It's a Snell World

Welcome Ossie!

2012-02-14T17:13:00.003-07:00

Yep we have a new baby!!

Ossie Ray Snell was born on February 10, 2012 @ 11:56 a.m. Weighing in at 8lbs and 12oz, and 22 inches long. It was a fast but hard labor, only 3 hours.

We are completely in love with this little man. He is a good eater and has already started to gain weight quickly. He loves to be cuddled, and I hate to put him down or give him to Daddy.

He also is getting better each night at sleeping longer.

This new journey is so much fun. I can't wait to see what this little man brings to our lives!

2012-02-06T17:47:00.002-07:00

Just in case you check in to see if we have a baby, the answer is NO. This little guy is stubborn and does not want to come out. I will be going into see my doc tomorrow and we will be discussing inducing me sometime this week. I am almost to 40 weeks and continue to get bigger everyday, it is time to be done and hold this babe in my arms.

Arna is home sick with the gooey boogers and I have to suck her out often. I also have a bit of a cold, just a cough and headache, but it is enough to drive me insane. Every time I cough I pee.

I hope my next post will include pics of the boy or at least an idea when we will see him.

Good eating today

2012-02-02T09:14:00.002-07:00

So since it is a slightly snowy day outside my door I am making soup today, please join me this is a yummy one and it is a double duty recipe.

Chicken Tortilla Soup/Burrito Filling

What you'll need

Crock-pot
1 can pinto beans, drained and rinsed
1 can black beans, drained and rinsed
3/4 cup of your fav salsa
1 cup frozen corn
1 small can enchilada sauce. we like elPato, it is called a hot sauce in a yellow can(not too hot)
1 can chicken broth
2-3 chicken breast
flour tortillas for burritos

place chicken in crock first and cover with the rest of the ingredients. If you want soup add the stock, if you want burritos don't. Cook on low for 4-6 hours. Remove chicken and shred, return to crock and stir it all up. Serve with sour cream and cheese.

Enjoy! this is by far the best and easiest soup/burrito to make.

Recipe of the Week

2012-01-23T17:28:00.002-07:00

So in the spirit of giving to others, and helping all moms out there with dinner ideas, I am going to find, try, and post a new recipe each week.

Today,

Italian Chicken and Rice

What you will need: crock pot

2 chicken breast
1 packet Good Seasons Dry Italian Dressing.
1/4 cup water
1 can Cream of Chicken soup
1 8oz package Cream Cheese
1 package frozen mixed vegetables (corn, peas, carrots, and green beans)
Rice (could also use egg noodles)

How to put it together:

Place chicken in crock, mix dressing and 1/4 water and cover chicken with mixture. Cook on low for 6 hours, high about 3-4 hours. Remove chicken and chop into chunks, return to crock. Add vegetables, soup and room temperature cream cheese, mix well and cover to cook 30 minutes longer. Cook as much rice to feed your size family.

Plate up rice and add chicken to the top of the rice.

I hope you enjoy this as much as my family has!

Next week: Dessert!

This and That

2012-01-23T08:28:00.002-07:00

So time continues to pass me by, I am now 37 weeks and 3 days and ready for this baby to get out. At my last doc visit I was dilated to a 2 and 60 effaced. I spent the week getting all my things in order just in case. I spent the weekend have contractions that were more of a discomfort than anything, and they were not very regular. I tried all my know tricks to help them along, taking walks and doing laundry(going up and down stairs), but to no avail, he is stubbornly staying in. It seems anytime I lay down for a rest/nap my contractions stop completely, so exhausting, I can't stay moving all the time. I was very sure I was getting ready to have him, cause I have cleaned like crazy, and folded all the laundry. That whole nesting thing is just silly, I think it is just that you stop and look around and see that you haven't done anything for awhile and it gets to you so you start cleaning everything within an inch of its life. Don't get me wrong, it is nice to see everything in its place and the inch of dust gone from your dresser.
I will see my doc again tomorrow, and I am hoping that all the teasing contractions over the weekend did some good.

One of the biggest reason I wanted this kid out this weekend is that the 24th is my brother-in-laws birthday and the 25th is my sister-in-law and her daughters birthday. Not that sharing a birthday with an Uncle or Aunt would be so bad, but a cousin is a bit more difficult, think how hard it would be to have parties and such.

But enough of my whining. As for the rest of the family life has been good. Kenna stopped sucking her finger back in November and has not had a cold all winter long, she was even a brave girl and got the flu shot not the mist. Arianna has only had minor sniffles and stayed out of school a few extra days before the Christmas break. A week before Christmas my dad had a minor stroke that kept him in the hospital for 12 days, they did let him out for Christmas day and he spent it at our house. He is recovering well, his brain is still all there, he is just weak on his right side and it doesn't always respond to what his brain tells it to do. they also found that he has central apnea and now he has c-pap to sleep with. The took a good look at his heart and found the blockage that caused the stroke and put a stint in, his color looks better than it has in years. I only wish that his general doc had listened to him months ago when he told him it felt as if there was an elephant on his chest, maybe he would have seen cardio and had his blockage fixed and the stroke would never had happened. Today he is going in to have shock treatment on his heart to try and fix the arrhythmia that was caused by the stroke, hoping it will give him more strength and he will be less tried all the time.

What a busy and tiring past month this has been. PLEASE pray with me that baby boy will come out very soon and very quickly. I am done!

Pics of our boy!!!

2011-12-09T10:14:00.002-07:00

All is going well. Ossie is growing big and fast, he has a very large head, courtesy of his daddy. I am now 31 weeks and I am counting down, can't wait to meet this little man.

Monday in photos

2011-11-07T14:15:00.005-07:00

Hiking in Zions.

Arianna loves to be in the backpack.

Arianna and her nurse Jodi on Halloween. Arna as Miss Peacock

Kenna as Tigger Lilly

Our family on Kenna's Baptisim day

Kenna and her sister missionaries

Kenna and her Papa Rod, he baptizied her.

Where does the time go?

2011-10-12T09:22:00.005-06:00

I sit here a see that it has been two months since I posted, shame on me. I guess I really haven't had my heart into blogging much.

Since my last post we have celebrated Kenna's 8th birthday. We took a short trip to Zion's NP for some r&r and fun with her. We went to see The Little Mermaid at Tuachan. And really just had a good time being a family. Arianna is back in school and loving it, they are doing swim therapy this year, but she has yet to go because she got a cold. She is still fighting the snot, but doing good otherwise. And the biggest news of all, we are having an BOY!!!! Kenna is so very excited, that's what she wanted. I had a feeling early on that it was a boy, just felt so different from the way I did with my girls. He is very active and growing very fast. We still have not found a good name for him, hard to find a good boy name that goes with Snell that has not already been taken. So for now we call him Ossie.

Kenna is very excited for Halloween this year, she is Tiger Lilly from Peter Pan, and Arna is a Peacock. We have been to a few Halloween parties already and their costumes are a hit. My mom made Kenna's and I found Arnas at Gymboree(on sale).

Next up is Kenna's Baptism on the 5th. She is so very excited, and so are we. She is such a wonderful example to her family. She loves going to church and makes sure mom is awake and ready on time.

My next post, which will be soon will have pics of the girls and their costumes, a pic of the boy, and maybe my profile. Thanks for keeping tabs on us even though I slack.

Random Things

2011-08-22T09:08:00.002-06:00

Since I really don't find the energy to do much these days, lots of things have been neglected, such as this blog, the laundry, the dishes and well just about everything in the house. I do however manage to bathe, clothe and feed the kids, me on the other hand I really don't like much of anything to eat, I still struggle to get food to the baby in my belly but I keep trying.

So Kenna has been in the second grade for 4 weeks now and is really enjoying it. She has one really good friend in her class, makes her feel better. She is doing well with spelling and math, and loves art time. It really brings me back to the days when i didn't know how to read and spell, and math was a struggle, I hope I can be a good teacher to her.

Arianna will start school on the 29th, she wishes it was now, she is bored and done with summer. She needs her own time to learn and play away from home. I remember when I first put her on the bus two years ago and thought how will I get through the day with out taking care of her? How will she be without mommy there to watch over her? Now I know better. Although it is still hard to say goodbye on the first day, I know that she is in good hands and that she loves to be there. I know I can not provide everything for her everyday and I am glad there is a school that can do all that she needs.

We had our 14 week baby check last week and I am measuring at 15 weeks. Very interesting. Either my dates are off or this is a really happy and big baby. I can alreay feel little thumps and flutters. Can't wait until the end of September to find out if it is a boy or girl.

We also went camping over the weekend, Kenna had so much fun riding on her four wheeler, she even took me for a spin. On our way to our camping destination we stopped in Heber to have some dinner at Arby's. While there a gentleman walked up to our table and put his hand out to Matt and said, 'It would make me very happy to buy your dinner tonight. You have such a special family.' and gave Matt money. I of course started to cry, being that I am pregers I do that. We all said thank you and the man left. I asked Matt yesterday how much the man gave us, and he told me $50. I could not believe the heart of this man. Someone we don't know and would never meet again. All I can figure is that he must have been touched in a very personal way by someone with special needs. I will be forever grateful for his example to my family, to the gift of love he shared. I will someday pass it forward.

Big News!!!

2011-07-20T16:22:00.002-06:00

So we have been to the doctor, and all is looking good. So I think it is time to share. We are expecting a new baby in Feb!! I can't tell you all how excited and scared I am for this new adventure. It has been 7 years since i had to care for a normal baby, don't know if I can still do it. Arna is truly easy when it come to so many things, I just hook her up and the food goes in while I go and do everything I have to get done. She is happy to just hang out and play with her toys, she doesn't like to be cuddled. I just don't know what this baby will bring.

Kenna is hoping for a brother, she thinks that would be cool. I also think it would be great to have a little copy of Matt running around.

I have been terribly sick with this baby, always nauseous, and so very tired. I don't remember it being like this with my others. but I am also a few years older too!

Life is good and always keeping us on our toes!

A little tease

2011-06-20T03:26:00.002-06:00

just a few of my favs!

No more teasing!

2011-06-19T21:09:00.002-06:00

The Internet is up and running and I have my own computer!!! I will be spending time here getting the pics from Florida up.

Oh and by the way....Today is our birthday!!! I still can't believe Arianna is 5.
I will also be spending time talking about the last five years and the joys we have shared!

More to come!!!

So Much to say, so little time

2011-04-26T17:53:00.002-06:00

We have been to and returned from our Wish trip to Florida. What a wonderful time we all had. I am still weepy when I think of all that was done for us from those who volunteered to make our time there worry free. no cooking, no cleaning, and lots of love shared.
There are so many pics and some good videos to share, and I will I promise. I am trying to get it all worked out on the computer.

I just wanted to say to you all for now that we are doing really well, and Arianna is as happy as ever. I will spend a few days with my laptop and try to post all the good and fun stuff that we have been up to, please be patient with me.

