Want to know what we've been UP to?

Actually nothing very serious, but it sure seems like the last few weeks (or months) have flown by. It is just go, go, go all the time. A few weeks ago we celebrated the 24th. Both Lamar and Britni's family came down to visit, and we had a blast hanging out with lots of family. We went to the mountains, parade, bbq, and we even stayed for the fireworks....despite the never-ending rain.Paxton and Uncle Tristan are BUDS!

Cute cousin Lizzie with Kaybri and Justin


Pax, LeiLani and Tiley

Fun times on the tramp

Britni and Myli...they are so pretty

Some of the Echols cousins

The next week Kaybri had a seizure while visiting the cousins. It was only a little over a month since her last one, but apparently she had a good reason for it. She seemed a little warm when we first got to Cory and Dawn's, but I thought it was just because it's so dang hot outside. But no, she had spiked a fever, which sent her into a seizure. Luckily it wasn't too bad though and only lasted a few minutes. She ran a fever for 5 days and that was her only seizure, what a blessing! We're still not sure what she had, it never got passed on to the rest of us. Another blessing.

And then the last weekend we went out of town to Mesa for neurology appointments. Kaybri had a "one bang" MRI taken of her brain. This is a MRI that is supposed to only take 5-10 minutes, so they don't have to sedate them. They only needed a picture or 2 to make sure the bleed they found last time was clearing up, and since she's had a lot of CT scans lately, this would be a great alternative so she didn't have to be exposed to more radiation. However, it was an absolute nightmare trying to get it done. Poor Kaybri was traumatized. First they taped ear plugs over her ears, then made her a burrito in a blanket, then strapped her down on this narrow table that went up/down and in/out of a big doughnut looking thing, taped her head down between 2 board things, and then they had Justin lay down on top of her and hold her head straight. She screamed and screamed and screamed....for a good 30 minutes. And then she started coughing and they thought she was maybe choking, so we had to take her out, make sure she was ok, and then start all over again. They couldn't do the MRI until she calmed down and was still. She is pretty strong for such a skinny girl. She was wiggling down and got her legs and part of her arms out and she was kicking Justin, clawing his neck, and spitting at him. I guess after awhile she decided she was going to lose the fight and said "night night" and then there wasn't another peep or movement out of her. We met with her neurologist after the MRI and she said her brain looks good and is filling in the spaces of where the cyst was. Good news! We also talked a lot about medications, and I know it may sound crazy to switch meds now that she is semi-stable, but I think we're going to. Kaybri is doing better now, but there were a few months where she hardly ate at all and also was losing a lot of skills-mostly speech. Kaybri lost close to 3 lbs since her appt. in May and grew about a centimeter (now 28 lbs and 38 3/4 inches). We are going to very gradually add on a new med, and slowly ween her off of some of the other meds over the next few months, hopefully going down to just 1 med, instead of 3. The new medication, Lamictal, is supposed to be much safer, especially if you have to be on something for awhile. Some of the meds that Kaybri has been on can create other problems with kidneys, liver, etc. The main side effect of this new drug is that it can create a pretty nasty rash on some people, that's why we have to add it on so slowly. Anyway, wish us luck, hopefully we're doing the right thing and that it doesn't mess with her seizures.

Kaybri's MRI

Last Thursday (the 13th), Kaybri went to Primary Children's Hospital for another MRI and doctor appointments with her neurologist and neurosurgeon. Everything went really good. Her cyst has not grown since her last MRI in June, but the neurosurgeon still wants to do surgery on it. There are several reasons to do surgery: 1) the cyst is putting pressure on the brain and much larger than what it originally was, 2) because it is so taking up so much space you can't see part of the brain in the MRI, and this tissue that you can't see may be causing her to have seizures, 3) her seizures have become more frequent and none of the medications seem to be helping, and 4) this is the only abnormal thing that has shown up on any tests thus far. We are in total agreement, and the neurologist also supports this procedure now.

Her surgery is scheduled for October 8th. The neurosurgeon said he will cut a small circle of the bone out and then the cyst will pretty much be right underneath. He will make several cuts in the cyst, which will allow it to drain out and it will also prevent the cyst from filling up again. He said he won't have to mess with the brain, so that's good. Kaybri will be in the hospital for a few days, and then she should get to go home as long as everything is good. The surgery may not make her seizures go away, but hopefully it helps!