Mikaylas' 3rd birthday!!!!

Its a Princess party!!!!!!

Mikayla turned 3 and she is doing great. We had fabulous party with princess, tiaras, and all the trimmings.

Merry Christmas

We decided to cut our tree Christmas tree down this year. We found a great place in Augusta,NJ. It was a great idea and great memories to make. The kids had a great time and Mikayla managed the mountain and the snow better than we expected.

We will be doing this again next year.

HOW DARE YOU JUDGE, WALK THE WALK BEFORE YOU TALK THE TALK!!

Recentlty it was brought to my attention through the Magic Foundation forum about a sho that recently aired on the Dr. Phil show. It was about what they called designer babies. The apparentyl started with a segment on Human Growth Hormone Therapy. The show was prwetty judgmental and had no medical professional there to give any factual advice. They basically made no indication that sometimes this therapy has to be give the GHD children for more reasons that just short statue and that we as parents are aware and scared to death about all the possible side affects that we don't know about but, also know that our children would not otherwise survive without it. The side effects of being Growth Hormone Def. is detrimental.
Dr. Phil should air another show apologizing.

Below is the letter for the Magic Foundation.


Dec 4, 2009 10:36 am (PST)

: D Dr. Phil:The recent segment of your show which dealt with "designer" children was horrifyingly negligent. The children who are taking HGH are prescribed such BY A DOCTOR. They have a medical condition in which their body does not produce enough of the hormone for their body to function. It is NOT all about linear growth, as your show tried to make it. If a child is diagnosed as diabetic, no one would THINK to refuse treatment. This is the same thing...the correct amount of growth hormone is MISSING in these children and all the injections do is REPLACE what is supposed to be there. Why was there no pediatric endocrinologist on your show who specializes in this treatment? I know why...because you would have gotten a response that didn't fit into your sensationistic aspirations for this topic. You don't WANT to show the truth, because that isn't what gets ratings. But you are being very unfair to those whose families are dealing with growthdisorders; and remember...some of them are (or were) your viewers too.---ear

Date: Thursday, December 3, 2009, 1:32 PMDear Families-Unfortunately the Dr. Phil show aired a segment about Designer Kids yesterday... .and guess what....he led with kids on GH! These kinds of shows are what fuel the problems our kids face! The bullying, the insurance prejudice etc....PLEASE read this email and help us BOMB his email ! Ask parents, friends, grandparents all to send comments. I have listed the links to his show and his email stuff below the 2 letters which Mary and I sent. Feel free to simply cut and paste our letters into the email form for his show and put your own "Ditto" at the top of the email to save time if you want. It doesn't matter that it is copied- he just needs to hear from everyone we can get! Please- this is important!The link to the show is here: http://community.drphil.com/boards/?EntryID=9590Scroll to the picture of the blond girl with the blue eyes on Dec. 2ndTo email comments- go here: http://drphil.com/plugger/respond/?plugID=9164

SPECIAL EDUCATION OR NOT ???

Mikayla will be turning three and about to age out of Early Intervention Services. The question I asked myself was what now. Like many parents the cost of the therapy services your child needs and what insurance will actually pay for seems astronamical. I was told about a transition that was possibly available through a special education preschool within our school district.

Mikayla recently underwent a series of interviews and tests in order to qualify for this service.This is a long and very hard process for your child .My biggest concern was Mikayla' size . She is a danger to herself. She is unaware of the fact that she is the size of a 18-24 month old in a 3 -4 year old world. The tables and chairs are to high and potty training at school will be a challange . Yet I can not hold her back. The best option would be a special ed preschool.

Finally after two months of the child study team peeking in and out of our lives we had our IEP meeting. Mikayla was found eligible and it was found that she would benifit best in a self contained class room. This is a class with only seven mildly disabled children, one teacher and two aids not to mention the therapists that will come in and out of the class on a daily basis. Therapy is done with in the class enviroment they call this an inclusion program (all the children will benifet even if the tharapy given is not intentially directed for them. This class will best benifet Mikayla because it supplies the direct attention that she needs. Mikaylas attention span is also very small and typically jumps from thing to thing very quickly.

This is a bitter sweet victory. I am so happy that she continue to receive services however I was so hoping that when she was done will Early Intervention she would be reay to enter a main stream preschool.

Myrtle Beach vacation 2009

We decided to take a chance and drive 12 hours with three kids to Myrtle beach for our summer vacation this year. It was well worth it we had a great time. We stayed at the Grand Atlantic Ocean Resort right on the beach. We couldn't have asked for a better view. Mikayla had a blast. She loved the ocean and the pools and all the amusements to. By the last day I think she had enough of the sand so we stuck to the pools. This hotel had two large deep pools, two kiddie pools with sprinklers and a lazy river.

We recomend if you ever go toi Myrtle Beach you visit Family Kingdom which is an amusement park for the kids and is just big enough. It had at least sixteen kiddie rides. Also Broadway at The Beach is alot of fun it is filled with lots of shopping and great restaurants like Planet Hollywood, and Liberty Steak House.

On our drive home we decided to stop in Maryland to visit Assateague Island. We were told of wild ponies running along the shore line. This wasn't exactly the case at this time of the year. Apparently the end of July is pony penning season and most of the horses had already been caught or were in hiding. We did manage to see a few wild. Still a great experience for the kids

It all comes down to it that we had a great time. It was a long drive but we will do it again.

