Here's to 2014!

Love this happy, smiley face

It's new year's eve and everyone's to bed but me, of course. Somehow I enjoy these times of quiet to myself. So I get on the computer to catch up on all the blogs I read. It always puts life into a little perspective.  I love that I can come out after reading everyone's blog and feeling like we all have our own trials and experiences to go through... good and bad. In the end I am always glad that I have the trials I have because I could never handle anyone else's. Christ's plan is taylor made for us individually. What

a comforting thought... at least to me.

I always love the beginning of new years. It's a fresh start, starting point for new goals, and most of all HOPE. A hope that this year can have more fun times ahead and progress to be made... no matter how small.
Sorry I get sappy and emotional late at night. Audrey's 2 week seizure deadline is in the next couple of days and all I can do is hope and pray she won't have one... so that probably doesn't help either. :)

Moving on:
Christmas was great!  Garrett got just about everything he asked for (4 transformers: Rescue Bots) and was so excited! his cousin K and 'Santa' are the gift giving heros this year! My favorite part is his 'Ironman' shoes Jordan and I gave him... (side note: he picked them out 5 days before and had to wait until Christmas day) he now will not wear them outside if there's snow or if they will get dirty... "I have to save them for summer". ha ha what a cute kiddo.

Audrey loved ripping the paper open and seeing what was inside. Sometimes not too interested afterwards what was in there, but the transformation itself. Most favorite part for her was and IS the chocolate. She's definitely a chocoholic. She also got a purse and loves to carry it around. Audrey also loves to get compliments on her cute clothes... she walked around church and was showing everyone her 'cute dress'... in her own babble language. it's so neat to watch her grow up... she's definitely taught me to live in the moment this past year.

Jordan got some drills and pants. they were both needed. ha ha  The house is coming along but still not finished. Maybe by March?? June?? we'll see how things go...
My Christmas was wonderful and I got all I wanted and More! It was a great end to a year full of trials. Full with both families and best part... no seizures in the craziness!
Blessings to your families and wishing you a great new year!!!

Best (only) family picture of the year

we love to laugh...

Back to 0

Audrey update- the countdown is back to Zero. :( sad day. I think I knew this day was going to come... Just not totally prepared for it. She had a 2.5/3 min seizure sunday (12/8) afternoon. As always, glad it was on a day when Jordan was home. And the dr's in ohio told us that this would probably happen. The only thing to watch is if she starts back in her pattern... so we're on high alert for the next 2-3 weeks.  To be honest it's been nice to not have these happen at all. I lost count there so I tallied it up and she made it 121 days- 4 months. That's the longest she's even been without a seizure and second to before she had her first one at 4.5 months old. 

It's interesting to me how after such a long time you can remember what to do in that situation- at least Jordan can. (he's always been the one on top of recording and such).

Since then she has been back to her old self and still is progressing an adding words to her vocabulary. 

Genetic testing will be a slow process but I'm hopeful we'll get an answer by July. We're trying to qualify for a study in Spain , but will take a few months to qualify and then to get results. W/o the study we are looking at a $8900 test. Ouch! So here's hoping we get accepted. Keep you posted! 

And we hope everyone has a Merry Christmas!!!! 

Ward party

Funny face reading time. Audrey was trying to figure it out :)

Cleveland

This week we headed back to Cleveland, Ohio to meet with a set of doctors at the Cleveland clinic. It has been a good experience and we got the second opinion we felt we needed. Now to get down to business... Here's their verdict.

1- Audrey has idiopathic generalized/focal epilepsy. Below is a link  that explains both pretty straight forward.

http://www.m.webmd.com/a-to-z-guides/types-epilepsy?page=2

She also has prolonged seizures-status epilepticus. 

2- We didn't take her off of her medication (after much debate within the drs and ourselves) they felt like it would be to much of a risk that Audrey could return to her seizure routine of every two weeks and also a greater chance of having to use another medication. Short version- "if its not broke- don't fix it."

Yea for Audrey! We are officially at 3 1/2 months without a big seizure! (We think she had one 2 weeks ago when she was sick and teething- but we could be wrong...) so we're still counting!! Small stuff here.

3- They agreed with Dr f from primary's that we should proceed with a specific genetic test to see if she has a gene mutation (scn1a or 'Dravet syndrome') there are many variations/syndromes that go along with this gene... It will just help us learn whether or not her seizures are a result of a genetic disorder or not. If not, we can meet with the geneticist to see what other tests we need to run. (Geneticist is about a year out)

4- There's still a small chance she could grow out of it, but it's more like 5-10%. Just depends on genetic tests and how her brain matures.

