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

Valentine's Day 2011~1 Week Post Op

This Valentine's Day was extra special this year for two reasons:
1. 1 year ago today Isabella was life flighted for the 1st time down to Denver. She had suffered a brain hemmorage caused by meningitis which caused her shunt to malfunction. We didn't get to celebrate her 1st Valentine's Day. :(
2. It has been 1 week since her new shunt was placed and she is doing 100% better. :)
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Here are some interesting facts I got off of another families blog about HPE.

Isabella's condition occurs about 1 in 20,000 out of every birth. (0.00005)

1 in 200 make it through full-term pregnancy alive. (0.005)

Less than 2% of those survive through the trauma of birth to their first breath. (0.02)

Less than 1% of those that survive come out without health complications, which will allow them to live during their short hospital stay. (0.01)

Total odds = (0.0000000005) or a 1 : 20,000,000,000 chance.

The chances of winning the lottery are greater.

Isabella is truely a miracle baby. She is the strongest person I know, and I admire her greatly.

Whirlwind Week for the Dice Family!

Wow, we have had a whirlwind week and it's only Friday!!!!
Here's a recap:
Isabella still wasn't feeling well after the weekend and she was still arching horribly, so I called her neurosurgeon 1st thing Monday morning. By 8.45 she told us to get to Denver as soon as we could. I was on the road with her by 10.45. Tyler got pulled off his job and was about two hours behind us. When we arrived in Denver, she was catorgized priority 1 and was sent to ct while the operating room was being prepared. Within two hours of arriving she was in surgery to have a vp shunt put in. This was the same type of shunt that she had when she was 1st born. About an hour after her surgery she was smiling, giggling, eating and being Isabella again. I am so thankful we have such a wonderful team of dr's in Denver. They are amazing. She is back to being herself and feeling so much better. I love that she only had to be in the hospital 2 days!!! :)

Update from a worried mommy :*(

Well things are not going to well in the Dice family. :(
Poor Isabella started arching her back and crying out in pain if I tried to make her lean forward or straighten out. She started this Monday, which was the same day she recieved her 1 year old shots. I feel so bad that she is hurting.
I took her to the doctor today and her put her on Nexium for acid reflux and also ordered a CT scan. There might be a possibility her hydrocephalus is back. :(
This scares me so bad because that would mean another surgery in Denver.
The CT scan was done about an hour ago, so now I just sit and wait for the results. I am so thankful that the hospital it was done at put a STAT order on it. They are so great to us!
Please pray for Isabella that everything will be okay.

Isabella Jeannette's 1st Birthday!

Isabella Jeannette is 1 Year Old!!!!!!

I cannot believe, my darling baby girl is 1 year old! It seems like yesterday we were heading to Denver to have her. What a year it has been for everyone who know's Isabella. It has been such a blessing.

Her birthday was WONDERFUL!! We went to the mall with grandma and of course Isabella was spoiled by me :) Then it was off to dinner at the Fort Diablo in Glenrock with grandma, auntie and Barb. Daddy suprised us and was able to make it!! He had been working in Colorado. Isabella slept through her birthday, but I'm sure she enjoyed it. :) She will also have a party Saturday when her other Grandma comes up from Colorado.

1 Week Until Isabella is 1!!!

Wow, 7 days until my little girl is one year old! I cannot believe how quickly this year has flown by. Everything is falling in line for her two parties. One is going to be on her actual birthday and the other the weekend after. I got both of her outfits two and pictures will be done next Friday! :)







HoPEfully we figure out what's going on with her bloodwork. For some reason on this last test her calcium was high. Her endo thinks this could either be a fluke or something to do with her phosperious levels. We will redo her bloodwork next Monday.

Welcome To Holland

*I came across this essay the other day, and it has stuck with me. I think it does explain how I felt when I found out Isabella's diagnosis. The fact she may not do the typical things, be a typical child, ect. I was extremely sad and did mourn losing the normalitity of a typical pregnancy and fearing what to expect.
Looking back now I would not change her for anything in the world. She is our perfect Isabella Jeannette Dice.

Welcome To Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

17 Days Until Miss Isabella Jeannette Dice is 1 Year Old!!!!!

Wow, only 17 days until my precious baby girl is the big 1 year old. This seems so unreal. It was this time last year, we were waiting on her to arrive, worried what would come after that...
She has come so far since then.
~She is starting to crawl
~She eats everything orally and is starting to put things in her mouth intentionally :)
~She puts one foot in front of the other at tumbling on the balance beam (her teacher was sooooo excited she was doing this!!!)
~She is tracking and holding her head so much better now with her glasses
~She is interacting with her toys and switches wonderfully

~And most of all- She is our pride and joy- our world.

22 today!

Today is my 22nd birthday, and it has been absolutely wonderful! I couldn't imagine my life any other way.
22, married, with an 11 month old.....perfect to me!!