Jordan’s Journey to a cure

Jordan’s Journey to a cure Jordan’s Journey to overcome Arteriovenous malformation AVM https://m.youtube.com/watch?v=8pt_UGPXUz0

Hallelujah! We have silently been SO STRESSED about this! Prayers answered BCBS is back in network for Memorial Hermann ...
04/11/2026

Hallelujah! We have silently been SO STRESSED about this! Prayers answered BCBS is back in network for Memorial Hermann which includes TIRR and the majority of all of his doctors.

Jordan had an appointment to get his new stainless steel tracheostomy today with Dr. Alava at UT . Chloe our private dut...
04/11/2026

Jordan had an appointment to get his new stainless steel tracheostomy today with Dr. Alava at UT . Chloe our private duty nurse actually inserted it under his direction because she’s only practiced in school on child mannequins. She did wonderful today giving Jordan a shower this morning ,dressed and ready, and she even got Jordan in the van on her first try! Trust me it’s a lot harder than you think driving that wheelchair in a confined space with oxygen bottle on the back and turning. Chloe looks so serious in that picture but trust me she’s a joy to us daily. She’s wonderful with Jordan. She calls him her sunshine ☀️ and takes him to the spa (shower) and the nail and massage salon often . 😂

We got approved for another private duty nurse today for an additional 44 hours weekly. So if you know an LVN looking for a full time M-F 9pm-5am nightly position they need to apply with Angels of Care.

We are STILL fighting for the shower chair! Even though it’s been “approved “ several times now I’ll probably make a separate post later about that when I have the energy to explain that pile of B.S. 💩 😑

But today I’m looking to the blessings of having found Chloe. And on the search for another night nurse and an aide that is not a felon. 🤦🏼‍♀️ That’s another whole post! 👀 😂 Thank god for our suspicion and Chloe’s quick googling!

It’s never a dull moment here!

We love you all and thank you for thinking of us often! Today was the first day someone didn’t have to take off work to go with me to Houston! 💕




3/18/2026Today Jordan had an appointment at TIRR. We took this opportunity to let Chloe (our first ever private duty nu...
03/18/2026

3/18/2026
Today Jordan had an appointment at TIRR. We took this opportunity to let Chloe (our first ever private duty nurse) get a better idea of just everything that Jordan needs and how you do it. Adam showed her this morning how he gives him a shower. It’s a major task for me with my spinal fusion. Then we went over how we dress, transfer him to his wheelchair and how to use the track systems in our vehicle, it provides a secure, versatile 4-point method for anchoring his wheelchair using floor-mounted metal tracks and tie-down straps. Not everyone knows about all these wheelchair gadgets. We got to stop at Buc-ee’s twice of course. Jordan’s appointment was with Dr. Li he was doing Botox in his right neck, pecs and outer lower right arm to prevent his spasticity in his right hand. It’s very hard to open and clean. We’re trying to prevent skin breakdown as well. He also got bilateral fasciotomies on both arms his tendons are shortening causing this “cording” under his arms preventing them from being lifted no amount of Botox will fix that. I think TIRR was an eye opening experience for Chloe, watching the procedures, seeing the gym, and how the conversations with the doctors there are different than our typical local doctors. Chloe is doing excellent and this is just her 3rd day. It’s A LOT to take in. She even was able to suction him in a moving vehicle! 😂 Thanks for all the thoughts and prayers we appreciate them all!


It has been 64 months since Jordan has been home after his AVM rupture and first hospitalization with NO help no caregiv...
03/17/2026

It has been 64 months since Jordan has been home after his AVM rupture and first hospitalization with NO help no caregiver except just me. I can not begin to explain the hardship that it has caused us … mentally and physically.
Today marks the FIRST day that Jordan had 8 hours of a private duty nurse. Chloe has been a true blessing that I hope that continues for a long time coming. We’ve been told that they are trying to up the hours from 40 hours to 120 hours per week. We obviously would have to hire more than one nurse for that. But for the meantime I’m going to praise this true blessing! Prayers are working. It should not be this difficult for the most vulnerable people to get care.

