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

01/28/2026

. Spending time snuggling with my precious little guy! I love him soo much!

JJ is in a good mood today! It makes my heart happy 😊 🥰
01/27/2026

JJ is in a good mood today! It makes my heart happy 😊 🥰

JJ enjoyed the sleet/ice 🩵
01/27/2026

JJ enjoyed the sleet/ice 🩵

JJ is happy this evening. I’ve been holding him ,singing to him, playing with him ,and he loves when we shake his legs!...
01/25/2026

JJ is happy this evening. I’ve been holding him ,singing to him, playing with him ,and he loves when we shake his legs! He was almost laughing!

Last night was a long hard night with trying to keep JJ as comfortable as possible. He was awake off and on throughout t...
01/24/2026

Last night was a long hard night with trying to keep JJ as comfortable as possible. He was awake off and on throughout the night. He is such a brave little boy, but this surgery has a painful recovery. So far he’s doing OK. Hopefully tonight goes better. Just pray that he sleeps better tonight and that he can recover soon.

JJ hasn’t been able to sleep good so far tonight… he nods off for a little bit and wakes up and his restless, and I’m ju...
01/23/2026

JJ hasn’t been able to sleep good so far tonight… he nods off for a little bit and wakes up and his restless, and I’m just trying to find a comfortable position for him so he can sleep. I’m on the Night Shift and I just hope he’s OK. Been giving him pain meds every three hours alternating between two different ones and just trying to keep him comfortable.

All comfy at Home!
01/22/2026

All comfy at Home!

Headed Home! Please pray that he doesn’t have too much pain during his recovery. And that his incision sites heal well w...
01/22/2026

Headed Home!

Please pray that he doesn’t have too much pain during his recovery. And that his incision sites heal well with Zero infection. One of them is soo close to his Trach.. that makes me so nervous. He is such a tough and brave little boy! He smiles through it all!l, although he is still dealing with a lot of pain, and swelling. I hope it can help control his seizures.

JJ says good night, everyone! His heart rate and blood pressure levels have been elevated due to the pain and just ever...
01/22/2026

JJ says good night, everyone!
His heart rate and blood pressure levels have been elevated due to the pain and just everything that been going on today… it’s been a LONG DAY…. Up at 5AM 😴
Hopefully he sleeps all night.

Is recovering well so far. Just taking a nap.
01/21/2026

Is recovering well so far. Just taking a nap.

01/21/2026

JJ just went to sleep.( Anesthesia) they are starting his surgery now. (9:30 AM Tuesday, January 21)

Checked in at the hospital ,and ready for surgery. We got here at 6 AM …😴 ❤️‍🩹💙🥰🥺
01/21/2026

Checked in at the hospital ,and ready for surgery. We got here at 6 AM …
😴 ❤️‍🩹💙🥰🥺

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Temple, TX

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