Park City- June 2013- Allens

In June we went to Park City with Allens and had a blast. We started the festivities off with the Alpine Slide.

 Audrey had a blast seeing her cousins again. She's playing with Brynlee in this pic. The girls are outnumbered... so they have to stick together! 

Everyone was excited to see each other... even the adults. Sometimes it's hard to be more excited than the kids...they were really excited, but the adults were a close second.  :) Those kids just have way more energy. 

Jordan and Garrett going down the slide... Jordan said Garrett screamed the whole way down, and when they got to the bottom Garrett said," Let's do that again!!"

Me. I didn't go quite as fast as the boys... but fast enough.

The girls- I love having a partner in crime. I can totally tell she gets and itch for shopping when we havn't been in a while. j/k

Loves being with grandpa! (All the kids do!! He's a fun grandpa!)

Garrett and Ridge playing around. These two sure can get into some trouble together. They remind me of the stories between Jordan and his cousin Erick when they were younger... we could be in trouble. I'm happy they are good friends!!

...goofing around

Almost all the cousins in the old rail car.... they thought it was cool to sit in it.

Garrett was a little scared at how deep the pool was... 4 feet.    Ha Ha too funny.

Garrett had a blast at the pool. Jordan said it was cold... hence no mama in the pool/pics. He was freezing too. blue lips, and shivering...

This little girl was not cold at all... she's got some fat on that body. ;) 

Audrey also loved the pool! She had more fun with Grandpa Mike too!

I think she helped keep Grandpa Mike warm a little too.

 Everyone having a blast together. 

What a Blast! Love those eyes and smile!!

Just love these cute faces. Rare occasion to get smiles
from everyone at the same time.

Garrett's favorite part was the sauna. He called it the "warm room". He had to heat himself back up after freezing in the pool. This kid has no fat on him... my mom calls him the holocaust kid. 

We sure had a lot of fun with everyone! Thanks so much for all the fun memories and to Grandpa Nard and Grandma Beth for letting us stay at your condos!!!

The results... inconclusive at this point

So I know you all have been waiting to hear about our experience from this last week. The short and sweet version is... they think they are generalized seizures but 'they' (Fellowship lady/PA lady) don't really know. Our Neurologist is out of town in Peru for 2 weeks so we won't know the real verdict until he gets back and either calls us or schedules us for another appt to tell us the real findings. Sucks... but that's where we're at.

the 'jail'

To get more in depth as to what happened.... Here's the full version.
Sunday- came back from an amazing and fun trip to Island Park with Jordan's family! we had a blast!! (another post to come later) On our way home we stopped at my Grandma's to say Hello, and Audrey decided to have a seizure there. (I'm sure they wished we would have stayed away... sorry about the scare Grandma!) She was fine and we later went to another family event that evening where she was happy and loved seeing everyone.







Monday - We headed down and got Audrey checked in to the hospital, all hooked up with the EEG leads, and waited for something to happen the rest of the day. She was a happy, fun little girl and of course all the nurses loved her! She was very friendly and told everyone who came in, "Hello" and "bye bye" when they left. A model patient of course.

Tuesday- More hanging out and trying to find ways of keeping Audrey entertained... She ended up staying in her 'jail' of a crib for 98% of the time we were there. She learned how to pull herself to a standing position with the rails on the crib, and had a blast playing peek-a-boo with the metal square where the handles were. (just big enough to hide her face). We had a visit from 'Auntie Julie' who brought some much needed delicious food to me! as well as some company ;) Thank you Julie!!! Aunt Mardee stopped by with some 'goods' momma style! also greatly needed ;) (dr pepper all the way!)  Jordan stayed home to continue the 'lot' search and to also get something done at home. Thanks Honey!!

the cords to the left wrapped in green and red are from the EEG leads.

Wednesday- Pretty much the same thing... entertain Audrey, wait for some seizures. We did a lot of sleep deprivation today... trying to bring one on so we could go home. I was missing my own bed at this point. The day went great... the night was a little different.
She woke up at about 11:45pm and puked everywhere. She managed to contract the flu somehow and so it was enough, in pair with all the sleep deprivation we did that day to bring upon the seizures.

Happy girl on Wednesday before the showdown.

