How Time Flies!!

I can't believe how long it's been since I've updated this site!! Yikes!! Much has happened since January! Here is a short recap for those of you that have missed out on all the events.

Evie is growing up so fast! She is nearly 3! Her big brother Ian is 10 and in 5th grade! Wow! And big sister Kira is 5 and now in Kindergarten! They love school so much! We've added a band instrument to the mix now (Baritone - not quiet, what instrument is though?), missed the bus once already, had two different field trips, one of which meant that Kira rode home on the bus alone (she fell asleep and missed her stop - bus driver found her in her seat when he made it back to the bus garage! she cried of course and ended up getting a bag of candy out of it and a special ride home in the driver's van!) Evie starts 3 year old preschool in November after her bday! Crazy!

In April, Evie was diagnosed with Epilepsy. After the scariest three hours of my life, Evie was taken by Ambulance to the ER then Life Flighted to Des Moines to be treated by her Neurologists.

Jesse was at work that night and around 5:30 am I heard her, through the monitor, choking upstairs in bed. I ran up to find her grinding her teeth and making strange choking sounds. She was completely unresponsive, but I didn't realize what was happening. For about 2 hours that morning she was having Complex-Partial Seizures. We arrived at the Pediatric Office before they opened. While in the waiting room she began to jerk. The Clonic/Tonic Seizure kept spreading until her entire body was convulsing. This lasted over 45 minutes. I can't begin to describe in words how awful an experience this was. It took three doses of valium before they were able to get them to stop. (an adult dosage total)

Evie is on regular medication for the Seizure Disorder (Epilepsy). It is working well, though it caused four weeks of vomiting until her body adjusted. She only has seizure activity while she sleeps and the medication's purpose is to keep the tiny "sparks" from spreading across her brain and forming a full blown seizure.

After the puking calmed down a bit, we realized that she was still having trouble with occasional vomiting. Only when asleep, weird enough. This caused plenty of additional stress on us, worrying that she would choke and aspirate on the vomit in her sleep and we wouldn't know. After seeing a GI specialist, undergoing an Endoscopy and an Upper GI x-ray, she is now on a large dose of Prevacid to keep her from producing acid that would cause her to vomit. It is working!! Thank goodness! It took months to work it out and loads upon loads of vomitous laundry! Yuck!

Meanwhile, Evie got some new wheels! This is her Rifton Gait Trainer! We LOVE the PINK!

She absolutely adores walking around in this! Walking? Well, flying through the house ramming into everything is a more appropriate description. Lately she's been honing her skills in it! She is now able to traverse the house by steering and backing up and pivoting. She loves the tiled floors and the cold air return grates, as they make a wonderful bumping sound and vibration. We've been taking it with us to stores and in public so that she can get some practice being steered out of danger. She thinks it is all hilarious and can barely breath as she flies through the aisles. Everyone smiles and giggles with her in public. She's too stinking cute to resist!

In November Evie will be recieving a number of injections in her legs to fight the constant spasticity in her muscles. They will give her Phenol injections in her nerves that serve her hamstrings and adductor muscles. And they will inject Botox in her calves. This combination of injections will allow her muscles to finally relax. This is not only a more comfortable thing for her, but will allow her to move her legs in a more normalized fashion.

We are hoping to do a big walking push during the optimal time period while the medications are in affect. She may need future injections to keep her muscles from ending up in contractures which are extremely painful and make walking a near impossiblity. Many people with Cerebral Palsy have to have muscle lenghthening surgeries. We want to put that off as long as possible! Everyday we stretch her legs and arms to combat the constant contracting her brain is producing in her muscles. There is no cure for Spasticity in muscles. It is caused by the brain damage she recieved before birth. Keep us in your prayers in November especially as she will have to go under anesthesia yet again! (Endoscopy included sedation as well). She's been put under more than I have in my 30 years and she's not even 3 yet!

See Ya!! I'm outta here!!

Evie has been making great progress with her speech development. She has started babbling again!!! Lots of "mama's" "baba's" "vava's" and lately she's added "nnga" sounds as well as a very recent "rrrah" sound! Her understanding of our verbal communication has really picked up and it is so much fun to ask her things like, "Evie, do you want to play?" and she will look you straight in the eyes and nod her head "yes"!! So fun! Not only that, but her sign language comprehension has come along too. She is understanding many signs and has been working hard to mimic some. She is very good at, 'Hi/Bye', 'shoes' and 'more' (same sign for her), 'diaper', 'light', 'daddy', head movements for 'yes' and 'no' and occasionally she'll sign 'yes' with her hand. She is constantly clapping for herself, 'applause' and seems to try to sign 'applause' with her hands (looks like jazz hands). Her newest sign is 'roll'! She loves patty-cake and refuses to clap during it anymore, its all about the "Roll it" part!

