"The Lord himself goes before you and will be with you; he will never leave you nor forsake you.
   Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

Tuesday, February 26, 2013

Luella's Appointment

Wow! We had a LONG day on Monday. I got up at 5:30 - after a short night of sleep - for some reason Luella's pulse-ox decide to be picky and go off several times during the night. Thankfully all the alarms were false alarms. We got Luella up at 6:30 and got her dressed and headed out. Grandpa and Grandma Johnson were here to help the other kids get off to school. We were thankful for good roads, although it was a little foggy in places, we had pretty good driving conditions. Luella enjoyed having her breakfast in the van and then decided to stay awake the ENTIRE drive. We were literally 5 minutes from Gillette Children's when she started to close her eyes. She was re-energized when we got out and she could stretch her legs!

We checked in and Luella was weighed and measured. This girl is growing!! If you've seen her lately you know! She is already almost as tall as Ashlyn was at 4 1/2 yrs old and she is not even 3 1/2 yet! Dr. Wical was pleased that her height percentage has surpassed her weight percentage on the growth chart now. We talked with Dr. Wical for a LONG time. Luella's appointment was at 11:00 and 2 hours later we finally finished up! She is such a great doctor - always willing to take the extra time if needed. At 1:15 we headed down to the hospital cafeteria for lunch. Dr. Wical needed some time to write up all the check out papers / instructions and get some lab orders in place. After lunch we checked back with Dr. Wical, got the necessary paperwork and headed to lab. I warned the lab tech that Luella had poor veins and was a hard poke. He was very sure of himself and got the vein on the first attempt!!! Yay! Luella shed two little tears then watched as 6 tubes of blood were filled! She was so proud of the TWO princess stickers she got!

Luella with a "real princess"!
During the times we waited at Gillette for papers and lab orders Luella spotted a "real princess" visiting kids in the waiting room. She told me "just a minute" and ran as fast as she could to 2012 Miss South Central Minnesota, Tiffany Buszta! Tiffany even brought a special crown for Luella to put on and take a picture! Luella also got to meet the cutest, fluffiest white dog named Sasha (see pic below)! She looked like a little bear! Sasha is a samoyed and so cute!! Luella even got to give her a treat. Sasha's owner gave Luella a treat broken in two and told her to place a piece on each of Sasha's front paws. Sasha didn't touch the treats until Luella said "okay"! Sasha is an amazing dog. You can watch more about her here - http://www.youtube.com/watch?v=hvdfhakoUTQ.

As we were driving out of the Gillette parking ramp a little after 3:00, Luella finally took her nap! :-)

It was a good visit. We have a couple new things we are going to try with Luella if the GAPS diet doesn't give us better seizure control soon.

Luella will be having a neuropsychology evaluation done. Hopefully we can do this in Sioux Falls otherwise we'll be driving up to Gillette again for that. She'll be getting repeat evals done every 3-4 months also until we can tell better where her development is headed. We believe Luella is showing some signs now of something being not quite right developmentally. Dr. Wical could definitely see her lack of inhibition. Luella is VERY outgoing and will often hug (almost attack) total strangers. It's cute now to have a little 3 year old hug you but it may start to be uncomfortable to some as she gets older! Luella is definitely a smart little girl and knows many age-appropriate things, however she is having some problems in some areas. One thing is we find her to be very inattentive at times. It can be difficult to engage Luella in a back and forth conversation. I usually have to ask her things many times. One thing we hope to sort out with the neuro-psych eval is if she is having trouble processing the information. Luella has many other interesting characteristics - she always gallops or skips and loves to spin and make herself dizzy - which is even more dangerous when your balance is already a bit off! We don't know what these things mean, if anything. Dravet kids often show some characteristics of autism so we might be seeing that. We hope to figure out more as we get the eval done.

Oh, and the eating out went great! I packed all of Luella's own food and she was fine eating that while Jim and I ate something else. A couple of times she asked for something we had but when we said no she was right back to eating her food!

Thank you all for the prayers!

Luella with Sasha!

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