ohblahdi’s Weblog

{July 10, 2009}   Things are looking up.

When Melody was born I was so happy I had the perfect healthy child. If you don’t remember, Alannah’s birth was a nightmare. Everything that could go wrong did go wrong, well not everything I guess. She was in the nicu for two weeks and I was a disaster. So when Mel came out with her cute little curly hair, round head, and healthy body, I was ecstatic. Then…she was always sick. Crap was everywhere, vomit everywhere. Found out she was lactose intolerant, when she was two. That began the spiral of issues for her. It was amazing to hear that for once her tummis did not hurt. I was so happy. Then, I noticed that Melody was always directly in front of the television. I know that this in not entirely unusual because the tv has powers of its own, but it was all of the time. She also always held books up to her face like she was smelling them. When she wanted to talk to you she would get up in your face and touch it. So, genious that I am, made an eyedoctor appt. The eye doctor was schocked and didn’t know how to confront me. She made an appt. for me to see a pediatric opthamologist. The opthomologist gave me the bomb, “Have you ever heard of Marfan’s Syndrome?” Um no. I was scheduled to see pediatricians, heart doctors and an eye surgeon. Melody was scheduled for surgery. We had to make the decision to let our baby be put under and have her lenses removed from her eyes. They said that the lenses had no connective tissues holding them on at the top making her legally blind. The surgery would also make her blind and she would need glasses until she was older when they can do a transplant. Ugh. What a heavy weight. So we went through with it. My poor baby had to walk around looking like a pirate with patches on her eyes. She had to go through that surgery twice. As time went by, she got taller and taller, but the eye doctors were able to fit her with contact lenses, which were a nightmare, and glasses where she can see nearly 20/20.
Now she goes to a pediatric cardiologist every six months to check the size of her aeorta. With the syndrome, her aeorta (sp?) cannot stretch and retract, it only grows larger and thinner when pushed. We have to monitor its size in case its size gets critical. We have been told that she will eventually need surgery from the beginning. This is no surprise. However, after finding out that Alannah has scoliosis, we thought we should check Melody as well. Crap, she has it worse than her sister. Mel has to wear this annoying giant plastic brace 23 hours. I think she hates this more than anything. It is really uncomfortable. She says the doctor told her she hides her scoliosis very well. Just another condition brought to you by Marfan’s. Thanks.
So, when we found out that Mel can’t go to China, which we have been preparing for for a year, we were hurt for her. What a let down. I was terrified for her anyway, the wall of China was my biggest fear. All of those steps, so it is kind of a relief, but a sad one. What if something would have happened there? Oh my God. Anyway, the idea that a heart surgery is in our very near future is a little daunting, I know that everything will go okay and Mel will be alright. We will just have to go with the flow. It is hard not to carry the burden around with me. That I have to let go. I do kind of wish that she would just break down and let her emotions out. I know she is mad and scared, she just won’t show it. She talks crap about anything Chinese related. Hehe. It is funny. I guess I just need her to let go of her load too. It is hard to see my husband so frustrated too. He is looking better. No more red eyes. We will be okay.


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