Calm Amongst the Chaos

Let’s Shop!

Kim Nothdurft

November 21, 2011

I am not sure if I made an offical announcement but now is a better of time than any…..
I am now a board member for the IFCR (International Foundation for CDKL5 research)!
I’m thrilled to be a part of these special woman doing something to make a change for the future of CDKL5. I won’t push things on you in every post. You all know that is not my style. But I did want to let you all know we have a store that is currently selling hand-blown ornaments that are stunning! Each one is etched with either hope, love or cure cdkl5. It is a wonderful way to support our foundation and honestly they are beautiful ornaments!
We also have other fun items that show your support!
Anyway, just check it out 🙂

vvvvclickvvvvvv
CDKL5 Store

Viva Las Vegas

Kim Nothdurft

1 comment

November 18, 2011

Vegas came upon us fast and hard. It was one of those are we going or aren’t we going. Where are we staying, who is going? My beautiful niece, Ariel, turned 21 on November 10th and since her 18th birthday she has been saying “we are going to Vegas for my 21st right?!” Well it was sweet at 18, and 19 and even 20 but we all thought there is no way she is really going to want to spend her 21st Vegas birthday with her Mom, her aunt, her grandma and her uncle. There was just no way. Yet as the time got closer she got pushier and it came to the fact that she really wants us to go. Isn’t that so sweet? I mean I have to be honest here, those weren’t the top VIP invitees when I turned 21 a couple *cough* few *cough* err several years ago, ok over a freaking decade ago. But when push came to shove we were going to Vegas. My stomach was in knots, I didn’t really want to leave the kids. We don’t have money oozing out of us and we had a mini disaster of sorts happening at home. Hot water heater died, toilet was totally clogged and the disposal took a poop (thankfully not in the clogged toilet). We were coming off a not so great October. Ok a poopy October. We had a lot of sadness. Lost dear friends who after an emotionally draining situation decided to move back home to Oregon, Lily’s tonsillectomy I swear took years off of me. I tried to wean Lily of Banzel and she had the worst seizure days we had seen in a long time. It was just not a good month and I guess my heart wasn’t into viva Las Vegas. But since Grandma Cheryl bought plane tickets came down to watch the kids, which was so sweet of her, and Ariel wouldn’t take no for an answer we packed up and drove to Vegas. In one car we had Andrew, my sister and I coming from the Valley and in another car we had my mom, Ariel and her boyfriend who met up in Flagstaff. We all met up in the Bellagio lobby after a long drive and looked around at what had to be known as brideageddon. It was after all 11/11/11. I was tired, standing around watching the nuttiness of Vegas and thinking, I am not in the mood for this. It didn’t help that it was nearing 8pm and we had no dinner reservations and getting in anywhere wasn’t working too well. Eventually we ended up at an hour long line for a buffet to where you pay lots of money and still get treated poorly. It semi felt like you were guilty til proven innocent on paying and being sat, but its ok. We finally sat. We finally ate. Then we went looking for a place to sit and have our first drink. And then shall I say the night took on a whole new tone. We met up with a friend/ family member (married to the sister of our sister in law) who lives there and he got the drinks flowing. He was quite the tour guide and I’m not really sure all we did but I do know we didn’t get to bed until after 2am. 3am for us AZ folks. And Andrew did some planking on the streets of Vegas. He even planked next to Stitch. Yes Stitch from Lilo and Stitch. We woke up at a ripe 7am just giggling about the whole previous night, of course very quietly since we were sharing a room. Andrew and I decided to get breakfast and that is when the interesting things seem to start to happen. People are still up. From the night before! How do you have the stamina? I thought we were rock stars for making it til 2am. I saw girls falling all over each other. One couple walking with the guy pulling the girl by her hair (let’s just say not in an abusive way) I saw the walk of shame out of hotel rooms. We saw gamblers dressed in their best not even yawning. Not too many were in pj’s looking for breakfast, put it that way.
