Monday, August 11, 2008

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.


10 comments:

Brynn P. said...

I'm so happy to hear that Kaybri is doing better! Goodluck with the new meds. I hope it works out.
Your kids are getting so big and so cute!!! We miss you guys.

Tooele Brezoff said...

Bryan had to hold Natalie while they did the allergy testing and that was so hard for him, I tried to help by holding her arms, these little kids are so strong. Sounds like Kaybri is just as strong as Natalie, the question is?? does she bite?

I am happy to read that things are better, good luck with the new meds, we think of you guys often!

Jen said...

OH what an experience! That would be a hard to have to restrain her when all you want to do is to hold her and make her feel safe! I am really glad to hear that everything is looking good. I hope that everything goes well with the med switch!

Unknown said...

I'm so happy for you guys that she's doing so well! I hope the new meds will help without having the side effects. Good luck! She's a cutie.

echolsfamily said...

Does Kaybri bite you ask?? Well, of course she does :) Paxton has circle bite marks on his back from just a couple days ago... He keeps coming up to me saying, "Kaybee bit" while he holds his old wounds.

Bec said...

Those pictures are super fun! Is that Joni's new baby, or is she borrowing it for the shot? And although Kaybri had that seizure, it really sounds like her health is improving a TON- so I'm happy for that. I hope the meds work out well for her. If not, you can always go back to what she's on now, right? I miss you all. Tell your kiddos that James says, "hi!"

Bec said...

I meant Brittney not Joni. I'm dumb. :)

Melanie and Jarom said...

Cass - I hadn't heard about that traumatic experience with poor Kaybri! I bet it was just as much torture for you as it was for her! You guys are tough cookies! I hope this new med is the perfect one to control seizures and not decrease her skills. Cute pics with your Echols fam!

Amber H. said...

I can't believe you guys were at the 24th celebration too! We totally missed everyone because of that rain!

We have been so happy for you guys that she hasn't had so many seizures. I hope that new medication will do it's job and she will be free of the others soon. I can't even imagine how traumatizing that MRI must have been for her. It sounds like she had a ton of fight in her though, holy cow! I'm glad you got the info you needed though. We'll be crossing our fingers for you that she doesn't get that rash!

My family Begins said...

Poor Kaybri. She has been through so much. You guys should have called us while you were in town.