5- We are to have regular visits with dr f every 6 months and to get medication levels checked as well. Repeat MRI when she's 2-2 1/2 when it's more mature (more distinct black and white vs gray fuzz)

6- Good things- she's still developing at a normal pace, is curious, is learning new things, great memory, and interactive. She is a social butterfly! 

Funny part- everyone swooned over her but she was mistaken for a boy about 50% of the time... Despite being in girl clothes with coral socks... Really people?!?! Oh well. 

So basically we are on the right track and we will continue to avoid triggers, be vigilant with medication, and enjoy being seizure free! 

It has been a great experience to come to Cleveland, meet some great doctors and see how another hospital runs, and how some things don't change between different hospitals. Overall, it was a successful trip. We've had a great experience spending some uninterrupted quality time with Audrey... She has learned so much while we've been here. The following are just a few-

- LOVES to color and is super coordinated! 

- total girl :) she loves being told she's pretty! Ha ha and she loves to carry a purse ( aka the block bucket)

- has learned tons of new words, including some colors, and what the rooster says! Super funny! Ill take a video and post. 

- loves to be naughty- saying 'no' only initiates a game for her. Apparently "not" is the word to get my point across that I'm serious. Then she repeats it back several times. :) she's too fun. 

- Can make anyone's day. So friendly and says hello/goodbye, and blows kisses to just about everyone! 

The bubble-top crib. She loved to play knock,knock with it. 

So excited to FINALLY leave! That smile says it all.

This was a cool tree projection they had going. It spins and changes colors. Mesmerized girls. :) 

Headed out....

Progress

It's the middle of October.... Just put up the 5 Halloween decorations I love the most and can take down the fastest when we have our next house showing... Not sure what I'm going to do about Christmas... I have 5 boxes to choose from! We'll see.... 

Audrey update:

No seizures for over 2 months!!!  Yay!!! This has been awesome. I've never been happier with a normal child, nor did I ever wish for one until now :) it's amazing how fast your perspective can change.

We're headed to Cleveland next month! Finally received pre-authorization from the insurance to go ... Still waiting for pre-auth on genetic test from primary's. the Cleveland dr wants to do a PET scan, and we will also be doing another video EEG (3-5 days) :( this inevitably  means that our running seizure free count will come to a close and start at 0. A necessary evil in order to find out more clues to the puzzle I guess, but I still feel bad about it. Bonus- we've heard WAY better things about how it will go down this time. And I'm sooo glad! 

However, these last 2 months have been so nice to finally feel like we're on top of something (cause its not the house) ha ha.  Audrey has been doing great things!!! She has added words to her vocab, has a new found interest in brushing her teeth (whenever the bathroom door is open, literally), and has now taken her first unassisted steps. She will walk between jordan and I and use the toy car to walk behind unassisted. ( its garretts when he learned to walk!) Walking unassisted everywhere is around the corner!!!!! Maybe by Christmas?!?!.... Just thought that through- my poor tree and decorations. Ahh having a toddler. Audrey loves to be apart of everything, including whatever I eat, phone calls, and shopping time. She loves to look at clothes! She loves to go places and outside for anything! Winter will be hard. 

  Garrett is still doing great as usual. He still loves preschool. His teacher said he was the peacemaker last week :) at least he's that somewhere! Ha ha  no..... He does a little of that here too :) it's just  nice to hear it from someone else. He's going to be Captain America for Halloween... And the whole month of October! Seriously every day he puts it on- WAY into the super heroes right now. He's also perfecting his speaking abilities.. But until he gets them down I get some humor in the meantime... Here are a few as of late:

"Mom-we got to plug it up the light"- to light up the glow in the dark bouncy ball

"Frank and Einstein"- Frankenstein 

I've had some good laughs about these. 

House stuff is coming along, but slow... Apparently that's what happens when you do it yourself and still have a job, family, and no time. :)  we did get the kitchen granite in! Yay! Turned out how I imagined!!! A relief really... I hate when things don't turn out like how I envision them. (Also the faucet which isn't pictured. )

We also did some outlet wiring... Until we ran out of outlets. Almost had that crossed off the list. 

Jordan has been SUPER busy at work! Im ready for that to slow down, so we can see him for more that and hour or 2 a day. we all miss him, especially Audrey, who wont let him out of her sight for a min. 

I almost have Audrey's Halloween costume done too! She's a cat, and all I need to do is the ears! Pics to come later.  We're celebrating the small stuff!!! 

New Record!!

So just as a prelude... I wrote this post once before on my phone last night, and then the app crashed! ahh!! so hoping I don't forget everything...

