Wiggle,wiggle

        Finally, after much anticipation, Austin lost his first tooth. I know this is no big deal, right? With Austin it is. Trying to be excited about this monumentous milestone for a kid his age all I could think about is there any bleeding. I know a little blood is expected, but how much is enough and when should I be concerned.A tropper he is and when it first fell out he did not even realize it fell out until he noticed the blood in his mouth, we cleaned him up and he still wanted to go to school so he could ask the nurse for the pirate treasure box for his tooth. She of course gave him one and looked at me a little nervous incase it began to bleed again.
Why you may be asking is this such a big deal, why I answer is that if you don't know Austin has hemophilia and Von Willebrands disease, both blood clotting disorders.
        Austin, a fairly routine pregnancy unlike Henry, was born by csection ( he was stuck) , on June 2, 2004. A picture of health and beauty he was. Sent home in three days without a concern in sight. By three months he began having bad sinus infections, they would never end. Countless antibiotics, green snotty noses, fevers, and non stop vomiting due to such congestion, would it ever end. This went on and on for months. At the time, I worked in a day care and Austin was with me in the infant room. His poor teachers, thankfully they understood there was nothing more I could do and we would just have to deal with it. By eight months or so, the dr's were beginning to get a little concerned so they sent us to CHOP to an ENT. There it was quickly discovered that Austin was a sick little boy. His tonsils and adnoids were very enlarged and they wanted to take them out ASAP. This was the only solution for him to get any relief even though this surgery was unheard of for such a little baby. WOW!! Surgery, on our baby. We were reassured over and over that it was OK and we would have the best from CHOP on his case. Luckily at the time, CHOP Voorhees center was right around the corner and I could get Austin there when he had an appt. Off now for preop bloodwork.
        By the end of the afternoon of his bloodwork, a phone call that will shape the rest of our childs future. Surgery could not be done, you are scheduled at CHOP oncology/hemotology office Monday morning STAT. Too many problems found in his bloodwork was the explanation. Oncology? Cancer? No something must be wrong, words could not describe my feelings and how was I going to get through the weekend not knowing what was going on. Monday morning came and here we were with Austin at CHOP meeting a whole team of dr's, nurses, etc. who would be getting to the bottom of Austin's case. Dr. Travis is who we first met (now retired) , she told us there were concerns about his white cell count due to the amount of infections and that they were going to test him for cancer, but his clotting times were not right either. Many questions about family history were asked at this point and I had to act dumb, because I really had no clue. At that, now was the wait of a lifetime after they took blood form me, Shawn, and more from Austin. It had to get sent out to get to the bottom of so many questions.
          The phonecall came, thank God no c word, but many other questions lingered about his clotting times. His bloodwork showed he has a dual diagnosis of hemophilia A and 2N Von willebrands. WHAT?? Down to it, his blood does not clot right and two diferent things are causing it to be that way. It must run in the family they told me. Afterwards finding out that it did and now I am left to deal with it. Now surgery really could not be done until hours of tests are done for them to find the right treatment, different medications put through an iv and his blood drawn at different intervals. We would be sitting there for hours like the chemotherapy kids, playing games, and trying to stay focused and positive, all while I was very far along with SaraAn's pregnancy, and with Henry along. Thank goodness for the childlife team at CHOP who were all a big help to occupy.
           Now with the proper medication figured out, now to go through when it is needed and to learn to deal with his diagnosis. I could of never imagined what it was like those first few months dealing with home health care, helmets to protect his head incase he fell, the pain of the sticks if he was hurt, and just the simple fact of trying to let him be a kid and telling him to be more careful all at the same time. Only God's strength could get us through, as it did to this point. since all this Austin has under gone two surgeries, more problems with other things, and now simply trying to let him be a "normal" little boy, who is so rough and tough. More on Austin to come later, but as I finish this now, I am quickly reminded by him to not worry, it will all be OK. If only as he grows up, he realizes, that is the best attitude and that we all need to be reminded of that sometimes.