Summer Family Vacation 2010 while moving to Maine

Who says that moving across the country can't be fun?!.....well....We decided to make a family vacation out of our move. The driving was long and wasn't so fun, but the time we spent with family and friends and sightseeing was loads of fun! If only we could have visited more and stayed longer, it woul dhave been even more perfect! There were a lot of very late nights and early mornings (mainly for me, so I could at least sneek in a shower). This post has a massive amount of pictures in it and you may totally get sick of looking at us. But I wanted to get them posted on her so we can remember the fun we had! And most every picture of me....yeah, yucky, travel, humidity straight blah hair!

We left on Saturday, May 29th at about 9 am after getting some breakfast at the hotel. We had stayed at the house until after midnight to get it cleaned and in tip top shape! We had originally planned to leave on Sunday, but since the packers and movers got done early, we got a head start. That enabled us to stay longer in MO with my sisters.

I only took 3 pictures on moving day. Zach was concerned about his mountain bike, so he was taking care of it for the movers.

We left our home in Chandler, AZ and drove to Tucumcari, NM that first day. We already missed all of our wonderful friends in AZ. We had a wonderful ward and wonderful people around us. We really enjoyed the home and neighborhood we were in. The kids had some tears, mainly Chloe, from missing their friends. Zach had a really great friend, Alex, in the neighborhood the he has really missed. We wish we could have spent more time with them!

We stayed the night in a hotel and then headed to Kansas City, MO. It really was so great to be home where I grew up. Not at my parents home since they no longer live there, but just home. Home to familiarity, home to family, home to where I want to return some day, and home to the green! The AZ desert has its beauty, but oh, how I love the green! It truly is theraputic for me to sit outside and listen to the leaves rustle in the wind and watch the birds (carnials) fly by and smell the air after a rainstorm! Oh, I love it!

We then spent all of Monday with my sisters, Marci and Julianne and their adorable families! Thanks, Marci for letting us hang out at your place and thanks, Julianne for driving all the way down from Nebraska for the day to see us! We love you and miss you both! Growing up in an area rich in church history, I have been to most all of the sites. But, Chris hasn't gotten to go and we really wanted to take our children too. So since there were so many spots to hit along the way (that's what happens when you move so far!), we decided to go to as many as we could. Monday, Memorial Day, we went to Adam-Ondi-Ahman. After enjoying the peacefulness there and each others company, we headed back to Marci's house to let the cousins play and hang out for a bit.This is the valley behind Chris and Zach. Beautiful, quite and serene (until 7 extra kids showed up! Ours!!)

Marci. She is a fabulous friend to me and a wonderful mother! (kids: Morgan, Owen and baby Ruth)

Chloe and Morgan being silly and hooked at the hips! Zach and Morgan, on the other hand...well, let's just say they should be siblings! They totally act like it!Parker is IN LOVE with baby Ruthie!!! He wouldn't stop kissing and hugging her! He was so gentle and so loving with her. It was adorable!Owey - being his cute self!!Julianne. Beautiful and quite funny and a fabulous sister too!! (all my sisters are quite fabulous!) She loves her little Sammy pants so much and is a fabulous mother as well! (kid: Sam)Random pictures...Owey and Sammy-pants lovin' each other! Owen was trying his best to help Parker stand up... Tuesday morning, we drove over to Liberty, MO to visit the Liberty Jail. That is always a humbling experience every time I go. The spirit was felt by all of us, even the kids.

After spending some time in MO, I have a renewed appreciation for the area in which I grew up in. It is truly beautiful and so special. The rolling hills and the green trees and grass are just fabulous!

We then drove to Plainfield, IN. We got in late, but made a stop in at our good friends, Roger and Terri Turner's house. So fun to see them! We then spent the next day hanging out in our old neighborhood with my best friend Carrie (who lives in that neighborhood)and her family. We went and visited friends in town (wish we could have seen more!) and then had a great dinner at Carrie's house with our families and my other best friend, TJ and her family. Oh, how I love those two!! They truly are one of a kind friends and we can just totally laugh and laugh when we are together. I can't wait for them to come visit me....hint!! Here are some pictures of our day together...

Taking a walk on the trail behind the neighborhood while Chris caught up on his sleep. The kids and I used to ride our bikes on this trail all the time, so it was a lot of fun to be walking on it again. Brought back many good memories of our time in Indiana.

Chloe and Nissa Chloe thinks this "mad" picture is so funny... (she wasn't really mad) I sure wish they could play together all the time! What buds!!

Carrie, Boden and Parker

Seriously, when did he grow up!?

