Here we come.....

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

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

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....

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?

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.

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.

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.

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

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!!!!

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

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

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.

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!!

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

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!!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

Were Moving!!!!!

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

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

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

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

******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

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

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

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.

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

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

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

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!!!

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

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!