In other news, Daddy finished school! Jesse is now an employed RN!! Woohoo!! This is a photo of his graduation day. We are so proud of him! Its nice to breathe a little easier, financially, now that he's makin' the Big Bucks! :) Way to go Daddy!!

Mommy (me), and her sister Nikki opened Green Leaf Spa in June and have been enjoying the wonderfully relaxing atmosphere to work in! It has certainly made things a bit more hectic for me, but its worth it to call it my own! This month, Sept., I will be attending a weekend seminar relating to hearing loss in children, and the next weekend, a Parents as Presenters Workshop which will help me present our story (Evie's Story) to professionals and families that need support. I have been hired as a Guide By Your Side (GBYS) Parent Guide through an Iowa hearing loss organization called Hands and Voices. These weekend workshops will be very helpful as I begin to help other parents and families with their new lives as Parents of children with hearing loss. I'm excited to go to these, but it will make for a very busy Sept.

THE END OF 2009

For New Years Eve we did a Murder Mystery Game! It was a ton of fun! Everyone was given a character to portray a few weeks before the event. Everyone dressed up for their part and came with props. Once gathered, we acted out a scene. This year's Mystery was called "Horror in Hollywood" It was hilarious to see everyone dressed up and acting out their character's personality. In the end, it turned out that the Zombie Lord Actor, Mr. Unde Eadcorpse, was the murderer!

So, just so you can see how silly our family really is, I posted mine and my husbands photos on here from the game.

Calley: "Miss Wanda Newlook" (Hair and Make-up Artist)

My character was a punk w/an attitude! I was a snotty brat to be quite honest! It was fun!

Jesse: "Mr. Cam Eralense" (Lead Camera Man)
He was a muscular guy and full of himself, but he had a high pitched voice that threw the whole image for a loop!

These are some random photos from our Christmas vacation in Tucson, AZ. Evie hanging out at the park in her stroller.

Ian, on the playground in front of the mountains just miles from Grandma and Grandpa's house.

Kira on the playground being silly! Mind you, we are outside, playing! In late December! It's winter, people!! It was too bad we came home to Iowa's winter: Ice covered snow!!

This is a photo I took because I thought the tree was neat against that backdrop.

And I think Purple Cacti Rock!

Evie has been very active lately! She has learned to scoot/crawl! She can pivot around in a circle also. She loves being mobile now and crawls around the house, checking out all the rooms downstairs. Lately we've found her near the stairs, looking at them. Maybe soon, we'll get to teach her how to climb them! :) I won't tell her 'NO' when she wants to that's for sure!!

Just think she looks so big here. This was at Grandma's house in Tucson.

Aunt Laura put together a Christmas program for the kids at our church to act out for us. The did the story of Jesus' birth. Ian, my son, was Joseph, Kira was a shephard, and Evie was baby Jesus. She is currently the youngest baby in church. She made for a BIG newborn! And with a full head of hair even!! The kids did great and it was fun to watch them.

Here is Evie with her cousin, Hallie, from Texas! We found out this day, that they both have matching freckles on the bottom of their feet! Silly side note. :)

And this happened tonight! This one's for you Wendi! Evie was having a little 'food therapy' this evening. Which really means, she played with her pureed food! She had a blast once she got rid of her CI's. (awnry punk) She slapped her hands over and over into the food and got none of it in her mouth as she is supposed to. She played in Applesauce w/Bananas & Strawberry, and in Rasberry Yogurt, and Carrots! Yummy! The only reason any of it's on her face is because mom and dad made her do it!

After she played for a while, she got real fussy. Turned out she was starving!! Silly girl! Maybe if she'd stuck it in her mouth instead of splattering it all over she wouldn't have been so hungry. She ended up eating a yogurt container and a half, and three angry bites of the Applesauce stuff. Then she was too mad to eat anymore cuz that stuff was just gross mom!!!

Halloween to Christmas

Evie Turns 2 on Oct. 31st! Mommy tells Evie to "Listen" just as the singing starts.

Everyone sings while Mommy signs "Happy Birthday!" Evie was a witch for her B-day/Halloween party and Mom was the first half of "The Ol' Ball and Chain" costume with Daddy.

Ready to Trick-or-Treat! Brrrr! It was soooo cold!

Ian and Kira Trick-or-Treating with Ian's friend. One Dinosaur, One Master Chief and One Grim Reaper.