We have some BIG news at our house!!! Audrey has made it almost a whole month since her last seizure!!! (this is huge for us and especially me. technically we have 2 more days) However, we are super excited that things have been going good around here. Audrey has been doing much better developmentally as well. I can't believe how much she has learned in the last couple of weeks. Even our family and friends have commented on how good she looks and is progressing.
Here are some of my favorites:
- favorite song: 'Ensy Weensy Spider' with accompanying hand signs... ok just the spider, wash it out, and sun part. So cute!! She even asks for it now.
- Loves trying new foods, especailly what everyone else is eating... she loves PB&J sandwiches... she even nodded yes when I asked if it was good. Love it!!
- She can now crawl faster than garrett... this is what he said... I don't think he likes her being able to catch up to him.
-Audrey is now starting to be rather fearless... She's walking along furniture, willing to let go of your hand while helping her walk, and the last couple of days has taken a step between couches by herself. Walking is not far off!
-She has also added to her vocabulary. She can YELL MAMA. and in the right tone I just can't ignore. usually to give me something like her empty bottle or that she wants a treat. She's also learned 2 baby signs... 'more' and 'please'. Probably the most important 2.

Medical stuff-
-I just heard from Cleveland Clinic today and we are good to go out there. I'll know next week sometime when exactly. Wahoo!!

we found these statues at Primary's during our latest visit... I love
Audrey's face in this one! She's a girl who likes big muscles! ha ha

-We took her off of triliptal, which she's been on since March. And since then, no seizures... so we think the medicine was causing her to have more... hindsight is always 20/20.

- We also just had a visit with her current Neuo DR. and he was excited in her progress and no seizure timeline as well. He said 2 months will be a lot better and perhaps she could still grow out of this... but I'm not putting all my eggs in that basket! and he said that 6 months he would try to cut her medications down to 1...... but we'll cross that bridge if/when we get there.
-Genetic testing for the specific "disorder" is still in the works with insurance. You would think that if the Dr. ordered it... that would constitute it as "necessary". oh well, the formalities. We decided to go ahead with it because is can take up to 3 months to get the results back.


Now for more crazy stuff-
The house is coming along fast! YEA! The foundation is done, with walls poured yesterday! Wahoo! we should be able to make our Sept 15 deadline of moving the house! Jordan is a great general contractor! I still can't believe how many decisions there are yet to be made! wow. hopefully we can get things done as fast for the remainder of the house...
As for our current house... it has yet to be put on the market. It's so hard while you're still living in it and with kiddos who get out their million and 1 toys everyday!! so much to do....

Helping dig the hole!

Garrett started preschool yesterday! He was so excited, I bet he asked me 15 times that morning if it was time to go yet. He had a blast! Of course we found a Spider-man backpack so he could go. Thank you Walmart! it was a hit! we had to take it with us everywhere yesterday. he's too funny!

THANK YOU so much to everyone who has kept our family and especially Audrey in their prayers. Also anyone who has helped us in any way these past 6 months. We feel so blessed! Thank you, thank you!
We are hopeful that the next couple of weeks will go good... keep you posted.

I just love these two kiddos. We get to mess around and be crazy
everyday!

Busy. busy.

So we have been crazy busy trying to get house stuff put together and house stuff pack up. I'm really looking forward to not moving again for at least 10 years or more. it's not fun. still don't have our house up for sale. and still working on the new house. Who knew that there were so many steps to building! wow.
This last week my mom and I went to pick out granite for the counter tops. WOW! it was a girl's dream to have that many choices. Literally hundreds. and several different cuts within the same color! it was SO COOL!!! I did manage to pick one out.. we'll see if my choice is in line with the budget... ;) haha probably not.

