Day 2 of Feeding Tube Awareness 2012!

Why I have/my child has the tube they have now - a highlight on the medical conditions that require tube feeding.

Isabella has a condition called Holoprosencephaly (HPE) that was diagnosed at 20 weeks utero. HPE is a disorder characterized by the failure of the prosencephalon (the forebrain of the embryo) to develop. This is a very serious condition that can be fatal. Along with this condition she also has diabetes insipidus (DI), where she cannot control her sodium levels, epilepsy, and severe acid reflux. It was the severe acid reflux that caused Isabella to get her gtube when she was 17 months old. She was vomiting and arching in pain, so we rushed to Denver. They determined she had severe acid reflux and this caused her to be in horrible pain, so she had her gtube placed. At 23 months old she caught a severe stomach flu and we once again rushed to Denver. Since she could not keep anything down, medications included, she had horrible seizures and her sodium went sky high. It was agreed upon that a GJ tube would be the best option for our situation. The difference between a G and J tube are that the G goes into the stomach and the J goes into the intestine.

Feeding Tube Awareness Week 2012

In honor of our 1st year to participate in the annual Feeding Tube Awareness Week, each day I will be posting a topic and answer. :) <3 *Why awareness is important to my family - What would be different for me/my child if tube feeding was better understood?

Awareness is very important our family in regards to Isabella. We want people to understand her and if they have questions to ask. My biggest pet peeve is when people assume her diagnosis. I also believe that in order to gain awareness you have to be open with everyone. I don't hide Isabella's feeding pump, if she's hungry, she eats. I've had people stare, most ask and some pretend not to see it. It's an everyday part of our life that we must embrace. I love explaining how a feeding pump works, especially to kiddos. It's so neat seeing their faces when they realize how it works. Isabella received her g-tube the end of June 2011. This past month she ended up in the hospital unable to tolerate feeds, that's when we came to the decision that the G-J would be the best for her. Since the original placement she has gained weight and thrived. She no longer has to use so much energy to eat. We still give her food in her mouth and she loves tasting everything!

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!!

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.
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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.

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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!!

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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.

Getting ready for our Denver trip!

Isabella, my mom and I will be heading down to Denver Thursday morning for Isabella's 3 week checkup with her neurosurgeon. As usual I have the knot in my stomach I always do before her checkups. I am always afraid that something will happen.... But this trip is different, Saturday we will be going to the Denver Zoo for the NICU Reunion!! I am so excited for that! It will be so fun to see the kiddos, nurses and doctors from last year. I can't believe it's been 15 months since Isabella was in the NICU. It went by so fast. And it will be Isabella's first trip to the zoo!! Lots of pictures will be taken and posted when I get home.

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On a sad note, Isabella's pediatrician Dr. Wang will be leaving us to go back home to Thailand at the end of the month. She has had him since she came home from Denver. He and I have such a great relationship and we were always on the same page about Isabella's care. I am just praying the new doctor coming in will be like him. I have a meeting with him the 1st day he takes over, to discuss everything and make sure we are all on the same page.
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From your child with special needs: "If I had words I would tell you that every day is Mother's Day for me. That you are the sun in my sky.... That without you, I wouldn't have been able to make the progress I am making. Thank you for being my Mommy. Happy Mother's Day." HOPELights♥

Isabella Jeannette's Easter Pictures 2011!

Here are Isabella's Easter pictures by Moffatt Creations!

We just love Andrea's work and of course Andrea :)!

The Dice Family's Eventful Easter Weekend! 3 States in 3 Days, Colorado, Nebraska & Wyoming!

Happy Belated Easter to Everyone!

Our weekend adventures started Thursday when Isabella had a horrible seizure. This was the longest seizure she has had. That evening her shunt incision site and fontanel (soft spot) started to swell. I called her neurosurgeon in Denver and she told us to get down there the next morning. She was pretty sure that her shunt had failed and she would need surgery to have a new one placed. Tyler and I were both up after a restless night at 2:30am, and were on the road before 6am. When we got down there she had a CT scan done and blood work. She was admitted and it was late afternoon before we got a room on the ped’s floor. Her neurosurgeon tapped the shunt to check if it was still functioning and also to draw a sample of the spinal fluid. Thankfully, the shunt was still working; the excess fluid had pushed its way into the soft tissue around the incision site. She adjusted the shunt’s pressure valve, and within half an hour the swelling and bulging soft spot had disappeared. Her doctor wanted her to spend the night for evaluation and also to wait for the culture to come back for the spinal fluid. Our favorite nurse from last year’s hospital stay had her again that night, Elizabeth. That relieved me to know someone who cared about Isabella was going to be with her that night while we rested. The next day her cultures came back negative for any infection and she was released! We have to go back down in 3 weeks for a follow up. After leaving Denver, we headed to Gering, NE to see her great grandparents for Easter, which was the original weekend plan. We had a wonderful visit with them, a perfect end to a stressful weekend.
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I am a parent of a child with special needs. Everyday something seems to happen that reminds me how different we are. Our lives. Our schedule. Our responsibilities. Listening to the stories of other families. But then I stop and think….it’s ok. I am in you and you are in me, together that makes one very happy family. HOPELights♥
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