Tuesday, August 30, 2011

Hurricane Irene...photos and stuff

 While we still have no electricity (since last Saturday) I thought I'd update from Starbucks.  Here are a few photos that I have either taken or collected from various sources. 

 This is a photo of the Bay that I took on Friday evening - before the storm hit us.  We live only a mile or 10 miles from the bay depending on which direction you want to go.

 The morning of the hurricane as it gets closer

 This is about 3/4 of a mile from our house.....skies are darkening

Anticipation of the storm brewing......

 Practicing making our own candles






 Making our own refrigeration unit...this worked very well as the real fridge started dying and the winds were whipping through

 Night life by lanterns and flashlights

 
 Haven was terrified of the winds and darkness...she slept in the rocker next to me.

 My little peach tree only made it a few hours


 All street lights were out for days....as of Wednesday most are finally back on

 We went driving around the back roads on Monday looking for ice......

 Did I mention we waited in line 40 minutes for ice after heading to PA to get it.......

Little bar near our house

hotel swimming at it's finest


wrong way.......

 Random photos around Harford County of trees and power lines down

  Power lines down everywhere.....

 Not getting power anytime soon

 Not traveling up this road

 Susquehanna mill......

 Power lines holding up the tree

 Wrong way again....

 Unlucky house in Aberdeen......few miles from us

 Aberdeen High School.....

 On Old Robin Hood Lane....only down the street...we love this scenic road

 Off Paradise Road...pratically our back yard

 The Golf Course....

Another unfortunate Aberdeen house
And our power company.....BGE ---- They're on it!


While we sit and wait for power and hot water.....Haven is still out of school.  It was supposed to start on Monday and we are now at day 3 of the 6 days allotted for weather.....After last week's earthquake and hurricane we are sure to get a few blizzards this winter!!!!



Friday, August 26, 2011

Growth Hormone Deficiency

Growth Hormone Deficiency (GHD) is generally due to the pituitary gland being unable to produce sufficient GH to generate the growth process. GHD does not affect intrauterine growth, at least to an extent measurable by birth weight or length, but from the second year of life growth is slower than normal and occasionally growth failure commences from birth. Most cases of growth hormone deficiency are idiopathic, meaning of unknown origin. Idiopathic growth hormone deficiency occurs, it seems, in about 1 in 3800 births.

We met with Haven's Endocrine doctor on June 20th and discussed Haven's need for growth hormone.  She has stayed in the 5 percentile since Hi CY. We decided we would check the levels and see where she is.  We received an email that Haven is at a level 71.  A normal IGF-1 level would be around 250 or so - with a very low at an 88.  Normally, a child grows about 2 inches per year. A child with growth hormone deficiency usually has a growth pattern of less than 2 inches per year. In many cases, the child grows normally until he or she is about 2 or 3 years old; then, signs of growth delay begin to show.  We were told that Haven will need to grow 2 inches by December in order to not be put on the GH treatment.


Haven may have to do a stimulation test before treatment.  What is this?
  • GH stimulation tests help to diagnose GH deficiency and hypopituitarism. For a stimulation test, a sample of blood is drawn after 10-12 hours of fasting. Then, under close medical supervision, a person is given an intravenous solution of insulin or arginine. Blood samples are then drawn at timed intervals, and GH levels are tested in each to see if the pituitary gland was stimulated by the insulin (or arginine) to produce expected levels of GH. Other GH stimulants include clonidine and glucagon.
Treatment?
  • Growth hormone deficiency can be treated with growth hormone replacement therapy. A drug called somatropin or growth hormone (Nutropin, Genotropin, Norditropin, Saizen, Humatrope) is injected into the fat underneath the skin. Shots are usually given daily.
As of now, we are on hold until December.  We will make the final decision then to put her on the daily shots for the next 5 years. 

These treatments are EXTREMELY expensive and have me a little concerned.  We spent $11,000 out of pocket one year and were told it wasn't enough for a tax write off.  The Growth Hormone treatments can cost us between $10,000 and $40,000 a year depending on insurance.  Guess there is no need to stress yet.......







Hurricane Irene


We are ready!!! I highly doubt much will come of this storm..but after a week of earthquakes why not throw in some damaging winds and torrential rain!  We hope everyone stays safe and we've set our destination in case of  an evacuation.



As of now I can't see us being evacuated....we will just enjoy the show.


UPDATED:  Photos from around MD --- 8/26/11

 Moving it's way in!


Empty shelves.....

and long lines.....



ROHHAD in Ireland

 I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...