No really what happened is we were supposed to leave Tulsa at noon so that we could arrive to Ft Worth by 5ish. Well we got all the kids out from school by 2 PM and then realized we needed to eat lunch. We loaded the car left for food and then went to get to the highway but I forgot my awesome new tablet to do this blog. So we went back to the house again where we had to go in and out several times for snacks, tablet, chargers, the bathroom!!, yeah...I've done this trip about 5 times now and still can't get it together! Lol you don't even want to know how disorganized we are loading the car. Haha
So we eat and then an hour later bathroom stop again. Then we end up needing more gas and stop again. Sheesh. Finally we were peacefully on our way. I love road trips even around town because it's the only time your kids are legally able to be strapped into a chair where they seem fairly happy for a lengthy time. ;)
Finally made it!
The only thing that seems to continue to annoy me is that his office is always overbooked with appointments and if you are lucky you won't wait longer than an hour and half to see him. I know that I will wait because we love Dr George. But it still gets old because unlike my car...there's no strapping down your kids in a chair here!
Of course after you wait for hours in the waiting room (it feels that long some times!!) you get checked out by the nurses
Then more waiting and the girls get restless so they find things to do in the room:
So Dr G comes in and he checks out the girls. He had a student doctor with him and I told him we need him to train these guys so they can get to Tulsa so we get awesome care there Dr G style! Anyways we end up talking mostly about Olivia. He wants to re scan her in six months. I asked how long before the syringomyelia is better. He said reality is years. My heart sank. He told us that whatever nerve loss is gone stays gone unless some of the nerves were not dead from the syrinxs. He has told us all this in the past but he reminds you and it is tough to hear each time. Matt and I believe that God has the power so we are believing for a full recovery.
Abrianna tussle headaches are basically cured from the surgery. I can tell you that after experiencing both girls go through horrible coughs that seemed to last forever the headaches were way better....and that was a few weeks after surgery. I have a theory that with my kids they are so crowded that even the slightest fever or illness or getting too hot or running a lot where the body swells inside naturally, their lack of rom seems to cause them to go down hard with bad headaches. Poor Abri's face will swell even with a fever. Dr George said he wouldn't be able to confirm that theory of mine.
All in all both the girls were released to back to normal activities. Yay! Our family has chosen not to allow the trampoline, bouncy houses, jump roping activities because the other neurosurgeons did not allow it for chiari kids. But Dr George said that he didn't care about that. There was a caution used on Olivia that with her hand and leg weakness(which seems less every day, ) that climbing might be an issue to be careful. Also helmets are recommended for bikes scooters etc but that's all kids.
So, right now we feel blessed. We are very fortunate that Olivia's chiari was found so early to get the chance for syringomylia improvement. Abri, bless her heart, she is definitely got many chiari symptoms, and having the diagnosis makes it better because it's the explanation we need. God is ultimately in control and for me ( a control freak) that has been a hard lesson to learn. I have a really hard time letting them go, even to the playground! But we are so thankful to have such wonderful teachers, administrators, friends, and family all supporting us through this process!
There will be no stopping them now! They can't even hardly stand still for pictures. I told their teachers they are probably going to have rambunctious little ones who want to run and climb everything once they realize they can again! Also, that we spoiled them something terrible...so I have to apologize for that too :)
We are going to continue to post about our children's lives with chiari. This is not over.This blog has been fun and educational for me. It's like writing a science report, and biography at the same time, while able to keep a personal journal in hopes that it does bless someone else in the world with hope for children's chiari malformation. I would like to eventually figure out a way to link other similar blogs and allow others to post hope as well.
Hugs to everyone and thank you so much for all your prayers and support!
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