A Note Of Thanks

MY SISTER AND LUKE

A note of thanks for my family. A note of thanks to my friends. I would like to thank everybody who sent me a birthday wish note. Everybody has been very supportive in my recent events of life. Especially my family. I really do not put much thought into my birthday anyway. My son was more excited about the birthday cake and blowing the candles out.  Its tough always being stuck at 25 years old . Most women lie about their age, most men don't act it!  Look at my sister, she is almost 30!! I heard a birthday candle company burnt down, everybody stood around and sang happy birthday. And again a note of thanks to everybody!!! http://thinkexist.com/quotations/birthday/
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A Walk In The Park

MY BUDDY

                Definitely a walk in the park it was not. These past few weeks for Luke have been so terrible. We finally found out the cause of his pain he has been waking up with. After all the walk in the doctors, we finally found it was a double ear infection. It's pretty much gone now, thank god! He really has had a few ear infections and I wonder if his DiGeorge Syndrome has anything to do with it. One of the effects of this DiGeorge Syndrome is a low t-cell count. Luke was right on the safe line on the t-cell count. But when he does get sick, It's no walk in the park for him. It hits him hard,  but he does seem to recover pretty diligently.
It's so good to have him back to himself. Our local library offers free passes to local events, and one of them is to the airplane museum. When we walked in , you should of seen the look on Luke's face!  To be honest, I was just as amazed as he was. We took a walk around the whole museum, and in the whole time we were there he did not stop smiling. They even had a table you could walk up to and build a little parachute made out of a Dixie cup and a piece of thin plastic that actually works!  Finding a place to park was easy and only a short walk to the entrance. But otherwise we had a great time there.
   We were also able to take a walk in the park across the street from where we live. We haven't been able to because of his ear infection. It pretty much grounded us for a couple of weeks. We usually take our walk in the park every day, its a ritual for us now. He gets some good exercise and some fresh air. We also frequent Stanley park. That's a nice place to take a walk thru. You can feed ducks and also have a wonderful playground for kids. Its one of the better parks in our area besides some of the other good state park by us    .http://www.nps.gov/index.htm Here is a good link for any information on any parks  in U.S. Its an awesome site just to even check out!
                                                                                

I will be posting more information on the DiGeorge Syndrome with some of the symptoms and effects and some good links for support and information. I really would like to know who said that life is just a walk in the park, they must be a pretty happy person!

Discovering DiGeorge Syndrome

Before I talk about the discovering DiGeorge  Syndrome I want to tell you on how well, my son Luke never ceases  to amaze me. He has been sort of under the weather and his spirits are always so good. Only if we all could be like that. Keep the child in us.We went to the Chester fiddle fest. My father in law plays the guitar in it. There was a hay ride with the boy scouts telling the history of making maple syrup. Luke seemed to enjoy it even though he wasn't quite himself.
    But on a more serious note I would like to tell you about DiGeorge Syndrome or 22q11.2 Deletion Syndrome. When we had Luke we had never even heard of DiGeorge Syndrome. For the first three months Luke was not gaining any weight.What was happening was that his heart had three holes in it  [ 1 Large, 2 Small ] and not enough blood was being pumped, so his body was focusing on working the heart harder rather than growing .It was our primary doctor, that I must say was one of our best doctors, that led us to the cardiologist, which led us to the genetic councilor. She was the one who diagnosed him with 22q11.2 Syndrome, or DiGeorge. Discovering this was very emotional.
       What this syndrome is, a small piece of chromosome #22 is missing. Conditions of this syndrome can vary. The most common sign is the heart problems at birth {Luke holes} and also small distortions of the face[ Luke has a cleft ear]. A cleft pallet is also common in DiGeorge , leading to a nasally voice. He also had a third nipple which is not that pronounced. The problem with discovering DiGeorge Syndrome is that besides the heart problems and the small distorted facial features, most of the signs are sutler. Learning disabilities are definitely associated with this syndrome as is ADD . Luke definitely has this. It's not hat he's not smart, he just needs one on one. His attention span can be nill  in groups. There are other types of names they use beside DGgeorge, depending on the symptoms.The craziest part is that DiGeorge  / 22q11.2 deletion  is said to be non-heredity. But my sisters son has it. His signs of DiGeorge were sutler and was not discovered until he was older, with his learning disabilities, [ I think it's because he's lazy!! LOL]. I will definitely post more on this subject as it is an important part of our family's lives. Here is a link to a very informative site http://ghr.nlm.nih.gov/

                                                                                 

                  As for Luke, he went to Bostons Children's Hospital for open heart surgery to close the holes. Everything went absolutely great, a total success. As bad as the reason we were there, it was a wonderful humbling experience due to the professional, caring and any other good words, people at the Bostons Children Hospital. I will definitely write another post on my experience with them and express our gratitude. God bless them!  And if anybody has any Questions about discovering DiGeorge, please feel free to ask!

Worlds Best Behaved Kid

My poor son. He really is the worlds best behaved kid. Hes been up at night in pain. I have brought him to the doctors twice, and both times the doc said everything looked good no redness or swelling. Then we brought him to an ear nose and throat doctor., and everything checked out OK. so now I am leaning towards a toothache. He has a dentist appointment at the end of the week. He was a well behaved kid at the doctors office. I was proud of him. This is why I created this blog so I can show and vote him the world best kid for the day!

Through all the tough nights he wakes up still in a great mood. He had a huge breakfast between home and at school. Most of the snow is gone and we have been able to bring him to the park. He loves it there. Here is a small video of him at the park. I don't know if anybody will actually read these posts, but it would be great to hear from other people and their stories of their children or relative of why you think u know the WORLDS BEST BEHAVED KID.