Thursday, July 17, 2014

Happy News

We just found out that Avery's MRI looked good, her tumors have not grown! A mountain feels lifted from my shoulders! Finally got some news on the EEG too. They did record one seizure (that we witnessed), but it did not look any different from her past seizures. We had already increased her meds a month ago, right after her appointment, and we have not seen any seizures at all in almost 3 weeks! Finally some good news for our lil'bub. She DESERVES it.

Here are my funny bunnies from last weekend. No big deal, just a little swinging in our jammies and "rock star" glasses, so Maddie calls them.





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Sunday, July 13, 2014

Adaptive Bike for Avery

Today was a good day. Avery was happy all day, which is something we haven't seen for a good month. Her constant, beautiful smile puts the hub and I in such a good mood. So much is lifted off of our shoulders when we know she is happy. Today was made even more especially fun because we were able to pick up an adaptive bike that we had applied for two and a half years ago! A non-profit organization makes them for kids with special needs, so they are gifts. It was a wonderful surprise to receive the bike after all of this time, and even more wonderful to see how Avery responded.

Getting the hang of it...

Concentrating...

A little adjusting!

Pure joy :)

We think this bike is going to be so good for her. She has to work pretty hard to push the pedals, but we can also give her a break and push her from behind, and she will still get the movement in both legs and arms. And it has lots of room to grow with her! Yay for a new toy for Avery, she deserves it.

I really appreciate everyone who emailed or called and asked how Avery has been doing. It feels a lot easier to talk about now that she seems to be {close to} back to normal. During our hospital stay, Avery was treated for abdominal pain, but ended up being over treated. As in, I requested to speak with a doctor for 4 hours (starting at 10pm, when the new shift started rounds) and did not get one until I had an all out nuclear mom meltdown at around 2am. For four hours, she had a tube down her nose, dripping meds that she no longer needed. In those four hours, the sleep deprivation that had started showing earlier in the day resulted in crazy long, terrible seizures that I have never seen before. Avery losing seizure control is worst case scenario, so yea, I was freaking out. We had to get the nose tube out and the I.V. out and get her home to sleep as soon as possible, and pray that the horrible seizures stopped. 

There was a question about whether Avery would have been treated the same in any hospital, and I would say that we have been in other hospitals, and while none are any fun, it is normal for doctors to check in on their patients at beginning of shift. And especially if they have a parent specifically asking for them. I think even more so in pediatric units where there are patients who cannot communicate in a typical way. So yes, the situation could have been different if treatment had ended earlier and we focused on getting Avery more comfortable so she could actually get some sleep. Once we got Avery home and she did get deep sleep, I am happy to report that the crazy seizures stopped. I can't say the same for other crazy behavior, but at least we got our smiles back today!!!!

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Thursday, July 3, 2014

Plans

I don't have a lot of words tonight. As some of you know, Avery was in the hospital last week for some unexplained pain. We ended up taking care of the pain problem, but setting a whole bunch of other negative things into motion, that she is still recovering from, a week later. And when I say "we", I mean the staff at the hospital, which we will not be returning to. As Avery's parents, we are still recovering too. Personally, this is going to take awhile. I'm not sure when I'll be able to really talk about it. The whole situation makes me think of this cartoon I saw awhile back. It's an old joke I know, but sometimes I feel a lot closer to it than anyone else around me. Lord knows, I have a new way of looking at "plans." If I could make my own cartoon, I'll tell you the challenges would look a hell of a lot different than rocks, a ladder, a water hole and a thunderstorm. Those are cake walks, come to think of it. The message remains though. Drilled into my head.


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Wednesday, June 18, 2014

This and That

A lot been going on lately! For instance, Maddie is growing like a weed. 
And so is her hair.

Longer legs, longer face, def longer hair.

Avery also got through her EEG with flying colors...

We are still waiting for results but definitely got one episode recorded and
really interested to hear what is going on at night. She still wakes up a ton.

We celebrated Father's Day with family, food, presents and a little swimming too.

We had taken Maddie's water wings off just before this photo and about
10 seconds after this was taken she decided to take off into the pool by herself.
Way to give mommy and daddy a heart attack you crazy/brave nutball!

And out-takes:



Big sister has also returned (gladly) to school after a three week break, which leaves little sister home to play in the new giraffe pool with friends.



(thanks to Aunt Ali for pics)

AND go to swim lessons with her neighborhood bff, Jay. 
These munchkins are two peas in a pod! 

Ah, summer :)

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