Kauiai was Ab-Fab

2011-02-09T14:41:00.002-07:00

We did it, and we survived the flights. Let me tell you flying with a kid on oxygen and in a wheelchair is no easy feat. But we had great help and admiration from many flight attendants and many other passengers. Arianna did so well on all four flights, never once complaining. I however was a bit cramped sitting in the middle seat, Arna got the window because she was in a car seat and for safety and evac purposes that was the best place.
The island was beautiful and warm, so lush and green. Our hotel room had a great view of the ocean and you could hear the waves crashing! The beaches are pristine and the water was warm enough that Arna took a dip. We mostly played in the pool so that we could keep the water out of her nose, how do you explain to docs that your kid aspirated sea water! Kenna is a natural in the water, I had a local tell me she would be great on a surf-broad, she wasn't to keen on the idea yet. We had a Monk Seal that liked to hang out on the same beach with us sunning himself, Kenna loved to just watch him.
We took a hike with Arna in a pack on Matt's back, she laughed to whole 2 1/2 miles. It was on the cliff coast line, the only way to get to ship-wreck beach and the great shell hunting. Kenna only complained on the hike back, she had got her shells and wanted to be back in the car.
We got Kenna to snorkel at Lydgate park, very calm waters due to the man made wave break. We ate fabulous local food, my fav was the Kahlua Pork.
Kenna found a coconut and we tried to bring it home, but it had bugs and the USDA would not let us take it, that's ok Kenna still thought it was cool to have one for a little while.
We did some shopping and a lot of relaxing and enjoying the company of our family. I say a huge thank you to Marilyn, this truly was the greatest gift for us all. to be able to celebrate the birthdays of two very special women in our lives. Thanks for the trip, we will never forget!

I have many pics and videos to share, and will do as soon as my computer gets fixed.

Upon arriving home I learned that sweet Lily had gone to be with Jesus and her big sister Charlotte on Sunday morning. Our hearts are broken, and she will be missed. Thank you sweet girl for sharing your sweet spirit with us all. Please pray for comfort and peace for her parents and family.

I am lame with this

2011-01-20T12:52:00.002-07:00

I saw today that I have not updated since Nov, and that is just wrong. So much goes on and I just don't want to miss it, and I forget that I should share it with you all.

So in December, Arianna had surgery on her eye, they found an impacted sac connected to her tear duct system that could have lead to serious and unknown infections. The new duct tubes are working well, and her eye is looking great. She did get a small infection and over it quickly with meds.
We had a wonderful and quiet Christmas, our first in this house. It was great to decorate, hated putting it all away.
The new year has been good, no illnesses!!! I was, however, beginning to get concerned with Arianna's weight, she is really thin and long and bones started to poke out. After a visit with our ped we found that she is under weight by about 3 lbs( she weighs 32.9lbs). And with a full blood panel we found that she is anemic, has low blood glucose, low vitamin D and her calcium is low. Her ped is working with nutrition to get all the right stuff into her. I have been slowly increasing the amount of food she gets, its hard when she doesn't tolerate high volumes of fluid in her tummy.
She is burning allot more calories everyday, she is crawling like a pro. I am have a hard time keeping up with her. I will try to catch it on video and post it soon. She has also learned that you can stand up in a crib, not good for me. I am now totally scared that she is going to fall out on her head. The bed we would like to get for her is still under development, and we don't know when it will be available. My neighbor has offered to help Matt design and build something that will suit her needs and grow with her.

In just two weeks we will be heading to Kauai as a family. My MIL is taking hers boys and their families to the island to celebrate her 60th b-day and her mothers 91st b-day. This is going to be fun. Kenna has been talking about this trip for two years, and as the departure date approaches she is getting more and more excited, she can't wait to see the ocean.
I on the other hand am getting a bit nervous, not because I am flying, I am good with that. It is the traveling with Arianna that has got me on edge. All of the things that must be packed and all of the new rules for flying with liquids and such. I spent an hour on the phone with the airline and with TSA just to get all the info for her meds and food worked out, and the proper documentation for her oxygen concentrator. i have had to have both her ped and pulmo docs with letters stating why she must have all of her stuff, not that TSA will really read it, they just want you to have it. I will have to bring all her food in my carry on luggage to prevent it from freezing. Our flight goes from SLC to LAX with an 1 1/2 hour layover, and then five hours to Lehuie. I hope I can keep the kids happy and entertained.
I will post as many pics as I can of our wonderful vacation!

Hope all of our friends are doing well. Please know that I do think of you all often.

Here we come.....

2010-11-10T14:24:00.002-07:00

So after much prompting by friends and family I out in our Make-a-Wish paperwork. I got the call on Monday that they would be more than happy to give Arianna anything she would like!!!! We are planning on Disney World, I know that with all the work in the world we would not be able to do this trip on our own. I can't tell you how happy this makes me! We will plan the trip for the spring, winter time is just tricky for us.

Arianna will be going in on the 1st of December to have her tear ducts reconstructed, should be an out patient deal. Pray she agrees with that.

We had pics of the girls done last week, they turned out so good, considering both girls seemed to get cranky five minuets into to the shoot. I will see if I can post a pic or two with my photographers permission. the libaray comps wont let me copy it to my blog.

well thats it for now!

Where has the Time gone

2010-10-19T16:50:00.002-06:00

I noticed that I have not updated in a month, that is far too long. Being that I don't have a computer or Internet at home I don't get many chances to do so.

This is what has been going on.....Arianna is doing well on her new neb meds, her lungs look the best they have ever been in her life, amazing. Her heart is looking good. I came down with Strep last Tuesday, and was down for two days. On Thursday I felt better and thought I would do some laundry. I walked into my scrapbook room after changing the loads and stepped into squishy carpet. Our water main broke. Two days without water. Then Kenna came down with strep on Saturday and Arianna followed on Sunday.

It has been busy and crazy in our home, I wish i had more fun and exciting things to tell you all.

Please pray for Lilly our newest Trisomy family member.

Happy Brithday big girl

2010-09-20T11:23:00.002-06:00

My sweet Kenna turned 7 yesterday, and lost tooth #7. can't believe the years have gone by so fast.

We had multiple parties. one with Matt's family last Sunday, one with her friends and cousins on Saturday, and one with my family yesterday.

Kenna asked me if we were celebrating her birthday tomorrow too? I told her that once we celebrate on your birthday date you don't get any more parties or gifts. But my sister put gum in my gear by forgetting her gift for Kenna, so I guess we will celebrating again!
I made her cake yesterday, from scratch, it was yummy. Who knew cakes didn't have to come from a store or box.

I love this kiddo very much and am so happy she is mine. She has given me so much joy, as well as thunder from her strong heart and temper. I couldn't ask for more!!

She hates them....

2010-09-20T10:52:00.002-06:00

So Arianna got worse since my last post. Her lungs took a turn for the ugly, and she got an ear infection while on anti-biotics. Her doc gave her two rounds of Rocefen and called her pulmo doc and cardio doc. Her pulmo doc added Tobi treatments to go along with her Vest, and increased those to 3 times a day. she is going to add pulmozyne treatments when we are done with the Tobi(only a two week round). Well this kid hates to have the mask on her face and to be held still for the 1/2 hour it takes to do Tobi, she yowls like a cat the whole time, I guess the benefit is that she gets more in her lungs while she does it. Then to be put in her chair for the Vest for another 20 mins, well it makes for a long hour. I have to get up at 5:30 to start all the treatments so that she can still go to school, and yes I kept her home for two whole weeks like the docs wanted. No more fevers and she is just ready to roll, loves to be at school. Glad to say that it has all been worth it and she sounds a ton better in her lungs!

My hat and heart goes out to all you moms of CF kiddos. I still don't know how you do it!

On a side note....A wild fire is burning in our valley, thanks to the effort and hard work of our firefighters only four homes were destroyed and no one was injured, well one fire fighter was bitten by a horse he was trying to move to safety. Send your prayers to those that are continuing to fight and those that have lost. I have many friends that live in the area affected, in fact we almost bought a house there, I am glad to know that they are all safe at this time!!!

Where to start?

2010-09-08T11:47:00.003-06:00

Well, I am without computer and Internet at home so I am forced to visit the Library and use theirs. Which today i am to hold in my chuckle, I checked my e-mail and I have somewhere in the range of 300 unread messages!!! I will get to emptying that in time, most of it is junk. I do wish I could do this at home, you can only use the computers here for 120 mins.

Now to the kids. Arianna has been in school for a week, although she took two days off for an extended holiday weekend, she has a cold. I did however send her back today, she is 8 days out from her last fever and is on anti-biotic. I must say I hate Omnicef for what it does to her tummy, she has had me up every night for at least 2 hours. First it starts with a blowout of red poo, which I must clean up and do a clothing change. Then she wants to cuddle until the gurgling in her tummy stops. I am so worn out, but I don't sleep well during the day, Matt has been great to let me get into bed early.
We went in to she her eye doctor yesterday, she has had a really gooey eye for two months and the eye drops just don't seem to be helping like they once did. So the doc wants to get us into the plastic surgeon for eyes, and have him construct her some tear ducts and drainage system for her left eye. This sucks only for the fact that we have gone a whole year without any surgery and only an overnight stay in the hospital, I was feeling blessed and lucky. I can only hope this will be and in and out kind of thing.

So now for Kenna. She will be turning 7 on the 19th. I still can't believe how fast her life has passed me by. She is so grown up, but still likes to cuddle up with me. She is doing well in school and has gotten 100% on all her spelling test so far!! she is one smart cookie. We have horses that live next door and she loves to give them treats from our garden and is learning how to care for a horse. she hopes this will lead to a horse of her own(we'll see).
She has painted a picture of humming birds at flowers to enter in her schools Reflections contest, she can't be more excited and knows 'I will win mom, my picture is the best'. She is already a winner to me.

I know there is so much more that i should update on, but I can't seem to think of anything right now. Guess there will be another installment soon.

2010-08-13T11:14:00.002-06:00

So I met with the grandparents of Thiago, he is still in Uruguay. What a special and uplifting visit for us all. They fell in love with Arianna, and the grandpa couldn't put her down.

I feel such love and sorrow for this family, in Uruguay they are not getting the care and much needed surgery due to the fact that Thiago is not suppose to live. He has a cleft pallet and harelip that needs to be repaired, and they wont do it. I made some calls to our wonderful plastic surgeon, and they gave me the info needed so that the repair might be made by the Hershey Smile Foundation. The family will travel anywhere in S.A. so that it can be done.

I was able to send a few needed medical supplies with them, makes you feel good when you can help out, even in this small way.

I will post a pic of this cutie as soon as I have my computer back.

Pray for this family that them may get the care they need.

2010-08-10T17:58:00.002-06:00

Looking forward to tomorrow. We are meeting a family for Uruguay, they found us online and are in town visiting family and doctors. The genetics doc that works with SOFT called me and asked if we could meet them. They have an 18 month old boy with Trisomy 13. I am hoping that they find what they need in meeting Arianna.

I will post pics of the cuties together when I can.

2010-08-01T08:00:00.002-06:00

Summer is to short and ever so busy. We spent a five day weekend at Starvation, camping with old high school friends. Matt and Kenna spent lots of time on the boat, Arianna and I only went out twice, but we still had a good time in the water and on the beach. I also took her for a ride on the tube behind the boat, she liked the wind in her face.

Kenna has been in swimming lessons three days a week since the beginning of July, she loves the water and is enjoying it.

Matt gave me a tandem bike for my birthday. We have a bike trailer so we hook it on and take the girls for lots of rides, again Arianna loves the wind in her face.

