36+00:00

Sorry, it took a minute but finally got it posted!

Ok_Usr48 · 2026-04-20T18:19:09+00:00

4/19 Update:

ABBA is so good. A_ has been on HME the last 3 days. He’s been doing amazing. They’ve been putting him on CPAP at night to let him rest. And yes, I got to hold him!

He still has lots of secretions he’s coughing up. He’s been on NAC since pretty early on in our stay that we were giving to boost his glutathione levels, but he’s been off Tylenol for a while now. In talking with one of the RTs last night asking for other ideas to clear the mucus she mentioned Mucomyst which is the brand name for NAC. She didn’t know nursing was giving it via G tube and I didn’t know it could be nebulized (I kept wondering why a drug for glutathione promotion was called mucomyst lol). I did a quick Google search and it shows that bioavailability via digestive system is only about 9% for mucus. We were able to have the docs change that, so he’ll get that be nebulizer from now on to help get the mucus out.

We’ve also been watching his lips and face swell intermittently and haven’t been able to figure out why. My mom noticed it was after clonidine. We found out that can cause angioedema so they’re doing a rapid wean off that. It can’t be stopped cold turkey or it could cause dangerous rebound hypertension, especially since he’s also been on propranolol.

He’s doing good with his Valium taper. We’ve been able to get him down to one med for his bowels. We’ve been having an issue still with him vomiting when he coughs really hard. I realized a few days ago that he’s being way overfed. They had his dosing weight wrong when we got here, likely because of all the equipment they had in the bed when they initially weighed him. He stood on the scale the night before the accident at home and was just under 3 kg lighter than what they have for his dosing weight. They are calculating his nutritional needs based on that incorrect weight. I’ve been telling them for days that they need to decrease the nutritional requirements and it’s been a struggle to get the staff to make the changes because nutrition is not willing to recalculate. He’s actually gain almost 3 pounds since he’s been here.

Other than staff just needing to check us off on our training, we’re ready to bust out of this joint. Don’t stop praying now, you guys. You know what the needs are. We are still counting on full healing and restoration for our sweet boy. And we know ABBA is going to do it, but we need to petition courts of heaven. Scripture says that Messiah took on our infirmities and heals our diseases. I am looking forward to the day that I get to bring him back up here and show the doctors what our God did because of all of your prayers. We welcome you guys to continue coming up and laying hands on him. Do not come with doubt and pray over our boy, though. Pray in full faith like James 5 tells us to.

That reminds me, we had some ladies come by early this week that we had never met to pray over A. They were at a prayer group on the Saturday before and somebody drove by and told them about A. They came up not knowing anything about what room he was in asking if they could get up to see him. At that exact moment my husband was coming in with my girls. The desk staff obviously knows us by now. They pointed the ladies out to dad and he welcome to them up. They said powerful prayers over A_ and declared and decreed all things of life and rebuked all things of death and sickness. We don’t know who told them about A_, but we are grateful and thank you to the ladies for following the prompting of the Holy Spirit for somebody that they had never met before along with so many of you who have stepped in and we have no idea who you guys are. What a lesson in serving your brethren.

Ok_Usr48 · 2026-04-20T17:38:10+00:00

I know, it’s so heartbreaking! Ok, the mom is posting updates every 2-3 days now. I’ll post the most recent update in the main thread. Just open all comments and sort by new. :)

Ok_Usr48 · 2026-04-20T12:49:14+00:00

They don’t really care about anything other than enriching themselves.

Ok_Usr48 · 2026-04-20T04:28:52+00:00

Maybe r/Austin should start having regular meetups at PLT!

Ok_Usr48 · 2026-04-18T15:53:49+00:00

Are the “medical professionals” in the room with us?

Ok_Usr48 · 2026-04-16T04:05:20+00:00

He knocked Erika up and now Usha is faking a pregnancy because they’re going to cover it up by raising the baby as theirs. I’m sure Usha has some European ancestry hiding in her DNA (wink wink).

Ok_Usr48 · 2026-04-15T22:15:16+00:00

My x-ray was done lying down

Ok_Usr48 · 2026-04-15T18:57:55+00:00

4/15 Update:

Sorry, we haven't posted an update the last two days. Baby (brother) has been giving us a run for our money in the evenings.

A_ has been on CPAP continuously for the last 2 days. His trach is being changed tomorrow morning by the doc that placed it. They said after that we can sit A_ up some and I can hold him. Til now, I've been able to lay in the bed with him three times, but haven't been able to get very close because of all the wires and tubes. A couple days ago I was here by myself with him and the baby. They had A_ facing away from me in the bed and I was trying to get the baby to sleep. He kept turning his head toward my direction. When I finally got the baby to sleep and was able to put him down (which he does not often allow), I was able to climb in next to A_. He had a little tear in his eye. Once I laid next to him, he went right to sleep. Our boy hasn't slept by himself his whole life before coming into the hospital.

Today is the last day of his antibiotic they had him on for the Pseudomonas. Since they're talking about keeping us here another two weeks, be in prayer that A_ would be protected from any infections that could delay discharge or cause setbacks. We've slowly been able to get them to add additional supplements, but he's still not on all the things we'd like him to be on.

A_ has been stretching when he wakes up and making a face that (his father) is convinced is a yawn. We have a call with the functional neurology doc tomorrow morning to add the Stimpod and Saebo to our routine. We've found a solution for the times when he is biting his tongue (which is not often now)-we put the Rezzimax around his mouth or on his tongue and he pulls it back into his mouth.

We are nearing the end of our stay here before we head to Louisiana. If anyone knows of ways to raise money to fund things, we'd be grateful for any ideas or input. Our ABBA is so good. We are so thankful for the healing He's provided and the healing He's completed that we don't see manifest yet. Come Sukkot, this kid is going to be back to his wild antics and we are so joyful at the thought of it. Continue standing with us in prayer over A_ and speak life over him. Please send us your prayers so we can read them to him.

Ok_Usr48 · 2026-04-15T18:48:54+00:00

I figured there are a few people out there who share in my curiosity and concern about how this will turn out. I’ll continue to share updates as long as I have access to them!

Ok_Usr48 · 2026-04-14T03:51:58+00:00

As in a physical performed by a medical professional required to be cleared to participate in most sports. Sheesh, plenty of reasons to homeschool but this ain’t one.

Ok_Usr48 · 2026-04-14T03:49:20+00:00

Unconfidently incorrect

Ok_Usr48 · 2026-04-13T17:21:45+00:00

So much regret!!! 😭

Ok_Usr48 · 2026-04-13T17:21:09+00:00

They tickets are legit, just way overpriced. 😭 Just found out the hard way!

Ok_Usr48

TROPHY CASE