Macie :)

[Chew]

One of the worst nights yet. I'm worried about Keili. This is tearing her apart emotionally.


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Very sorry to hear this. Praying for better times.

[Burnadell]

Aw man, Brian! Prayers for Macie, you and your family! You guys have been strong for so long. Don't give up the faith yet!

[Uncle Saggy]

One of the worst nights yet. I'm worried about Keili. This is tearing her apart emotionally.


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Sorry to hear
Prayers sent


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[Uncle Saggy]

Got a call from a buddy a couple weeks ago and he asked if I'd ever stomped through a mud hole with a pair of new work boots.



Took me a few seconds but I said I sure had!



Evidently he ran into one of these boys and the guy remembered our company's name and saw it on my buddy's shirt. He inquired about Macie but my buddy didn't know the story - but it was reported back that they gave that Macie pump a good maintenance and said he stomps through every mud hole he comes across.



My buddy was pretty confused but I laughed out loud and told him to buy them boys some cold beers and send me the bill!

Right on Johnny!!


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[Longhornamus]

Very sorry to hear. Continued prayers for Macie and family.

[Tmag]

One of the worst nights yet. I'm worried about Keili. This is tearing her apart emotionally.
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Praying for strength for you guys Brian and Keili!

[freezerfiller]

Continued prayers for yall

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[Ricky T]

I pray comfort for you and Keili, Brian. I can only imagine anticipating a sleepless night with a daughter having seizures. Worrying about a daughter is enough stress and a physical lack of sleep can be miserable. I'm still believing for mud holes and pizza. Y'all hang tough. As you always have!

[brianlg31]

How bout a bit of good news!

Macie had a scheduled appointment with Dr Francisco at TIRR for her Botox injections. You may recall Dr Francisco is one of our favorite! He was very instrumental in coming up with the baclofin pump used by so many, and just loves to sit and talk about the studies and new stuff they are working on. And really engages us while we are in the room, for example when he is giving Botox shots he uses a ultra sound to see the placement of the needle. He will stop and make sure we see what he is looking at and answers any question we may have. Just a very likable guy, who truly loves his work and his patients. Any way, I told Keili to talk to him and get his opionion on all the seizure activity and to tell him what the Nero team told us. Here is what he said:

The deterioration progression does not mean that the brain is failing. It means that the scarring has spread and will stop and the seizures will slow down again. There are always new studies but so far not one with anoxic brain injuries and stem cell regeneration. But when he hears of one, we will be on top of the list for study trials. Then he asked about Macie's follow up, Keili told him we don't have one till April. He said that's unacceptable and will ask to see someone else.

He does want us to meet with end of life team, just so the whole family is prepared. But wants to make sure the whole family is there.

So there is some hope that the seizures will decrease, hopefully soon. I think in the back of all of our minds we now that sooner or later the beginning of Macie's next chapter will come. But knowing that hopefully she will again be comfortable till that time is comforting to Keili and I.

Once again thank you all for keeping up with us and praying daily for our family.

Brian

[clayree]

Our prayers are with your family.

[Tmag]

Thanks Brian, I too like the botox Doc. Praying for miracles along the way and strength and peace over the Gardner family.

[Brazos Hunter]

Continued prayers for y'all brother. You know if you need anything at all...


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[DUKFVR]

Brian,
Prayers continuing for Y'all.

[ladybluearm]

Praying for macie girl.

[MadHatter]

Just read through this thread for the first time, and it's heartbreaking. Strong, isn't enough of a word to describe you. You are in my thoughts brother.