Just a little catch up

So it's been 6 months since we finally moved into our new house. Wow that 6 months flew, yet went slow too. We have accomplished so much! I'm so proud of all the work we have done, and so grateful for all the help we have had! Our families are amazing! 

There is so much still to do but I at least feel like we have made it to the top of the hill. Hiking downhill is a little easier, but it still takes effort :) there's still plenty to do. I'm slowly starting to organize all the stuff (decorations, food storage, etc). We are super close to finishing the outside of the house and it will be complete!!! We finished putting up the rock this week and it made all the difference! It looks like any other house now!!! :) and the majority of what we have left is some "little" (big) things left. Cabinets, inside of the garage, and the yard. Ok so those are all huge things, but for some reason I'm more relaxed about getting those done. I'm sure the stress will come back :) in the meantime I'm going to just enjoy what we have accomplished!

The kids are doing great! Garrett is loving preschool again this year. I also have enrolled him in the Utah Upstart program. I cannot believe how much he has learned since we started in August. He is reading!! Ok so truthfully I thought he'd get to this point maybe January at the best, but he's such a smart kid. (Takes after Jordan) he is also getting good at his math facts! Our conversation into town the other day was 

G- "mom what's 15+ 16?"

Me-"Ummm 31"

G-"wow that's a lot"

Me-" what's 2+3?"

G-"5"

And so it went on for 20 min. 

I'm just so amazed at how fast he picks it up. Here's the garrett moment of the day... (At the last Aggie football game)

"Dad they just threw a banana on the field" (the penalty flag)

He's also taking his big brother roll very serious... Including the teasing part. Of course he doesn't get away with much because Audrey's figured out that a good set of lungs to scream is the winning trick. 

Now for the Audrey update-

Audrey turned 2 recently and has started to excel in her development. (Basically she's normal, with maybe a little ocd) Audrey loves a routine, no matter who's it is. Every time we leave home she asks if garrett is going to preschool. It's so funny because she is so smart directionally. So if I turn a certain way, or don't she lets me know where/ or where I'm not going. For instance... If I turn left onto 1400 n, she knows we're going to see grandma Linda at work. If I turn into Sams parking lot, and doesn't want to run errands that day, she says'" no pop today". (Who can go to sams without a pop?) 

Audrey has been doing great as far as her seizures. In July, she had a week where she had a ton of seizures again. Unfortunately , poor Jordan had to do it alone because I was out of the country. (Another post to come) We switched one of her medications from zonisamide, which did good for almost a year, to Topamax. We quickly saw a change in her mood from being kind of sedated and onry to our happy joyful tease of a girl. I was so excited to see that little girl I knew before all of this started. I have been so grateful for the change. It gave me hope for the future. Since switching in late July, Audrey has only had 2 seizures! I'm hopeful to see if we can break the 4 month seizure free record! Currently at 2 months, but going strong. 

We also have great news regarding genetic testing! We have submitted a sample to Spain, after some glitches, and we should be getting results sometime around March I think. Also we are going to be doing another genetic test which is a genome sequence. This one is more advanced and looks to see which of her individual genes have abnormalities. The hope is to be able to pin point what the cause is. We are about 99% sure that this is a lifelong thing for her. There will be challenges ahead for her, but we will take them as they come. There are also great advances in epilepsy treatment, such as the cannabis oil, and many others that give us hope for the future of treatment. 

Well other than a super long post to get sort of caught up... Here is a quote I heard this week that has stuck with me.

"When you get to the end of your rope, tie a knot in it and hang on tight". 

*** update since I wrote the initial post. Audrey has had 2 more seizure days a month apart from each other... Alas what can you expect with sickness season and holidays. We had a great Thanksgiving and Christmas! 

And we are officially done with the outside of the house!!! Yea! (Picture to come later)

Also... Garrett got glasses. 

Dance party outfit.

 2 trouble makers

Man of the hour, putting up the last piece of facia to complete the outside!

Olaf snowman, she only hates wearing a hat when she's outside... And needs it!

Tradition of Christmas Eve skiing! Started both kids at age 2. Both LOVE it! Yay!

It's almost Summer!!!

It's almost summer time again. I can't believe how it always seems to sneak up on me. But I do LOVE summer. We have been pretty busy these last few months... hence to reason I havn't posted anything for 3 months. We have sold our house, moved, and just living life.
 I was sad to move from our house in Prov. It was a great house with many great memories. I have an unusually hard time with change... I hate it, plain and simple. I enjoy having my 'safe' places. I can't think of how else to describe it. I think I just know that I'm growing as a person and leaving that part of me there...so to speak. I just don't like change. so there. My favorite part about moving was, experiencing it through Garrett's eyes. He only had one day where he wanted to 'go home'. I think that was my hardest moment of all. But once he saw that we had moved all our things (aka his toys), and Jack (the dog). He was fine to not go back. What a great reminder that we only need the important things to come with us in order to be happy. Only 4 yrs old, and taking me to school ;)

Prov. House transformation...