TJ, with her new little darling baby, Livia! Oh, she is precious! I wish I could hold her again while she is tiny! Too bad I moved away from AZ a week before TJ moved back to AZ!! Seriously...how crappy is that!! Many tears shed!!Sweaty-head, Evan. Man, he is so cute and so much fun! I loved to squish him! I remember squishing him when he was just a baby! He and Chloe are 4 days apart!

Zach and IN best neighborhood buddy, Connor. They got to play together most of the day!

TJ, Carrie and me (please pay no attention to the dreadfully awful hair!!) I miss you guys!

Our next stop was Buffalo, NY, with a couple stops in Ohio along the way. We decided to drive past the house I lived in in Akron, OH when I was about 1. We moved from that house to Blue Springs, MO when I was about 3. I then stayed in that MO house until I went to college! (This picture is mainly for my parents b/c this is their very first house!) The only thing I remember about this house is that we had a bunny in the backyard. I remember playing with it and then remember that it got loose and ran away. The next stop was a tour of the Kirtland Temple, built by the early saints in Kirtland, OH. It is no longer owned and operated by the church and you can take a tour of it.

Taking random pictures in the gardens...

After getting in very late to Buffalo, NY, we got up early and headed to Niagara Falls and Horseshoe Falls. Talk about beautiful!!!!

The next stop we made that day was in Palmyra, NY. We visited the home of Joseph Smith's childhood home which was a very small log cabin. (this is a replica, but built in the exact spot the original was built)Joseph Smith's father owned 100 acres and so they decided to build a larger home just down the road. After loosing the title to their home, they then moved back to the small log cabin. (this is 85% original)

This is Brigham Young's father's grain threshing barn that was moved piece by piece from upstate NY to the Smith Farm for historic preservation.

This is the cooper shop where Joseph Smith hid the gold plates to keep them out of the hands of mob men.

The next place on the tour was The Sacred Grove. (if you haven't clicked on any of the hyperlinks I have put up, at least click on this one. It is short - I promise)

I remember coming to the Sacred Grove when I was 16 on our family vacation. I remember walking through those woods and feeling the Spirit so incredibly strong. It is a sacred place and a place that holds such a sacred spot in my heart. Because a 14 year old boy decided to pray and ask God which church to join, we now have this wonderful Gospel restored. I am grateful to him and grateful to my Savior.

It was a different experience this time walking through it as a mother. Although I couldn't just focus on myself and my own feelings and thoughts like I could when I was 16, I felt the Spirit with the same intensity, nonetheless. It is a beautiful place!

We then drove up the hill to see the new Palmyra Temple. You can see it poking through the trees from the Smith Farm. It overlooks the Sacred Grove. President Hinckley (prophet at the time) directed the three front windows of the temple to remain clear instead of frosted so that you could look out them and see the Sacred Grove.

We then drove up the hill to the Hill Cumorah monument.

After driving close to 3,000 miles....we made it to Maine!!!! Whew!!! What a week! Maine is gorgeous and the people here are extremely friendly! We moved into a great neighborhood that has lots of kids and fun things to do. After unpacking for 4 days straight and going stir-crazy, I took the kids to the beach about 3-4 miles down the road. We met up with some new neighbors we had met and had a great time. It is in an inlet, so the water is very calm - great for little kids! Hopefully things will get settled in around here really soon and we can enjoy the time we have here in Maine!

Chloe's preschool graduation...(catching up)

Chloe had a fabulous preschool this past year! Candy Harris in our ward taught nine little 3 and 4 year olds for 4 hours, 2 days a week! What talent she has!! She was absolutely wonderful and Chloe learned SO much and had SO much fun!! There were a lot of other kids from our ward in her class, so that made it even funner!Chloe is writing her name, letters, small words and also starting to sound out words. She is a smart and beautiful little girl and I am glad she could have so much fun this year in school.

At her graduation, her class performed most of the songs they learned throughout the year! Ms. Candy had Chloe sing, I Am Like A Star, all by herself! She did a fabulous job!!!!

Chloe is our little ball of sunshine! She is the friendliest little thing you have ever met and is also very compassionate. She loves people and loves to be a helper. She still sings or talks ALL day long and is great at keeping me company! I am glad she has one more year here at home with me before heading off to kindergarten. I am already getting sad about the thought of not having her here with me. What will I do? She literally talks to me all day!! Well, maybe Parker will have learned the ropes and will pick up right were she leaves off!

We love you, Chloe! Good job this year learning so much! You are a wonderful daughter and we are so happy you are in our family!

The Grand Canyon

Just a few pictures from our quick trip to the south rim of the Grand Canyon on Saturday. It was beautiful!! We left early in the morning and got back late at night. Every time we had it planned to go up there, something got in the way. So, since the packers and moving truck come this week, we decided it was now or never (or at least not for a very long time).

