This is Eleanor. She's 4 and loves babies, princesses, dancing, music and pretty much anything pink and glittery. She is probably the sweetest kid on the planet. You cannot be in her presence without receiving a hug and HAVING to holding her. Even the nurse that gives her vaccinations gets hugs! She's rarely upset and that's generally when she's sick, tired or fighting with her younger brother. I had a normal healthy pregnancy with her up until my water spontaneously broke at 31 weeks. She was born prematurely at 32w and was 2lbs 8.5oz and only 14.5 inches. She was also born in what were told was called a colloidal membrane. Her outer skin was very tight and she could barely move. We were told that she had a rare skin disorder but they weren't sure exactly which and wouldn't know until genetic testing was done. However, we were told that it might be a "nonissue" depending on what the skin underneath the membrane looked like. It came off and her skin appeared pretty normal. We were pretty relieved that the rest of her 8 week NICU stay was pretty uneventful. The biggest obstacle we had was that she had some feeding issues. She couldn't nurse and she had a lot of problems with most bottles. We took her home at just over 5lbs. For the most part everything seemed fine. A dermatologist told us to avoid daily baths and apply lotion a few times a day. Feeding problems persisted, though. She seemed like she was getting enough, but she wasn't gaining very well. She was diagnosed failure to thrive and had some testing done to make sure she was getting what she should nutritionally. She was but we had to make her breast-milk and formula extra concentrated because she just wasn't getting enough calories. She slowly gained and grew on her own special curve way below "normal." She did things a bit behind babies born the same time and we were told it was pretty normal since she was premature. However, at 18 months she could barely stand. She definitely couldn't walk and would only "w sit." She wouldn't respond to most sounds unless they were loud. She also pulled everything really close to her face. I kept telling her doctor about my concerns and I was told that she thought it was because of her size. Even when she was 2, she was just a bit bigger than the average 9 month old. Finally, when she 3, she was referred to a pediatric specialist. He spent over 2 hours with me going over all of the problems she was having. Now that she's finally getting the attention she needs, we're fighting insurance. I spent 2 months arguing with her insurance to cover her hearing aids. I had to fight for them to cover her Pediasure (4 a day) and the cost of her seeing a nutritionist. I had to fight for them to cover her occupational therapy, speech therapy and physical therapy. I had to fight to get her leg braces and walker. We're currently fighting for them to cover extensive genetic testing to get her a diagnosis that links all or most of the other diagnosis-es. What we have for diagnosis-es so far are: microcephaly, moderately severe bilateral hearing loss, ataxia, ectodermal dysplasia, severe myopia/nearsightedness and a heart murmur. We also just found out that she has some sort of bone disorder and have to travel 3 hours to see a pediatric orthopedist. If insurance companies already make families with extra needs appeal and fight, it is only going to get worse. We should want to care for and make sure our children have everything they need. No one should ever worry that they're not going to have theirs or their childrens' medical needs met.
