Our Trip to Utah and the latest on Tyler

We left for Utah on January 2nd. Well, we attempted to leave anyway. Vivienne took the bus over from El Paso to help me drive up and when we got in the car to leave, it wouldn't start. Finally got it to jump start and took it to Walmart to get a new battery, but when we got there, they said that the battery was fine and they suspected the alternator. So we then drove over to Auto Zone and had it checked and it was indeed a bad alternator. Lucky for us, one of the employees had a friend who does mechanic work on the side and he came to our rescue and came to Auto Zone and fixed my van in the parking lot, on a Sunday for only $40. We only made it to Albuquerque the first night because of the late start to our day. I woke up Monday morning feeling really sick, so Viv did the majority of the driving from Albuquerque to Sandy. We arrived safe and sound, despite the snow packed roads between Cortez and Monticello. Oh yeah, and we almost hit a deer in Spanish Fork Canyon. Lucky for us (and the deer) he jumped out of the way just in time.

I woke up Tuesday morning really, really sick and running a high temp (105). I got up and went to a walk-in clinic and my rapid strep came back positive. They gave me steroids and antibiotics and I was feeling much, much better 24 hours later.

Wednesday we went to the Burn Clinic and I all ready posted all the details about that visit (see next post down.) I was so impressed with the care he got at the U vs the care he was getting in Lubbock. All of the BTICU docs are really great and so willing to spend extra time with you and make sure that everything is taken care of.

Since Tyler's graft surgery was cancelled, I decided to see if I could get Cierra into the neuro while we were in town. They had a cancellation the same day that I called, so we went and saw the neuro's PA (Shari.) She is super concerned that Cierra is still having so many seizures and she thinks that Cierra doesn't seem like herself (and she doesn't a lot of the time.) When Cierra had her MRI done 2.5 years ago, they found a cyst in her brain and at the time, they didn't think it had anything to do with her seizures. But now that she has failed two medications and is still having daily seizures, they started reviewing everything. The neuro and the PA both said that they see a thickening in her brain in the area around the cyst (this is all in her left temporal lobe.) Not really a good thing. They want to do a surgical work-up on her when we are back in town and that will include staying inpatient for 7 days and having a continuous EEG done and have another MRI done with higher clarity and having some other tests done. If they can pin point an area where the seizures are orginating from, she might be a candidate for having that portion of her brain removed or having a VNS implanted. Scary stuff. If her seizures get better or stay the same, we can wait to do this until school gets out, but if her seizures get worse or change, they want us back up to Utah ASAP so they can monitor her and see if they can figure out what's going on. Not exactly the news I was expecting to hear on a routine med check. It made the trip a little more stressful. It sure takes a lot out of me watching these kids struggle. I wish I could just take it all for them.

We spent the rest of the trip going to PT and Burn Clinic appointments with Tyler and doing some shopping and spending lots of time with family and friends. We picked up his glove last Wednesday and also saw another BTICU surgeon. This surgeon said that he wants to see Tyler back in about 6 weeks, so we might be flying up to Utah at the beginning of March. He seems more concerned about Ty's hand then the PT's do, so it will be interesting to see how it does. The PT thinks that Tyler might only need to wear the glove for 4-5 months and then be done with everything, but the surgeon said that it is "highly probable" that Tyler will need surgery to remove scar tissue and have grafting done in the very near future and that he will need to stay in the glove for closer to 18 months. He also said that he will most likely need surgery more than once, like the other surgeon told us. Only time will tell, but I am sure hoping and praying that his little hand will keep healing itself and that he will avoid surgery.

Tyler's splint. He has to wear this at naptime and nighttime. He pretty much hates it.

Eating a sucker that he got from one of the nurses. Once he discovered that they had a whole basket full of them, we had to walk out to the front desk over and over again so that he could get another one, take the wrapper off, take one lick, and then throw it in the garbage.

I have been trying to get a good picture of Tyler's glove since we got it, but well, he moves a lot, so this is the best pic I have of it. It's actually kind of cute. You get to choose all the colors and a design for it. We have two more ordered and headed our way shortly.

We stayed at Nana and Bubba's house, but we also spent a lot of time at Grandma's house.
Tyler getting aquainted with the new kitty at Grandma's house, Hiccup.

Kenz and Grandma




We went to Chuck E Cheese.
Ty eating some pizza and using both hands :)

Caden and Tanner

Kenz and Cierra trying to scare away all the little kids that were there that day.


Taking a bath in Nana's sink :)
I ended up having to drive myself and the kids back to Carlsbad alone. It was a long, long drive and I am still exhausted from it. We made it to Gallup the first night and stayed at a hotel. The kids were loopy and tired by the time we got there. It took us an extra hour to get there because the GPS sent us in the wrong direction. My kids are such good travelers, so even though it was a rough 900 miles home, overall, it went pretty well. My biggest complaint? The undetected and scentless diarhhea that Tyler kept having. He had one sore bottom by the time we made it home.