We will miss being there, but exciting things await...

We have loved living in the 'new house', even thought it's not entirely done and we are still in full construction mode. dark floors and dust are not clean home friends, but I do love picking out everyone's shoe prints. At least I know where everyone has been :) we also have a little river trail we walk on to get to the grassy field (aka park with no equipment yet) We've loved just taking a little stroll after dinner to let the kids run around. Audrey especially loves it because she can 'run in circles'. She just likes to run free. I tend to hover quite a bit with her. Garrett likes to have sidewalk to ride his bike and scooter. He's getting really good at it. If only he could keep his eyes on the road I would think about trying without training wheels.... I can't believe how grown up he's getting. I tried to plant some pots in hope that it would feel a little homier... and I love how they turned out. I can't wait to see how they look by the end of summer all full and blooming! Plus I hope the tomatoes make it. Jordan has been working his heart out, here and at work. We're trying to finish the basement and driveway first, then maybe deck and a piece of yard. There's a never ending list to do. But it will be a lovely home when we're done! I'm excited to see how it transforms. I'll have to take pictures like the old house.


Audrey update:
I somehow feel like this is the "weather part" in the newscast.. which is my favorite and I feel most important.
Testing in Spain has been delayed and I don't know if we will ever get it done... We took a sample and sent over to Spain the first part of April. In May when we went in for our schedules appt. we found out the sample had been delayed by customs (they don't know why) and so the sample was not viable when the testing facility was suppose to receive it (within 72 hrs of draw). Why it took a month to find that out is comprehensible to me. whatever. so now we're on hold to see if we redraw and ship it differently or what. Hopefully we can figure it out by the end of June... who knows. until then we are continuing with medication treatment.
These last couple of months Audrey has kind of regressed. She was having 1 seizure every 2 weeks, then 1 a week, then she hit 2 in 2 days, and finally 6 in 2 days. it was rough. August was the last time we had to give her emergency meds, so we made it 7 months. not bad. Plus we now have new meds for when she starts to have clusters like that, which are oral. so I hope those will help reset her.  I hate to start having her be predictable and the meds maybe not working going into summer. we are such outside people. She loves to play at the park, and we like to go camping, hiking, boating, etc. Plus she did have one today while at the park. So I think we will be getting her a cooling vest this year. Hopefully that will help us not be couped up in the house like in the wintertime.
Audrey also has gotten glasses. Turns out she's farsighted. She still looks pretty cute in her glasses. I decided to go with Lavender ones.. but she calls them her "ewt eewws". (woot woos, like when you whistle at someone) it's too cute! 

So that about sums up our lives for the past 3 months.
Bring it on summer!

Side note- My brother will be done with his mission in July and I'm headed over with my parents to pick him up! I'm so excited to go to PARIS FRANCE!!!!!! I'm so looking forward to going to Europe. I've never been and can't wait!

Rolling again!

Disclaimer.... Wrote this in February (about a month ago...) but didn't want to delete it.

Audrey update-

So we've been enjoying some seizure free time! Yay!!! Official count is 34 days! It's been so wonderful. We went down to the neuro dr last week.... And hopefully got some things in the works (aka genetic testing stuff) and confirmed Audrey's meds were in the therapeutic range again. We're going to be taking a proactive approach and get her tested every 3-4 mo to stay on top of it! I really would love to go 6+ months without seizures! 

Audrey is learning so much, and today we went to the park because it was 60 degrees! So nice! She LOVES being outside and just wandering around. She still loves slides but we have yet to test the swings out. I'm sure she'll love those too. Her coordination has gotten so much better in the last week as well. I think she's starting to grow again because she has slept a ton lately. She also has started going to nursery.... After a thorough sick kid check.... And loves that as well! She even waves bye when we leave. It's going to be like Garrett when he went to nursery... We had to run behind him to keep up to the nursery room. My favorite part about Audrey right now is that she's getting back into that cuddling stage, accompanied by kisses. She does the fish face when she gives you a kiss. So funny and cute!  

March 17- 

So now that we're up to date.... Audrey is still doing great. She had a seizure the day after I started writing the above... Since then, well it's been a CRAZY 3 weeks. She had a seizure, had another tooth come through, somehow got this super nasty cold, then got pink eye (apparently its going around these days), then started to get croup. It was awesome- pretty sure we should be done for the year on the sickness front :)  

We've increased meds again, so we should be good on her levels there. Hoping they will hold off anything in the next week- (currently at 26 days!)

We went in for her 18 mo appt today and Garrett's 4 yr appt. 3 shots for both- not fun... Oh and some advice- make the older child go first...ALWAYS! Live and learn. But they both made it through them, and glad we didn't wait another year to get kindergarten shots for Garrett. He would have been too strong for us. Garrett is skinny and a little short (13 and 40%) and Audrey is evenly rounded in the 75-80%. She's going to be able to beat him up before he grows :) ha ha 

The dr was impressed with her language and development. It was a good reminder that its better to have the terrible twos show up early rather than late. You try to be positive and think you're doing good, and then get a reminder like that. We are blessed!! So, speaking of keeping that in mind.... Audrey might have to get glasses :) we have a eye appt in about a month to get them really checked out. Update to follow on that.

