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.

Life keeps going...

Well a lot has happened and I've been busy and let's be honest... Wiped out! So here's the skinny on the latest here in our crazy world. 

Audrey went 15 days!! Yea! However, to make up for some progress she decided to throw me for a loop and have a double seizure on may 7. It was just Garrett and I, so we ended up calling 911 and the next door neighbors ( Bert and Liz) when the rescue meds worked for 30 seconds then she went right back into another. In total 18 minutes. It was rough. Not going to lie about that. She came out right before the paramedics pulled up, and right after Jordan got home (record time for him I might add, especially with all the construction). Luckily no ambulance ride for her. Apparently they're ok with us keeping her since this isn't our first 'ball game' with seizures and she  had stopped.  Long ones are no fun and recovery time is, well, longer. 4 days until she was her happy self. 

Things went great for a couple weeks as this 2 week pattern is holding... Fast forward to this week. 

We knew she was due for one... Instead she had 3 different kinds. 

Monday -we went to the dr (PA). We upped current medication levels, and were told we either will add a 3rd medication or do a whole other game plan. The actual dr is on vacation this week. Of course. But everyone needs vacation time. However he's the only one who can make the final call...

Tuesday- my wonderful mother-in-law came down to be with me in case she had a seizure and so I wouldn't be alone! It was a great day and nothing happened. Just how I prefer :)

Wednesday came and my mom took a turn to be with me all day. So, she pulled out a new seizure... Still not sure what type... Either complex partial or atypical absence. Which lasted 2-3 minutes. She turned a little blue, mainly on her lips, but quickly turned pink when I picked her up. 

We waited for more that day but none, and Garrett and I played soccer to top off what looked to be  like an ok and relatively calm seizure day. 

Thursday- so thinking maybe the 2 week time clock had been reset... She pulled a typical absence seizure this morning which only lasted 10-15 seconds, and then resumed play like normal. 

After her morning nap we headed outside  to enjoy some weather and she decided to have her normal type of seizure (simple partial with secondary generalized) which lasted about 4 1/2 minutes before coming out of it herself.(Yea we like that!). So I called my awesome nurse cousin, who rushed to our aide! (Yea! We love her!!) She arrived just as Audrey came out of it, and so we had some great moral/helping support for the postictal phase and helping with Garrett while I'm on the phone with more doctors trying to figure out what to do now....

We still don't know what we can do, other than help her during these episodes and make sure she stops. 

Some of our seizure videos are comical as I try to stay calm while Garrett and I tag team the 'rescue efforts'. :) my favorite that I will try to post later was from today. Here's the line:

Me- "now Garrett, I need you to hold this video and make sure you can see Audrey while I try to help her a little bit"

Garrett- "ok..... Audrey's having a seizure TODAY?!"

Me- "yes Garrett"

Garrett- " it's ok baby...... Mom I need to call Bert and Liz  (next door neighbors) and tell them to come down cause Audrey's having a seizure." 

Such a cute boy! He tries to help in any way he can think of. 

I guess you could call today a small victory because technically she went 16 days in between regular seizures. But the increase in types is a little concerning to me. More dr calls and hopefully some answers will come to light soon. Until then, we'll just keep doing our thing. 

Just a side note-

I love being a mom, and hate being an adult. However, I believe they are mutually exclusive. :) so we will march through the bad in order to enjoy the good and do what we should as parents to help our children in every way. Even though it might not be the most fun and downright scary at times.

Some of the good these past couple of weeks.

First driving experience and loving it- we're going to be in trouble ;)

Just being her funny,happy self. Love it!!

