Friday, August 8, 2008

Black Out and Health Updates

Early Thursday afternoon at Tyndall AFB housing residence experienced a power outage. At first most thought it was due to an approaching storm. After a few minutes had past it seemed unlikely that it was weather related. I called my husband who became intrigued and called the housing office to see what was the problem. The answering service picked up and explained it was a regularly scheduled outage and should be returned by 2pm. This sent my self and others into a crappy mood. Why weren't we notified? Why did they choose one of the hottest times of the day to cut the power. Outraged I called the office myself and told them to forward a message that I was irate and how do they expect those with health issues to be without power... Like the nebulizer that plugs into my wall in order to save my daughter in the event of an asthma attack. If I was given proper notice I wouldn't have been home at all.. but rather at the store or someplace else with air conditioning. It wasn't until approx 4pm that we were notified via the load speaker and base wide email that the power outage was due to an accidental cut cable.

They announced that power should be restored by 6 or 8 pm. A few minutes later a second message came over the load speaker proclaiming that they didn't expect power to be restored until 10pm that night.
No air conditioning was making the houses like saunas so many residence took to their cars and headed off base. My family drove around, took pictures of the "repair site" then tried to think up ways to stay cool. My neighbors turned on her sprinkler and we headed over to keep each other company. Once it began to get dark people were out in the streets with flash lights and police patrolled the neighborhoods to maintain peace and safety. Finally at 930ish pm the power was restored and we were able to tuck our exhausted children into bed. It was definitely an interesting night to say the least....

Friday we had to get up early and head to Destin for our follow up appt with the endocrinologist. We were to find out what the tests showed and what the next steps were. I must say that I have never been excited to find out one of children were ill but this appt was going to end 2 years of questions with no answers. Neela's growth hormone levels were within normal range. Actually only one point above normal level. I thought that meant no hormone therapy.. I was wrong. The doctor explained that GH (growth hormone) is only one step in the chain of growth. It starts in the head with the pituitary gland and then moves throughout the body. The liver then produces a hormone that is the primary source for bone, tissue and muscle growth. THIS is where the problems lies.... insulin-like growth factor-1, or IGF-1 was the problem. Neela's levels were well below normal (34 when the normal range is 56-110)

This means that Neela will need hormone replacement therapy to help her grow. It is a daily injection that I must personally give. Over the next 3 months we will learn if Tricare will approve the treatment, if approved the 3 month supply will be sent directly to me, and then we meet with the doctor in Nov to learn how to give the injections. I have been diligently reading a website called Magic Foundation they support and help educate people and families with growth issues. I am learning a great deal of information and details about side effects and over all changes in her growth. We are excited to see an end and a beginning to her healthy road. Thanks to everyone who asked how she is doing and all of my friends for your support. If you have any questions please feel free to comment and I will do my best to answer.


Anonymous said...

Best wishes to your family. I am glad you are finding how to help your little girl. She is such a little doll!

Cherry Lane Jane said...

I hope this therapy works well for her and that the insurance pays for it! Good luck:)

I also have kids with asthma and a nebulizer and that would have made me spittin made to say the least! To on purpose turn you power off in the hot summer with no warning...some people can be so inconsiderate. At least you had neighbors to keep you cool.

Anonymous said...

From Jamie at the MAGIC Foundation. Thank you for putting information in your blog- families are already calling us for help because you listed us! As an AF military wife and mother of a GHD daughter....if you ever need me- call! Best of luck!