House hunting trip...

Portland Head Light

Here are a few pictures from our house hunting trip to Portland, Maine. It is beautiful out there and the air was crisp and clean. We are excited for the adventures that await our family! The "locals" we met told us how to get through the winter....just find an outdoor activity (like snow shoeing or cross country skiing) that you enjoy and get out often! Brrrrr.....but sounds fun!! After a frustrating day and a half of house hunting with no luck, we decided we needed to get some fresh air and decompress for a bit. We didn't have anymore appointments for the day. Chris wanted to take me on a nice date that evening. First we went to the Portland Head Light, which from what I have read, is one of the most photographed lighthouses in the country. After thoroughly enjoying our time there, we went downtown for dinner. Chris took me to a really cool restaraunt on an old ferry boat. I was even brave enough to try lobster and crab! It was a great evening and I can't wait to do it again! (hint, hint!!) And here it is....our home for the next couple years! Typical salt-box style house in New England - not the most attractive outside, but all redone on the inside. It will be a good house for our family. We are right by the coast so there are beaches super close! Anyone up for a trip to Maine?!!

While out in the countryside before looking at what we call "Uncle Tom's cabin" (long story), we drove by this super old cemetary and Chris just had to go look. He found a headstone that dated 1806 on it! There were also stone walls surrounding the fields around the area from way long ago. Chris was thrilled to see the walls again because it reminded him of his mission here in New England. It was neat and I was in love with the beautiful trees!! The sound of the wind rustling the leaves was heavenly. I have missed that living here in Arizona.

Sick of pictures of us yet? Sorry...we don't remember to take pictures of us very often, so I had to document them!

That's my boy!!!

I totally remember 4th grade!! I really do! I remember the friends I had and the start of who's cool and who's not. That part I didn't like about 4th grade. And to think that now my very own handsome boy has only one week left of 4th grade.....OH, I am getting old! How did he get so big so fast?!

Zach and Mrs. Barz - She has been a fabulous teacher for him this year!!!

Thursday night, his class and one other class put on a play about the Westward Movement. Zach got a speaking part as a buisnessman and did a fabulous job! My motherly pride swelled as I watched him perform his memorized parts. He did great!!! (Too bad my camera didn't! It's new and I am still figuring it out.)

Zach has done so well this year and has really grown and developed quite a lot. He has been on the Honor Roll and for most of the year. He has really developed a love for reading and can read a 500+ page book in less than a week! He is awesome and a totally smart little dude! We are quite the lucky parents to have him as our son!

Awesome job, Zach!! We love you!!!

You'd Think We Were In The Army

(FYI...Since this post some how got posted before I was actually done...I will finish it by summing up the trip....It was a success. We found a home to move into and we made it home after a very long day of travel to find the kids happy and lovely, all thanks to my wonderful mother who takes such good care of them. Thanks, MOM!!! We love you so much and miss you all ready. The movers come next week to pack us and we head out the first week in June! Yikes....so quick!!! (normal for us though...) I will post pictures after I get them downloaded on my computer.)

Have you ever wanted to travel the country and see different sights and experience different cultures? When I was growing up, I lived in the same house and same town since I was about 2 or 3. I lived there until I went to college at 18 years old.

I think I was a little naive when getting married (about a lot of things, actually) that the profession Chris was going to school for would not keep me in the same place. Construction Management - you go where the jobs are. Yeah, I guess that didn't quite click in my mind. It has taken a while for it to click, to be honest.

Moving can be kind of rough on my mental state for a bit. Maybe that is partly due to the fact that we have moved 5-7 weeks before I gave birth to 3 out of our 4 kids! That really wasn't fun being so pregnant and moving. Luckily, we were blessed with movers for most of our moves, so that took a huge burden off my shoulders. But, I guess it was probably easier moving with a baby inside of me than one extra kid to take care of while moving and unpacking.

So...as you may have guessed by the topic of this post...yes, we are moving again! And no - I am not even pregnant this time!! Fabulous!!! I may be able to get things unpacked in a few weeks instead of 6 months (or longer!!). Chris has accepted a job in Portland, Maine and starts the first week of June. Yep, we are once again quickly getting things figured out to be able to get out there when we need to.

Chris and I are actually on our way home right now from a house hunting trip. I cried multiple times on the way here and during the trip because I miss my kids - A LOT! This was my first time being away from Parker and I think it was only the second time being away from Chloe. They wonderful, fabulous thing was that my mom was able to come out and be with them the entire time we were gone. They have had a fabulous time with her! Trips to the park, baking with Grandma, and just having lots of fun! I think my mom will be wiped out after chasing Parker-pants around everywhere!