I took Kenna to Lagoon for her very first time on Friday. She is a brave kid. She went on the Bat, the Wild Mouse, and the Centennial Screamer. She also tried out the Lady Bug, sounds so innocent, but no, it lifts you up on a tall shaft and then rotates and drops, then up and down many more times. She said to me 'I tried it once and that is all I will do,I don't want to do it again I may barf'. Her very fav was the Jumping Dragon. We spent the whole day there, got home about midnight and then slept in till 10.

I had not been feeling quiet right for about a month, always exhausted, and very nauseated. Before you get to excited, no I am not pregnant. I went to me doctor, had lots of labs done, and found that I am very depleted in vitamin D. I am now on a high dose twice a week, and feeling much better. But then about two weeks ago I came down with a bad cough. Again I went to the doctor and I have bronchitis. They put me on an inhaler and antibiotics for a persistent sinus infection. My sinus' is getting better, but I am still coughing, and it hurts, sounds as if I am trying to get a lung out. I can only hope it clears soon.

Getting ready for school to start again, Kenna goes to first grade on Aug 17. Took her clothes shopping yesterday, good thing Grammy wanted to buy her some items. She picked out some very stylish outfits, made my realize that she is not a little kid anymore, growing up way too fast.

Arianna will begin school on the 23, not sure yet if school will be a full day for her or not, the school was still working on it. Don't know what I will do with myself all alone everyday, maybe get my scrap booking done!!

For Our Dadday

2010-06-20T19:05:00.002-06:00

The girls that love their Daddy!! So happy to share parenthood with him!
Happy Father's Day

Kenna at 6 months old

Kenna and her cuz Nate, about 2 years old.

Cowgirl princess Arianna.

Sweetie!

Happy Birthday!!!!

2010-06-19T05:50:00.006-06:00

Four years have come and gone so quickly. It is still so clear the day our family journey began.

June 19, 2006. 12:51 a.m. Arianna Jolie Snell came into this world the same way she has lived, fast and confusing. Weighing 6 lbs 2 oz and 18 inches long. Due the breathing difficulties and multiple abnormalities she was transported to our local children's hospital. After three days we were told Arianna has Trisomy 13, and she would most likely not survive the week, her syndrome 'was not compatible with life'. I had had a normal pregnancy and, she was not pre-term diagnosed. After much crying and praying we learned all that we could to help bring her home, we did not want her only memories to be of the hospital. At 12 days old Arianna came home, she was at peace in her new room, and enjoyed all the new sights and sounds. She did have her bumps in the road however, an almost overdose of Morphine at a month old almost took her from our arms. Her respiratory system was suppressed, and she could not get a deep breath. After Matt gave her a rescue breath or two she started to pink up and take a few good breaths on her own. We never once thought that we should do what it takes to help her, and if it was her time what we did would not have worked anyway.

Her first year of life was very full of unknowns and hospital stays. In October at 4 months old she started to have seizures, we spent 5 days in the hospital yet they could not diagnose what had caused her the stop breathing and her heart rate to plummet. Only after our returning home did we start to fully understand what was happening. With in 12 hours Arianna had suffered 6 seizures, one every two hours, we could her sats and rate on the pulse/ox, and she would go limp and lifeless, it only lasted a short time and then she was back with us. That morning her home health nurse came and we explained what the night had been like, she knew right away that it was in deed seizures. She talked with our Ped and we got her on meds right away. The true cause of all this seizure activity, Arianna's brain was getting squished. She had Mitopic Crainal Stenosis at birth, the front of her skull was fused and would not allow her head to grow. At 7 months old she went in for crani repair. After 8 hours with an amazing plastic surgeon her skull was opened and expanded she that she might grow and thrive. She did amazing things after that. learning to rollover, to drink from a bottle, and just living past the expectations.

In April we learned that she was a silent aspirator, every feeding she was dumping her milk into her lungs and never coughing or complaining about it. After much discussion we made the decision to have a G-tube placed so that her lungs would not get worse. With surgery scheduled for late May we were feeling better. On May 11th, a day before mothers day, Arianna went into full respiratory arrest. She was intubated upon arrival at the hospital, we spent the next 18 days fighting lung issues and with the docs, she needed her g-tube but they would not do it with her lungs so bad. I knew that she would not recover her health without it so we fought. On June 4th it was finally done. It took her another month to fully recover and return home, and she has done so much better since the G-tube was placed. That was her first birthday, and only, to be spent in the hospital, lots of family and friends came to visit her on that special day.

The next three years saw less hospital stays and less surgeries. Her tonsils were removed along with that weird cyst by her ear. But really we have been blessed with less.

In this time she has done much in her development. Mastering the roll so that she might check out her surroundings. And in this last year, sitting up, crawling short distances, pulling to a tall kneel and then standing, and walking with assistance. Going to pre-school, although rough to let her go at first ( I got over that, love the time alone) she made most of the new strides due to those in her life that saw her as a child, not the diagnosis. Teachers and aids that wanted her to see and learn new things, it has only made her want more!!!

So today I say to her: Thank you for being my child, for showing others that you are not what is expected, that you write your own rule book. For teaching and learning right along with me. I am so blessed to share my birthday with you, you will forever be the present that could not be topped. You are so much more than I ever thought possible. In my eyes you are 'Life Compatible'.

Ugh...Staples vs Stiches

2010-06-16T14:46:00.004-06:00

So Miss Arianna, being the adventurous little one that she is, pulled a lamp off the side table by getting caught in the cord. It broke the bulb and she got a cut on the head. I rushed her over to the new hospital in our neighborhood. It didn't take too long, but she was exhausted by the ordeal that she fell asleep before the doc even came in. She slept right through the doc putting 2 staples in her scaple. He was very suprised, as was I, I thought for sure that she would cry after the first one was placed. What a good little girl.
He felt the staples would be best, didn't have to numb her first, and they hold better.

Sweet Kenna was the one to alert me to the whole situation, and she kept her cool and helped me put Arnas things in the car. She was also very good while waiting in the ER. So glad that she didn't barf at the sight of blood!!

The gash! it really is little

All fixed up!

Where to Start

2010-06-05T12:30:00.002-06:00

So Arianna is done with school for the summer, I am going to miss the daily break, and she is going to miss her friends. We were able to borrow her gait trainer for the summer for her to use at home, she just loves to explore. And I love to see her laugh and smile at the new way she sees the world. She knows where she wants to go and gets herself there. I found her in my bathroom, just a little stuck, she couldn't get turned around. She is a walking fool and I love it, she likes to come over to you and give you a hug. Kenna wants her to be in it all the time.

We are getting very close to celebrating another birthday, can't believe it has been 4 years!! June 19th is coming fast!!! Anyone that would like to join us in celebrating just e-mail me and I will get you all the details. arnasmom@yahoo.com

Kenna has a few more weeks of school left. We are going to the zoo on Monday for a class field trip and I get to ride on the bus with the kids, Kenna is very excited. We'll see how well I do being in charge of a group of Kindergartners!!
It is such a beautiful day, Kenna and Matt have set up the kiddie pool, my daughter is a little fish! She has asked if we could get a large pool and Matt has agreed, we have plenty of space for it. I was hoping a trampoline, oh well.

2010-05-26T13:31:00.002-06:00

We are camping this weekend, I don't care what the weatherman, and doctor says!!!
Arna was doing well for a few days, but has had relapsed. A little fever last night, but today is better. starting her on the antibiotics today, just to be safe. Pray it works!!

2010-05-20T14:20:00.002-06:00

Well, Arna and I are sick, she has been home all week, we think it's just Rhino. I am not sure what I have, just tired and sick to my tummy from all the nasal drainage.

we had a fun camping trip over the weekend, and can't wait to do some more.

I don't have the computer at home, and wont for awhile, so I probably wont post again soon.

nice to see that all our bloggy friends are doing well. We love you.

Oh and BTW, Arianna will be four in one month!!!!! gearing up for a big party!!!

Mothers I Thank..oh and a few Fathers too

2010-05-09T11:28:00.003-06:00

I have so many words inside, but I am not sure how to express them to do them justice.

I am so very thankful for the mother that raised me, she may have not done everything perfect, I know I was not an easy child. But she help me to become the woman and mother I am today, she still continues to bless me with help and knowledge so that I may raise my children. She is my saving grace.

To my mother in law, thank you for rasing such a wonderful son. You taught him love, strength, and compassion, and not to forget, how to cook. You raised him to be a full partner in his life as a husband and father.

To my sister, I know we are more to eachother than we ever thought possible, considering what we put eachother through as kids. Glad we can help eachother when the kids drive us bonkers.

To all my friends, you show me that we all have faults, but we can overcome the trials and stand tall against the storms that batter us. You are the women I look to.

To my husband, I thank you for the love, support, compassion, and the yummy cinnamon buns! You are so amazing to me. All the hard work you do so that I might stay home and raise our girls. You truly are wonderful.

To my Heavenly Father, thank you for sending these wonderful people into my life. For giving me faith and strength to raise the tender special spirit that Arianna is, I know you have the faith in me to give her a full and wonderful life. Thank you for Kenna, she has shown me that I can be so much more than I am, that I can grow everyday as she does.

So.... Happy Mothers Day!!

It is so much more than a day to be spoiled by your hubbs and kids, it is a day to thank those that make you the mother you are!!!

I'm Stuck.....HELP!!!!

2010-05-04T17:08:00.000-06:00

So when your main mode of getting around is rolling, you can find yourself in some interesting places. This is how I found Arna this afternoon, stuck under her crib, she was crying when I came in but started to laugh when I took her picture. Gotta love this cutie!!

random stuff

2010-04-23T11:15:00.001-06:00

If you never had the chance to see it, this was the bedroom both my girls had when they were babies. Sadly to say, the family that bought our house has since painted the room salmon pink. But I will always remember how I felt in this very special place, the calm and peace it always brought for all of us. I had the rocking chair under this tree, really felt as you were a part of this special world. The mural was designed and painted by Jason Richardson, hubbs to Matt's cousin. He has such talent, I will have him come and do some painting in Arnas room when will build our addition and re-do the master to suit her needs.

Lots to catch up on

2010-04-21T09:37:00.001-06:00

This has been one crazy week, and I hope it is getting better.

So monday started it all, Arianna woke with a mild fever so I kept her home from school. I was needing to go into my hubbs shop to work on the bills, but with Arna home I couldn't. My sweet mom offered to watch her for me, so on my way to the shop I get a flat tire. My sweet hubbs came to my rescue and changed the tire, yet my spare was on the verge of flat itself. I limped into the gas station and filled it up. I then had to scrap working, it was time to pick Kenna up from school. My mom offered to come back later after she took care of some things. So after lunch she came back and I headed out, and still nothing went right. I was missing lots of paper work, so I couldn't get my work done, and it was time for my mom to pick up my nephew, so I ran out to pick him up from school. I got back home to hear that Cardiology had called, Arianna had an ECHO scheduled on Tuesday, made the appt back in Feb. So I call back and the sedation nurse is concerned about doing the procedure, they want her to go under general anesthesia, which requires and OR and an anesthesiologist. They were working on getting her into the OR for Tuesday, but no guarantee. I waited for two hours, going crazy, when they called back and told me they could fit her in. We has to be there at 6:30 a.m.

