Arianna has been growing and changing so quickly. She is now 2 years and 7 months old. She love to roll everywhere and can tummy crawl pretty quickly. She has her favorite toys, a ball that has lights and plays music, it can even roll away from her, it's great. She received her wheelchair just in time for Christmas, she likes it very much, it puts her up higher and she can see so much more of her world. She is a very big girl, she now weighs in at 30 lbs and is 35 inches long. we recently went to see a dentist and thought she was 5 years old, he was amazed at her size, he didn't think trisomy kiddos got so big. As for her teeth, they are coming in slowly due to the fact she is on Digoxin for her heart and the meds make the gum tissue to inflame, he wants to do some work in there to help but is in no rush, her teeth are healthy and it can wait.
We are scheduled for another round of Botox to the main salivary glands. It has been very helpful in decreasing the amount of saliva she has, and has reduced the amount she aspirates.

We are on a trial of The Vest, it is a chest physiotherapy used for those with Cystic Fibrosis, it loosens the junk in the lungs so that it can be more easily coughed out, Arianna has not had any serious respiratory illnesses since starting treatment in October. We are however still battling with our health insurance to cover the cost of the machine, they say it is not a proven treatment in children with Trisomy disorders.

She has not yet been able to sit up, but she works at it very hard, she has mastered the Pilates 100. She can get up on her hands and knees, but when you start to cheer for her she gets excited and then falls over, we have to keep our praises in check so she doesn't get hurt.

She has a boyfriend, he is three year old Jaxson, he has Downs Syndrom. They love to play together, Arianna is helping him to find the smile he lost due to a hypoxic brain injury. I have also found a best friend in his mom Lacey, we share the same pediatrician, and it is great to have some one so closer that knows what you are going through.

We are looking to buy a new home, we need a single level home, she is getting much heavier and more mobile, I fear she will roll her way downstairs. And my back is beginning to suffer from all the carrying up and down. This is a tough time to sell the home we are in, but we hope things will pick up soon.

I update our family blog often to keep our friends and family in the loop, please stop and visit sometime. AriannaJolieSnell.blogspot.com

Julianna

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Update 1-30-08

I am asking for prayers. Arianna was admitted to the hospital on monday, she has RSV and pneumonia. She has been up and down for the past three days, please see her blog for all the details, http://ariannajoliesnell.blogspot.com.

Thank you for your love and support.
The Snell Family
 

Update 1-4-07
I just wanted to update you on her cranial stenosis surgery.  All went well, she is a fighter.  She pulled out her ET tube when she returned to the PICU after her 6 hours in surgery.  She is a tough little angel.  She is looking good and the doctors are very pleased with everything.  I will send new pictures when we get them.  Thanks to all of you that had her in your thoughts and prayers.
Julianna

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Hi my name is Julianna Snell, I am the mother of Arianna Jolie Snell, born June 19, 2006 ( same day as mommy's birthday).  

We did not know anything was wrong until she was born. She was full term at 39 weeks, weighing 6 lbs 2oz.  It was a quick delivery, from the time my water broke to her birth was just under 2 hours.  She was rushed from the L&D room to the nursery to assist her breathing. The doctor on call knew she would need more help then they could provide so the called in medical transport and she was taken to Primary Children’s Hospital 4 hours after birth.

Three days later we were told she had Trisomy 13, we were given only a few days to be with her.  After 12 days she was sent home, the doctors told us to take her home to enjoy what time we had left with her.  She has thrived at home and was taken of Hospice care at 12 weeks.

She is now six months old and doing great. She eats from a bottle and sometimes nurses. She has done so much they told us she wouldn't.  We are scheduled for cranial stenosis repair on Jan 3rd.  We have great faith that she will do well.  We also hope it will put an end to her seizures.

Your prayers are appreciated at this time.

Thanks
Julianna

Matthew & Julianna Snell m_jsnell@msn.com