The trip was....well, stressful. But we did manage to take some breaks and enjoy ourselves. Chris took me on a nice date on Friday (since we didn't have any appts.). We went to the Portland Head Light, which was beautiful. Then went to dinner at DiMillo's Floating Restaraunt and I was brave enough to try crab and lobster. It was a yummy dinner and we enjoyed our time together very much.

Becoming A Doctor

Joy (my sister) did a fabulous job on her report and project about Karleigh and her disorder. She sent me a copy of her powerpoint that she made and it was fabulous and even made me cry. Joy truly is a very special girl and is going to do great things with her life! She has already done many great things with her life!! She is wonderful and I love her very much! Since I am not that talented at the computer and can't seem to figure out if there is any way to load her powerpoint on here, I am just going to retype the part that made me cry the most (yes, with Joy's permission).

"Becoming a Doctor"

By: Joy Clay
(2007)

April 14, 2005 was the day my life turned around. I got ready for school, but I had already missed the bus. My mom was going to take me and she was almost ready to go. As I walked down the stairs the phone rang and my mom answered it. A few seconds later I saw her tear up. A few more seconds later I heard her say, "Poor little girl." As soon as she said those three words I knew something was wrong.

A couple more minutes later she hung up the phone and with tears in her eyes she said, "Karleigh is having a hard time breathing and she's having seizures. They had to bring a helicopter to get her because an ambulance would take to long." I started to cry. A rush of sadness just fell over me. I was scared and I didn't want to go to school.

My mom drove me to school and she told me that if I couldn't handle it any more she would pick me up. I walked into my classroom crying and my teacher told me to go to the school counselor. I couldn't stop the tears from coming out of my eyes. My school counselor was very kind and she helped me be happier.

A little while later, the school counselor asked me if I wanted to call my mom and see how Karliegh was doing. I called her expecting a positive answer and she said, "Not to well." I had a melt down again. I don't think I've ever cried as much as I did that day. I decided that I could go to gym class. A couple mintues into class the office called and said, "Will you please send Joy Clay to the office."

I left class and when I entered the office I saw my mom crying. She gave me a long hug and said, "Karleigh died." I remember being so sad but not being able to cry because I had already cried all my tears out. We walked to the car where my two brothers waited, crying.

The next morning we got on an airplane and went to Colorado. A couple days later we had the funeral. I remember falling apart when I saw her in her casket. I never though that this would happen to me.

After the funeral I decided that when I grow up, I would become a doctor that works with the disabled children like Karleigh. Karleigh is the person that inspires me to pursue my dream job.

What other choice is there but to.....

LAUGH!! (hopefully soon)
So, I haven't had a one year old little boy in well...about 9 years now. I forgot what little troublemakers they can be! While being the sweetest and cutest little one year old around...oh, he can try my patience and my sense of humor.

Saturday I had made a goal in my mind that no matter what, my house was getting cleaned from top to bottom (almost), even if I had to stay up all night. Life has been busy and aside from straightening up, things were getting pretty crusty around here! SO...time for a serious cleaning. The whole family pitched in and we got it done. Floors were vacuumed, swept and mopped, kitchen cleaned, bathrooms scrubbed, bedrooms cleaned and dusted, etc....you get the idea. Everything was clean, not just tidy. Oh, it felt good. My mind can now let go of that nagging feeling that my house is crusty and needs attention and now I have given myself permission to do some fun stuff this week. (Yes, I have a mental block on doing fun stuff if my house is crusty!)

Well, I didn't think that only 3 days later, I would be scrubbing the kids bathroom AGAIN! So, here is the story. Like I said before....I have a one year old. A very busy one year old that is also figuring out that he has an opinion and can voice it. He is also quickly figuring out that he is just about as big as his older sister (who is almost 3 years older than him!) and that he can get a reaction from her...almost by just looking at her or standing right next to her in her personal space!

I filled up the tub, got both kids in and then dumped their toys in. As they were playing and splashing and having a great time, Parker would occasionally reach over and pinch Chloe - his new favorite thing to do to her. She would shreak, tell him no and they would be back to being friends again.

I stepped out of the bathroom for just a minute and was just right down the hall when I heard Chloe yell, "MOM! Parker just pooped in the bathtub again!!" Yes, this has happened before! As I was coming back down the hall, I told her to jump out of the tub, which she already had....since she knows what to do....since this has already happened a couple times!

There was my boy, my one year old fabulously cute little boy, playing with his floating poo in the tub! My stomach felt sick! Let's just say....corn and craisins from dinner last night made an appearance this morning! So, out with him, scooped the toys out and put them in the sink to be sterilized, drained the water so I could clean up the poo and scour the tub...again. Nasty!