So Tuesday started early, had to wake up at 12:00 a.m. to stop her feed, then again at 4:00 a.m. to give her a bolus of clear liquids. Back up at 5:00 to get in the shower and be ready to leave home by 5:50. On the road I hit every red light. At the hospital we waited it the pre-op room for an hour and a half before it was her turn to go in. the procedure was to take only an hour, but took an hour and a half, took a while to get an IV started. Then another hour in recovery, she had a really rough time coming out of the anesthesia, just cried. I still had to go down to see her cardiologist, but the sweet nurse called him and asked if he could come see her in post-op, and he did. The results were not what I wanted to hear, her plumo pressures were high, at least 80, he gave my the options, not worth going into. We soon were packing up and heading home.

My mom and sister-in law kept Kenna for the afternoon so that I could catch a few winks.

I noticed when I got home that I had missed a few text msgs, one from Matt's bro and his wife. Little baby boy Cooper had been born late on Monday night, what a cutie. So that had cheered me up.

Arianna's cardiologist called me at home, he said he missed telling me a few things from the ECHO, he spent some more time looking at it and the report. He said the the right wall of her heart had not increased in thickness, meaning her heart was not working any harder, so it may be possible that her plumo pressure was not as high as he first thought. He wanted be to increase her Amlodipine med, helps to lower the blood pressure. He wants me to consider going into the cath-lab to get a better look at those pressures. All this made me feel much better.

Matt and I took a trip to the hospital to meet Cooper. He is so little and so sweet, I think I have forgotten how little newborn babies are. I think that this was the best way to end the day, filled my heart with joy.

Today is going to be a much better day, even though they skies are cloudy. Kenna is going off track today and we are going to have some good time alone together before Arianna gets back from school!

It can only go up from here!!!

Full House

2010-04-06T09:29:00.000-06:00

I had so much fun last night. My two nephews, Will and Xander, and my niece and nephew, Xendria and Zarek can over to play. What fun it was to hear the laughter and running of five sweet kids in my house. Arianna rolled around trying to keep up with them nut ultimately decided to play with her Aunt and Papa.
I wish I had thought about it and took some pics, but I am a slacker, I was enjoying the moment.

It makes me want more and more babies, a house full would be just fine with me.
We'll see where life here takes us!!!

Craving...I want another one please

2010-04-05T12:32:00.000-06:00

So my brother and his family came down from Logan for a visit, so I got to meet my newest nephew, what a cutie. So now I am wanting a new baby of my own. I really want me a baby boy. We are anxiously awaiting the birth of Cooper, and he should be here any day now. I hope that spending time with these little ones will help to ease my wanting of a baby boy.
I trully don't want Kenna to be an only child, I know that Arianna will leave us someday and Kenna will not have that sibling friend. I know that there would be atleast a 7 year difference in age, but whose to say they wouldn't have a good bond as they grow older.
But then there is the issue of cost, our insurance has increased our out of pocket for maternity to $7500, just how would we be able to do that along with the $2500 we put out every year for Arianna's care.
I think a lot of praying and discussion needs to be done on this issue.

what is this funky feeling

2010-03-30T13:08:00.000-06:00

I know that moving was what we needed to do, this house is great for all of us, but I really miss my friends and neighbors. Today I just feel so lonely. Arna is feeling a bit sick and has had some increased seizures today. We are stuck in the house cause I don't want to take her anywhere, the wind is blowing like crazy, so I can't spend time outside. Isolated is the word that keeps coming to mind when I try to describe how I feel. Seems silly the more I think about it, I have my kids to take care of, and Kenna keeps coming by to give me hugs, Thirsty is laying a my feet keeping them warm.
Perhaps I just want the sun to shine all day, no more gloomy clouds, I am so ready for the summer, for camping and outings with other adults.
I am excitedly planning our trip to South Dakota in July for the SOFT conference. We are going to take the weekend before it starts and travel through Jackson Hole, Yellowstone , and the Black Hills. I really can't wait.
I think I will go find some pics to scrapbook, Kenna always loves to help. Maybe that will snap me out of this lonely funk.

Hee Hee

2010-03-15T09:35:00.000-06:00

So we have this large bay window in our kitchen, and the birds seem to fly into it at least once a day. I can't help but laugh because it seems to be the same bird always doing it. It does however scare the crud out of me each time you hear the bang.

Yesterday Kenna and I got to spend the afternoon together, we went to see Disney on ice, thanks to Hope Kids. What I would do without this wonderful support group I don't know. We are able to do so many things at no cost to us, movies and outings are things we just can't find the spare funds to do anymore. I am so grateful to them for all that they do for families struggling though medical issues.
I was happy to see my sweet girl smillin and having a good time. We had a good day without any fighting, that seems to be the norm for us two. I know she is six and had to grow up too fast, had to learn about so much that a little one should just not have to deal with. She struggles often with everything Arianna throws at us, she mostly hates to trips to the hospital, she misses both mom and Arianna. She and I are trying to find a way to better cope with everything, how she can express her feelings without snapping at me, and me to not snap at her just cause I am exhausted.

Arianna is doing well and seems to be of the worst of this nasty RSV. I am so happy that our hospital stay was so short, she seems to do better at home where she can get around. Just lying in a bed doesn't help her loosen the crap in her lungs, but rollin an crawling though the house seems to do the trick. I am eagerly waiting the day she can return to school!!

Trisomy Awareness Day

2010-03-13T17:43:00.000-07:00

Today, March 13, is Trisomy 13 Awareness day. A day to celebrate those that have touched our lives. Do something 'extra'ordinary today. Our Lucky 13!!!

Going home

2010-03-09T11:19:00.000-07:00

The docs trust that I can take care of Arianna at home. She is stable and cranky, good sign. I am just getting things ready and we our out the door. Thanks for all of your thoughts and prayers.
I am ready to get some rest in my own bed!!! And Arianna wants to play on the floor.

I will do my best to let you all know how we are doing.
Thanks
Julianna

2010-03-09T00:34:00.000-07:00

Just confirmed at 12:00 a.m.: Arianna has RSV. I am now looking at a much longer hospital stay.

I can't sleep and I have had no appetite.

I need some good vibes sent my way, please.

Arianna is Sick

2010-03-08T13:48:00.000-07:00

Arianna had a fever of 105 yesterday, today we have been admitted to PCMC. Her lungs look bad, and we are waiting on cultures to come back. Please pray for her.

Getting Settled

2010-02-22T10:20:00.000-07:00

We are still finding our place in the new house, and I have yet to set up Internet, need to find the right service for the right price.
Kenna is enjoying that she can ride the school bus, even though I can drive her just as quick, she likes the walk to the bus stop with mom and Thirsty.
Arianna loves the new space she has to explore, and I love that I don't have to worry about the stairs anymore. My biggest problem is unwinding all the O2 hose from around her.
Not much else has been going on, all is quiet and we like it that way!

Another Trisomy Angel

2010-02-16T20:08:00.000-07:00

Please pray for our friends the Lint family. Their sweet son Zion flew home with the angels today.

Were Moving!!!!!

2010-02-12T09:14:00.001-07:00

Well it is official, we are moving into our house this weekend!!!!! Matt took the past three days off from the shop so that he could work non-stop at the house, and it has gone smoothly. The carpet was installed yesterday. all of the drawer fronts were connected, so the kitchen cabinets are completed. Matt is working feverishly on the new handrailing/banister and a gate to the basement. he is so handy, my 'jack of all trades'. The kitchen appliances will go in next, and that is all that needs to be done before we can 'live' in the house. Sure there will be little things here and there, but nothing that would stop us from being able to sleep, eat, and enjoy our new home.

As I look back on this journey, it started on Nov 12, I know that the time and effort put into this home by my hubbs and my dad, was all a labor of love. To know that this home will be safe for Arianna to live in , and for us all to enjoy is wonderful. I say thank you to all that have helped in their own little way, by watching my kids, or bringing food over so that we don't have to break off working. And thanks to my parents for allowing my family to live here, and take over your space, we love you greatly!

Just know that if you don't see any post for awhile, it might be because I don't have Internet at the house yet, I don't even have a phone. But I will try my best to update as things move along. Thanks for sharing in our journey!

Arianna Crawling

2010-02-02T18:34:00.000-07:00

Just look at this girl go.

To watch my almost four year old learning to crawl is so amazing. To all the doctors and nurses that told us she would not live past a week, just look at her now. Defying all that you assume you know about this syndrome. We shall educate you, there is hope and a chance for life, a meaningful life. It may take years to learn what a typical child will do in mere months, but it is well worth the wait, the joy in my heart is overflowing. Yes she will not out live me, but while she lives she will amaze me. Thank you God for showing me the blessing of patience.

Thought for the Day, Life

2010-02-02T08:03:00.000-07:00

God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with a chromosomal anomaly doesn't TAKE a special family, it MAKES a special family.

So very true. I got this from my friend on FB. Felt I needed to share it with all. Passes it along.

Wow....Tantrums and Achevments

2010-02-01T21:49:00.001-07:00

Arianna has now figured out that 'if I cry someone will come'. And is throwing tantrums when you leave her in bed for the night. She has taken to knocking a floor lamp into her dresser with her feet (sticks her legs out through the rails and kicks), she knows we come in for that one.

I am excited to tell all, tonight she crawled, not far, maybe only as far as moving both hands and knees forward once, but that is huge. Of course I missed it, I was cleaning up from dinner and she was done performing when I got in the living room. I look at it this way, all the first I get to see and Matt misses, well he got to see this one and I missed it.

Life is so fun, the high and lows, the wild and crazy. I wouldn't trade this, I love my life!!

Matthew Update

2010-02-01T21:44:00.001-07:00

******update******
I have been told that the bio famliy is now reconsidering, they want to bring Matthew home.
Please pray for the love an support that they need in this journey will easily find they.

More Prayers ar Needed

2010-02-01T09:00:00.000-07:00

Please pray for this little one too. Little Matthew, born January 25th 2010, Full Trisomy 13. He is healthy at 6lbs 15ozs, and 19 inches long. Breathing on his own and eating from a bottle.
He needs a home and family. Please pray that hearts will be softened and humbled, that 'his' family will find peace with his diagnoses and love him and care for him, take him into their home and love him.

prayers please

2010-01-30T21:39:00.000-07:00

Please keep Jaxson in you prayers tonight. he is in the hospital and all the strength you can send to him and his mommy is needed.

Arna just loves this boy!!!

update and pics of the house

2010-01-30T11:28:00.000-07:00

Arianna has been sick all week, and we don't know what it is. Her VRP came back neg for everything. I have been treating her with oral steroids and her doc put her on omnicef due to an elevated white count of 18,600. not as bad as she has been in the past. She really just has more junk to suction, but otherwise is doing much better. Her phenobarb levels are normal, and the seizures have not returned. I know she wants to go back to school, she seems so bored at home with me.

So here are some pics of the house. no there is not one of the front, my camera died and I haven't gone back in the daytime to take one. but I will.

Living room Kitchen

back half of the back yard, front half of back yard,

Remember our house sits on a 3/4 acre lot.

back of the house

I will post pics of the bedrooms and front of the house tomorrow.