Evie got a gait trainer to borrow from the AEA. She is tolerating it fine but seems to be getting lazier each time she's in it.

Kira thinks it is useful though.

This is proof that Evie is ripping her CI rig off. Here it is no longer her hearing bling but now her pink necklace bling.

Evie also got a bath support chair to borrow from the AEA. Thank you Bonnie! And thank you Elissa, Shandra, Miriam, Mary and Carol. You've all been great!

Christmas is upon us! Evie loves her big brother Ian.

My Beautiful Kids!

Kira and Evie playing together.

We were blessed to spend Christmas in Tucson this year! It was wonderfully warm! Then we came back home to ice covered snow! Here's Grandma with her granddaughters.

Evie, looking so grown up in her new boots from Grandma!

Aunt Laura was entertaining Evie during our gift opening... Evie could barely breathe she was laughing so hard. It was hilarious. After the hat fun, we got some great video footage of Evie licking Laura on the nose and in her face! It was too funny!

Hope your Holidays were fun filled!

HAPPY EARLY HALLOWEEN BIRTHDAY!

HALLOWEEN IS JUST AROUND THE CORNER!!

I love Halloween, always have, but now its even more special because God gave us Evie on October 31st two years ago! With our annual Not-So-Scary Halloween Costume Party just days away, we've been planning and prepping and sewing and painting and fitting and refitting. I think we're ready, finally! Five costumes is no little thing people!!!

Here are some photos of our prepping and fitting. I also included photos of Evie with her Halloween blanket I made for her while in the NICU. It was gigantic compared to her at birth! Every year I put her next to it and pull out the camera. So here is a progression of her three Halloweens with her blanket, (technically 2 Halloweens and one shortly after her very first).

More photos to come after our party and trick or treating!! Check back soon!

Kira is going to be a dinosaur!

This is Ian's old costume, mom-made! I'm quite proud of this one! Took me so long to make, I decided all of my children will HAVE to be a dinosaur at least once for Halloween! Kira is pumped about it!

For those of you who play Halo, you might recognize this dude! Here is our very own Master Chief! Still in progress...

Ian (Master Chief) comes equipped with 2 gernades, a Gravity Hammer and an Energy Sword! Watch out!! Ian couldn't be more thrilled about this costume! I made it with cardboard, spray paint, velcro, aluminum foil, and loads of duct tape!!! Its been the toughest costume this year and most time consuming!

Evie will be a little witch this year. My mom bought her a beautiful orange and black costume w/hat! Super cute! I'll post those after the party, I'm not gonna make her put it all on again just to take prep photos... :) That'd just be cruel and unusual punishment for a two year old!!

This is the best photo I could find of her and the blanket just after she was born. Not the best comparison, but you can see how itty bitty she was! (That's Aunt Nikki holding her)

Evie's 2nd Halloween, her 1st Birthday!

She had no hair!

And here we are this year, just days away from being 2!

She's getting longer and has way more hair!

And she can sit upright to play with it too!

Little game of torture the baby! She couldn't figure out how to take it off of her head, so she'd pull herself forward til she was laying face down on the floor trying to pull it over her head! So funny!!

Oh My! How beautiful is she?!! I love this little girl so much!!

She looks pouty, maybe because this was the 38th picture I'd taken of her! I bet she's still seeing flashes in her eyes!

P.S. Evie is still rejecting her Right (1st) CI! I am back to taping the Left one on just so she'll have sound. I'm staying away from connecting them both with our Ear Gear/Headband contraption because she pulls the Right one off and therefore the Left with it!! She's leaving the Left one alone when its the only one she's hearing out of, so we're happy with that for now.

Also, we're all fighting a virus here at home and have had school and work skippers because of it. And now it seems to be Jesse's turn, so keep him in your prayers that he will not get it as bad as I did, so he won't miss any RN school which would cost him academically.

BUILDING LISTENING AND LANGUAGE SKILLS SEMINAR

Jennifer, Clarissa and Me

Dave Sindrey

Today I was able to attend a free seminar put on by Advanced Bionics through the University of Iowa Hospitals Otolarangology Dept. It was Awesome!! Dave Sindrey was the speaker! He is the guy that does the Listening Room on AB's website! Wow! He was so knowledgable and kind and super helpful.


We got to hear lots about Building Listening & Language Skills for pre-school and school-age children with hearing losses. And we learned many new activities that can help our children learn new words, sounds, and so much more! Most of these activities and projects can be found and printed for free from his site the Listening Room or a link from there. Wish I understood how to link it in this post for you, but I don't, so you'll just have to check out my link list.