Thursday- She had about 9 seizures total this day (2:30 AM- 8:30 PM) that I could physically count. about 1 every 2-4 hrs. She also had many different kinds of seizures-
-Grand Mal: also known as tonic/clonic (these have been increasing in frequency)
-Absence: essencially staring spells that can last up to 20 sec. (been seeing more of these)
-Simple Partial with Secondary Generalized: Starts in one spot and then spreads to the rest of her body. (been seeing less of these)

She mainly slept this day.. and had seizures. just an idea... wake up, have seizure, go back to sleep and repeat cycle.. until 8:30 pm when we were finally able to get her some rescue meds to stop them. Grateful for the nurse shift change.... enough said. She finally was able to sleep in comfort and grateful for Jordan who took over for the night. I was exhausted and trying to keep my cool. Aunt Cyndee was a lifesaver by bringing me lunch .... which was divine... so that I wouldn't have to leave Audrey's bedside... which I didn't dare do with the staff on hand.


   Friday- She slept for most of the early morning, and then woke up about 9 am. Her poor little body had been through the ringer. I'm sure she felt awful and the side effects of the rescue meds were still very apparent. She hardly had any muscle strength, and was an onry bear. (can't blame her) She still wanted to be as active as the previous days but just didn't have any strength or coordination left. We finally got checked out by 1:30 p and were excited to be on our way home. (Finally! conclusion above)

Drunken baby today. such a sad little girl :( this is
as close to a smile that she got to for 2 days.

She slept a lot over the next couple of days and still had muscle weakness until Sunday Morning. She finally could sit up, crawl, and move without tipping over every time. She still has some flu effects...poor baby... which the Pediatrician said could last about 2 weeks-month. The flu is hard on babies. Of course Garrett contracted it.. Yea for us. I've done literally mountains of laundry and Clorox my little heart out. I feel so bad for these two kiddos... it's so much harder on them. I'm hoping Jordan and I don't get it next. I think we get a break for a little bit.... all those in favor say "I".  :)

So we are waiting for the final verdict which will be a couple weeks. However, in the meantime... we are currently looking for a second opinion and researching some other doctors. We'll keep you posted when we know more! Thanks so much for all the support, prayers, and kind words!!! You're support really means the world to us! How VERY GRATEFUL we are for our wonderful family and friends.


Also I have to give a BIG THANK YOU!! To our great moms who watched Garrett for us those long 5 days. It was a huge relief to know that he was in good hands! And of course he had the time of his life! He's been asking when he can sleep and his grandma's houses again..... but then changes his mind and says he wants to stay home with us. ;) my sweet boy. love him and missed him a lot that week, and so did Audrey!

**side note- Audrey now has her first tooth! Ahhh the teething stage.

The latest... and greatest

So sorry for not updating the blog. we have been busy having fun with family and friends this summer.... and the not so fun doctor stuff.
Audrey is doing awesome things! She is officially CRAWLING! wow how time flies. She is also determined to get what she wants.. although I'm not too surprised because she is a girl...and already using her jedi girl ways to get it! Boy are we in trouble. Her language is coming along too. She now can say: mama! (finally), papa, ah oh, baba, and nana ( think that one's suppose to be night night but not sure yet) she loves things that shake and of course the phones (real or fake). again a girl thing.

first rainstorm we played in this year...

and she loved it.

Love those eyelashes!!!

the grass MUST taste good because she eats it all the time.

Garrett is being himself. sweet, helpful, energetic, and LOVES when he can play with his cousins. He asks everyday if he can play with one of them. Of course the answer is usually no and he wants to know why. The excuse most days and not far from the truth is "they are helping their moms do stuff around the house like us" :) He's still my extra pair of eyes at home with Audrey. He's quick to spot a seizure and runs to tell me. Also lets me know that he has to call someone and let them know she's having one so they can come over and 'help' (play with him after she's done is the real motive I think). Smart kiddo. He also LOVES to play in the water.... his excuse is he needs to water all my plants, multiple times a day. I'm surprised they aren't dead yet.

We have been to Park City two weeks ago and had a blast with Jordan's family. We did the Alpine Slide, where Garrett screamed the who way down and then wanted to do it again. He also loved the ski jumpers at the Olympic Park. He's into doing flips and jumps now.