2010-01-22T21:57:00.001-07:00

Thanks for all your prayers and concern. Arna has been doing fine, has not had another 'fling' episode but did have a space out one today. Her eyes fixed and her face went blank while we were playing. So yes I now realize this is something more than just random. I made and appt with neuro, but we wont see them until March 11th, hoping she can last that long. I will be taking her in tomorrow to get her phenobarb level checked.

I ask tonight that you pray for little Kyler. He has spina bifiada and is 6 months old. He had many complications with his gut, i.e. his bladder was on the outside which was repaired and was doing well at home. Recently he got sick and was put in the hospital. After going home on antibiotics an error was made with his med, which landed him back in the hospital with gut bleeding. Now the amount of TPN he has had to be on has destroyed his liver. He is also in need of a bowel transplant, which they do not do here in Utah, and the success rate is low. The doctors are not giving him much time.
Please pray for comfort in this difficult time.

Thanks for sharing your love and support.
Juli

Is this a Seizure? help

2010-01-20T21:30:00.000-07:00

I don't know what is going on, this is a new thing. Arna is doing this weird jerk, fling her arms out, and go stiff, mostly while sleeping. It wakes her just barely and continues till she is fully awake. Any of my blog moms have an idea? Is this a new form of seizure?
She doesn't do any of the normal things that I have seen following her previous seizures. such as crying or collapsing into a deep sleep.
This all started after school, she was asleep when she got off the bus so we left her in her chair, and then this fling thing happened and woke her up. She was awake so we took her out of the chair and let her play on the floor until her feeding. She then started to do it again, but then promptly stopped after 2 or 3 times. I called her peds office today, told them what was going on, but that she had no other signs of illness that usually goes with her recent seizure activity. They told me it was my call to come in and have her checked out. I pondered it, and decided to watch her to see if it continued, which she was fine until her 6:00 feeding. She fell asleep and after about ten mins she started it all over again. Now in her bed asleep for the night she doing it periodiclly.
need to get a hold or neuro.

Pray for her, that this will not continue.

My Yoga Instructor

2010-01-18T11:51:00.000-07:00

I wonder if her bed is getting to tight for her? Or maybe she is just perfecting some new Yoga pose? Either way this girl is dang flexible.

Life is going smoothly right now. Kids are seemingly healthy, and the house work is still moving forward. We got the cabinet doors stained and finished, just have to let them cure before we start putting them up. The door trim is up, now we are painting base boards and putting them on. The carpet will come after that is done. Matt did find one new thing to fix, when we took the carpet off the stairs we found that many of the treads are broken or cracked, so we must replace the whole flight of stair treads. one more full day of work there. The handrail and banister was also delivered last week, but we have to fix the stairs first. Just the finish work is left to do, but it seems to take to most time.

Today we celebrate my mom's Birthday. I am grateful she is my mom, without her I would be, well crazy. She supports me in ways that only a mother can. I can count on her to help me through the though days. And she can take care of miss Arna, that is huge. It is not an easy job to learn, but she is the only one that was willing and excited to do it. So I say thanks mom, and I love you for all that you are. Happy Birthday!!

Feeling better

2010-01-12T12:29:00.000-07:00

So Arna slept through the night, and I did as well. She woke up feeling more like herself, and the fever is gone. I did keep her home from school, as to not spread anything, or pick anything else up.
My JOY today: Arna will let me snuggle with her. Kenna made me a cutout heart just like a Valentine, she even wrote 'i luv mom'.

FEVER!!!

2010-01-11T20:55:00.000-07:00

So here we are, one week of school down in the new year and both kids are sick. Kenna seems to be fighting it well, just a stuffy nose. I was hoping that the bug had passed Arna over, but no. She came home from school a bit junky, not a big deal, but at 5:30 she started to fall asleep on the floor. She doesn't do that unless she isn't feeling well. I took her temp and guess what, 101.9. Lovely. I went straight for the Motrin. Within minutes of taking her temp the seizures had started. It breaks my heart to she her whole body jerk and then for her to start crying. So of course I run for a loading dose of phenobarb, 18mls, and she falls asleep within minutes of that. She has been asleep since then, only waking while we changed her diaper, g-tube dressing and put her jammies on. The fever had gone down to 100.3 and has just stayed in the lower range. Going to keep close tabs and keep the Tylenol and Motrin going in. Her doc is not in the office tomorrow, and I am not pleased with the other docs right now, hoping this is nothing more than a sniffle nose and we wont need them.

I am hoping for a calm night, I didn't get much sleep last night, just laid awake, tossed and turned, couldn't shut my brain up. and then to top it off, I was babysitting for my friend, no biggie Ella is a sweet 15 month old, easy going. But I was asked early this morning if I could watch my nephew who is 4. This is on top of the two kids my mom has in the day, and my own. I seemed to make it through the day just fine and even had a cat nap with Ella asleep on my chest, but now I am beat. I am going to hit the Airborn and then my pillow.
Pray for us all please! we need to get healthy and stay that way.
Juls

Wealth of Info

2010-01-08T20:53:00.000-07:00

I just haven't been up to it, or maybe because there is not much going on, I have neglected to update.
With the girls returning to school my mornings have been crazy. Arianna is up and dressed by 6:45, and on the bus by 7:20. She has a new bus driver that is still learning the ropes. A new school building, her class room is a lot smaller than the previous school and I am not sure I like that. She has a new nurse ridding the bus and taking care of her at school. And a new teacher, very nice, but also learning the ropes. I am trying to be nice and give all the changes a chance, see how it all works out. Arianna doesn't seem to mind any of the changes, she is just so easy going and loves everyone.
Arna's school went on a field trip to the Gateway Discovery, really not a nifty for a kid in a wheelchair, she did like to listen to the bong in the ball room, made her smile. We played a bit in the water fountains, and jammed in the sound and music mixing booth. Overall she really just loved the bus ride, very bouncy on the big yellow bus.
Kenna started at her new school as well, and seems to be adjusting and loving it. I am very impressed with her teacher and the style in which the kids are learning. I have seen more, and found that Kenna knows more than I thought in this one week in her new class. Kenna is now being the teacher around the house, showing me and Arna flash cards of sight words and teaching us what the word is. I LOVE IT.
Matt is ever busy with the house. I have helped with paint, all done. And now they are working on the flooring in the kitchen, base boards, changing light sockets and outlets, and purchasing and installing the appliances. We still plan the be in before February.

I had to lower Arnas crib to the lowest it could go, I found her arching her way out backwards the other morning, her head and shoulders were out and she was pushing with all her might on her heels to finish the job. Well now she is mad because she can't turn on her toys while just laying on her back, she has to push up tall, or sit up to do anything. Maybe it will be a benefit, and get her sitting more!!!
Still no word yet on her walker, it is still in medical review, whatever that means. I hope they don't take all year to decide.

And I am stealing my resolution from Natalie.

Find Joy in the Journey

it is not so much a resolution, but a way to live. How to deal with whatever may cross you path. and she has taught me that life continues, and faith will see you through.

now you are all up to date!

Arianna Walking

2009-12-30T20:46:00.000-07:00

It may not look like it to most, but Arianna is doing all the work, her PT is really just holding her upper body. Arianna moved her legs forward, it was like it just clicked today how she was supposed to do it, and she had fun. She did this for about 20 minutes or so, the PT was the one that needed the rest.

Sorry it is sideways, I don't know how to fix it on this computer.

The Sum of It

2009-12-29T21:58:00.000-07:00

For some reason, I do not yet know myself, I have just not felt like spending time on the computer, or updating my blog when I am on. So I will try to sum up what is going on.

We had a very nice Christmas, it was made just a bit easier by not having to travel to two separate houses to visit with the Grands. I much enjoyed the sleeping in that Kenna let us all have, in fact I do believe I was the first one up at 8:30, and that was just to let Thirsty out. Yes we now have our sweet doggy. Another couple that had a dog in OR decided to go pick up theirs and asked if we would split the fuel cost and they would bring Thurston home for us. Couldn't pass that up. He came home on the Saturday before Christmas, what a gift. He loves to be around everyone, but sleeps in Arianna's room. I love the way they play with each other, she rolls on him and he just licks her. We have really enjoyed having him as a part of our family.
Matt is getting so much work done at the house and we expect to be moving in in about three weeks. We pick out paint colors over the weekend, and he and my dad are working at getting all the walls covered. Our flooring arrived last Tuesday, just have to have the paint done before we start on that. net will come the carpet in the living room, the rest of the house has really nice hard wood floors. We ordered new cabinet doors, custom work, should be done on the 5th. Things really do seem to be moving along now!
I got Kenna registered at her new school, she will start back on the 4th, but go off track on the 25th. we couldn't get her on the same track, but we were able to keep her in the a.m. class. Her teacher is very nice, they also have a bunny in their class room. Should be fun.
As for Arna and her health, it seems to be good. Her gut has been bugging her, I think all the antibiotics messed her up, we are giving her pro-biotics to help it balance out. I think she is ready to start back at school, she has had enough of me I'm sure.
Well that's the best sum up I can do.

Simple Sunday

2009-12-13T11:53:00.000-07:00

2009-12-11T18:59:00.000-07:00

So this latest illness seems to be croup. But you really wouldn't know that Arna is sick, other than the horrible barky cough. She has done more sitting up on her own today than she has done in the past month. She is very proud of herself. Right now she is having a little 'with my dinner' snooze, wouldn't it be nice to multi task like that.

Even though her lungs look like crap, I think we will be over this quickly.

Thanks for your thoughts and prayers, they always help her, and me through these rough patches.

Wordless Wednesday

2009-12-09T22:31:00.000-07:00

Sleepy baby sleep, get better quickly!

Modays....Augh

2009-12-07T08:34:00.000-07:00

Arna woke me up this morning at 5:00, she was crying and coughing. I took her temp, 100.4, not high for her. I gave her some Tylenol and sucked out her junk, she went back to sleep. But then about 10 minuets later she was crying again, the seizures had started. It seems every time that she has even a low fever she starts to have them these days. So i held her in my arms to keep her arms from flailing about while Matt gave her a loading does of Phenobarb. She did go back to sleep after 20 minuets so I put her back in bed, I will roast her if we cuddle to long. She woke up again at 8:00 and the fever is still low, but seizures are under control. Looks like this is our worst winter for the little colds, but the best year so far for we have not been in the hospital. Keep praying it stays that way.

We got a lot of work done on the house yesterday, when I say we I mean Matt. Old carpet, gone. Wood panel walls, gone. Part of the wall between the living room and kitchen, gone. All of the cottage cheese sparkles on the celling upstairs is gone. now for the bathroom, we are going to put the laundry in the main bath cause it is a huge space, and I really don't want to go downstairs to do the laundry. I was hoping that we would be in before Christmas, but I don't think that will happen. no biggie, better to do it right than fast.

2009-12-03T16:12:00.001-07:00

I really have not been around enough to post lately. I have been busy with all the holiday hub-bub. Family gatherings, shopping, and general craziness. I helped decorate trees for the Festival of the Trees on Monday. Tuesday I got to sit Ella, while her mommy was at work I loved it so much. She is such a sweet little one, I almost want another of my own. Wednesday I went back to the Festival to be a hostess for a few hours. Today though I have been slowing down a bit to enjoy the after school hours with my kiddos. rolling around on the floor with Arna is really fun, Kenna and I have had a tea party, with Scooby Snacks(gram crackers). Tomorrow I get to have brunch with great friends, Becky she is visiting, Lacey, and Erin. It should be quite the silly gathering.