Progress and milestones

Audrey has been doing pretty good these past 2 weeks, even in spite of her 2 ear infections that just wouldn't go away. So we met with the ENT specialist this past tuesday and decided to get 'tubes in her ears'.  While visiting the specialist she confirmed (what I initially thought) was another ear infection (#4) in the past 7 weeks. I have to say that I think I'm finally beginning to understand the signs Audrey gives me... at least for ear infections.
Thursday we had surgery for the tubes and she has been HAPPY ever since. It reminds me a little of my sweet girl before all the seizures happened. I've been a little curious to see if her seizures stay on course and we have another in the next couple of days (by monday to be specific) or if we finally make it over the 2 week hurdle! 3 medicines (2 anti-seizure, 1 antibiotic) and ear drops are a bit time consuming (morning and night) but to see her really happy and progressing developmentally is worth the extra time.

In this past month she has really turned the corner. I was a little worried at her 6 month well-baby check up because she wasn't really even sitting up on her own (like 3 seconds). Now she can sit up and more!
Here's a list I thought of last night:
-new word (la la) still no ma ma but maybe the next one!
-blowing raspberries (pretty much spitting, which garrett takes as a 'green light' for him to spit too)
-rolls over both ways/ and rolls to get objects
-feeds herself without spilling too much/ and drops food over the side of highchair for reaction
-some cause/effect development
-loves peek-a-boo and anticipates the 'boo' part with a smile (i love it)
-sits unsupported
-can rock on hands and knees - she'll be crawling in no time... eekkk!
-can pivot on stomach
*- new today- pushes herself backwards on wood floor
-can wave bye-bye
-can follow simple directions (shake the rattle when told)
-gives clues to activities she wants to do
-starting to put herself to sleep! -doesn't like to be swaddled anymore.

These may seem like small things but we celebrate anything we can around here. It's really fun to see her progress and 'get bigger'.
Garrett is still my biggest helper! he can even collect all the bottles and put the tops in the bottle basket to be washed. my favorite sayings this past week were:

"mom look! I got a 'oose egg' on my head. " (goose egg)

"mom, here's my plan for the day. we're gonna go to the dr's, then get your medicine, then I got to go on my mission.... to france" - all in a day's work dude! :) ha ha

Something cool... at least I thought it was. probably due to the fact that I play with superheros all day with garrett... batman and spiderman were in Logan today hanging out! ha ha Garrett asked what they were doing here. :) He does want to be Ironman when he grows up. :)

Made it through... The week

**4/19
So we made it through to another week. Whew.

Audrey did good for the rest of the week. We found out wed night she had an ear infection, which contributed to sleepless nights and days, which caused stress for her body, which all helped the breakthrough in seizures. She's on antibiotics, and seems to be getting over the sickness that her and Garrett both came down with.
Now that we are over that hurdle... We can learn from it and do better next time and adjust our 'family protocols'... As I like to call them :)
We are now going to quarantine ourselves for the next couple of months to see if we can keep the frequency of the seizures down. It seems as though the seizures increase when Audrey does get sick. Also if Garrett gets sick, more than likely Audrey will follow in a couple days, like this week.
** 4/28
Had another seizure last Monday night. Currently we're down a week with one to go. The ear infection that she developed from 2 weeks ago never went away with antibiotics so... We are on round 3 and we are exploring putting tubes in her ears. She's had 3 ear infections in 6 weeks.. And the dr said that they like to aim for 4 in 6 months before they recommend tubes. He assured me that he would strongly recommend Audrey for them because ether are also a trigger for her seizures. We are still trying to stay away from sickness so... it would be helpful if you know you are sick and plan on hanging around us to let us know... We can then make an informed decision to stay home or join the party.
As a parent it is hard to deny your kids (and ourselves) fun outings with friends and family, but until we can get a handle on things, this is the only thing we can think of to do.
Recently I have talked to other moms who have gone through similar experiences one of them hit it right on the head.... " this is a solitary journey". We have been so blessed to have friends and family by our side but there is still this feeling as parents that no one really gets what you're going through unless you've done it yourself. Isn't that how all trials and life experiences are. It's still such a comfort that we have the gospel in our lives and to know that Christ himself had a "solitary journey" and he knows exactly how we feel. What a sense of peace that brings to me. However still being human , with many faults... Some days that solitary feeling is more overwhelming.

