Zachary Update

I'm going to post this update instead of speaking to all of you individually regarding Zachary. I hate to keep repeating this because all it does is bring me down, and then I feel awful and get stressed out. I'm not sure how many of you know but Zachary has 2 different syndromes they have diagnosed him with. 1) Goldenhar Syndrome 2) Jaffe Campanacci Syndrome. Since he was born we have been trying to get to the bottom of all of this and just when I thought we where ok and doing good something else comes to a bubble.

Last May when Zachary had his 4yr physical I mentioned to the Dr. that he is always falling and when he stands at the TV it looks like he is lifting his left foot off the ground. Almost like its shorter than the other. Well after the examination Dr. Anwer confirmed yes it is shorter than the other and he would like to refer him to a bone specialist. Well we went in June to see Dr. Albanese, and he did xrays and looked at him, got full medical history. Well during that visit he sent us across the hall to another dr. for his opinion. Well Dr. Damron was very concerned and sent us for more xrays. Together they confirmed yes he has 1 leg longer than the other and it was by about 1 cm difference. He decided he wanted to see him back in 6 months and re-xray him and see if there was a larger or smaller difference. Well we went back in December and the difference was then at about 2cm difference. Dr. Damron decided to have another dr. look at Zachary and see what they though. Now we are seeing Dr. Palomino. She ordered for Zachary to wear a shoe lift in his left shoe and see if he could handle it. My question was can he play his sports that he so loves. At that point she said yes as long as it doesn't bother him and he is ok. So on with hockey season, and swimming for Zachary it was. Well he doesn't wear the shoe lift because he says it makes his leg hurt (which the dr. said is a possibility), and he is still falling and what not. We just went back last week and got some not so good news. Zachary has limits on EVERYTHING now. No hockey, wrestling, basketball, no-contact sports basically. Well I asked about baseball because thats his life right now, and she said for now ok, but eventually no! I can't imagine the day I have to explain that one to him. Dr. mentioned at the last appointment doing surgery about the leg difference, but after this set of xrays she said it wouldn't be possible because his bone is so weak. She is VERY surprised he has not had a break or fracture yet in it. Thank God for that because keeping Zachary down is almost impossible. So they are in the middle of trying to figure out what step to take next. They are working on getting us into a genetics dr, and endocronologist thinking maybe he has a defiency somewhere. There was also talk about a bone graft but not positive on that yet.

Thank god Zachary is a great kid and loves making people laugh himself, so that way he isn't thinking about his issues. Could be because he is so young it doesn't phase him yet and he has dealt with these issues since birth so to him its just life. When Zachary goes to school he will not be able to do gym class, and they don't want him walking more than 1/2 mile at a time because of the stress on that weak bone. The easiest way to explain what is on his bones, that was told to us at the beginning (I looked it up more so know more now) was he had tumors on his bones. They are benign so no worry there thank god again.

I keep asking why us? Marissa was born with her heart problem and now Zachary with his issues. I guess what it really does come down to is God doesn't give you more than you can handle and figures we are strong enough and knowledgeable enough to follow through with this and see the light at the end of the tunnel. I hope we are getting closer because really I don't know how much more I can take of this with my own life getting crazy with me starting my Nursing School this weekend.

If I haven't been clear on anything or you have any questions please do feel free to contact me. I am sure I can explain better in person, but thought it would be easier to just post it. So please do all think about Zachary and hope and pray that we will get this figured out and he can go back to do what he loves the most and thats being a typical little boy with lots and I mean LOTS of energy playing everything his little heart desires.