Lots and lots of updates!

So I've been slacking in the updating department..... :(

September 2011, Isabella was hospitalized for shunt failure. Her neurosurgeon determined it was a mechanical defect with her VP Shunt. Due to this, she put a fixed pressure shunt, since they do not have as many mechanisms.
November 2011, I noticed an abscess near the shunt site and her neurosurgeon told us to head back down to Denver. Once there, she was treated with antibiotics, in hopes it would heal on it's on.
December 2011, the abscess came back worse, so we were once again off to Denver, this time Isabella had to have the site surgically cleaned out. It was determined that it was a dissolvable stitch that her body had rejected. Needless to say we will be staying away from those in the future!!!
January 2012, there had been a really bad flu going around Casper and Isabella caught it. :( She was vomiting around her nissan wrap and wasn't able to keep anything down. Her GI doctor advised we head to Denver, so we did. Her sodium skyrocketed due to her DI and not being able to keep anything down. We decided that a GJ tube would be the best route to hopefully keep this from happening again. This was a 12 day stay. We got out right in time for Isabella's 2nd birthday!

Isabella's 2nd birthday:
Isabella turned the big 2 years old on January 25th! I can hardly believe it since we were told if she made it to birth she wouldn't make it out of the hospital. We are very blessed. For the special occasion, my mom and I took her to 'Beauty and the Beast' in theaters, which was very special since I saw in theaters when I was little. We also had dinner with grandma & grand auntie and she of course was spoiled rotten!!

Isabella Jeannette Dice~ Wyoming Cinderella Overall Baby Queen
The first weekend in March Isabella competed in the 1st ever Wyoming Cinderella State Pageant in Cheyenne, WY. It was such a blast and I love our pageant family. She won Queen and will represent her title for a year! Tyler is coming with us to Las Vegas in July so she can compete in Cinderella Internationals!! This is such a great opportunity to promote Holoprosencephaly Awareness. I'm so proud of my beauty queen!

Happy Epilepsy Awareness Day!!! ♥

Celebrating Inch Stones

When you have a special needs child, milestones seem so out of reach, so instead we celebrate inch stones. Being told that your child would never accomplish most things is heartbreaking. So each little thing Isabella accomplishes is such an amazing feat.

This past Monday at OT Isabella was bearing on her legs for longer than 2 minutes. It was amazing seeing her bending her legs and standing back up. She has never done this before, she would just get mad and sit down. This is a major inch stone for her, because we are that much closer to her one day standing and walking.

With HoPE anything is possible. <3

Days 4, 5, 6 & 7 of Feeding Tube Awareness Week!

We went on vacation to see Isabella's grandma in New Castle, Colorado and I slacked on finish Feeding Tube Awareness Week, so here are the last 4 days. :)

Day 4: How has your attitude/family/friends' attitudes changed towards tube feeding? What has awareness of the positive benefits done to change perceptions?

My attitude towards tube feeding has changed 100% since Isabella got her's put in. I was very against tube feeding for Isabella since she could always orally feed. I felt like I was letting her down when the doctors suggested that a gtube would benefit her. Looking back now, I realize this was one of the BEST decisions we have made for Isabella. I no longer have to fight her to take her medications twice a day, I am able to control her water intake, which is necessary to control her DI and she is no longer using precious energy and calories to eat, instead she is using these to grow.

My family and friends have been 100% accepting when we decided to get the gtube. I think that people seeing Isabella feeding through her gtube has greatly benefited people's perceptions. They ask questions and I am very open about answering them.

Day 5: Topic - The need for greater awareness in the medical community - Explain a situation where a clinician didn't understand tube feeding and what was the impact.

We have not run into this situation yet. But if we were to ever, I would be more than willing to explain the process and reasoning behind it.

Day 6: Topic - What do you want clinicians to know about the day-to-day life with a feeding tube?

That we as parent probably know as much or more about our child and her condition. Please don't talk down to me, that is just disrespectful. Also, read her chart before coming into the room, repeating my child's medical history over and over get's old really quick. :)

Day 7: Topic- Share your awareness idea.
Isabella competes in pageants around Wyoming. During the pageants I share her story.