RACE FOR AWARENESS

Recently I came across a link http://www.luciandgeorge.com/on The Magic Foundation web site.Please visit this site I know that once you read it you will feel as touched and eager to help as I was, having a child with a illness can be challenging and life changing but if we all lend a helping hand in some small way it will make a BIG difference to a family.


" Welcome Luci Magic Foundation George The Race Blog and Pics Donate Learn more about...
Donate Here!


https://magicfoundation.org/www/docs/1008.1791/

Luci
George
The Race
Magic Foundation
Contact us at LuciAndGeorge@gmail.com


Tin Cup Technologies, 2009
" Your support has been spectacular. In just the first seven days of taking donations towards the goal of $25,000, we have already surpassed the $8,000 threshold. THANK YOU!
George Chmiel will be competing in the Sahara Race in the Western Desert of Egypt on October 25th, 2009. This 7-day, 155-mile foot-race through the Sahara Desert takes place in the hottest region in the world with a ground temperature that touches 140F each day. Approximately 150 athletes from 30 different countries will be participating in the event; competitors are required to carry all their food, clothes and gear along the way. The Sahara Race is a part of the prestigious 4Deserts series, which was named by Time Magazine as the second most grueling endurance competition on the planet.





George will be supporting Luci Horvath, the Horvath family and the MAGIC Foundation in this quest. Luci, a beautiful and gregarious three-year old girl from Houston was born with panhypopituitarism, a pituitary condition impacting growth and auto-immune functions that is chronic, life-threatening and widely misunderstood. This is a very rare condition that is quite scary and would be too much for many families to handle. But the selfless love and compassion within the Horvath household has given them the strength to deal with it and is nothing short of inspirational.





To that end, George's focus is to raise money, awareness and widespread support for the MAGIC Foundation, a non-profit organization dedicated to children with disorders similar to Luci's. The MAGIC Foundation has twenty different divisions, including the Panhypopituitarism division, which is the only one of its kind in the world. Please support Luci, George and the MAGIC Foundation in this noble cause so that future generations are more educated and better equipped to fight this disorder.





As a response to an injury, George started running marathons just two years ago. The Sahara Race is a daunting challenge compared to a one day marathon in normal conditions, however the most daunting challenge will be reaching the goal he has set for supporting Luci and the Magic Foundation: To reach 1,000 donors and raise $25,000.





Of course big donations are welcome, but what is also meaningful is the number of supporters that come together for Luci, Magic and George’s quest.


Here’s how you can help. Reach out to your network of friends and share this amazing story."Jolie Horvath

WATCH OUT WORLD HERE I COME

Meet Mikayla our little blessing. She is a vibrant and beautiful 2 year old little girl. She will capture your heart and make you smile who just happens to be Growth Hormone Deficient as is relates to Ectopic Pituitary Dwarfism. We have finally learned the world must conform to Mikayla not Mikayla to the world.

With this blog we are hoping to bring awarness and sensitivity to all People accross the world big or small. We believe with knowledge comes compassion, and we hope to pass on the knowlege we obtain along the way to all that stop her.


Mikayla was born January 22, 2007 6lbs 12 oz 21" long. The world was good now that she had joined our family . It wasn't until Mikayla was about four months old that we were told at here Well visit something might be wrong.Mikayla had fallen off the dreaded curve and was labeled "Failure To Thrieve", but WHY? Like all parents this is the kiss of death. Well of coarse my mind was telling me the worst. I unfortunately watch all those TLC shows like Mystery Diagnoses my mind was already off and running. Little did we know after a long two year search this was only the beginning of our flight.



We saw more types of doctors , had MRI, Sketatal Surveys, Bone Age and got more maybe diagnoses than I have seen doctors in my life. The scariest diagnose was Hypoachondroplysia(a mild form of Dwarfism)which was not confirmed. Now looking back I am not sure who it was more scary for Mikayla or me. I selfishly thought to myself why me. Why is this happening to me but now I am ashamed to say that I could even think that way. It was happening to Mikayla. That fist year and ahalf really took a toll on our family. I couldn't be happy being a good wife or mother to my other children until I knew what was wrong with Mikayla. I had been raised a Christian and my faith is strong but when something happens to your children you can easily find yourself questioning.



But as usual God is good, he finally brought us some peace. Maybe not the way we would have liked it to be but the was it had to be, we met our Endocrinologist and she was the missing key. We had been searching and searching for a diagnoses for so long but what we didn't know was only once we unlocked the mystery the real work would begin. Mikayla has been receiving four types of therapy (OT,PT,DI,Speech). and she also receives a nightly injection of Growth Hormone more than likely for life. I am not quite sure who it hurts more me, her, or her father. This diagnoses comes with other complications such as Hypotonia(low muscle tone this means even heart and vocal muscles) Hypoglycemia (low blood sugar) risks of high cholesterol due to not processing fat correctly, and of course short statue. Now she is monitored at three month intervals.



We are now trying to take life and what it throws at us day by day. Mikayla is doing great and growing wonderfully. To date she have grown 3 1/2 inches the first six months Growth Hormone Therapy. She is still -3% on the DREADED curve but is expected to enter it shortly. I was told the first year should have seven inches of catch up growth for her. I can't even imagine her that big.