JJ's Journey

JJ's Journey JJ got Hypoxic Ischemic Encephalopathy at birth. He has a G/J Feeding Tube, and a Trach, & recntly weaned offf the ventilator!!

He has Dystonia, Lennox Gastau Syndrome, and Epilepsy, as well as spastic quadriplegic CP, his newest diagnosis is dysautonomia

Just learned that we leave very soon for JJ’s Make a Wish Trip!!! We are Soo excited!! The packing has begun.. here’s ...
03/06/2026

Just learned that we leave very soon for JJ’s Make a Wish Trip!!! We are Soo excited!!
The packing has begun..
here’s a list of some of what we have to pack for just JJ!!

List:

VNS Magnet
Charging cables for all equipment
Suction
Aerogen
Feeding pump
Formula
Sterile water
Pedialyte
Vitamins
Cayston
Cayston machine/plug
Rechargeable batteries
Oxygen concentrator
Oxygen lines
Oxygen tanks
Meds
Medical Supplies
Diapers
Trach care kits
Sterile gloves
Tegaderm
Med tape
Trach ties
Trach circuits
Travel circuits
Star projector
Distilled water for vent circuit heater
sunglasses
Swim clothes
swim diapers
Beach Towels
7 outfits
Socks
Spit rags
Hat
Shoes
Backup charging bank
Syringes
Rescue meds
blankets
Bath Chair
wheelchair Umbrella
Toys

02/25/2026

We brought JJ home from the hospital last night . so far he seems to be doing better.

JJ had a really bad mucous plug this morning so I had to do an emergency trach change. He’s also had so many alarms on h...
02/23/2026

JJ had a really bad mucous plug this morning so I had to do an emergency trach change. He’s also had so many alarms on his ventilator so we are consulting with pulmonology about putting him on higher settings for sleeping every time he goes to sleep It seems like he forgets to breathe and also he’s not getting proper volumes to inflate his lungs.
We are still working on getting his constipation to clear out. He’s still been throwing up but not as much. He’s on total bowel rest and, IV fluids for the time being.
Also consulted with G.I. and they agreed with me that we should change him to a more broken down formula so he will be back on EleCare Junior as he was when he was younger. It is a specialized formula that is broken down to amino acids for easier and quicker absorption. His digestive system has slowed down quite a bit recently.
Please pray that we can figure everything out and get him home as soon as possible.

Yesterday I took JJ to the emergency room and they gave him an e***a to try to clean him out and send us home. Today I b...
02/23/2026

Yesterday I took JJ to the emergency room and they gave him an e***a to try to clean him out and send us home. Today I brought him back because that did not do the trick. They did a CT scan with contrast to get a really good look at what’s going on and they are giving IV fluids and most likely he will be admitted at least overnight to give him bowel rest and more fluids and clean him out just waiting on results right now. He’s been quite a bit struggling this past week. I just hope and pray that we can get to the bottom of this and he can start feeling better soon.

The past several days have been really rough for JJ. He’s been dealing with Adenovirus and lots of gastrointestinal issu...
02/22/2026

The past several days have been really rough for JJ. He’s been dealing with Adenovirus and lots of gastrointestinal issues that came along with it.. Throwing up a Lot, Severe Diarrhea, as well as bad constipation dehydration ,more seizures than normal, fatigue, feeding intolerance , breathing issues etc. It’s so stressful.
please pray that he recovers soon.

JJ had a wonderful birthday party with The Temple Police Department, Temple EMS, Acadian Medical Transport, and Temple F...
02/19/2026

JJ had a wonderful birthday party with
The Temple Police Department, Temple EMS, Acadian Medical Transport, and Temple Fire &Rescue!! Overall about 21 people stopped by and wished him a Happy Third Birthday!!! They brought him toys and gifts and a helmet, sticker badges, let him sit in the police car, look at the emergency vehicles up close and watch their flashing lights and sirens! He Loved all the attention! He got lots of fist bumps ! We are forever grateful to all these wonderful Service Members in our community!
God has given JJ to us for 3 whole years!! We are soo thankful for him! He’s a Huge blessing and has been an inspiration to me to smile through the pain.. I am soo proud of my baby boy! He also enjoyed a little family party with “cake” ( Cosmic Brownie) and he blew out his candle with his ventilator!! He got cards and all different toys and stuffed animals etc!
We all enjoyed the evening! Thanking the Lord for this blessing we get to spend time with! JJ is our treasure! He is soo loved and we take care of him as best we can!

HAPPY THIRD BIRTHDAY TO MY AMAZING, STRONG, HANDSOME, BRAVEBIG BOY!!!!JJ we love you soo much! We are so proud of you! H...
02/18/2026

HAPPY THIRD BIRTHDAY TO MY AMAZING, STRONG, HANDSOME, BRAVEBIG BOY!!!!
JJ we love you soo much! We are so proud of you! How can he be THREE?!!!!

Only 20 more minutes of my two year-old, big boy!!!!! JJ will be 3 Years Old tomorrow!!!!
02/18/2026

Only 20 more minutes of my two year-old, big boy!!!!! JJ will be 3 Years Old tomorrow!!!!

JJ says Happy Valentines Day! 💘
02/15/2026

JJ says Happy Valentines Day! 💘

02/13/2026

‼️ TRIGGER WARNING ‼️

🚨 SEIZURE 🚨

I wasn’t sure if I triggered his device the first time or if it helped so I swiped it again and I think the second time it helped disrupt and end his seizure!

JJ has had a rough day today.. started off with a fever, then he had a bad seizure. He’s been out of it the remainder of...
02/12/2026

JJ has had a rough day today.. started off with a fever, then he had a bad seizure. He’s been out of it the remainder of the day,so far. Very sleepy and irritable. 🥺🥺😣😴💙

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Temple, TX

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