Garrett had his 4th birthday and it was a good one for him I think... "You give the best presents mom" ... Probably the best line he could've said to me :) makes the effort all worth it. He got a scooter, knee/elbow pads, Spider-Man shirt, Spider-Man swearshirt (from gma L), Spider-Man lunchbox, card game, book, a hex bug (from uncle Ryan- it's a little creepy), and his very own frozen shirt! (From cousins Kate and Ali) he was pumped about them all!!  

This is him in Audrey's nightgown. He was excited to finally get his own shirt!!!

 We did go skiing up to beaver mtn for the snoopy carnival which was awesome!  He's such a great little skier, didnt need any help even if he crashed! (Thanks mom and dad for helping teach him!! Such a great little skier!) couple of my favorite parts were: 

Audrey giggling the whole way down the slope while riding in the backpack. She loved it! 

Audrey and my dad! 

 

Garrett saying," see all these balloons mom? They did it just for my ski party!" 

Yes Garrett, and we enjoyed them! :)

We all had a blast skiing and I regret not going up more this year. Next year will be different.

Two cute girls laughing and having a blast!

 Couple more Garrett moments from today-

Loves this phrase... And it's pretty funny when we hear him say it "what in da hect" (what in the heck)

And since today was St Patrick's day... I attempted to dye the milk green... Managed barely... But Garrett started calling them 'lefichauns' instead of leprechauns.  Too funny! Jordan said he was making up his own transformers team. :) 

House details to come soon! Could be super exciting!!!!!!!!

Counting again!!!

Audrey update-

So this is just a quick one. We are counting up again!!! Audrey's meds are either in the right range now or she just hasn't been sick for a month straight... Either way I'm loving it! We are at 18 days - trying for 4+ months again. Hopefully we can get regular med level checks from now on to continue the streak! 

Happy February to all!

Sibling fun

Back on a Schedule

Audrey Update: (don't mind my little rants here and there)

So Audrey is officially back on her 2 week schedule. I was hoping she wouldn't have one today (day14) but she did at 6:30 tonight. So close!

Audrey has come up with another seizure type. BOO. (we're down to 1 type of seizure-tonic/atonic seizures or drop seizures, that she hasn't experienced yet)  I don't like when things change.... it's scary and I don't know how to take it... should I be concerned? are things changing for the better or for the worse? So this new type is weird to say the least. She starts blinking funny with occasional eye roll back (which we've been concerned about before but dr. in Ohio said nothing to worry about) then she doubles over as if in pain, and screams like she's been impaled, then looks as if she's there but not mentally. The only thing I can come up with based on my internet research (because SL dr won't call me back personally like I've asked) is she's having a complex partial seizure. Good news... (since our 3 encounters) two have only lasted a couple minutes. I like having a break from 5-20 minute ones.

We've been working with the Dr in SLC, and he increased her Phenobarbital to 5 tablets. She currently is on 5 tablets of pheno and 2 of Zonisamide. From past experience I know that it takes at least 10 days for the meds to even out, but I was hoping an increase would just get us back on track. When we took her med levels last week she came in at a 17.8 (range is 15-40) so she was on the very low end. They like her to be somewhere in the 25-30 range. So here's hoping for things to stabilize and maybe we can get another blood test to see where she's at in the next week. My personal opionion on her meds are: Pheno- shortens the duration of her seizures. Zonisamide- actually stopped them from happening for 4 months... not sure why the change.

Poor girl, even these little ones just wipe her out. I'll be interested what the Dr thinks about these new ones. We have an appt in about a month so hopefully we can get meds at the right levels and then if she continues on her 2 week cycle, we can go "what the heck?!"  don't get me wrong 2 weeks isn't all that bad... the predictability helps so I can schedule around stuff, but those 4 months were nice. Hopefully we can get things figured out... soon.

Catching up a little

So I forgot post pictures of the kids in their Halloween costumes this year. Really my mom took the photos and I didn't get them until just now from her own blog :) 

Audrey was a cat. And a cute one at that... if I do say so myself. 

Garrett was Captain America... And a good one at that :) ha ha  he wore his costume for a whole month, and it finally started to give out. Now I have the task to try and fix it. 

I've tried this past year to live in the moment, and I think I've been able to do it pretty good, but sometimes it's nice to look back and remember some of the good times we've had already. I've really enjoyed my kiddos this past fall. (Partially due to the break in health craziness...I felt normal again) 

One of my New Year's resolutions is to stop and do something fun with my kids each day. Wrestling around, sledding, or just making "special drinks" ( apple cider/ hot chocolate) I have to remember to share the fun things in life, not just teach the responsibilities/tasks which we as adults get caught up in most days.

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!!!