Adrian met his dad's family the Allen's for the first time in 11 years.

Adrian reconnected with his biological dad’s side of the family the Allen. He hasn’t seen them since he was 3 years-old. His father has past away since then. Adrian was excited to meet them and scared all at the same time. What Adrian didn’t realize is that the Allen clan is big. He met maybe half and I’m not sure if that’s even right. Adrian and I went to Philly for his Aunt Surprise 50^th birthday party on July 11. Adrian met his dad’s sister Bev, her husband, his dad’s brother Brian, Cousin Reggie, his two kids, and his sister Alex. In addition, a whole lot of Aunts, Uncles and cousins that I can’t even remember who they all where in this tiny house and yard. I didn’t know you could fit some many people in such a small yard but they did have lots of fun.

I wasn’t sure at first how this was going to affected him when they first found us on face book. We talk about this as a family and Adrian said he want to know them and wanted them to be apart of his life now. We felt that he was old enough to be able to handle it. We are trying to take it slow; however, Adrian doesn’t take anything slow he does everything a mile a minute. He wants to do all kinds of things with them. I have to slow him down all the time. I would love to have half his energy. I did take some great picture at the party. My baby is growing up. We had a great time at the party. Adrian was very happy to meet everyone.

Adrian - slideshows

LaRae's Biopies are in

LaRae’s test results are in. Dr. Ramirez called today to tell us the results of the biopsies. She had good news and had some bad news I guess you could say. The small bowl had no inflammation so no food allergies were present. That was great news. We did not have such good luck with the large bowl. There is inflammation and small ulcerations maybe or bubbles in the larger bowl and rectum. It is hard to explain what you see on the pictures. The biopsies showed that she has inflammation and an infection. She has colitis and it could be ulcerative colitis their not sure at this time. They have to send a stool sample out to see what kind of infection she has after they collect the sample we will start her on flagyl a very strong antibiotic. They might have to change the antibiotic depending on what the test results are. She has to go for a swallow study now too.

Dr. Ramierz will not clear her for her elbow surgery in October at Shriner’s until all these test are completed. I really hope this does not interfere with LaRae being able to have her surgeries. I keep thinking, not another set back it seems like that is all that ever happens just one after another. I still have not had time to reschedule her MRI yet. I keep wondering when it will ever end. I am trying to staying positive. I keep telling myself that there is a light at the end of the tunnel and I will get there someday. Just that today is not that day yet; however, everyday I am a little closer.

Hailey Halo

We were nominee for a Hailey Halo back in January or February. When I answered the phone and it was Sean Vassilaros that was calling on a Sunday afternoon. I was a little confused to why he would be calling me from California. Then he gave us the good news that the Kutztown Ward nominated us for a Hailey Halo and a check would be coming to us by the end of the week. I believe there was a brief moment of silent because I was in total shock. I was unable to form an intelligent sentence I was speechless. I cannot even remember what I said other that thanks and appreciated what they have done for us. It could not have come at a better time things were bad. We had just found out LaRae had spinal fluid on her spine call a Syrinx. LaRae has a long list of other medical problems to go with this. We just were done with 12 weeks of serial casting and driving back and forth from Dupont in Delaware was taking a financial toll. We were having a hard time paying the mortgage. When Sean call came I knew Heavenly Father was listening he answered my prayers that somehow we would make it threw to the next month. After Sean and I talk for a while, I hung up the phone and I told Quintin. He could not believe it either. I went and prayed I thank Heavenly father for answering my prayer and always being there for me when I need him and then of chores the tears finally came not sure how long I cried for. I still cannot believe that someone/someones loved us enough to think that we deserved to be nominated for a Hailey Halo. I will always be truly grateful to them and the Vassilaros for giving us one. I am having a hard express in words how I truly feel about. God Bless them.

This is our story.

Our Miracle baby was born on 11/11/08. She was a surprise for us since I (Sharon) had been sick for 2 years at this time. Doctors had said that I was never going to get better and was not even sure how long I was going to live. After a routine surgery, my stomach shut down and I was no longer able to eat, I had IV and feeding tubes keeping me alive. We were shock when we realized I was pregnant. Doctors had told us this could never happen. I guess doctors get it wrong sometimes. Being pregnant saved my life the hormones started my stomach again and I was able to eat and get all tubes out. That is why we call her our Miracles baby.

We never expected what happen the day she was born. She was born with a rare condition called Arthrogryposis Multiplex Congentia with Amyoplasia. It was five long weeks before we got the diagnoses. LaRae had contractures from her shoulder to her fingers in both limps and has no biceps. It has been a hard year between doctors appt at three different hospitals. She has been threw so much at a young age. There is no great fix for this condition. She has gone threw splinting and serial casting to get her elbows to bend. We have had some progress, however, not a lot. In the next few years, they will surgically to bend her elbow, called tendon release and capsule release. Even with the surgery, she still won’t be able to move them on her own. She might be able to have a bicep transfer. If that was not enough she has been diagnose with a sryinx. She has too much spinal fluid on the spinal cord. There isn’t a great way of fixing that either. Doctors will have to watch to if she will need surgery to drain the fluid. She has GI problems too she isn’t gaining weight and their biggest fear is that she is choking on solid and liquid foods so she might aspirating something into her lungs. LaRae is doing great for what is wrong with her. She has more spunk and determinations then I have ever seen it such a small child.

Threw this all we have had many finical problems too. Quintin work has not been doing well so money is very tight and it cost a lot to travel to these doctors money we just do not have to spare. My faith in Heavenly Father has been the only way I have had it threw this hard time. He works miracles when you least expect it. I have learned a lot threw my daughter. She has been a blessing and a miracle.

Pictures of LaRae

This is their story

I would like to tell you about their story and why they give out Hailey Halo’s. Sean and Wendy Vassilaros had a beautifull baby girl born in August of 2006. You hope your baby is going to be born healthy and for the Vassilaros’s that was far from the case. Hailey was born premature. Her esophagus was not attached to her stomach, she had a feeding tube, lots of surgeries, and spent most of her infancy in the hospital.

The amazing thing about this little girl was she never gave up she always was smiling and it was always a “Beaut’ ful Day.” She fought so many battles and won them. She was determine not give up, I am not sure she knew what that was. You would never had known she was even sick. She had this shine about her that lite up the room. This family has amazing strength they have been threw so much and are now giving back. On August 11, 2009 Hailey past away suddenly she was doing fine. We all thought she had made it threw the worse part of it and now she was home free. Never in a million years did I ever expect to get the phone call I got that Hailey had died in her sleep. I can tell where I was and the time. I can tell every detail of that day. It was liked the world had stopped in time when I got that phone call.

I remember a scripture Wendy sent to me after my daughter LaRae was born that gave me so comforted when I was struggling with the diagnosis. LaRae was diagnosis with Arthrogryposis Multiplex Congentia and Amyoplasia Congentia.

Alma 11:43 The spirit and the body shall be reunited again in it’s perfect form; both limb and joint shall be retorted to it’s proper frame, even as we now are at this time; and we shall be brought to stand before God, knowing even as we know now, and have a bright recollection of all our guilt.

Sean, Wendy and the girls thank for your love and such a wonderful gift.

Pictures of Hailey

Here are some links to the family sites please take a look.

www.haileyshalo.blogspot.com

www.amazinghailey.com