After we paid $50 ($50!) for buffet breakfast, by the way, I think if it is really “all you can eat” they should give you a hand stamp so you can come back. Otherwise you just have people like me throwing bagels, bananas and apples in their purses. Which came in handy to the homeless people, although the look on the woman’s face was like yeah I guess I’ll take your banana, I thought it looked tasty.
We go back to our room after 9am and figure Ariel and her boyfriend slept long enough. We woke them up. I wonder if that is the joy Oli and Andi get when they wake us up at 7am on a Saturday morning. Ariel and I head down for breakfast with the girls. (no I didn’t eat twice, just went for the company, but you can keep on judging me if you’d like 😉 but what was to be a day with the girls went from breakfast at 9am to all of a sudden it was 7pm. Seriously how does that happen? I mean. We didn’t shop, really. We didn’t gamble, really. It was the oddest thing. We had so much fun. I guess when you’re up $17 on your mom’s $5 in penny slots; life is going your way. Don’t even ask how my husband was doing on the other side of town loosing on black jack with Tanner (Ariel’s boyfriend). It was a girl’s good day and a boy’s bad day. When we finally met back up, us girls giggly and tipsy we were met with a bit of the grumpies. Then changed and back out for dinner. But then mojo was gone. Done. We all yawned through dinner and made it all back to our rooms and were all fast asleep by 10pm. And by morning we were packed up and heading home.
I’d have to say the highlight was that day with my sister, mom and niece. We were all so relaxed and just enjoyed the day. My mom and sister are a bit more planned than my niece and I yet they just went with the flow. And we flowed all day all over town. We went to this bar called Minus 5 and it was all made of ice. It was freezing and so fun! I ate my cup made of ice. I mean how often can you eat the glass that held your martini? Who else could resist that?
When we finally made it home, that is a long drive, we were greeted by a Thanksgiving meal that was Andi and Grandma’s surprise for us, and lots of hugs and kisses. It was a great way to come back home and we were so glad to be there.
I do have to say though if I could do a little soap box business. Ladies, you do not need to show the world that you have a short skirt. Strangers should not be praying to God you are wearing underwear. Also we can tell your boobs are big, you don’t have to show them like that. A little to the imagination is sexy. The goal is sexy not slutty. I get it, its fun to dress up, it’s Vegas after all. But when your skirt is an inch from your hiney and you are tugging on it all night long, you know that isn’t sexy. Any girl can find a guy, but it is quality that matters and fishing for a man in that outfit will get you noting but crabs. I meant that figuratively, but it could go literally as well. And getting that drunk is not safe. Not when you two girls are all you got, if you are both falling over each other on a bridge and a strange homeless kid is trying to “help” you, that is not safe. You have to work together, protect each other. Mom types like us can’t stop you and make sure you are not making a mistake walking with this strange guy taking you back to his hotel room. So yes its Vegas, dress sexy not trashy, get tipsy, not wasted (unless you have a safe friend) and enjoy your time. Don’t take home anything besides some corny souvenirs and a designer handbag.
Ok done, had fun, glad we went, but more so glad to be home!