As for our dog Thirsty, he is in Oregon and we don't know when he will be coming home. They will send him on the puppy truck for free, but not until March. They don't drive puppy's to UT or CO in the winter. I could spend $350 to fly him in, or we could drive up to get him. All options stink right now, I don't have the money and I hate to wait until March. Hopefully another trainer could possibly bring him home if they go to a graduation, we'll just have to wait and see.

Work on the house is going well but slow. the upstairs is all clear of the cottage cheese sparkle celling. The basement is causing problems with the carpet wall, it wont come off. next will be the carpet in the upstairs and paint on the walls. we will also be moving the laundry for down stairs up into the main bath, right by the bedrooms. It is a huge space and the plumbing is right there. Our goal was to be in before Christmas, but I don't think it will happen.

I will try for better updating, but no promises.

Here comes Thirsty

2009-11-25T12:05:00.000-07:00

We are getting a dog, his name is Thurston, we call him Thirsty. He is a year old black Lab that has been in training to be a guide dog for the blind, my sister-in-law Stacey has been his handler since he was six weeks old. He was not able to complete the program due to he has a soft trachea and the harness chokes him and makes him cough. He is however still able to be a companion dog to someone like Arna. He will go through training to alert us if she is having a seizure or difficulty breathing. He has always been so careful with Arna and never tried to take off with any of her tubes. she loves to give kisses to him, she licks his tongue, I know a little bit gross but very sweet. Most of all he will be a part of our family, we have missed our sweet dogs and have wanted to get new ones but wanted to wait till we were in our own home. This is such a great opportunity, I don't have to go through all the puppy training and house breaking(sweet). I am grateful that Stacey wants him to be with us, and she is happy cause she will still get to see him. Don't know when exactlly him will be coming back to Utah, but he will be living with Stacey until we have moved into the house.

Merry Christmas to us!!

Sleepy party goers

2009-11-21T16:54:00.000-07:00

This is what happens when you go to the Ruggs for a birthday party. Thanks Lacey and Ray for a great night. Glad we could celebrate Jaxson's birthday with you. We are blessed to know you.

EOB solved ?

2009-11-21T09:30:00.000-07:00

So I made lots of phone calls yesterday. The first person I spoke with at my insurance told me that all that was owing was our 20% of the bill, only $1473.85. But I told him that we met our out of pocket and should not have to pay a dime. he said that National seating was out of network and was not fully covered. But you see in 2008 they were owned by Praxair and were covered, and that all equipment ordered under Praxair would be covered under contract. I only learned that by calling National, they were very helpful and said I didn't have an outstanding bill. so another call to the right person at the insurance, and she told me they would get it reprocessed/coded correctly and we should be in the clear!!!!
I hope they get it right this time!!!!

Bad Idea Just Before Bed

2009-11-19T22:56:00.001-07:00

I just opened an EOB from my insurance. It is a claim for Arianna's wheelchair, for 12/12/2008, and I just got it today. It is stating that we owe $6200.00 for the chair. I was told it would be full covered due to the fact that we had met our out of pocket max. I really don't understand why they are just now figuring this out. I have some phone calls to make in the morning. I am trying to find my center, I don't want to fester. After they bad night last night I really need to sleep.

So my advice to you all..... NEVER open EOB's just before bedtime!!!!

Feeling better

2009-11-19T09:46:00.001-07:00

Arna must be feeling better, she woke up at 3:30 this morning. She was happily playing in her bed, but keeping me awake with all the kicking and music playing from her toys. I am so tired. She just fell asleep during her Vest treatment, so I am heading back to bed myself. I don't want to be a grump all day.
We are now pretty sure that this illness is just another aspirational pneumonia. we are treating her with augmention and increased Vest therapy, hoping to loosen the junk and get her better quickly. I am very happy we did not have to make any trips to the hospital. She is holding her own here, pray she stays that way!
Thanks to all that have kept her in your prayers!
Good night!!

Sick Again

2009-11-16T21:33:00.000-07:00

I can't believe this, but Arna is sick again. She has been waking up with fevers and seziures for a few days now, but no other symptoms. I was hoping that perhaps it was temp regulation issue, of course that isn't real easy to solve. But no Arna is fighting some thing. I took Arianna into the doctor this afternoon, hoping we could figure this out. Well our ped sent her for a chest x-ray, and after seeing that it was not any worse than her normal cloudiness we went for a CBC. The WBC came back at 30.5,(30,000) the last time she was that bad she had a strep-bacteria pneumonia. She sent us back to the lab, which is in the clinic, for blood cultures, a Phenobarb level and a UA. Then back to her for the first round of Rocefen shots, we have to go back in tomorrow for another. Her doc called tonight and said her UA came back clean. I know we haven't found out the exact cause of the fever yet, but it was a good start. The only test we didn't run was a VRP, but she doesn't seem to have the respiratory issues that would prompt us to do one. Her lungs are moving air really well for her. For now Arna is sleeping, went to bed at 6:40, I just hope she doesn't feel the need to wake up at 5:00. Please keep our family in your prayers.

Got the Shot, oh and the House

2009-11-12T18:14:00.000-07:00

Kenna, Arna, and I all got the H1N1 vaccine, Arna and I did fine, but Kenna freaked out and screamed so loud. I had to hold her facing me and the nurse had to get to her arm in between my arm. Once it was done she was okay, a little teary, I took her over to Jolley's and got her a reward. We were also able to get my sister and her son the shot too!!!!

We closed on the house this morning, I got the keys but we can't go in until the deed is recorded tomorrow. I was so tempted to go today, but I didn't, I was a good girl. I can't wait to get working, so much to do in the living room and kitchen, carpet, paint, and scraping the sparkle popcorn off the celling.

The Week in Review

2009-11-07T09:23:00.001-07:00

I have been to busy to post more often so here is what happened and what will be next week.

Arna only went to school on Monday due to a very weird fever that would come and go. I took her to the doc on Wednesday and she didn't know what was going on, probably just another bout of Rhino virus. Arna is also pushing out her three year molars, but that would not cause a 103. fever. She is going to see the dentist on Wednesday , I think she has a tiny cavity on her lower front tooth, hard to tell what it is. With her not eating orally I don't know how she would get one, but I will admit I am not the best when it comes to brushing her teeth(bad mommy). I am working on it. She was fitted on Thursday for a walker, check it out, www.primeenginering.com, the KidWalk. She tried out a different style at the clinic and did pretty well in it, she liked being upright and still able to move a bit. It will take some time to get her to use her legs and feet to really move, then I will be in trouble. She will explore everywhere I'm sure.

On the 12th we will close on the house, I can't stand the wait any longer. I would really like to be in the house by Christmas. If we get enough help from the brothers we just might be able to pull it off.

I have been following a family in La that is getting ready to welcome their little boy with Trisomy 13, Henry, in January. I learned last night that he will be coming on November 9th due to sever complications. please remember them in your prayers that she will have a safe delivery, and that Henry will be able to spend some time with his family before returning home.

Augh

2009-11-03T10:41:00.000-07:00

Arna woke up with a fever, low grade but I didn't want to send her to school. i am so done with this cold and flu season, and it has just begun. lets just pray it's something silly, like teeth.

side note, baby Emma, the little one you have all help out, may be coming home this week. she is still not eating well and the docs want to make sure she can do it before she can come home. but otherwise she has improved greatly. her momma sends big thanks and tears to all that have opened their hearts to her.

Arianna did just fine.

2009-10-29T21:08:00.000-06:00

Our Botox procedure went very well. It does seem that it takes longer for the pre-op stuff than it does for the actual OR time. Arianna had a more difficult time waking up for the anesthesia than normal, she cried a lot but couldn't really open her eyes. She was however very hungry, but they only let you give them pedialite, but it did fill her tummy for a little bit until we were home. The Botox has not kicked in just yet, I am hoping by morning we will start to notice a change.
As this was an early start to my day I must say,
Goodnight, I am tuckered.

What do I do?

2009-10-28T13:54:00.000-06:00

Today I went to Arianna's school for their Halloween party. While there I learned that the school is needing to cut back because they have lost funding. They decided that cutting the nurses that care for the kids that are high maintenance, like Arianna, is the best place to start. They plan on replacing them with someone who is not a nurse, which to my is not qualified to take the position, and that one person will take the place of three nurses that are spread in three class rooms. I have tried calling the blind school director, but she is out of the office and her voicemail is not working. I have debated calling the superintendent, he is the one that said the school needs to have qualified staff for all positions, but he is also the one making budget cuts. How do I solve this problem? I will not send Arianna to school if she does not have her nurse, and that would hurt Arianna, she loves school.

As for the Halloween party, it was a blast. Arianna and I decorated a pumpkin and frosted cookies. She wanted to play in the sensory room pretty much the whole time, and that's ok cause she is happy there. I will post pics I promise.

Tomorrow Arianna is going in for another round of Botox on her salivary glands, she has gotten very gooey since her first cold this season. This should be an in and out thing and we will only have to be in the PACU until she is ready to go home.

Nurse Tiffany's friend was discharged last night and went to see here new baby girl for the first time, she was a bit shocked by all the stuff hooked up to her. they are both doing ok. She sends her thank yous to all that have donated to them, she really feels the love of this community around her.

Thanks!!!

2009-10-27T13:27:00.000-06:00

I just want to say a big thank you to all that have already stepped in to help. I have received a bag of clothes from Kristen, and a rocking chair was also given to me from my neighbor. And others are sending things, thanks Jen. Jen also reminded me of how even though we may all be struggling, that there is always a way to help others the have less then you.

Just to clarify, because I read my post and I had many typo's.
Mom relocated here to Utah from CA. She is going through a divorce, she is living with her sister in a two bedroom apt, with her sisters kids. She is doing better today as far as the stroke issue, she did have a high blood pressure this morning and will not be discharged as planned. Baby is still in the NICU, and there is signs of brain injury due to the hypoxia, they are guarding her medical status until mom is able to be there. I will try to keep all of you updated the best I can.

Thanks for the help and prayers for this family.

Julianna

Urgent Need For Help

2009-10-26T13:44:00.000-06:00

I never ask anyone for anything, but today I am.

Arianna's school nurse asked me today if she could have any of Arianna's clothes that she has out grown. Explaining to me that a woman that works at the school, and just moved her for CA, had a baby girl on Saturday. The baby aspirated muconium and is in the NICU, and mom suffered a stroke yesterday. She has absolutely nothing for her baby and now will have hospital bills to pay, she does not have medical insurance to cover any of the unforeseen cost.

If any of you out there have little girl clothes that you were planning on getting rid of, or any baby items that would be useful to them I am pleading for you to let me know, I will find away to get them to her. We have found a crib, my parents neighbor just so happens to have one that didn't sell at her garage sale.

Please e-mail me @ arnasmom@yahoo.com and I will give you an address to send stuff to.
Thanks in advance for all the help and support.
Love really does go round here.
Julianna

Funny Pic

2009-10-26T09:18:00.000-06:00

I found this pic on my parents computer and just had to post it. This is Arianna's cousin Zarek. They just love each other, although it looks as if Arianna is ready to sock him a good one in the kisser. Really she is just trying to figure out how to get him closer to give him a kiss.

