When Harvey came home from the hospital, at two days old, he began having a very difficult time breastfeeding. After taking him to the pediatrician we were referred to an Ear, Nose and Throat Doctor for a possible tongue tie. We were excited to hear that it was something simple that could be fixed in the doctor's office. Little to say we were shocked when he was admitted to the hospital for an MRI after the ENT Doctor confirmed that it was not a tongue tie. We were told they were admitting him in order to get an MRI quicker and because he was having problems eating and was very young.
The next day after the MRI results were read we were told our son Harvey had a rare condition. He has lymphatic malformations in the floor of his mouth. Basically the channels that make up the lymphatic system didn't form properly and cause little balloon type cysts to form in his mouth. These cysts grow over time, and can get infected anytime he gets sick. Since they are in his mouth it's especially risky because anytime these cysts swell they can block his airway. Right now his appearance isn't affected, but if it continues to grow, without treatment it will also cause facial deformities. Since this condition is pretty rare the doctors here in Kansas City do not deal with it as often as other medical conditions. My husband and I began eagerly researching Harvey's condition and looking into other sources of medical treatment. We found out a family friend has a son with the same condition and they referred us to The Vascular Birthmark Institute of New York. Here they treat children with Lymphatic Malformations on a daily basis. We will need to take Harvey to New York several times for treatment, but the doctors there say he has a very good prognosis. Unfortunately the doctors in New York are considered out of network for our health insurance, so we will have a lot of out of pocket expenses for the procedures.
When we were given this diagnosis the first thing on our mind was how can we fix it, the second is how can we afford it. We are hoping and praying that if everything works out we will be able to get the best care possible for Harvey, and we truly believe that this is with the doctors in New York. We can already tell that Harvey is a fighter and we look forward to seeing him grow up to be a healthy, strong, little man. If you are interested in updates on Harvey's journey you can go to http://www.caringbridge.org/search?q=Harvey+Neher. Thank you!
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