Planking by Stitch

Family Fall Photos

Kim Nothdurft

3 comments

November 16, 2011

I can’t brag about my friend LIZ enough! We showed up with a sleepy Lily and well a 2 year old Oli. It was about 90 that day yet I made us pretend it was in the 70’s and we left the session thinking no way we got anything! But in true Lizzy fashion she surprised me with some stunners! Now there aren’t a ton, but the ones we got are priceless.

Love this one!

Working with (not against) a sleepy Lily

LOVE!

Tiiiimmmeeee is not on my side….

Kim Nothdurft

1 comment

October 27, 2011

I suck at posting lately. Total suckage.
We had a heck of a time with Lily getting over that surgery. It was awful. 2 full weeks of pain and an entire week to get her to poop. It was exhausting for all parties involved. Lots of crying. For all parties involved.
She is basically back in action, yet we put her on Zonegran about 6 weeks ago and she is finally on full dose and the poor kids appetite is cashed. Like maybe some pudding and applesauce. If it weren’t for carnation instant breakfast and pedisure I don’t think she would have survived. She had to have lost at least 5 lbs and on a tiny frame already that is too much. Get this, she is again wearing the size 8’s handed down to Andi Jane and Andi Jane is wearing Lily’s 10’s. What is going on here? I don’t like this reversal. It was hard enough watching Andi Jane walk and talk by the age of 1 when Lily at 3 at the time still couldn’t do either. It was hard when Andi totally surpassed Lily’s shoe size and now clothes. I’m sure it happens with typical sisters, I’m what 3″ taller than my “big” sister and always have been a size or two bigger so I know it happens, but it still reminds me that nothing is normal here. Sometimes it’s nice to just pretend in my head our family is typical, forgetting seizures, and wheelchairs of course, but now Andi Jane is just full on growing bigger and 2 years younger. I just don’t like it. I remember as a kid wishing on every birthday cake for my brother to be “typical” or to walk and talk like us and every year it didn’t happen. I just worry that I am still doing that to this day just over my kid. My child whom I accept fully as she is, but sometimes that yearning for “normal” is overpowering even to a wise woman who understands her lot in life. Although I do understand come teenage years I may be grateful for just one typical girl 😉
Things are crazy, every day we have something else going on. Halloween is coming up then of course the holidays so I’m fairly certain time will become more and more of a luxury.
Speaking of Halloween I have yet to figure Lily out and Andrew and I will be attending an adult party (we haven’t done one since before Lily) on Saturday and we haven’t a clue as what to be. Tonight is date night supposed to be getting costumes, yet he said we’re attending an HOA meeting instead. My knight in shinning armor.
I have so much to share but they all deserve a post of their own not just a jambalaya of words and thoughts (now I’m hungry) so I am going to challenge myself to remember myself and my passion and get back to what I love doing. I deserve some writing time.
Promise to try harder….

WWPD?

Kim Nothdurft

no comments

October 17, 2011

WWYD? WWJD? WWPD? The last one is what would Phil do. Phil, you know, Phil. Phil from Modern Family. Phil. We all love Phil and some of us, maybe those of us who have watched the show from the day it premiered, the day you anxiously awaited after seeing the commercial for the show showing Cam and Mitch on an airplane and someone said look at the cream puff and Cam yelled about that being offensive and then looked at baby Lily with a cream puff. Oh the show that tops all the other comedies. Modern Family. I heart the entire cast. I want to marry Cam, if he’d have me. I love that show. Ok back to Phil moments. If you love the show like we do, you yourself have had those moments and laugh. Or cringe. I recently had one of those moments.
With Lily’s surgery and fall break I’ve had no dates with my husband, no breaks with my friends. If I am at work it is with Lily. Like I go potty and stare at a dog and two kids. No breaks.
So we find out some amazing news that a good friend of ours doesn’t have cancer after a lot of testing. It was hold your breath waiting then when she said she was all clear it was time to celebrate! Our plan was to go to a bar just a mile or two from home, my friend Kim picked me up and it was time to celebrate! Kim shows up and I am not ready of course. She waits for me, then I kiss my family goodbye and get ready to have a drink or two or five. Just kidding. Just a few. So we are on the road our typical banter of what’s going on, I get a text and I start responding, when I look up I see two cars collide. I don’t think we even said a word, Kim just pulled over and I grabbed my phone. I dial 911 and start telling them about the accident. Kim takes off to the car where there is a young teenager jumping up and down in a panic because her mom is pinned in the car and it has caught on fire. I am telling the 911 operator to hurry up, the car is on fire! She is screaming! The lady was screaming! Kim is trying to get this lady out of the car, passerby’s are throwing milk, juice, soda on the fire, someone had a fire extinguisher that hardly did anything. And I stood there on the phone to 911. I look over at Kim hugging this frightened young girl. I see Kim checking on the passenger in the other car. I see her across the way talking to others. I was on the phone with 911 still. Finally fire truck comes and gets out the fire. We don’t think the woman was burned but her legs were crushed and it took an hour for them to cut her out of the car. The police officer comes over to me and asks me what happened. I said the car came out of nowhere. I don’t know what happened. I tried to tell him then I say I was texting go find my friend Kim, she was the one driving. He goes and finds her and talks to her and comes back to me to say “you were right, your friend was a much better witness”. “Yup” I told him, then proceeded to tell him this is really taking away from our girls night and he sounded like he wanted to be invited. Silly officer. When I finally got reunited with Kim I hugged her and told her how proud I was of her and how much I loved her. She was a freaking hero and I just called 911. And yes this was awful and scary and how am I relating this to a Phil moment? I don’t know, I just think Phil would picture himself a hero in situations. I know I thought I would have acted faster. The car was on fire. My instinct was not to run into a burning car. I would have loved to have been a hero but I stood there not knowing what to do with my hands. It was a Phil moment. Or maybe a Mitchell moment. But whose ever moment it was, it was really mine and it was just funny, later, and not at all for the scary accident and the poor woman with crushed legs and her poor daughter who saw something really freaky, but for me it was like… c’mon Kim that’s all you got? A cell phone?

