iPad Apps!

Isabella has had an iPad since October 2010. She absolutely loves it and controls it amazingly. It is one of the best OT tools we have for her!

Playing Tap Tap Baby!

Her all time favorite apps are:
Baby Rattle Toy
https://itunes.apple.com/us/app/baby-rattle-toy/id384036344?mt=8
Tap Tap Baby (Her reactions to the Monkey's emotions are so funny!)
https://itunes.apple.com/us/app/tap-tap-baby/id376373792?mt=8
iLoveFireworks Lite
https://itunes.apple.com/us/app/ilovefireworks-lite/id305321745?mt=8
Cause and Effect Sensory Light Box
https://itunes.apple.com/us/app/cause-effect-sensory-light/id533976433?mt=8
Draw Stars !
https://itunes.apple.com/us/app/draw-stars-!-play-musical/id367460661?mt=8
Pocket Pond
https://itunes.apple.com/us/app/pocket-pond-hd/id370256313?mt=8
Most of her apps are either free or cost at the most $2.99.

Playing Baby Rattle Toy


We have had the Targus Truss Case & Stand since we got the iPad, it has been AMAZING! It hardly looks worn and provides extra cushioning for it. It also provides a way to keep the iPad propped without anything extra. These are a bit more expensive than other cases. $55
http://www.targus.com/us/productdetail.aspx?regionId=7&sku=THZ06103US&PageName=Product%20Search%20Dimension%20|%20Targus%20USA&productCategoryId=5&bucketTypeId=0&searchedTerms=&navlevel1=shop&cp=&bannertxt=

I would also highly recommend getting a screen protector put on as soon as you get it. The one we have was bought at Best Buy and we couldn't use it for 24 hours. But supposedly (I am so not brave enough to try!!) you can take a key and drag it across the screen with NO damage. It hasn't scratched, bubbled or peeled in the 2 years it's been on. Total cost with installation was approximately $50.

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!!! ♥

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.