No news is good news...Right

2009-10-26T08:53:00.000-06:00

Not much has been going on, other than a bit of a cold going around. First Arianna came down with it, but she is feeling much better and went to school today. But now I am sick, all stuffy and my eyes burn, but that could be from all the sheet-rock dust. Matt and my dad have been hard at work on the bathroom in the basement and are just about done with the walls, one more sand and coat and then they can paint. I can't wait till it is done, then I wont have to go upstairs a 2 a.m. to go potty.
I am getting very excited to start work on our house, but we don't even close for another 30 days. the home inspection is tomorrow, I hope everything is right.
I really wish they was more to update about, but life is just... well boring, but boring can be a blessing all its own!

We have a House!!

2009-10-23T17:51:00.000-06:00

We found a house, put in an offer, and it was accepted!!!! It will take about in month to close and probably another for us to fix up a few things and then move in. I am very excited.

Arianna is feeling better, no more fever, but still a little cranky at times. Her H1N1 came back negative but we will continue with the Tamiflu, don't want to take any chances. Thanks for thinking of us and praying for her, it means a lot.

She is sick

2009-10-22T09:39:00.000-06:00

So Arianna had a low grade fever for two days, then yesterday afternoon she went up to 103.1. I took her into the the doc, and while there she started to have seizures due to the high fever. We did all the normal test and her CBC came back at 21,000. We are still waiting on the H1N1 test to come back but her doc started her on Tamaflu anyway. She doesn't have the high fever today, and seems act a little happier, but she is not yet out of the woods.

We have however found a house that looks like it would work well for us, with a bit of fixing up/updating. It is on a huge chunk of land, .74, Kenna loved the backyard and ran around it for an hour. We are putting in an offer today, lets hope we can get it!!!

Oh Arna

2009-10-20T12:33:00.000-06:00

So I got a call from Arnas school nurse, she was concerned cause she could keep Arianna awake, and she had a slight temp of 99.2, but her O2 sats were fine. She slept the whole bus ride to school, fell asleep during art, and slept through a face wash(she hates to have her face washed). So I rushed on up to the school to get her and bring her home. She was awake and playing in the sensory room when I got there, but I took her home anyway. She was happy and alert the whole ride home. I am doing her vest treatment right now to help clear out any junk in her lungs, and I think I will do a few extra today. She doesn't seem to have a fever anymore, but I will keep that in check too.
Her Doc is out of the office today, and the other doc thinks I should take her to PCMC if she doesn't improve. I think I will tough it out at home, no way do I want to be in the hospital, it is full of H1N1, no thanks.
Pray she only gets better from here.

Doing Pro-Active things

2009-10-20T10:17:00.000-06:00

I have decided to take charge of my own feel goods. I have started running in the morning after I drop Kenna off at school. So far so good. I have run three miles both yeasterday and today. I feel so energized and happy, both of which I need. I spent most of this past weekend feeling depressed, lost and lonely. I miss being in my own home with my own space, but I do love being with my parents, they are a great help to me. I have lost touch with my friends and don't really have anyone my own age to hang with.
So yesterday I said I will make my own happy. I will reach out to my friends, make adult playdates, and take care of my Psyche.

I took the kids to get their hair done. Kenna had 8 inches cut off, it looks really cute and does this little flip. Arianna was not much into holding still but we got it trimmed up so it is all even, now it curls more! I will post pics when I figure out my parents computer.
I had a doughnut date this morning with Kenna at her school. We read a book while eating and drinking chocolate milk, it was fun, of course she didn't want me to leave when it was time for school to begin, this is the first time she has cried at school.
Arianna was to go on a field trip to This is the Place park today, but it got postponed until tomorrow due to the rainy weather. Hope it works out.

2009-10-16T09:24:00.000-06:00

I haven't been much up to posting lately, I have had so much to ponder and consider in this life. With the passing of Tessa brought to my mind, again, the reality of Arianna's life and eventual passing. There are those days when she seems like any other child, learning and laughing at the life in front of her. I do so cherish the days I have been blessed with, but I also ponder why was it me, why have I been given the chance to raise this choice spirit. I know that she is here to teach me so many things, and raise me to be everything the Lord has planned for me.

Our life with Arianna has has its ups and downs, by far less downs then many of our friends, but we do have our trials. Watching her teach herself to crawl and her tummy, to sit up on her own, these things seem to have blotted out the nights of endless worry that she will not make it to another morning. I continue to question myself, did I do all that I could for her, to give her all that was necessary to make her life wonderful, happy and comfortable. She always reassures me with her death grip hugs and open mouth kisses on my cheek. I know that at the end of the day she has gone to sleep happy.

I know that my biggest trial in this life is to make sure I have done all I can for Kenna. She often gets left out or forgotten. Her feelings easily hurt. She has been through so much in the past 3 years, I only wish I knew how to make it all run smoothly, to give all that both of them need without running myself into the ground in the process. I continue to struggle with this.

I do tend to absorb what is around me, the mood or atmosphere in any given place, it is my biggest fault. I always seem to borrow others sorrow, it is not very healthy. I always want to make sure my family and friends are taken care of, I am a very generous soul. I rarely ever ask for the help I may need. One of the greatest benefits of living with my parents is that my mom wants to take care of Arianna, and is there to help me with her when Kenna needs my full attention. Even if I don't want it, but I do love her help.

This has just been my vent. My next post shall be much more fun and entertaining. Many good things have been going on.

Julianna

Food for Comfort

2009-10-10T20:37:00.000-06:00

I borrowed these from Becky's blog, but I feel that they express so much of what is needed today. The soul needs to be fed with comfort words.

Russell M. Nelson
"Parents who have surrendered the sweetest and smallest flowers from the family's garden need to remember our Heavenly Father. He has promised a special reward to those who now suffer in silence, who spend long days and longer nights through their trying times of bereavement. Our Creator has promised glory. He said, "For after much tribulation come the blessings. Wherefore the day cometh that ye shall be crowned with much glory; the hour is not yet, but nigh at hand."

(D&C 58:4) That promised glory includes the blessing of reunion with each child who has left the family circle to help surviving members of the family to draw nearer to God. Those children still live and are a heritage to the Lord."

Tessa Joy Bethards was laid to rest today, with the sun shinning bright in the sky. A calm and peace settled around, the joy of this little ones spirit filled us all.
Thank you to our Heavenly Father for this special gift, this special time with a choice spirit.

Angel Wings

2009-10-10T06:42:00.000-06:00

It is with a sad and heavy heart that I write this post. Sweet Tessa has returned home to her heavenly father. Thank you all for the prayers for her and her family. The true miracle of Tessa's life was realized, given the chance to meet her parents and brothers and sisters. The love and joy that she brought to the world you never be forgotten.

Prayers for Tessa

2009-10-01T18:01:00.000-06:00

Please pray for baby Tessa. She was born on September 30th, Full Trisomy 13 with a congenital diaphramatic hernia. She is stable and doing will on the oscillator, and will have surgery in 5 to 7 days to repair the CDH.

Her mom and my husband grew up together and their families are still close. We also went to high school together, but were only recently reintroduced due to us having Arianna and their prenatal diagnoses. I had the chance to meet Tessa today, and she is just so very beautiful. It brought back so many memories of our first days at PCMC after Arianna's birth. I grateful that this family has allowed me to be a prat of their journey, and I hope that I am a great source of info and comfort for them.

Please keep them in your prayers, that Tessa will be stable enough for surgery.

Childrens Tylenol Recall*

2009-09-30T11:08:00.000-06:00

Please check this list before you give any Tylenol to your kiddos. There is a bacteria in the lot #'s listed. This is a link to the list
http://www.tylenol.com/generic.jhtml?id=tylenol/news/subpchildinfantnews.inc.

Keep your kiddos safe and healthy.

Well.....

2009-09-29T18:58:00.000-06:00

Arianna was not able to go to school yesterday and today, she has Rhino virus. She hasn't been acting all that sick but she has a ton of snot so the school nurse told me to keep her home. I know that she has missed being at school, she loves it there. There is no school until next Tuesday, something about UEA, they need 5 working days off.

We are still trying to get settled in my parents house, I am having a real hard time sleeping, it may be my bed but it's not 'my' room. Just when I start to feel comfortable we will find a house, move and it will start all over again.
Kenna broke my heart the other day. She got in trouble for something and I asked her to go sit on her bed. After a few moments I could hear her crying really hard so I went to talk to her. She told me she just wanted to go home, back to her purple room that makes her feel happy. i really didn't know how to make her feel better, I just hugged her and explained it all over again why we were here with Noni and Papa, and how much we all love her. I told her that I too wished we could be 'home', that I also missed my pretty little house.
House hunting stinks, driving around and looking at the outsides before we even go to see the insides is exhausting. I get so car-sick with all the turning and reading of address, I told Matt I needed a break tonight, the weather has also helped me on that fact. It is sooo windy and might rain, I just want to cuddle up and watch a movie with the fam.
I have just been informed by my mom that dinner is ready, it is nice and not to have her cooking for me. Don't get me wrong we take turns cooking dinner, I am not a loafer!!!

It is Done!

2009-09-24T13:16:00.000-06:00

Well we are officially all moved out and homeless! but we are getting settled in at my parents home. We finished with the move last night, we said our good-byes to the house at 12:30 a.m. and got our bed set up and our dresser in at moms and climbed in to sleep at 1:30 a.m., needless to say I am tired. I cried a lot when I walked through the rooms of our house, my whole married life has been lived in those rooms, I have watched my children laugh and grow there, I will miss it greatly.
I discovered this morning while putting away Arianna's clothes that I did not recall packing the coats out of the coat closet. So I zoomed over to the house, and the new owner Bryan was there moving things in so I could go in and look, and yep there were all our coats. He was surprised that was all that we forgot, since we moved everything in 3 days. I was surprised that neither Matt or I had thought to look in that closet when we walked through the house for the last time. I guess we were just too tired!

So school for Arianna is going well. She has a nurse that is with her all day long. She comes to the house in the morning and rides the bus with her, that makes me feel a bit more secure. Arianna went on her first field trip on Tuesday, they went to the Tracy Aviary. Her nurse Tiffany said she loved it. There was one bird that was swaking that made Arna laugh. I wish I could have gone with, but I only found out about it on Monday and I had a ton to do at the house. Next time I will be going!

Kenna really wants school to start again, and so do I. One more week and she'll be back. I decided to leave her at the same school until we move to our new home, why change schools twice.

I will now start looking for a house, let's hope it goes quicker than it did to sell!!

Please keep Jaxson in your prayers, he is going in for surgery tomorrow.

Quick update!

2009-09-21T16:12:00.000-06:00

I am packing my brains out, we have to be out of the house by wednesday night. Here's to no sleep for the next few nights.

Arianna started school today, I think she really liked it. She fell asleep on the bus on the way home. Mom however cried while I packed, I missed my baby.

Last Trip to the Lake!!

2009-09-10T12:59:00.000-06:00

We are planning on a trip to Lake Powell before the summer ends, and before we pack up and move. I can't wait for the sun on my face, the sand in my toes, and not worrying about the house!

not much else for me to say. Do visit Jaxson blog, Lacey has much to say today!!!
It should remind us all that life is a precious gift, that is why today is called the 'present'.

remember to pray for those that gave Paul his new heart, life was changed for them.

