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.