Here are just a couple of photos from our day. I went with my friend Clarissa, Evan's mom and we met up with our new friend Jennifer, Landri's mom. At our location, we were the only parents present. The rest of the group was filled with professionals. We were bummed by this! We were hoping to really connect with some moms and build supportive relationships from the event. Never the less, it was a great seminar.


Clarissa and I have created a parent-networking group for our surrounding area, which will span out as far as need be. :) We've called it "COMMON GROUND". It is a group of parents and families that are going through struggles with their children for one reason or another that are looking for friends to talk to in their area. And not only that, but someone who understands what trials they are experiencing. Maybe someday we'll have a website for this new adventure of ours!


We decided to form this group due to the fact that so many of our specialists and therapists were the same, yet due to privacy laws were unable to tell us of each other and our many similarities. God had other plans that included bypassing them, and getting straight to us!!!


We want to help connect families in a similar way, through those people that couldn't put us together before. We are empowering them with our personal contact info so that they can pass it on to those who need someone to talk to! We are excited to see its outcome!

Evie's NICU Reunion!

On Sat., Sept. 26th, my husband and I and our 3 kids, drove over to Ankeny, IA to attend an Annual NICU Reunion! (Neonatal Intensive Care Unit) We had debated whether or not we'd make the trip, but were asked by three different people on Facebook if we were going. That's when I decided the answer would be Yes!

These are a few photos that I took of Evie and her NICU friends nearly 2 years after their stays in the hospital! Every child pictured was in the hospital at the same time as Evie was and we still missed two sets of triplets in these! Wish I'd thought to take their photos too!

Many of the photos include a little girl that looks like she could be Evie's sister, her name is Ava. She and Evie were put in the same room at the NICU because it was overflowing at that time with babies galore! They were allowed to be together because they both had CMV and were in "isolation" from the other babies.

Each baby, or "set" of babies (twins, multiples) had their own rooms. The isolation came from the fact that our girls were not allowed outside of their rooms. Even Santa Claus stayed at the doorway and we brought her to the opening for the photo op where he didn't hold her in order to keep from spreading viral germs!

As parents, visitors and nurses/doctors went into our girls' room they were required to gown up and don rubber gloves! These stayed in the room when leaving and were deposited in a bio-hazard trash bin. This was to protect all the other babies in the NICU from our precious, tiny, cytomegalovirus infected babies! Very Scary for us parents!!

To honor the occasion, I'm also sharing some of our photographed moments in the NICU before showing you how far the girls have come!

A tired Mommy and her itty bitty Evie, weighing only 4 lb 7 oz!

Look how tiny she was! We used the buckle to keep her bundled lower body straped in. Now Evie would hang over the edges of that seat!!

Peaceful Sleeper. Her head was so tiny.

Chris and Sara with their daughter Ava. You can barely see her she's soo tiny!

Jesse, proud daddy, snuggled up with Evie. We kept her bundled like this to encourage her hypertonicity to soften and allow her to work on her head and trunk control better. She couldn't curl into a fetal position on her own, we had to learn a special swaddle to accomplish it.

Santa Claus came early to the NICU and the nurses let us take off our ugly yellow gowns for the photo, but not the gloves... didn't matter one way or the other. I was still nursing her and was skin to skin (or better yet, skin to contagious slobber) with her, many hours of the day!!

She was just so tiny and sweet. Its amazing how far she's come in under two years!! We mustn't forget where we've been, for those experiences will guide us down the roads that lie ahead.

This is Erin, our fabulous NICU Physical Therapist!

Ava and Evie nearly 2 years later!! Ava wears a Hearing Aid in her right ear, and has a Cochlear Implant on her left side. Evie has bilateral Cochlear Implants.

Checkin' Each Other Out!


Four little sweeties that have grown so much!!! All born premature, all doing very well and thriving.

Say Cheese! We were completely in the way of a walking area, four girls on the floor and two moms sprawled out taking photos!

Gotta love Ava's inquisitive nature!! This has helped her so much in her development!

Having a heart to heart?

Ava discovered my crunchy hair, and her dad discovered my camera! I looked back to play with her at just the right moment apparantly.

Laughing at her fun discovery, and wincing a bit in response to the hair pulling. Moments earlier she managed to grab my nose and scrape the inside of it with her thumb. As I hear, this is a common war wound in their house. So worth it to get to bond with her some more!!!

One more 'check you out' session... meanwhile... Evie works to knock her Right CI off with her shoulder! So sneaky and awnry!!!

Evie with her NICU Physical Therapist, Erin, nearly 2 years after her 42 day stay in the hospital!

My, how time changes things!!