Day 3 of Feeding Tube Awareness!

Understanding Life with a Feeding Tube - Explaining a day in the life/daily routine of tube feeding and all it requires.

Here is our daily routine with Isabella's feeding schedule:

Now that she has a GJ tube, Isabella is hooked up to her feeding pump 18 hours a day at a rate of 35-40 mL an hour. This is only temporary while she heals.

From 9pm to 3pm (on a typical day) she is fed Peptamin Junior (basically an expensive Pediasure). This is easier done when we are home, but I have gotten pretty good at getting it to work on the go. :) Here feeding pump has a pretty good battery life and it rarely runs out when we are on the go. The couple times it has, I've found places that let me charge it.

Every day at 8.30 am and 8.30 pm she gets medications. I administer these thru the g port of her GJ port. This is my absolute favorite thing about her feeding pump. We had to fight Isabella for 17 months to take her medications. Now it as simple as ever.

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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1 Year Evaluation! & Easter Picture!

Isabella Jeannette had her 1 year evaluation at the Child Development Center of Natrona County today and it went fantastic!!
It is so hard to believe it’s been a year, it flew by.
I feel so blessed with the team we have there, Kelly, Ivonne & Sandy.
She has made tremendous strides since this time last year, and I couldn’t be prouder of my miracle baby!
Here are the highlights (these reports are long!):
*In the area of gross motor sills, Isabella can sit supported and reach for switch toys. When pulled to sit, she is starting to flex her head forward. When placed on her stomach over a roll, she is starting to lift her head into extension especially when the light box is placed in her visual field.
*In the area of fine motor skills, Isabella is able to hold a placed rattle and move it around, operate a switch toy and bat at toys placed at either side. She recently imitated banging the rattle on the tray and shaking it.
*In the cognitive skills area, Isabella enjoys looking at pictures in books, especially tactile or shiny books. Her favorite toys appear to be sensory toys which move and/or make sounds. Isabella especially enjoys the app her mother has downloaded onto her iPad, which helps with her tracking and reaching skills.
*In the area of social-emotional area, Isabella is very bonded with her parents. She discriminates strangers, responds to voices and turns to her mother’s voice often during therapy sessions.
*Summary- Isabella has been seen for therapy consistently over the past year. Her parents are very involved in providing her with a nurturing and stimulating home environment. Despite medical setbacks, she continues to be a resilient and joyful child who inspires those around her.
And to make my day even better, they told me I was a wonderful mommy. That never gets old to hear.

Grandma's Birthday..... a little late! & an update

My mom's birthday was April 2nd and we had a blast celebrating it!
Dinner, gifts, then off celebrating with drinks.
Isabella of course enjoyed the ice cream and cake. She has such a sweet tooth.
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Update on everything.
The last couple of weeks have been very hard. Isabella and I have both been battling colds, strep and now I have a virus that makes my throat hurt horribly.
Last Monday I took Isabella to her dr and he started her on breathing meds. When she hadn't improved on Wednesday she had to go get RSV and Pneumonia testing :( These, thankfully, came back negative. The dr said we just had to let it play out. I ended up at the er on Thursday since my regular dr couldn't see me. They diagnosed me with strep. So Isabella and I both started a round of antibiotics. She started feeling better over the weekend and now is back to her smiling, happy self. She was even holding her head up by herself at PT today!

And the verdict is.......

We received Isabella's Waterway Babies system and the verdict is......
A HIT!!
She was a little scared at 1st, since she has never been able to move around in a water setting by herself. Once she was reassured that she was not alone, she seemed to enjoy it. There was a few times where she did fall asleep and startled herself awake. She really enjoyed the warm water.
This is such a great system! <3 I would recommend it to everyone!!

Isabella is WY OLM Official Princess!!!!!!!!!!!!