While I was busy scrubbing and cleaning, my darling little one year old thought it a great place to go pee on the stool and then came over by the tub to watch me and did it again on the floor!!! Seriously kid!!! After cleaning the tub, I stuck both kids back in and started cleaning all the bath toys, bucket and sink. As I was doing so....my busy one year old was hard at work pulling Zach's loafa spongey-thing apart and throwing the pieces in the tub!

Bathtime was officially OVER!!! I got them washed and dried and clothed, and now this darling little one year old is walking around pulling every toy out that he can find. That is just fine with me little dude because at least now, you have a diaper on!!!

Really, this little boy is the super-est cutest thing ever! But he sure is busy and he sure is just a BOY!!! All BOY!!! But I wouldn't trade him for anything! He is my squishy, cuddly, handsome fella that I squish and kiss all day long!!! So, yes, I let myself laugh a bit today about our bathtime adventures. I am sure a while down the road I can really laugh....as long as this doesn't turn into a habit!!!

Diagnosis Info

My fabulous sister, Joy...who is extremely smart and fabulous and wonderful and beautiful and awesome...asked me to tell her about Karleigh's diagnosises for a paper she is writing in school. So I have this recorded for later, I just copied and pasted what I wrote to her so it wouldn't get deleted or lost. I think there are some things missing, but my brain has shut down for the night! Anyway - you can read on if you want to learn more about Karleigh and the issues she had. _______________________________________________
Hey hotness, fancy-pants Joy –

OK – so since I have been cleaning since 6:30 AM and my body and mind are wasted…I will try to write down stuff you need. If I miss stuff or don’t explain it enough, let me know and I will tell you more. Sorry if I ramble – I probably will!!!

Main diagnosis – Mosaic 5q deletion. Her missing sections were between the 13th and 21st section on the Q side of the 5th chromosome. This main problem then caused many sub-diagnosis’s to which affected her greatly. I will just list them off and then try to expound on them a bit. Let me know if you want more info. Her diagnosis was the only one of its kind that her dr. could find. She searched the databases and could only find kids with the full 5q deletion. Hers being a mosaic meant it affected some cells and not all – which in turn made her better off than those with a full 5q deletion. Still much to deal with on her part, but we are grateful there wasn’t more! So basically, some of her cells were completely fine, others had the deletion. We did not find out this diagnosis until she was about 7-8 months old, though. We found it out through a skin biopsy taken during surgery for her g-tube at 6 months. They sent it off to be tested for all kinds of things and that is what they found. Blood test months prior showed no sign of anything wrong.

Cerebral Palsy (CP) – She had low muscle tone which made it hard for her to hold her head up, support herself in sitting and standing positions, make her muscles move right. But with that low muscle tone, she also had a lot of spasticity in her muscles which would be very apparent when she would arch. This also caused her to not be able to move her arms, legs and head where she wanted it. With this, she also had the ATNR reflex, which is normal in every newborn. For example, if she brought her left arm and hand up to her ear, then her head would turn to the right and the right arm would go out away from her body. Babies outgrow this by about 4-6 months or sooner, but she wasn’t able to. This caused her to never be able to bring both hands midline (in the center of her body or face) to hold onto toys or other things right in front of her. This frustrated her a lot because she very much wanted to hold onto her toys and to play. She would work so hard just to get her hands to pick something up or to even swat at it. She had to concentrate so hard to even be able to get her arms and hands to do what her mind was telling it to. The look of determination on her face while trying to get her body to move right was so inspiring, yet so hard to watch. We take so much for granted! She had a little wheelchair as well as some other special chairs for sitting in. We got her a stander to get her in the upright position and put weight on her legs about 4 months before she died. We had a special bath chair that would strap her in and not allow her to get her face in the water because of her aspiration problems, which I will talk about next. She had weekly visits with her Physical Therapist, Occupational Therapist and Speech Therapist along with all her dr. visits. She wore AFO’s (Plastic molds made to fit her foot and legs) to get her and leg muscles and tendons to hold her foot in a normal position since she wasn’t load bearing and to also help support her ankles when we did stand her up. She would wake up 10-15 + times a night for about the first 2 years. Many times it was due to her low muscle tone and she just wanted to be readjusted or turned to a different side or position. Other diagnosis terms they gave her in the beginning – torticollis, plagiocephaly, hypotonia (low muscle tone).

