Macie :)

[brianlg31]

Macie

I didn't post this in the beginning. My ingenious wife came up with this backpack to hold Macie's food pump and food/water bag. She cut a small hole in the side and the tube can run up to Macie's stomach. It has worked great!!



Sent from my iPhone using Tapatalk

[brianlg31]

Made it through security with no problems. They did check the bags a little more than leaving Houston but nothing major.


Sent from my iPhone using Tapatalk

[Tmag]

Welcome home Macie gal, I imagine that bed felt great when you got back home.

[BowCrazy]

Hello Macie, I've been catching up on your trip. Looks like you, Mom &Dad had a great time. You most likely were very tired when you got home and I hope you got lots of rest.

The pictures were great and you got pics with some very important characters. They really were lucky to get there picture with you. Dad looked kinda scared on the roller coaster.

I'm going to go back through the pictures again but my favorite is the one of you alone smiling.

Brian it was awesome that this all worked out for y'all. It was a huge answer to our prayers.

Thanks to the Gardner's again for being a great example of parenting and being a family to all of us.

God Bless the Gardner's!!!

[Tmag]

Are you rested up Macie gal, ready for another romp on the wild side?

[brianlg31]

I haven't posted because I am still trying to wrap my head around what the new neurologist told us last Tuesday. Little back story, the old neurologist just quit answering phone calls and even quit renewing prescriptions! Not sure if Macie aged out or what, but got nothing. At one of the appointments with Dr Fransico, Keili mentioned it and of course Doc went off! He was very upset, I really like him! And at that minute he stopped doing the Botox injection, took out his cell phone and called a neurologist friend of his, gave her a little history, she transferred him to her front desk and he gave his phone to Keili to set up a appointment. Told you, I REALLY like him!

So that appointment was last Tuesday. I couldn't be there so Keili had me on speaker phone so I could hear what she was saying. She had gotten all of Macie's charts, notes and test to date and gone over everything. Here is the part that brings me to tears even now. You know those "Seisures" (laughing fits) that I told you about. That hurt so bad to find out they were seizures. Yup she says "there is no evidence that they are seizures" She then asked us some questions about what is going on when she had them, and immediately came back with "so 87% of the time everyone is home or the she is watching TV?, thats all behavioral. She's just letting you know she's there. So for the last couple of years we have cringed every time, thinking she is in pain and nothing we could do. This also explains why she didn't do it very often while we were in Florida, She had our undivided attention the whole time! I can't type what I said but you can imagine. I asked her what would have made the other Nero tell us that. Of course she took the professional stance and said she could comment on what he was thinking.

On the bright side, no harm was done to Macie, just a few more grey hair to my ugly mug. One of us would always go in to try and comfort her when she did start, so not like she was left alone while trying to get our attention. But dang it! On the really cool side, we know can go in there and laugh with her! Win Win!

[brianlg31]

.

[Old Ranger]

That's awesome!!

[dcbrown]

Brian, to me, that is the best news you could ask for right now.

[Tmag]

I like the new doc a lot!!!!!!!!!!

One of my favorites -
A joyful heart is good medicine... Proverbs 17:22

Have a great day Gardners!

[BowCrazy]

Awesome, now you have a little bit more communication with Macie.

I also have A+ ratings for the new Doc.

Keep on smiling and laughing girl we all feel great when we see it.

God Bless the Gardner's!! Thanks Brian for keeping us informed.

[brianlg31]

I don't really like Keili working nights. But it does have its advantages. I usually end up in Macies room watching what ever she is watching. Tonight is one of those nights. She's about to fall asleep on me.



Sent from my iPhone using Tapatalk

[systemnt]

Really wish this thread had a love button.

[Tmag]

Good morning sunshine, have a great weekend.

[Tmag]

Hey Macie gal, guess what day it is?????









Have a great day sunshine!