Under Contract

2009-09-08T15:28:00.000-06:00

So we got a good offer on the house last week, I believe this one will stick. We are now in the process of packing the things we don't need out anymore. Our whole house will eventually be in storage, we are moving in with my parents. Strange to think I have been there done that, just twelve years ago Matt and I lived with them until we closed on this house. Now were moving back in, just until we find the house that works for us. I feel like a little kid again, I hope I don't have to ask permission to use the car ;).
Arianna went down to the basement again yesterday, only this time she did it feet first and on her tummy, just like a normal eight month old. I told her that she still is not allowed to do it on her own, not until she can crawl back up on her own!!! She is still working very hard on sitting, and can even do it on the hard wood floors with little slipping, she uses her hands more to support herself there.
Kenna is off track now, so she gets to help me pack. She is not very fond of the idea, too hard she says. she is excited to have my old bedroom at my parents house, and the cool bed Noni has is a bonus!!
Here's to a quick and successful move!!!!

Busy as Ever

2009-09-01T17:45:00.001-06:00

Well let me see, where should I begin. We went camping over the weekend, Kenna is getting better a handling her 4 wheeler, she thinks it is cool to stand while ridding. Arianna spent a lot of time in her port-a-crib out side, she really enjoys it, she is with everyone and can play with her toys. She is trying very hard to sit up on her own, she pushes up into a prop sit and can balance there for a little bit, just don't cheer she'll fall over. I am working on finding pt/ot for her, we have been without since the end of June. I think we might end up at Shriners, they are amazing.
We went to Cardiology today, and everything is looking and sounding good. I just remembered however that I forgot to get new scripts from the Doc, oh-well I guess the Pharm will just call in. I am happy to report that Arna now weighs 32 lbs and is 37 and 3/4 inches long, will this kid ever be like the norm that goes along with Trisomy 13? I doubt it. I know that her size has been a blessing, I do believe that it has helped in her strength to overcome so many illnesses and to thrive into her third year. I pray for many more such years.

I had three showings of our house yesterday, same people twice, lets hope these are the ones and we can finally find the place we are supposed to be! I have another showing tomorrow, good thing the house is still clean!!

Kenna goes off track on Friday for a whole month, I was just getting used to our new routine. I still have no idea when school will begin for Arna. We will just plan lots of camping trips before the weather gets to cold, I love the mountains in the fall!!

I hope to post pics soon of Arna sitting up, and of Kenna on the wheeler. Maybe this week!! Keep looking!!!

2009-08-21T16:22:00.000-06:00

Well life has made some interesting changes. I have to make my butt get out of bed every morning at 7:00 a.m. so that I can get Kenna up and ready for school, so far it has not been all that bad. It's not like I remembered it being when I had to get up and go to school, I was unbearable. and it is nothing like getting up to go to work, it seems much more relaxing, enjoying a quiet breakfast with my big little one, while Arianna happily plays with her toys. One set back though, Arianna was to begin pre-school on the 24th, but the new class rooms for the elementary blind school have not been completed so those kids have to use the pre-school rooms until theirs are completed. So school for us will not begin until mid to late September, sigh. I was looking forward to two weeks without kids before Kenna goes off track on the 6th of sept.

We have had lots of lookers coming to our house, honestly you'd think somebody would have bought it by now. I can't wait until I don't have to be so neurotically clean and Kenna can leave a toy or two out. And Arna's toys can stay on the floor too. I want to be messy again!!!

Kenna is going fishing with her Dad and Pappa Paul tomorrow, I know she will have a great time, and Arna and I shall veg in the coolness of the basement watching some flix!!!

I have no internet

2009-08-10T14:32:00.000-06:00

Just so you all know, I have no internet at home, so the post will be few and far between.

ON tuesday my big girl Kenna started kindergarten, I cried the whole way home. She loves school and can't wait for the next morning to come. Arianna will start school on the 24th, I am scared to let her go, but I know it will be good for us all.

I have been really busy and can't seem to stay on top of everything, but life has been good. No we still have not sold the house, and that's okay. We have been out camping lots. Enjoying BBQ's with friends, thanks Lacey! I am looking forward to the annual SOFT bbq, lots of fams of kiddos with all those crazy Trisomys, I love to be with them, they are a great bunch of fams. I missed going to the annual SOFT conference, but it was in Roanoke VA and we just couldn't go.

Plans are being made for a Snell fam trip to Lake Powell, can't wait!!!!
I will try to post pics of things we have been doing when Matt lets me use the laptop here at the shop.

Keep on smilin!!!

P.S. Joy if you are reading this please call me, I know your mom and Matt's mom have been talking, Marilyn wants us to get together, and I would love to have you meet our SOFT friends. With school starting we should be able to work something out!!!!

2009-07-20T16:45:00.000-06:00

Camping was a blast. Kenna did not want to be out of the water. We had our own little sandy beach and lagoon. She played so much that she was to tried to stay awake for smores, she did request that we wake her when we did them though. I had fun as well, we bought a new towable for the boat, a three person tube thing, I was out on that for every ride but one, and when I was driving the boat so Matt could play on it. We also borrowed a Molecule from Matt's bro, that was a blast. I loved listening to the water crash onto the rocks right outside my window, it put me to sleep. I was sad to pack up and come home. This morning I got myself geared up to do all my laundry and guess what, my washer is broken. So I am at my mom's house doing the essentials. Matt will try to fix the washer tonight. Some one is also looking at my house as I type this, I hope they want to buy my house!

Kenna will start Kindergarten on Aug 4, and so I must go out school shopping, what a shock to my system! Arianna will start school in September, I am not so sure what I need to get for her. This year has gone by way too fast.

Home and Well

2009-07-14T12:01:00.000-06:00

Arianna came home on Saturday evening, and she is very happy. We have been fighting fevers every morning, but they go away with Tylenol and she is fine the rest of the day, I called the docs today and they said to just keep an eye on her, I know the drill.
My Internet at home is acting crazy, so here I am vi sting Lacey and Jaxson and I borrowed hers so I could update the world.
We have had a couple of showings of our house yesterday and today, lets hope for an offer!!!
Yesterday i went out and bought a slip-and-slid for Kenna, she loves it. I also found the inner child in me and took a couple of slides myself, in my clothes!!!! It was wonderful to just let go.
we are going camping this weekend, to the lake!!! I am excited to get away from life, lets just pray that Arianna behaves and no more fevers, or I will have to stay home with her.

Today

2009-07-10T22:22:00.000-06:00

So I was sitting here debating what I was going to do. Should I work on the blankie Lacey has me doing, play with my Ipod, read a bit, update my Blog, or just go to sleep? Well we can see which one won tonight.
It has been a bit rough here, Arianna is doing good, but she doesn't like to be confined. She is in a bit of pain and the Lortab does not do much to help. She was wild and restless yesterday when all the drugs from the surgery wore off. I asked for pain meds, and they didn't help. I asked for Ativan, I know it works, and the doc said 'no we don't feel comfortable with that plan, it could make her breathing difficult (it really relaxes you), just try some 'Nuben', it will help.' NO it does not help, it made her even more wild. Have you ever tried to hold on to a thirty pound Bass fish? If not come hold Arna and you will see ow much fun it can be(lol). She has this drain in her head, and with all of her thrashing about I was afraid she would pull it out. So I had to hold her in my arms, I think they are about to fall off.
Well I kept bugging our nurse to get the docs over here and to get her some Ativan. Five hours after surgery and three hours of total wild girl, the attending agreed with me after coming in to see her and got some for her, she calmed down and went to sleep at 7:00 and stayed that way till 6:00a.m. She had a worn her self out completely. Why could they not just listen to me. I know my child and I am not new to this whole thing, I know what works.
So today she was feeling even more grumpy, the Lortab makes it so she can't poop. I asked for a suppository to get the ball rolling. I was holding Arna when our nurse came to put it in and well she put it in the wrong hole, but we both did not realize this until i check her and well it was poking out. I called for her and the tech came in , i told her what had happened and she went for the nurse. When she came in she told me that now that she thinks about it that was a little too easy to get in. So long story short, we start over again, right hole, and a load of poo later I make them change, she is feeling more comfortable. We have had to keep up on the Ativan or she just thrashes about. And she really just wants to be held while she sleeps, no fun for me my butt goes to sleep.
Matt, Kenna, and my parents came up last night and tonight to have dinner with us. It's nice to be with them, we both miss them all. My sister made cookies and brought them up, yum yum!
I have taken Arna for a couple of walks, but the stroller they have to use is too small and does not have shoulder straps, so she tries to fall out. The doc thinks that the drain will come out tomorrow and we will be able to go home, how nice, I miss my bed!
But sleep is now calling me and I can no long keep my eyes open. Good Night all!!!

Whew, she is doing well

2009-07-09T14:15:00.000-06:00

First some cute pics of my girls!!!!

Arianna is a true fighter. She came through surgery just great, and is still sleeping. We just started her feeds and she is sucking on her lips, I would say she was hungry.

So the doc told me that this cyst was really a ball of infection, myopic(?) bacteria I believe he said. And yes surgery is the best way to get rid of it, the antibiotics used to kill it a nasty and have to be used for four months. To just remove the ball of junk is safe and very effective, the infection is contained inside the ball, no risk to the rest of her. As to how she got the this infection, we just don't have a clue. We are now just waiting till the drain that she has to be less that 15cc in a 24 hour period. She should be home in three days.

Here's a pic of her ear.

It's a Snell World

Welcome Ossie!

Good eating today

Recipe of the Week

This and That

Pics of our boy!!!

Monday in photos

Where does the time go?

Random Things

Big News!!!

A little tease

No more teasing!

So Much to say, so little time

Kauiai was Ab-Fab

I am lame with this

Here we come.....

Where has the Time gone

Happy Brithday big girl

She hates them....

Where to start?

For Our Dadday

Happy Birthday!!!!

Ugh...Staples vs Stiches

Where to Start

Mothers I Thank..oh and a few Fathers too

I'm Stuck.....HELP!!!!

random stuff

Lots to catch up on

Full House

Craving...I want another one please

what is this funky feeling

Hee Hee

Trisomy Awareness Day

Going home

Arianna is Sick

Getting Settled

Another Trisomy Angel

Were Moving!!!!!

Arianna Crawling

Thought for the Day, Life

Wow....Tantrums and Achevments

Matthew Update

More Prayers ar Needed

prayers please

update and pics of the house

Is this a Seizure? help

My Yoga Instructor

Feeling better

FEVER!!!

Wealth of Info

Arianna Walking

The Sum of It

Simple Sunday

Wordless Wednesday

Modays....Augh

Here comes Thirsty

Sleepy party goers

EOB solved ?

Bad Idea Just Before Bed

Feeling better

Sick Again

Got the Shot, oh and the House

The Week in Review

Augh

Arianna did just fine.

What do I do?

Thanks!!!

*****Urgent Need For Help*****

Funny Pic

No news is good news...Right

We have a House!!

She is sick

Oh Arna

Doing Pro-Active things

Food for Comfort

Angel Wings

Prayers for Tessa

****Childrens Tylenol Recall*****

Well.....

It is Done!

Urgent Need For Help

Childrens Tylenol Recall*