Feeding issues – From day one, Karleigh had feeding problems. She could never nurse good and I remember it almost tickled when she would nurse. She did not have a strong suck. She would scream and scream at every feeding, had awful reflux and cried all the time. Zach had had problems nursing, so I thought maybe it was just me not doing something right. At 11 weeks old, I quit nursing and bottle fed. She still had the same problems. Finally, around 12-13 weeks old, I took her into her pediatrician because she had screamed for 2 weeks straight almost day and night. I couldn’t figure out what to do anymore. She sent us for an upper GI scan and they found out she had reflux. This then started the whole process of figuring out what was wrong. They put her on meds (Zantac and Reglan) and thought that would solve all our problems. We then went to the Children’s Hospital in Denver and started figuring everything else out. Along with the reflux, she had pretty severe aspiration problems (food or vomit goes in lungs). She was very fortunate this never turned into pneumonia. Chest x-rays were routine in trying to figure out unexplained sicknesses – just double checking to see about pneumonia. Also, other big GI x-rays and scans and tests. She needed someone around her at all times to get her rolled over if she did start vomiting. Sometimes the gagging and retching wouldn’t allow her to take a breath for a long time. So, having her right there so you could blow a quick startling blow of air into her face would often help her take a breath. The gagging could get pretty violent and scary and she would be pretty wiped out after it.

Karleigh was born at 6 lbs. 14 oz. (everything saying she was fine and healthy) and at 6 ½ months old she weighed only 12 ½ lbs. At 6 months when they found out about the aspiration problems, a week later had her in for her first surgery to get a g-tube placed in her belly and also a Nissan fundoplication (stomach wrap to try to prevent the reflux – which in her case, it didn’t work and she would still reflux and then aspirate). The g-tube was wonderful, but the Nissan wasn’t. She had many complications with it (a lot of severe retching and gagging – mostly because it was wrapped to tight) and ended up about 8 months later having a second surgery to have it loosened and her stomach pulled back down into place. The wrenching and gagging had caused a hiatal hernia (the stomach goes above the diaphragm). She eventually had a gj-tube placed and that relieved so many problems. The gagging was still there, but not nearly as much, nor did she have much in her stomach to aspirate on when she did reflux. This feeding tube used the same original hole in her belly, but it was not just a stub into the stomach. We went in about every 3-4 months to the Interventional Radiologist and as she lay under the x-ray machine, he would insert a longer feeding tube through the stomach and into the first part of her intestines. This would make the food bypass the stomach so she couldn’t reflux and also make her much more comfortable. It did wonders for her! The only bad thing was that she would then be constantly hooked up to her feeding pump almost 24/7 because her special formula had to be pumped in very slowly over the entire day and night. (PS – her formula had to be a very broken down kind so it was easily digestible – it would cost us $1200/month if we didn’t have the awesome insurance we had back then!) Luckily, they gave us a handy backpack type thing that we could carry around with her and also hang it from her IV pole that hooked on her wheelchair.

At about 6-7 months, before we got the Mosaic 5q deletion, her neurologist had her do a cat-scan on her brain to determine her brain function and see the structure of her brain. He also did a EEG to look for seizures. She did end up having Complex Partial seizures. They were not easily detected because it caused her to stare into space for 15-30 seconds. After we knew what to look for, we could tell and then she would take about 10-15 minutes to come around fully. Then she would be back to her normal self. She was put on Phenobarbital for this and it worked great for her.

About this time we also took her to a Pediatric Ophthalmologist and he said that she was having a very hard time seeing. She got some little tiny glasses and then had check-ups on her eyes often as they would change as she grew. It was hard to believe the eye dr. that she couldn’t see well because she did not seem like she had much of a problem at all. She hated keeping her glasses on and would often swat at them with her hands to knock them off. Since they were hooked around the back of her ear, when she would swat them, it would often push them right into her mouth and she would not be able to get them out. Or the little nose pieces would go up her nose. So uncomfortable.

Karleigh had a hard time regulating her body temperature. When she was a newborn, we couldn’t keep her warm. She was always chilly! Then as she got older, she would get so hot and overheated with the amount of energy it took just to sit in her chair or to wiggle around or do her therapy. She also was diagnosed with RAD – Reactive Airway Disease. She had a hard time breathing in strong wind and also cold temperatures. In a sleep study she had, they found that she needed oxygen at night as well (which was pretty much IMPOSSIBLE to keep on her!). We had 2 big ugly oxygen tanks in her room at the bottom of her bed. Her breathing was very loud and rattle-y sounding – day and night. This was partly because of her CP, but also because she had big tonsils and adenoids. She went in for her 3rd surgery about 3 ½ months before she died to get her adenoids out and ear tubes put in (ear infections happened ALL the time!! ALL the time!). They would not take her tonsils out during that surgery because it was too risky. She would have had to go in later in the year probably to get them out. Her ENT was convinced that she would end up in the ICU if we took out both adenoids and tonsils at the same time because of her breathing problems as well as her other issues. No thank you!

