Jordan’s Journey to a cure

08/18/2025

I thought it was very sweetJordan was honored at his 10 year class reunion on Saturday. It seems like just yesterday. Although Jordan is still here with us he will never recover or be the same. Whether you knew him or not he had a contagious smile. He seems to have friends where ever we go. It can be incredibly challenging grieving someone here with us today. There's no finality, unlike death, and the lack of closure can make the grieving process feel confusing. Again thank you everyone for including him. 💕

Jordan is still doing as expected. I am upset that we cannot get him up in his wheelchair daily like we like to. He’s currently battling a pressure sore that he got from his shower chair. It’s amazing how a bruise can turn into such a horrible sore. He’s currently having a wound care nurse come out 3 times a week. He has a wound vac and it has improved the healing process but hopefully another month and it will be healed God willing. 💕

07/18/2025

I heard a version of this prayer yesterday and thought I would share it here with you. Excuse my grammar and spelling.

"Father, when life feels uncertain and I don't know what's ahead, doubt fills my heart and makes me question your plan. I want to trust you, but I often feel overwhelmed by what I don't understand. I know you see the bigger picture, the details I cannot comprehend, and you are working all things for my good. Help me release my need for control and place my trust completely in you. Quiet the voices of doubt and anxiety that try to steal my peace. Fill my heart with assurance that your ways are higher than mine and your timing is perfect. Teach me to take each step in faith, even when I don't have all the answers. Show me that you are within me and with me, guiding me, preparing me for something greater than I can ever imagine. Help me find the joy in the journey, even when the road feels long or difficult. Lord, give me the courage to trust you in every aspect of my life, my relationships, my work, and my future. Remind me daily that you hold my life in your hands and your plans are always for my good. Thank you for being faithful, for never leaving me, and for leading me with love. In Jesus's mighty name, Amen."

07/17/2025

06/22/2025

6/22/25 Let's cherish the sweet memory of Jordan working at Tate & Company 10 years ago! It's amazing how time flies. Jordan could use some extra prayers for comfort as he's facing challenges with low oxygen levels. He's been aspirating, and we've had to suction secretions constantly. Additionally, he's dealing with tummy issues and unable to urinate on his own. Despite running on empty with minimal sleep, we remain hopeful. With everyone's busy schedules, I've had to adapt to less help, but we're trying to stay positive. As the anniversary of Jordan's AVM rupture approaches, we're praying for strength. Please keep us in your prayers, and also remember my mother, who's undergoing another heart procedure on Friday. This should be her last, and we're praying for a successful outcome. She's had main blockages in her carotid and subclavian artery, and this less invasive procedure will help alleviate those issues. Although the procedure does have some higher risks for another stroke. We're staying optimistic and grateful for your support. 💕

06/01/2025

6/1/25 Update from yesterday. I had to call Adam home from work this Saturday. Jordan’s trip to Baptist ER went well. The emergency room doctor was asking why he had a Mic- key button. Normally they are for pediatric patients but Jordan is small and he was pulling the gtube out that was first placed in 2020. His arm is contractured right in that area where it needed to be placed. So gastrointeroligist said it would be better and easier on him and us with a Mickey button . That has worked for us until now. We are ok with the gtube that is placed now. Jordan has appointment on the 13th with his regular gastro at UT. We think he may go back with the Mickey . We also kinda felt relieved the emergency room doctor could not place the 2 new surgical Mickey button kits we brought up there with us. Because we were unsuccessful to do so at home also. We knew something was going on with this Mickey button and I had already scheduled an appointment to see his regular gastroenterologist at UT doctor Barani Mayilvaganan. As everybody knows it’s not easy to get appointments immediately so his appointment is not until June 13th. Hopefully we don’t have any issues before then. The ER visit actually went pretty fast for being at the emergency room. It was only an hour and a half in and out ! So that tells us that everybody that he skipped in the waiting room wasn’t actually there for real emergencies. Hope everyone can enjoy your Sunday. I’m feeling a little less anxious now.

05/31/2025

Jordan could use a few extra prayers right now. He’s headed to Baptist ER. Hopefully they can replace his peg tube with no additional issues. I was unsuccessful to do it at home.

05/15/2025

5/15/2025 After yesterday’s post I had a few people reach out and ask how Jordan is currently.

He had an appointment with endocrinologist this morning via telehealth his bloodsugar is doing better than last year. His hypoglycemia is more under control with an adjustment of a VERY slow rate of 48ml an hour continuous feeding with his food pump.

He had Phenol and Botox injections this last month with Dr Li at TIRR . His muscle contractures seem a little better since.

Jordan‘s appointment with Dr. Tallavajhulla  his seizure specialist on April 16 th went well. He has only had one seizure this year by the grace of God. Obviously the new increase in the seizure medicine is doing great .

Jordan had an appointment Dr. Alivia at UT medical he is an ENT on April 30th. We have downsized Jordan‘s tracheostomy to a size 6. We suspect that the size 8 was a little bit too big for his body size and was irritating him, because when we laid him down, he began to cough. A tube that is too big can press on the tracheal wall, causing irritation and swelling.