We also went down to Milford, Ut. where my grandma lives and had a family reunion. It was great to see all my family, it's been way too long. :) and we had tons of pinnacle tournaments. Cheating is required at that house. which makes for all the more fun! ;)

Jordan and I have been doing yard work and we also bought a house... which now we are looking into buying a lot and all the other fun things associated with that whole process. SO, I get to really spring clean my house and am starting to de-junk it all. I can't believe how much stuff you can collect in such little time! WOW. I hope we have room for it all in the new place. When we get things finalized... we'll let you know where we end up! :) what and adventure!!! (and a welcome distraction some days)

Now for the not so fun stuff. Audrey had been on new medication (phenobarbatol) for the last month. Her seizures have shortened but she is having more... Last weekend she had 5 from Thurs-Sun. it was crazy and in my opinion it was a combination of all the different kinds she's ever had. we were nuts! In our efforts to find out what is causing these... she had a spinal tap on Friday which 2 of the 5 have come back and they were normal. the other 3 we will have to wait about 2-4 weeks since they send them out. The reason for these were because we needed to rule out some Metabolic Disorders that can cause seizures. However, when talking to the DR. about it he's kind of leaning towards a physical abnormality that we just did catch in her MRI, or has gotten bigger or is the same density as brain matter... etc, because with the Metabolic disorders, she would for sure have some developmental delays by this age, which she doesn't.
Now, we get to move on to the next step, which is a long term EEG. This will most likely be for 2-3 days where we will stay at the hospital, and she will be monitored 24-7. She will also be on 1/2 her meds so that she will have a couple of seizure so they can determine if they are coming from a specific location or not. If it is from a specific location she could be a candidate for brain surgery. We'll be going in sometime the week of    July 8.



i'm so grateful that the doctors have started paying attention to what has been going on, and that we are able to move quickly in order to catch something, if there is something to catch early, and to finally find out what is behind these seizures and all our craziness these last couple of months. Only time will tell and I know that I'm suppose to be working on my 'patience' skill. I do know that I(we) have learned some valuable things these last months. here are just a couple:
        - to live in the moment: we do go by day to day because otherwise you just get too overwhelmed. we've been a little more 'go with the flow' because we have to be. It's not super easy to have a productive day planned and then at noon it changes into a 'get nothing done day' due to seizures. But we make the best of it.
         -not freaking out: this one is all mine. Jordan is always reminding me to keep my cool and not freak out about the unknown. I usually start with one what if and then spiral down to the 'abyss of doom' and I call it. I still think about the worse case scenario, but always remember that we're not there yet and to live in the moment.
          -to rely on the lord: We have been so blessed with so much in our lives. as I think over the last couple of months and the tender mercies that we have had happen. I'm so grateful the Lord has blessed us with the experiences we have had. Last week our A/C quit on us while away from home and after Audrey's procedure. One of the things that children with seizures have a hard time with is temperature changes, and especially the heat. We proceeded to the Walmart and tried to recharge it, but to no avail, it didn't fix it. As I sat in the Walmart to keep Audrey cool while Jordan tried to fix it, an experience from a friend came to mind. Her little girl prayed in the middle of the isle that they would be able to get popsicles that day at the store. I knew then that I needed to say my own prayer. As I prayed I knew and felt the spirit which conveyed to me that all would be well. As Jordan came back in, he shared the news that it wasn't going to work. Confused mentally, I still had that same feeling that we would be ok. we started driving home, with all the windows down, I still was trying to figure out why this happened now of all times. I soon put my doubts aside and decided I'd just try to make the best of it. A few minutes later Jordan rolled the windows up and tried the A/C one more time. to our relief, and amazement it started working, not the greatest, but just enough that we could be comfortable and Audrey would be ok. She slept almost the whole way home. We still had some other problems down the road but we made it home in time for the party and Audrey was ok, no seizures as a result of our predicaments. Prayers are answered, and the Lord does bless us when we need it most. I am so grateful and words can not express how much.

So in light of it all... we are all doing great and Audrey is still doing her thing. I will try to keep you updated as new information comes along. Thank you for all your prayers and concern for our little girl and family. We love you all.

mischief in those eyes.