Thursday, July 21, 2011

2012 National Holoprosencephlay Conference in North Carolina!!!!!

The 2012 National Holoprosencephaly Conference is going to be held in Charlotte, NC. We are so excited to be going and actually meeting the parents and kiddos.
It is going to be expensive to go, so we are doing a fundraiser thanks to a wonderful photographer friend!
I have also added a donation button on the blog, so if any of you want to donate to help Isabella attend that would be wonderful!!

Tuesday, July 19, 2011

Major Updates!! End of June-Present!

First of all, I am so sorry for not updating more frequently. I need to get in a better habit of it.
A lot has happened in the past 4 weeks for Miss Isabella.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
End of June:
Isabella had been crying out in pain and arching for a few days without any relief. I thought for sure that her shunt was either failing again or needed further adjusting. I rushed her down to Denver to see her neurosurgeon. It turned out that she didn't have any shunt issues. After finding this out, I rushed her over to the ER, since there was obviously something going on. It was at this time Tyler decided he needed to be down there with us. At the time he was west of Minot, ND. He flew down and was there later that night. In the ER they did the usual bloodwork, ect. Nothing came back unusal, so I asked if they could do an eeg, since it might have been a new kind of seizure. The ER doctor decided to admit her based on past history. I later came to find out that the floor pediatrican told the ER doctor to listen to me, I knew what I was talking about. As soon as she got settled on the ped's floor, they came and did an xray of her abdomen since she looked like she was straining. Turns out it was severe constipation. :( She was extremely backed up. It wasn't until the next morning that all the suppositories and miralax took effect and then it was major poopage! Luckily her eeg came back 'normal' for Isabella. While we were there, they did her first ever swallow study. This came back with severe reflux and a soft palate disorder. Due to the reflux we met a with a GI doctor. He reccomended an upper scope which was done the next day. This found slight irration, but it wasn't as severe as he thought it would be. Which means the reflux hadn't been going on that long. He reccomended a nissan wrap with a g-tube. Now I have been anti-g-tube since before she left the hospital the very first time, since she could take a bottle. I had a nice long cry about and we decided it would benefit her more to get the surgery, since they will not do a nissan wrap without a gtube. Her surgery took about 2 hours and then we were allowed to see her. It was so difficult seeing her in pain, it absolutly broke my heart. The g-tube has been a great blessing, Isabella has already gained 4lbs!! And she is growing quickly. She also loves that she gets fed all night.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

July 11th, 2011

Isabella competed in Western Dreams Preliminary Pageant in Casper.
She did so AMAZING!!! And looked gorgeous.
She won:
best hair, eyes, smile, personality and photogenic.
Queen in her age group and Overall Beauty
We also rode in the Central Wyoming Fair and Rodeo Parade!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

July 14th, 2011

Isabella was asked to throw the 1st pitch at a Casper Ghosts game in honor of Epilipsey Awarness. It was such a great experience! Tyler threw the ball for her.
Here is what the announcer said:
Meet Isabella Dice. Isabella was born in 2010, with a rare medical condition that is complicated by epilepsy. In her short life, Isabella has endured numerous surgeries, hospitalizations, and life threatening illnesses, yet her mother says that "Once you choose hope, anything is possible." Epilepsy affects over 300,000 children like Isabella in the United States. Please join the Casper Ghosts, Friday, July 15, for Epilepsy Awareness night. Autographed, customized bats will be auctioned off with all proceeds going to the Wyoming Epilepsy Association, to benefit Wyoming families who are fighting epilepsy.