3/4/26We’ve had a bad few weeks/days but things seem to be turning around hopefully. Jordan is needing around the clock...
03/04/2026

3/4/26
We’ve had a bad few weeks/days but things seem to be turning around hopefully. Jordan is needing around the clock suctioning. Probably a touch of whatever virus we had or just his colonization of klebsiella pneumoniae flaring up. Either way I’m asking for some prayers as we navigate some changes in his healthcare. Mainly getting some private duty nursing to help. This has been a LONG time coming. I almost don’t want to mention it as to Jinx it! 😂



Well I’ve been asked to update everyone on how’s everything going because of half us being sick and trying to keep Jorda...
02/28/2026

Well I’ve been asked to update everyone on how’s everything going because of half us being sick and trying to keep Jordan well. I should probably start by saying who needs a mid life crisis? My whole life is one big crisis! lol 😂 Please know my go to for stress is getting a good laugh. So enjoy my day! I started off the morning at 5am not hearing Jordan breathe on his “baby” monitor. 👀 Because it was missing. Lol Adam slept in Jordan’s room and Nolan had the monitor in his room but Nolan started puking because he got too hot and ended up sleeping on the couch downstairs. Adam came home to watch Jordan while I went to my 6 month “well” visit sick. I just needed my diabetic supplies. But ended up having fever, blood drawn, a swab, and a shot. I tested negative again for the flu but they gave me an antibiotic shot. Madison Krautz NP (Jordan’s old classmate) was delighted with my weight loss and asked what I was doing differently . I said umm you gave me meds to tell my pancreas to start working. I’ve made no big changes to my diet. Got home Nolan decided to make cinnamon rolls. Adam left to go back to work. I ran upstairs to return to my usual attire, pajamas. Waffles our 100 pound boxer decided those cinnamon rolls looked delicious and got one but also turned on the burner on the stove starting a fire🔥 in our kitchen! Nolan ran downstairs with me to put out a literal fire. We can’t breathe anyways because we’ve been coughing up lungs (especially Nolan) . Now the house has smoke everywhere downstairs but thankfully not really made it to Jordan’s room. We had to air it out open windows and doors crank down the AC because we still have fever. I can’t make up this 💩… a bee flew in I’m panicking Jordan’s going to get stung . Been chasing that jerk all darn day! We just fed him to the toilet gods. Nolan has had nose bleeds dripping blood all the way to the bathroom. I need a maid stat! 😂 Days not over… Jordan isn’t looking too hot I think he got whatever we have/had. Suctioning him every hour it seems. Who needs sleep? NOT US! 💪 lol Jordan just urinated all over the bed so much it was all on the floor. Glad dad’s home to give him a shower because I literally just threw out my back by sneezing!🤧 Oh yeah I forgot I need to check on my middle son. Poor Corey and his car troubles lately he’s probably still stuck at work because someone took out a sign that goes over i10 both East and West bound traffic. If you’re local you know someone that’s still sitting for hours in that mess! He blew his radiator the other day and is waiting to get fans to keep it from overheating. So the worse thing to do is sit in traffic.
Oh well we will keep on smiling and laughing at life.
Jordan would be laughing at today too. Boy I miss that smile!



2/ 25/26Tripp is my buddy today I’m sequestered  upstairs alone. I caught whatever Nolan has and this sore throat is aw...
02/25/2026

2/ 25/26
Tripp is my buddy today I’m sequestered  upstairs alone. I caught whatever Nolan has and this sore throat is awful! I definitely don’t want to give it to Jordan (if we didn’t already) . My mom has taken over downstairs. This is a first. She’s very hesitant to to care for Jordan . But I am here if I have to go down there. She’s always fearful of doing “something wrong”. We’ve made plenty of mistakes. It’s a physically demanding job to care for Jordan . Hopefully she listens and takes it easy . Heather our wound care nurse is even going to help dress him this morning with her. She’s been a saint. You can always tell the good ones they offer to go beyond her duties. Trace his PT has already called this morning checking on Jordan because he saw our post saying he was having a bad day. Jordan eventually calmed down and that is the ONE of the hardest things not knowing what’s wrong some days . Happy Hump day. Hopefully our week gets better. But until then we will deal with whatever will come our way. 💪
Pray for my mama that she doesn’t try to do too much. 💕



