Tuesday, April 1, 2014

Summer all year!

Wow I've done it again, gone a couple week without a single blog post! 
We are just having too much fun in the sunshine year round we have here in SoCal! Man I could never give up this weather now that I've had it! 
Sunday we left Arina with one of our Disney friends, and Jax spent the afternoon at Auntie boo's. That meant some free time with the older boys, in which we hit Universal studios. It was a madhouse! I've never seen universal so busy! Busier than Disneyland! 70+ minute wait on every ride.  
We got a new pound puppy yesterday. It will be nice to have a furry companion back, and we hope to have her trained as a service dog for both littles. 
Everyone have a great week, we are still on spring break here!

Friday, November 2, 2012

We moved

If you didn't already know, we moved Jaxsons blankies to Facebook. I'm going to be closing this blog down as soon as I get all the pictures transferred over. Please "like" our page. The link is here!

Wednesday, October 26, 2011

Meet Celia

Born March 7, 2007, Celia appeared to be a healthy little girl – she developed normally beyond her first birthday, waving and saying “hi” and learning to use a fork and taking steps… but we noticed (more than two years ago now) when Cel was about 15 months old, her skills had plateaued, and she was regressing. She stopped using any of the words she’d acquired; eventually she stopped trying to walk. Developmental Specialists at Nationwide Children’s Hospital ordered an MRI and found abnormalities in her brain, but no one could tell us why. Celia stopped sleeping well about that same time, waking 20 times or more each night. An EEG revealed myoclonic seizures (small single jerks, that we weren’t able to notice) were likely waking her. Celia lost the ability to feed herself and her vision became limited. We visited lots of specialists and Celia’s neurologist ordered lots of tests; after months of searching for a diagnosis, it was determined in January 2009, shortly before her second birthday, that Celia has NCL1 -- infantile neuronal ceriod lipofuscinosis, an autosomal recessive disorder more commonly known as Batten Disease. Afflicted children have an enzyme deficiency that causes neurodegeneration. Batten Disease is rare, about 2 in 100,000, and there are only about 150 children living with it in the US. Sadly, families may have more than one affected child. At this time NCL is always fatal, so we were relieved to learn that Celia’s little brother, Tucker, does not have Batten Disease. Children with the disease suffer mental impairment, worsening seizures, and progressive loss of vision and motor skills; most do not survive beyond their first decade.
Celia takes lots of medicine, her food has to be pureed, and she is no longer able to drink even thickened liquids. She used to enjoy Baby Einstein DVDs and Justin Roberts’ music, but those things don’t calm her the way they once did. She still enjoys an occasional stroller ride around our neighborhood, and a dip in her grandparent’s hot tub once in awhile, but her favorite thing to do is to snuggle on someone’s lap and rest. She lacks any purposeful movement, her fight to crawl now a distant memory, although we enjoy watching her stretch and yawn when she wakes up. She sleeps much of the day, but she smiles a lot more, too. We cherish her, and the time we have left.

Thursday, September 15, 2011

Meet Gabriel

Gabriels story starts before he was born. My 19 week ultrasound was picture perfect and I also declined all early testing. Then at 31 weeks (the day after Christmas) we got horriable news. There was concern. The concern was not for Down Syndrome but for T-18 (among other things), which is fatal. They told us he probally would not make it to birth and to prepare for the worst. That is when we asked for the sex and named him. We grieved, cried and told Gabriels older siblings/family. On Jan. 9 at 33 weeks to the day My water broke. Gabriel was born later that night by csection, Jan 9, 2009. I was told I would not get to see him and I didn't. He was whisked away. At the wee hours of the night I was wheeled in to see him. That night we were told of the possiably he had Down Syndrome. As many babies in the NICu he had many trials. On March 9, (one week after his due date he was trached and gtubed. That still didn't fix things and so the vent was added weeks later. After 5 months in the NICU he came home. Then in Jan 2010 just days after turning 1 we learned he had AML M-7 Leukemia. One week later he was admitted to the PICU (as he was on the vent) and started chemo the next day. After round 2 things went horriably wrong. He got sick and sick fast. First the temp, blood infection, septic, systems shuting down, could not control body temp and his lungs where filled with fluid (Acute repitory distress syndrome.) He was placed in a medical come, on the oscillator, nitric and 13 med pumps. That first weekend they bagged him multiple times and docs went over our last stopping point for Gabe. After 31 days he went back on the convential vent and the weaning of his meds began. This is when a friend of mine put me in contact with Lacey - as Jax and Gabe are alot alike. We went home from the PICU after 4 months and only 2 out of the 6 chemos done. Doctors and us agreed any more chemo would Kill him. We also left knowing if it comes back no more can be done. A year and a half later the remisson holds and many hospital stays since. Gabrielnow plays with his new blanket for Jax and Lacey at home. Believe it or not this is the short version!!!!

Sunday, August 28, 2011

Blankies are on their way.

I'm ever so slowly getting this started back up again.
4 blankies have been sent and probably received. Just waiting for pictures!

I just realized that all blankie requests that were made before we went to Ukraine last September, have been lost. I had printed them all out, and they have disapeared, and now disappeared from the computer as well. If you made the request after I started up again, your fine!
I'm so sorry if your blankie request was lost. Feel free to do another request. Its been slow going, house is now under contract, and probably moving in a few weeks. I just pray that when life settles again we'll be up and running smoothly again!!

Bear with me some more please!