On a happier and more exciting note...
CONGRATULATIONS TO JORDAN!!!
He is officially done with getting his MBA!!! Well done Jordan!! I am so proud of you and all your amazing abilities to complete school while working full time and deal with us crazy people back at home in any spare time you had left! We love you and so proud of you!!! (Also to be done :) )

Just a little celebrating after...

Silver linings and tender mercies

Well, unfortunately I was right. It's already been a tough week. My poor baby had another seizure tonight. How frustrating it is as a parent that I don't know how to help Audrey nor can I stop these from coming on. I feel so helpless in a situation as this where I believe she is teething, something I can't prevent (like a sickness) and her little body just can't take the stress. However in spite of all this, I can't stop and think about all the bad without recognizing the good in each situation and feel so blessed.
I know we are put through trials to learn here on earth, and the Lord helps us through each day in anyway we allow him to. Here are just a few tender mercies we had tonight within the events that transpired.
When I felt like I had had enough on my own, because Audrey didn't feel good and had been screaming for an hour, I was able to call my mom for help. She came over to help with the kids. Even just to rock Audrey for a few minutes helped immensely. she then took Garrett to go get dinner and run an errand. A much needed break while Audrey slept. She was then back with few minutes to spare, when Audrey woke up and started into her seizure. Where we loaded up and headed for the hospital. (new instructions will hopefully prevent any more speeding trips to the ER) Audrey was able to stop on her own after 6.5 min. Yea! Always a good thing!! We just happened to be at the island market at that time where we decided to head to my parent's church house where my dad was at meetings. We pulled him out and grabbed a fellow priesthood member who came to my parents house and gave Audrey a blessing. She was able to clam down, take her meds for the night and sleep. Being the sweet girl she is, when she woke up getting ready for bed, she gave us her big happy smile, which always puts my heart at ease.
To me this is a smooth chain of events where I know the Lord was watching over us. I feel blessed and hope that the doctors will know the next steps in order to help Audrey.
So grateful for my husband who does it all.... Work, school, and family. We both can't wait for graduation day! :)
Thanks to both of our great parents who help out whenever we need it and whenever we ask! I can't imagine doing all of this without family close by.

One week down... Yea!

So we've hit 8 days seizure free. Let the count-up begin! We have yet to hit a full month w/o seizures. I'm not shooting for the moon but, a month without would be nice. And of course the warm weather has helped all of us be in a better mood. :)
She seems to be doing ok still on the meds, but I have started to see some side effects- or what I think are...
•Shaking/ tremors- this can definatly make me do a double take some days. She'll start shaking like when you try to hold your own hand out and make it be still. Not too bad but keeps me on high alert some days when it's bad enough. (usually just certain times of the day)
• excitability- this one is trickier... She seems to be happy all the time which is part of her personality but, she also seems to get in more of a hyper state, rather than just a pleasant nature. She has also found her voice and is practicing the loud volume... Pair that with being excited all the time... I'm thinking about getting a box of ear plugs next time I go out.... Even more so when Garrett chimes in and they feed off each other. Wow. The other part of this is I think it's hard for her to wind down for naps and bedtime. I can tell when she is truly exhausted because she will just lay down turn her head to the side and go right to sleep. On the flip side, rocking for an hour... We'll see how this plays out.

Well we did have a good Easter and we all got spoiled :) clothes mainly. But Garrett did get some Transformers: Rescue Bots. It's his favorite show these days. Of course all boys like robots who are cool cars. We had to dye Easter eggs the colors of the 4 Bots, then draw eyes and their signature piece ( like rotors for the helicopter). At least we know he likes them :)
Jordan only has a month left of school before he's graduated!!! Yea! I think everyone is looking forward to no homework nights.
Also I signed Garrett up for co-ed spring soccer. He's excited and I think it will be awesome to let him get all his energy out some days. Jordan and I have this bet that he'll be so excited that there are other kids his age, he will just try and talk to them the whole time :) ha ha. We'll see...