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.