Still recovering

Kim Nothdurft

no comments

October 10, 2011

Well I post Lily’s recovery on Saturday to have her wake up on Sunday with a 102.5 fever and her just miserable. The on call Dr (yes you better believe I called him when he was on the golf course) said that is was normal and they get worse before better. Well he wasn’t kidding! Last week was worse than the first week. She took the tylenol with codeine every 4 hours until this past Saturday and even then she took it am and pm. The fever lasted until Monday and she had to go to work with me Monday, Tuesday and Friday (the girls are on fall break for 2 weeks). She still hardly eats and has lost a ton of weight off her tiny enough already frame. She is incredibly constipated right now and even with enemas and miralax we aren’t getting anywhere. If she doesn’t explode soon we will be at the dr. She screams every once in a while and I know from Andi’s experience the cramps that come and go are excruciating. 😦
She is at work with me right now watching netflixs being a sweet but uncomfortable girl.
So glad I have the next two days off. I love working, but when the kids are out of school it is more work getting to work than actual work.
Sigh. So pray for poop. We are hoping to get away this weekend by visiting my niece Ariel in Flagstaff (she attends NAU). We are excited for a little getaway as long as Lily’s bowels comply.

Recovering

Kim Nothdurft

2 comments

October 1, 2011

Lily’s surgery was 10am on Tuesday morning. The surgery was the quickest one she has ever had and we were back in recovery in no time just watching her beautiful face sleep. She always takes a long time to wake up after anesthesia so we knew it would take her nearly an hour before she woke up and we were right. What we didn’t expect was the 4 hour wait in recovery for a room. The room was about 50 degrees, no joke and we were starving. We never sat that long before in recovery. When Lily finally woke up she was pretty peaceful at first, then she started to cry, they put pain meds in her IV and she went back to sleep. Most those 4 hours were Lily sleeping, Andrew and I saying we were freezing, saying we were hungry and passing Lily’s iPad back and forth playing some dumb animal pet shop game of Andi’s that goes so fast you about have a heart attack trying to avoid unhappy customers. Perfect game for life’s biggest people pleaser. Oh no, not an unhappy FAKE customer.

We got to our room around 4pm. Yes, I said 4pm….. and our nurse was a nurse that used to come fill in years ago as our home health care nurse. It was so good to see a familiar face and I knew we were in great hands. The hospital had built a whole new tower and Lily was the second patient in this room. It was quite beautiful for a hospital and although it wasn’t exactly a staycation, it didn’t feel like prison either. The nurses were all incredible and I will say it again, pediatric nurses are like no others. They have hearts bigger than the body that stores them and I am grateful to Phoenix Children’s Hospital for staffing the best!

Lily was up off and on and was drinking and ate some but when I asked for pain meds I didn’t realize we couldn’t do it through the iv anymore and it didn’t go well. Lily spit it out everywhere and we had a difficult night that night. In the AM she was drinking enough and wetting enough to go home and we were home by 10am. I got her meds at our pharmacy (Target, where every time I go there with Oli just to shop he points to the pharmacy and says “LolyNanna!” that’s sad) and asked them to flavor the pain med as much as they could and it has helped some. I also have to be a big jerk and plug her nose and blow in her face to make her swallow. It’s awful 😦 but when I let her go longer than 5 hours she is so sad it is too much to bear so I choose being a jerk over watching her suffer.

Yesterday wasn’t so bad she drank pedisures all day long, ate applesauce, pudding, naked juice, and yogurts and she seemed to be in a decent mood.

Wednesday Andrew had to head up north to work on a house and I scheduled the surgery fully aware of him going out of town, so I had Lily’s new caregiver come Thursday so I could take Andi to gymnastics and had her come today so I could get some errands ran. Plus I think Lily wanted me to leave with her brother and sister. They are so loud.

