Tuesday, February 22, 2011

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.

Sunday, February 20, 2011

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

Monday, February 14, 2011

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.

Friday, February 11, 2011

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!!! :)

Thursday, February 3, 2011

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.