We are home recovering from a busy, busy weekend!!
Isabella competed in the Wyoming Our Little Miss State Official Pageant 2011 and did AMAZING!! I am so proud of my little princess. She is such an inspiration. We also had the pleasure of meeting some terrific new people.

Isabella won the following:
Wyoming Official Princess
Wyoming's Livin' Doll 2011 0-2 (For the 2nd year in a row!!)
Prettiest Eyes
Prettiest Hair
Best Casual Wear
Best Interview
Best Party Dress
Best Personality Photo
(these were out of ALL the contestants!)

2011 Wyoming HoPE Awareness Queen~ Isabella Jeannette Dice

Last night Isabella was honored at the Paris Dreams West Preliminary Pageant. She was awarded the 2011 Wyoming HoPE Awareness Queen. She received a gorgeous sash and crown. While they were reading Isabella's story, people were crying, and when she finished Isabella received a standing ovation. It brought tears to my eyes and touched my heart. Isabella has touched so many people and makes me so proud.

Isabella is on a new mission.....Weight Gain!!

Isabella had her bi-weekly checkup with her doctor and he put her on a new mission: Weight Gain!
He has her drinking as many Pediasures as she wants along with her almond milk and baby food. He also suggested peanut butter.
Does anyone else have good tips for sneaking in extra calories?

Otherwise she is looking fantastic! She bit her doctor....once again, LOL, he just won't learn not to stick his fingers in her mouth!! :)
She is soooo proud of her teeth, it is adorable.

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I am a parent of a child with special needs. Today I have 10,000 reasons to sit down and cry. But I will focus on the one reason I have to stand back up and keep going - the love that I have for my child. HOPELights♥

Denver Appointments!

Isabella had her post op checkup and EEG on Monday in Denver. These went FANTASTIC!!!
Her EEG showed no seizure activity with her current medicine Trileptal! During the test, my mom & I wanted to take a nap like Isabella was :)
Her CT scan showed no swelling and that the shunt was still working!
She was so not impressed with the car ride home and boy did she let us know.
We don't have to do that trip for another 3 months.

What is Holoprosencephaly (HPE)?

It occured to me today that some of my friends might not know what Holoprosencephaly is.


HPE is a disorder characterized by the failure of the prosencephalon (the forebrain of the embryo) to develop. During normal development, the forebrain is formed and the face begins to develop in the fifth and sixth weeks of pregnancy. HPE is caused by a failure of the embryo's forebrain to divide to form bilateral cerebral hemispheres (the left and right halves of the brain), causing defects in the development of the face and in brain structure and function. This brain malformation can range from mild to severe.
HPE is a condition without a cure or a standard course of treatment. Treatment for HPE is symptomatic and supportive. Children with HPE can also have secondary conditions such as mental delays, epilepsy, diabetes insipidus, pituitary and hormone disorders, movement disorders and spasticity, gastroesophageal reflux, respiratory disorders, and hydrocephalus.

According to the Carter Centers for Brain Research in Holoprosencephaly and Related Malformations,
“It is estimated that HPE affects between 1 in 5,000-10,000 live births. Since many pregnancies with a fetus diagnosed with HPE end in miscarriage, the frequency of HPE among all pregnancies may be as high as 1 in 200-250. Current studies indicate that only 3% of all fetuses with HPE survive to delivery and the vast majority of these infants do not survive past the first six months of life.”

With that in mind, any child living with HPE is truly a medical miracle and is beating the odds with each day they live. Within our member families, we have many children defying these statistics every day. Technically, some of them aren't even considered "children" any longer as they are adults in their late teens and twenties! They are our sources of inspiration and hope.

~Info obtained from the Families for HoPE, Inc. webpage.

Isabella is getting the Water Way Babies System!!!!!

Isabella Jeannette is getting the Water Way Babies System! I am so excited. It is a form of hydrotherapy to help imporove her motor skills. I had seen this system used by some other HoPE families and their children seem to enjoy it so much. Isabella loves being in the bathtub and this will give her more independence.
We should be ordering by the end of the week!

www.waterwaybabies.com