So loud.

Today Lily woke up with some really dark circles all around her eyes. They almost look bruised. She has been a lot more mellow today and while she’s been sleepy anyway, even more so it has seemed. This AM I got a call from my friend Nancy who said go online to Texas Roadhouse and look at their menu and let her know the order for our family and she’ll bring it over for dinner! Her hubby is the head honcho at the one by us and that place is yummy! It was such a blessing since Andrew is gone to have dinner brought to us. Nancy, who watches Oliver 2 days a week, knows that Lily lives and breathes for a loaded sweet potato from there and that is what she brought her. I was excited to have Lily eat with us tonight because she hasn’t since Monday, but when I put her in her chair and gave her a drink she just started crying, and this is the saddest cry she has ever cried. I put her back on the floor, gave her another dose of pain meds, it had only been 4 hours, I wanted her to go longer, but apparently she still needs it around the clock. After 30 minutes I sat her up and she ate the whole darn thing! But while we were waiting for the meds to kick in I was eating with the other two, but Andi said she’d rather lay down with Lily than eat. So I ate with Oliver while the girls held hands and listened to Jewel Twinkle Twinkle. It was the most precious moment. I just love the love that is shared between these two girls. I often will get bogged down thinking what their relationship *could* be, but then I see moments like this and it takes my breath away and I know their relationship is exactly as it *should* be.

Daddy comes home tomorrow and I’m really looking forward to having him back. He has been very missed. Very. Thank goodness for Skype! I’m like a walking ad this blog…. it’s a real shock with my quality of writing I am not sponsored.

So from what I heard we should plan on the next several days to be more of the same. All in all she is being an incredible trooper. I know I would be crying in my room demanding silence. I would never get it, but I would certainly complain louder than my sweet girl.

The other two are down for the count and it’s only 8:30pm! It’s time for Lily’s night dose and for my dose of wine (barefoot riesling cheapest one at target cha–ching ;))

What did the one tonsil say to the other tonsil?

Kim Nothdurft

4 comments

September 26, 2011

This was one of my most favorite jokes to tell as a kid. What did one tonsil say to the other tonsil? Hurry the Dr. is taking us out tonight. Insert laugh.
You have to insert it because I can’t do it myself. Ugh. Thursday I miss a call at 4:30pm to schedule Lily’s surgery, I listen to the voicemail write down the number and call her back only to get her voice mail that she left for the day. So did you leave my message and just run out of the building like it was on fire? How did she go from there to schedule to gone… things we may never know.
Anyway, I call her Friday am and I tell her we have a whopping 2 1/2 weeks off for fall break and how lovely it would be to schedule during that time, she puts me on hold and says there is no way the Dr can do it then, I’m thinking great they won’t do this until November when Lily is in the middle of one of her common fall/winter long colds… but no she says can you do Tues the 27th? Gulp.. yes. I guess. Ugh. It is here so quick 😦 I’m just in knots. I know of 4 people 2 adults and 2 kids who have had them done fairly recently the 2 kids were very recent and I’m scared for Lily. I hate to see her uncomfortable and from what I understand it can be very uncomfortable. I know to keep her up with the meds and that helps a lot. But still, sucks.
I know it needs to happen though. Our family all stayed in a (I’m struggling here with a or an, an is phonetically correct just sounds wrong, I will leave it as a and let you all either correct me or just judge me on my poor grammar) one room hotel room this weekend to go to a wedding and that poor girl wakes us all.night.long. I pray that this will improve her sleep some. I pray that it is mostly from the tonsils and adenoids and not all neurological. I pray she handles this like the trooper she is and she is in wonderful hands. We will be staying in the PICU Tuesday night and will hopefully be home by Wednesday. It’s such a juggle with 2 other kids. Andi has half day on Wed and Thursday and I really hope I am able to swing the parent teacher conferences for both girls on Wednesday, but we have it all figured out and we should survive. Just like with everything else. My sweet girl has to yet again go under anesthesia as well as undergo another uncomfortable recovery.
I will hopefully have wifi at PCH and be able to update every one.
Keep her in your prayers please.