just love these eyes

Audrey update-
So I did finally hear back from the doctor. Her EEG showed seizure activity starting all over her brain... which isn't what I was hoping to hear... basically because we don't have the option of just going in and cutting out the problem part and have a shot at getting rid of the seizures in one swoop. So we will be on medication for a long time, hopefully finding the right combo/ones to help decrease her activity and best case scenario, stopping them altogether. So we made medication changes which I think have helped a little bit, (we are currently on day 13) but I'm still holding out for the next couple of days. Plus she's sick again.. so that cuts down our odds of pushing past day 14. :(
He did mention a specific genetic disorder he was leaning towards... but for the sake of not worrying and trying not to jump to conclusions.. I'm not saying what it is. :) sorry. There is a specific gene test that says if you're positive or not... so we are going to see if the DR in Ohio feels the same, and take that test before we tell everyone... (it's not a good one to have.) so until then.... and more info from Ohio DR...... surgery is out and we are still waiting for an answer as to what she has.
Speaking of going to Ohio.. no date has been set yet... we're still waiting on getting medical records. FYI for anyone who is wanting to get theirs... just go directly to the records department and wait until you have everything you need. :) otherwise it will be 14-?? days for them to print and mail them to you. just some friendly advice.
On some more happy news...
Audrey has been progressing more! YAY!
she can now say: grandma, grandpa, book, and make car noises.
 bend over and pick things up and then stand again.
starting to walk along the couch, and LOVES to hold onto you're fingers and walk.
Does this little bounce/hop on her bum. too funny. she almost bounces too much and falls forward onto her face.
and she LOVES the water. we went swimming last week and she splashed so much that we thought she was drowning... all the time having a smile on her face.
LOVES to read books. she will let you read every book 5 times and then more.
She will now follow simple commands- come here , go get a book, and no- but not very good.. she's stubborn.
She also loves to tease people. a little boy at church was handing her the ball and would then pull it away at the last second. She picked up on that, and when she finally received the ball, proceeded to do it back to the little boy. ha ha it was too funny!

Superman cape!

Garrett is also growing up too fast...
I told him in the car the other day that Audrey might have a seizure and that he would have to help grandma out if she did... This was the conversation....
G-"Did you bring the diaper bag?"   Me- "yes"
G- " Did you get a burp rag?"   Me- "yes"
G- "Did you pack a sucker? (bulb syringe)  Me- "Yes"
G- " Did you pack those one things that you do? (emergency meds)  Me-"Yes"
G- "Those ones that you stick up her bum?"  Me trying not to laugh out loud- " Yes garrett"  hahahaha  it was too funny! But what a responsible 3 year old. I still can't believe he knows the routine and of course feels like he could take care of Audrey if she really did have a seizure. I am truly amazed. love my little guy!

ahhh sibling rivalry... they do try to share.

an evening bike ride.

g man learned that if you stick something in the canal... you can follow it and fish it out.
just a childhood staple, right?

Moving forward and standing still

Audrey update-

I know you all are wondering what the DR has said.. We are still wondering ourselves. No one has returned our phone calls and I'm not expecting much in the near future from this particular DR. 

We have been able to see the report online... And all we could decipher was that her seizures are lasting longer in her brain than what we see physically.  So not super good news but we did want to confirm that with the DR. Oh well...

And so the wait continues.... However we have officially decided and are working on heading out to Ohio to get a second opinion and, for a lack of a nicer way of saying it, better care/plan. So I'm on the phone a lot and trying to get records and such to the right people. We are hopeful that this is the right direction and step we need to take for Audrey and I'm excited to figure out some answers!

 It has been 6 months since Audrey had her first seizure and I'm amazed not only with how things have changed an progressed, but how we have also changed and progressed. It's been rough but good lessons learned. It never turns out how you think.... 

We are still in the teething stage.audrey has her two bottom teeth finally and loves French fries and Popsicles. She knows what a horse, dog, cow and owl say. Her favorite is the horse, with the accompanied horse ride (usually from dad). She loves to sit in the car shopping carts. She's making car noises while turning the wheel as fast as she can. We are in trouble.... Her favorite word right now is "ah ooooh" as she drops things over the side of her high chair, crib, carseat, etc. it really is her favorite game too- when we play along.

Garrett is getting excited about the new house and his "secret step". The bathroom has a pull out step for him. :) he's such a observant little guy. We always pass the cemetery in Hyde park when driving out to the lot.... And he always says we're close to grandma Jan's house! (Who lives by a cemetery 5 hrs away) ha ha. But he can tell where we are headed by the landmarks we pass. He's an incredibly smart kiddo. He's excited for preschool!!  Which he thinks starts tomorrow (for like the past week). "I HAVE to go to my school today mom! We're gonna be late." Funny boy. 

Jordan and I are still doing house stuff and we finally got a lot! It's in smithfield ut. So we are trying to get the process going as fast as we can. There have already been many decisions and blessings in the process. We truly believe this is where we are meant to be at this time. 

However, can't believe how much stuff we have. New tradition in the new place... Clean out once a year! Also Jordan has given the compound a new name- El gallo. For those of you who don't know Spanish.... That means rooster. (The lot has a rooster tale shape to it.) Jordan is so funny/silly sometimes! I love it!  

So onward with life and we'll keep posting as we find stuff out!! Thanks for all the kind words and well wishes!! 

Garret and Audrey playing in the new cupboards- the time out room. Too much fun!

Garrett's "secret step"

Fun at the park with grandma Linda and cousins!

Grasshopper/ boxelder bug hunting = death by water 

His superhero powers are contained in my  bottle funnel. He has an imagination.

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.