Since there were no other known cases of someone having a Mosaic 5q deletion, everything was a guessing game for her dr’s. She was at a greater risk of developing colon cancer (a 5q deletion symptom) and at the age of 10 would be required to have yearly colonoscopies. Once characteristic that I remember her dr. pointing out was her fingers and how they tapered at the ends by her fingernail. That also is a 5q deletion symptom. She had quite chubby little hands, but they tapered at the ends – quite cute if I do say so myself!!!

Her hearing was fabulously fine!! She was super smart and we felt bad we didn’t know quite how smart she really was for a long time. It was hard to know since she couldn’t tell us in word or body movement. She was very aware of her surroundings and communicated mostly by talking (in her own way), crying or through her eyes. If you gave her a choice of what shoes to wear or what shirt she wanted that day, she would stare at the one she wanted. When you would confirm it, “Karleigh, do you want this one?”, she would get a big smile on her face and sometimes laugh or get really excited. She loved bright colors and being outdoors. She loved animals, especially our dog, Mickey. She LOVED soft music and would sit totally still if we were at a concert or during the sacrament songs at church. Then when the music was over, it was back to wiggling or playing….or crying. She loved for Zach to push her around fast in her wheelchair and loved to play peekaboo. She was often sick, but most people didn’t even know because she always smiled and tried to be happy when she wasn’t hurting. She loved to lay on the floor and have you put a blanket over her face and then pull it away really quickly. She would squirm so much with excitement while playing that that one time she almost flipped herself over onto her stomach….which was an amazing, amazing thing!! She couldn’t do that normally. She was a total teaser and totally knew what she was doing when she teased! She loved to be rocked to sleep. If she wasn’t asleep when it was bedtime, right when you would lay her down and turn on her musical frog, she would start to whimper and give you the biggest, saddest puppy dog eyes that you had ever seen. It was so hard to leave when she would do that, so she often got her way and I would stay and play or give hugs and kisses just a bit longer. She loved to snuggle and if you had her head on your shoulder, she would try to get her arms around you and squeeze as much as she could. She made many improvements in therapy the months before she passed and was doing so well health-wise. Sicknesses had slowed way down and her belly was not as temperamental at the end of her life. She started advancing a lot and it was so exciting! We saw a glimpse of what it will be like for her someday!

Ok Joy - well – I have a feeling that I am missing something, but can’t really think anymore tonight. Let me know if you can think of anything else, and I will think some more of what I am missing. Good luck on your report!! I am sure you will do fabulous! Don’tcha remember….yer the smartest and hottest sister of us all...and the nicest!!! Let me know how it goes and send me a copy!

Love you lots!!!
Tracy
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Here are some pictures of some of Karleigh's equiptment... Taken last year when we decided we could finally part with them. I know - took us a while, but now they are being used plenty by other special little kids!

This wheelchair was such a part of her that it was honestly the hardest piece of her equiptment to let go. We have heard that it is being used now and we are thrilled that Karleigh is still helping others.

Smeared mascara....

In thinking about posting about today, I almost decided not to. But as I looked back at last years post, I realized how important it is for me to write down the day and the feelings and the things we did. Why didn't I want to write about today? Well, as you have probably already noticed, I haven't been in the blogging mood lately. Quite honestly, life is just hard sometimes and sometimes I feel like I just need to take things a day at a time. So that is what I have been doing.

I guess I thought last year that since I finally came to terms with Karleigh's death (meaning the awfulness of that day), that every other year would be a walk in the park compared to the first few years. Let's just say, I was naive. While this anniversary isn't nearly as painful as the others, it still hurts. 5 years! That is a long time. I miss her. I miss her more than I can express on this blog. This isn't and easy road I have been asked to travel. It hurts. These anniversaries are just plain hard. So there. I said it. 5 years out and my heart still longs for my baby girl. It always will because she is MY sweet, precious, and perfect little Karleigh.

So the activities for remembering this sacred day in our family actually started on Saturday. It is a new tradition I started this year all thanks to the suggestion from my fabulous friend, Mary Jane, whom I love and adore and who also walks this difficult road. Since I miss my Karleigh girl so much, what a great thing would that be for me to be with my other girl - my Chloe girl! I love that idea! Chloe makes me happy! How can you not be happy around her?!! She is a ball of sunshine wrapped into a tiny package! Chloe and I went with some friends and their daughters to the Hale Theatre to see Princess and the Pea. While she didn't quite understand it, she still had a great time. Her favorite part was intermission where she got to go down to the stage with all the other little girls and dance around like princesses. She stayed down there the whole time and didn't want to come back to her seat. Afterwards, I told her we could go get some lunch, but all she wanted was "a big glass of milk!" So we headed to McDonalds to get her a big glass of milk, because coming home and getting some milk was out of the question! =) This is a tradition I hope I can do every year with my girl! Just she and I - spending time together.

