Sunday, December 16, 2012

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
Tap Tap Baby (Her reactions to the Monkey's emotions are so funny!)
iLoveFireworks Lite
Cause and Effect Sensory Light Box
Draw Stars !!-play-musical/id367460661?mt=8
Pocket Pond
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|%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.

Saturday, June 2, 2012

Seizure Monster!

As any parent of a child with epilepsy or any person with epilepsy will tell you the Seizure Monster is NEVER welcomed.

Isabella has suffered from confirmed seizures since she was 2 months old. We have been able to control these with medications, unless she is sick or teething.

Lately Isabella has been having new 'episodes' which I fear are Absence Seizures. I have a conference call on Monday with her neurologist to discuss these new episodes. Luckily her backup medication Clonazepam seems to be handling these and so far she hasn't had an episode today.
This was during an episode yesterday. :(

I am a parent of a child with special needs. My superpower is the ability to hope beyond what the eye can see and faith that through love all things are possible. I have what it takes: the presence of mind to do what I do best - love with all my heart and BELIEVE. ~HOPELights

Thursday, May 24, 2012

Include Everyone..

I have been looking into activities for Isabella to participate in, specifically Special Olympics.
While researching this, I came across the follow:
Athletes must be 8 years of age or older.
Children from ages 2 1/2 to-7 years of age can participate in the Young Athletes Program.
This really bugged me for some reason. I don't like the minimum age limits, especially because with Isabella we don't know how long we will have her for. I would love for her to experience EVERY experience that I could possibly give her. To me it feels like they are leaving the families of young disabled children out, when THEY are the ones that need the most support and sense of family. It is a scary world when you have a special needs child and don't have a network of other families.

I was also told of a pageant for disabled girls and women that is going to be held in Casper this weekend. I thought this would be such a blast for Isabella to enter. Unfortunately once again the littles are left out.
Ages 5-9: Rising Stars
Ages 10 -12: Preteen
Ages 13 -15: Jr. Teen
Ages 16 -19: Teen
Ages 20 – 23: Jr. Miss
Ages 24 – 27: Miss
Ages 28 – 35: Sr. Miss

When I asked the director about the ages, she informed me that that was the way they were run and I wasn't given any further explanation.

I guess I hate when groups of special needs kiddos are left out. If you are going to have a special needs event, PLEASE include all ages. Even if the littles can't do as much as the bigs, they are still an important part of the special needs community.

Monday, March 26, 2012

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!!! ♥

Tuesday, March 13, 2012

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

Tuesday, February 14, 2012

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.

Tuesday, February 7, 2012

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.