Convert your blessings

Kim Nothdurft

1 comment

September 14, 2011

We go to a pretty awesome church. Like the most awesome. Just this past Sunday we came to church knowing that we will leave barefoot. This was our 3rd Sept doing this. We did have fair warning and came to church with our shoes on, plus a bag full of others, and we left them back with about 3000 other pairs that will be hand delivered in Africa by a group of people hopefully including my hubby.
This service is called Barefoot Sunday and it is as inspiring as a church service can be. We learned what Jesus was all about when he walked this earth and what he did for others. We were challenged to convert our blessings upon others. People that some may see as invisible (or rather people that exist that some never see). People that many ignore. People that may not be like us. We heard a quote by Bono that ended like this “God is with us, if we are with them”. What a time to look into our own selves. Look into our own selfishness, time for us to walk barefoot and feel what the hot ground feels like on unprotected feet. Our family went to Chipolte for lunch after that service and we were all barefoot. All we did was hop from the hot surface to the hot sidewalk to the cold a/c filled restaurant then the same scenario back to the car and home. It was hot, our feet burned and we experienced that for a few minutes. How many generations live their lifetime never with shoes on their feet?
I felt so inspired to do more. I give my blood every 2 months. We serve in our church nursery, but I want to give more. Get out of my comfort zone and do more! We signed up for Live Love next Saturday where we will go into a local neighborhood that needs some caring on and I signed up to build in Mexico in November, I will be sleeping in a tent. That, if you know me, is enough out of my comfort zone. I HATE sleeping in tents and sleeping bags. Ugh. But see that is why I need to do more. The old me would be far more concerned with Missoni being at Target, this new girl only looked online at those beautiful clothes…..sigh…so beautiful. You know I fell in love with Missoni when a stylist brought it to a editorial shoot I was modeling in when I was 15 years old. I though one day I will own a piece from that line. But 17 years later I still don’t. But I know that my life will go on even if I never do get a piece. But it would be fun and maybe when we are on baby step 4 I will get a piece, thanks for totally changing my whole perspective on life Dave Ramsey… wow squirrel moment.
Annnnd we’re back. I want to do more. Give more. I am a blessed woman who has a husband, 3 beautiful kids, a home, air conditioning, food in our fridge, even a swimming pool, we are blessed people and there are so many out there who are not. My thinking has changed, I’ve slowly been changing, but I feel like I recently took a giant barefoot leap and look forward to seeing what other changes are about to come to this family.
My space bar isn’t working well, neither is my e, the x is missing and the ; is like a loose those just hanging there, I am telling you that b/c my writing doesn’t feel very fluid and for that I blame a 2 year old.

You probably think that you’re cooler than me

Kim Nothdurft

1 comment

September 9, 2011

Andi Jane has been bugging me to sign her up for gymnastics. I had been stalling since she like most politician she is a flipper. One day it’s basketball, the next is synchronized swimming. I wanted to make sure I was not better off flushing money down the toilet, but she was persistent and her coming home like a bucking bronco, “playing” which quickly turns into fighting with her brother was enough to let me know a little organized exercise might not be such a bad idea. So I had her signed up for a trial class at a gym about 8 min from our house. Yes 8, more than 5, less than 10. On the drive there we have to go through this road where there is a little airport and a bunch of hangars. All around the area is fields and a dairy farm. Andi Jane starts explaining me rural areas as opposed to city. I said that this all seems pretty rural to me and she was telling me that I was wrong. And then she said, “mom I just rolled my eyes at you”, not smart enough to not tell me that vital information yet I decided to change tactic with her. She thinks she is cooler than me. She is 6 and thinks she is cooler than me. So I say “see those hangars? That is where airplanes park, one time I was in a commercial and we shot the whole thing in a big hangar in Tucson and it was freezing in there!” “You were in a commercial?!” she asks wide eyed totally listening to me, “yes but it only aired in Japan” I answered, “You went to Japan!?!?” she asked again eyes filled with wonder, “No we just shot the commercial here and they aired it in Japan” I answered thinking, ha your mom is cool little Missy and then she says a disappointed “oh”. Oh so my commercial that only aired in Japan that was shot in a freezing hangar in Tucson all of a sudden was of no interest at all. yeah she just might be cooler than me.