Today started out just like any other day. Chris left for work (although he was only going to work a half day - yeah!). I got Zach and Chloe off to school and came home to get ready to go to the store, do household stuff, play with my squishy and adorable baby and talk on the phone with my mom and sister. When Chris got home after picking up Chloe from school, we headed to the store to pick out flowers, pots and balloons. It was so nice having Chris come with me this time to pick out the perfect flowers.

We decided this year that we wanted to keep it small, but meaningful. We potted a couple pots of flowers and delivered them to two wonderful families who "know." After dinner we all wrote a note to Karleigh on a balloon and then went out in the backyard to send them up to heaven. The kids were so excited to send the balloons to her! They love this tradition (of which I forgot until I read last years post!). I am so grateful for my wonderful children!! Their happiness is so contagious!

I got the kids bathed and into bed and then went downstairs to do dishes. I turned on some quiet, calming piano music and got to work on the dishes. (cleaning seems to be one of the best ways for me to ponder things) I felt like the day had been good, but still so busy that I didn't have much time to ponder. I needed to ponder about my girl. I felt like I didn't want this day to end because then we have to really start heading down the road to year number 6. I also decided that I needed to come post about the day for my own memory. I don't have the best memory, ya know (as my sisters and hubby will attest!)

There is one thing I know for sure today....Karleigh was near all day. I felt her. I still feel her as I type this. Not long after I came up to type this, Chris came up to head to bed. He came over to chat for a bit and let me know my mascara was smeared. =) I shared some of the feelings that I was having and he shared some of his. He reminded me of a prayer he said before Karleigh died that helps him remember why things will be ok. I had forgotten today. I had forgotten the prayer I said the night before she died - of which is too personal and sacred for me to type on this blog. I am grateful that Chris kindly reminded me of his own memory, because it brought back an important reason that I can cope with her death.

Saturday we plan on having our family day. We are going somewhere to take a hike and get outdoors and just be together. There is something about being outdoors that can just heal my soul. And if I am there with my family - all the better.

I am grateful for a gracious Father in Heaven that calms my troubled heart time and time again. I am grateful that He blesses me with opportunities to feel Karleigh near. I know He loves me and is aware of even my smallest needs. He has blessed me with the knowledge of my Savior and His wonderful Atonement and the Plan of Salvation that can make all this heartache bearable. I am indebted to Him for His unconditional love for me despite all of my many imperfections. I am grateful that He has never left me, even when I was less than deserving of His love. He hears me. That, I know without a shadow of a doubt!

I love you, Karleigh. Please never ever forget that!

Here are the pictures from the day.

BOO - We aren't coming....

Sorry to say that we can't make it up to Indiana! Oh, I so want to!!! But there is no way I can feel comfortable about possibly passing along what we have been hacking for the the last few days! It has been miserable to say the least!!! MISERABLE!!! Chris is actually flying in tonight to help drive us home. I think I would have been just fine if I hadn't gotten so sick. I am still not feeling better, but definetely much better than a couple days ago.

Anyway - I am sorry that we can't come! I will try to make a trip out there soon. I love you all!!!

Indiana friends....

Hey all my long lost friends in Indiana...that might actually read this blog.....

Change of plans....It looks like on my long drive home from North Carolina next week, I am going to just take a little jaunt out of the way =) and head on up there to good old Indiana! How fun and exciting to be driving the freakin' country (yes, Marci, I said "freakin'" again) with my 3 kids!!! Really though....we are having a good ole' time here and everything went almost smoothly on the way out. We actually made it! It helps that I have 3 excellent kids and then half way through the drive Marci and kids were with us. Marci was a huge help being Cinderella as she put it while I did the driving! Her kids were great on the trip too!

Anyway - I was thinking that it is kind of impossible to get around to see everyone I would love to see in a day, so if anyone is up for a lunch or dinner play date at the park....send me a comment or email!! Tenetively, I am planning on getting in late Tuesday night, and hoping to see friends on Wednesday. But Chloe and I may be coming down with the sickness that has been floating around the house. So, we may have to postpone the trip home until everyone is well. We will not bring sickies with us (unless they are hiding and we don't know it....for that you could just blame it on Walmart! I always blame unexplained sicknesses on Walmart!) Anyway - let me know if you are around for a visit on Wednesday and spread the word! Can't wait!!

Crazy....just maybe!!

So...if you wanna know what the kids and I are up to for the next 3 weeks....well, hop on over to my sister, Marci's blog. I don't have time to do a post about it right now, and I like hers better than one I would do anyway....so.....enjoy. The kids and I are thoroughly excited though! NC, here we come!!!