Jordan has had to go to Wound Care locally here with Dr Ahmad Waqar  he acquired a pressure sore from his stupid shower chair that we despise. I’ve been complaining about this shower chair for over a year. I knew he would get injured in that contraption . We need to get a new customized shower chair. The shower chair DME company refuses to send the claim to insurance even though insurance says they will pay for it. The out of pocket cost is close to $3000. 

Overall Jordan is doing as expected some days and weeks are worsening. Occasionally we have a great day. We are running on little to no sleep. The star plus programs was approved on May 1st for a private duty nurse. But we have yet to hear from our caseworker he has 15 working days to reply. 🙄 I’m not holding my breath for help. I’ll continue to care for my son to the best of my abilities even if it kills me. Thank you for all the thoughtful comments for Jordan’s birthday and the continued prayers💕

05/14/2025

Today marks Jordan's 28th birthday, a day that's difficult for us. Since Jordan doesn't eat, we won't have cake, and there won't be any presents or celebration. What we do have, however, are our memories. We'd love to hear about your memories with Jordan or look at some pictures you may share. I love this last birthday picture in 2020 before his brain injury.
I miss his beautiful smile. 💕

03/07/2025

March 7, 2025
Hey, welcome back! I took a much-needed break from social media. The hurtful comments I was focusing on had become too much for my mental health. We initially decided to put Jordan on hospice, but as we met with them, we decided that was not at all what we wanted. To be blunt, they wanted to stop using his feeding tube, which would have led to starvation, not give him injections for symptom management, leaving him in pain, and take away seizure medications, which, within hours, I'm sure would have caused him to start having constant seizures. I'm hopeful for a peaceful journey for Jordan. God is in control.

Things that have happened since our last post:

After Jackie, my mom had her quintuple heart bypass surgery; she then had another surgery to resect her blockage in her carotid artery. Her incision on her neck has healed nicely from that. However, I believe she had another stroke during or after that procedure, which caused her drop foot to become worse. I worry about her mobility issues. She completed physical therapy with Jordan's favorite therapist, Laura. She has recently improved enough that she started driving short distances on occasion.

Corey, my middle son, has moved out and is now living in West Orange. He's still working at HEB, and the state is currently paying him to be an aide for Jordan. His help with Jordan's care, mainly doing Jordan's showers, has been a great help. The pay is little to nothing, but it's something. We are awaiting approval for this program called Star Plus, which would allow for a private duty nurse, which would be a huge blessing. However, I've been disappointed too many times to count. I'm trying to stay positive, but I've gotten zero help in the last five years.

Nolan, my youngest son, helps with Jordan every day when he's not at work. He actually just left his last job and will be starting a job out at Exxon. It all happened pretty fast this week. He did all his necessary classes, got his TWIC card, and did a drug screening. He's just awaiting his background check to get back so he can get his badge. Crazy enough, the pool he was supposed to be cleaning this morning is now involved in a crime scene. I have no details. Prayers for the family and friends for the loss of their family member. Nolan should be starting his new job on Monday. I'm happy for him. Although I'm positive I will see less of him, I'm sure he will be taking advantage of all the overtime he can acquire.

This morning, I'm taking Jordan to a routine neurologist appointment with Dr. Woo and getting his baclofen pump refilled at TIRR Memorial Hermann. Please continue to keep us in your prayers. I'm hopeful we can finally get some much-needed help with a private duty nurse if this Star Plus program goes through. Love you all as always take care!

10/17/2024

October 17, 2024. Yesterday, Jordan consulted with Dr. Tallavajhulla, his seizure specialist, who recommended adjusting his medication regimen due to Monday's seizure. Jordan's status remains stable, with no significant developments. This change may cause temporary drowsiness. Meanwhile, my mother is recovering steadily following quintuple bypass open-heart surgery. She was transferred to room 308 last night, and all lines, drains , and catheters have been removed. Although she requires continued inpatient care, her progress is encouraging. Upcoming procedures will address her carotid artery and leg blockage issues. After discharge, the plan is she will receive home health and therapy at my residence. Our church community has provided notable support, organizing a visitor schedule to minimize her solitude, thereby alleviating my concerns while caring for Jordan. Their assistance has been GREATLY appreciated. 💕

10/10/2024

I know I have been silent. I have been trying to deal with everything that has been thrown my way. The source of our stress isn’t really difficulties, circumstances and situations. It’s our attitude and approach toward them. With that being said… Jordan is doing ok. My dog Layla is also ok. She has liver cancer we had a lobe of her liver removed and is recovering as much as expected. Our family members in Florida are all safe. Some had damage but possessions can be replaced. My mother is having a few procedures tomorrow. When we were at Memorial Hermann with Jordan taking him off the ventilator she visited and looked unwell. I had concerns she had a mini stroke. She began dragging one of her legs. She had routinely scheduled stress test, echocardiogram and ultrasounds of her extremities. Basically everything came back abnormal. Tomorrow she is having angioplasty on both carotid arteries, a heart procedure to remove the fluid from her pericardium ,and repair the blockage in her leg. She will be at Baptist in Beaumont and will have to stay the night. I’m giving it to God. “Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”
(Matthew 6:34)