We are all kinda having a rough start to our week. Everyone is still working the shutdown except Nolan (the baby of the ...
02/24/2026

We are all kinda having a rough start to our week. Everyone is still working the shutdown except Nolan (the baby of the house) was vomiting all night . He hardly ever gets sick. In an over abundance of caution we took some over the counter rapid Covid, flu A&B tests all negative. Jordan has been upset all day with a heart rate in the 140s-150s. Our private duty nursing has not started as promised and the “approved” shower chair orders now needs to be rewritten in a more specific way for the durable medical company Great American. Also all the therapies need to be recertification, so we have to explain how his insurance has a clause because of it being a traumatic brain injury that he has unlimited services . It’s just a lot of phone calls and fighting for the things Jordan needs. I’ve been focusing my prayer this week on something my church posted so I’ll just repeat it here.

A Word for the Weary – Psalm 147:3

There are moments in life when the hurt feels too deep for words—when grief lingers, hope feels fragile, and healing seems far away. Psalm 147:3 reminds us that God does not overlook our pain. He leans in close to the brokenhearted. He sees every tear, every ache, every silent prayer whispered in the dark.

Our God is not distant from our suffering. He is a healer who gently binds our wounds, piece by piece, with compassion and love. Healing doesn’t always come instantly, but it always comes intentionally. In His hands, nothing is wasted—not even our pain.

If your heart feels heavy today, rest in this promise: you are not forgotten, and you are not alone. God is near, and He is at work, restoring what has been broken and breathing hope back into weary hearts. 🤍



02/20/2026

Today we made the trip to Houston to TIRR to get his refill on his Baclofen pump. His battery life will go out July of 2027. They mentioned since he’s gained weight since it was first placed he may be able to get the larger size to minimize the amount of refill trips we would have to make. We can discuss that when it’s closer to time . A baclofen pump is a surgically implanted device (roughly the size of a hockey puck) placed under the abdominal skin that delivers medication directly into the spinal fluid to treat severe spasticity or dystonia. By bypassing the bloodstream, this intrathecal baclofen therapy (ITB) provides superior relief with fewer side effects than oral medication. It is used for conditions like MS, cerebral palsy, and spinal cord injury. small, titanium pump holds the medication, which connects to a thin catheter that travels under the skin to the spinal canal. It continuously infuses medication into the fluid surrounding the spinal cord, reducing spasms and improving comfort/function.The pump is programmed via an external device, and it must be refilled in a clinic every few months, with battery life lasting roughly 5-7 years.


We are celebrating today! It has been one whole year today that Jordan has been seizure free! For reference the year be...
02/15/2026

We are celebrating today! It has been one whole year today that Jordan has been seizure free! For reference the year before it was 22 seizures some lasting up to 22 minutes. We had some amazing friends visit this week David and Carly Bowers. When I ask myself how can I get through one more day? They are my inspiration of how to with dignity and grace and look for the positives. (David was in a refinenery explosion years ago and still deals daily with the effects) They enjoyed some amazing food here. We made it work even during the boys working the weekend and longer hours.




https://www.bowersministry.com/?fbclid=IwVERDUAP-1y5leHRuA2FlbQIxMABzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEeSPx9JtxvJ2_vrwBfwJqZelFAA7btUwtIUObPbMnOqLLRu29tskMN2HunZ1c_aem_h3FcqyvhF2RhYgoxPcsrpw

Happy Valentines DayMost people associate this day with their significant other. For me it was always my sweet children....
02/14/2026

Happy Valentines Day

Most people associate this day with their significant other. For me it was always my sweet children. They didn’t show it often the occasional love you and the side hug . I have to admit Jordan was the sweetest of the boys and always got me flowers. Whether it was from picking wildflowers or full huge bouquets he also brought me them for no particular reason. Valentine”s Day has been difficult for the last 5 years. Please take today to tell someone you love them. Life can change in a blink of an eye. 💕


02/11/2026

Video from Valentines before AVM rupture

Prayers for this week to go well. We are interviewing private duty nursing . Also having sweet friends visiting. Starting PT, OT, Wound Care NP, and wound care nursing continuing. To top things off all Adam, Corey, and Nolan are starting a shutdown on Valentine’s Day. 💕

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