Roman's Journey to Happiness & Health
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Although we still don’t have all of the answers, Roman’s stay at Boys Town National Research Hospital helped pinpoint several issues that are contributing to the severe pain he has been experiencing.
One of the main issues is severe oral disfunction. When he was born he had a tongue and lip tie, along with a high palate. We thought these things were the extent of it, however, we have now learned that the muscles in his jaw and mouth are not working as they should. This means that despite Roman being incredibly hungry, he can only eat 1oz at a time. The movement of him eating caused him significant pain, discomfort, and abnormal amounts of gas in his abdomen. This is why he had to have the feeding tube placed. We will continue to offer him a bottle but whatever he doesn’t eat of his 4-5oz bottle has to be put into his feeding bag and be fed through his nasogastric feeding tube. His doctors seems confident that he will be able to eventually stop the feeding tube, but it’s going to require extensive occupational therapy/feeding therapy and continuous monitoring.
Along with being diagnosed with multiple feeding and oral issues, he also has severe silent reflux and MSPI + corn intolerance (Allergy to dairy, soy and slightly to corn). This is a bad thing not only because dairy and soy are in everything, but because every single infant formula that is safe to use for Roman and is nutritionally complete contains corn derivatives. This means that Roman has to be on a formula that he still reacts to and causes rashes/eczema, because it is the “best” option out of our given choices. He seems happiest/reacts the least to Neocate, which costs roughly $700 a month.
We are facing extensive expenses for Romans past and future care. I cannot return to work with him being on a feeding tube and with the complex care he now requires. We will be paying all of the normal baby expenses, plus home health, Amino-Acid based formula, countless follow up visits, medical procedures and testing, and 3-4 times a week we will have to drive an hour and 10 minutes to Omaha for Occupational Therapy/Feeding Therapy. It is not uncommon for babies to rip their feeding tube out (which Roman has already done once since having it put in) and then our only option if we can’t reinsert it ourselves is to take him to the Emergency Room every time that happens. Trevors insurance is not great and will be getting even worse at the beginning of the year (His company is being bought out so a lot of insurance changes on top of high deductible starting over again). We just miss the cutoff for WIC and obviously don’t qualify for any other kind of assistance. They anticipate he will have for issues as he begins to eat solids in a few months, which may cause a whole other list of problems with swallowing and allergens. I am so embarrassed to admit that we need help or asking for help, but I’m not sure what else to do… If it was for anything other that my childs health I wouldn’t even consider asking family and friends for help. We learned how to get by with one income but with the extensive continuous expenses we are going to have, I’m really not sure how we are going to do this. We are tossing around the idea of selling our house, too. We just want to be able to afford the care that Roman needs and pay for past and furtive medical expenses without trying to sell a kidney. (God forbid he has a severe reaction to the Neocate we will be going to a different Children’s Hospital out of state for further testing. Right now he just has a mild rash, so we are hoping he passes the Neocate although we won’t know for sure for another week or two.) Fingers crossed.
We are stressed, we are overwhelmed, we are beyond exhausted. We just want to be able to give Roman the best care possible. We are happy to finally have some answers, but it sounds like we are just seeing the tip of the iceberg and are in for a long haul. We just want our baby happy and healthy. If you feel compelled to give, that is great. If not, that is okay too. Please keep our sweet Roman in your prayers. Thank you.
One of the main issues is severe oral disfunction. When he was born he had a tongue and lip tie, along with a high palate. We thought these things were the extent of it, however, we have now learned that the muscles in his jaw and mouth are not working as they should. This means that despite Roman being incredibly hungry, he can only eat 1oz at a time. The movement of him eating caused him significant pain, discomfort, and abnormal amounts of gas in his abdomen. This is why he had to have the feeding tube placed. We will continue to offer him a bottle but whatever he doesn’t eat of his 4-5oz bottle has to be put into his feeding bag and be fed through his nasogastric feeding tube. His doctors seems confident that he will be able to eventually stop the feeding tube, but it’s going to require extensive occupational therapy/feeding therapy and continuous monitoring.
Along with being diagnosed with multiple feeding and oral issues, he also has severe silent reflux and MSPI + corn intolerance (Allergy to dairy, soy and slightly to corn). This is a bad thing not only because dairy and soy are in everything, but because every single infant formula that is safe to use for Roman and is nutritionally complete contains corn derivatives. This means that Roman has to be on a formula that he still reacts to and causes rashes/eczema, because it is the “best” option out of our given choices. He seems happiest/reacts the least to Neocate, which costs roughly $700 a month.
We are facing extensive expenses for Romans past and future care. I cannot return to work with him being on a feeding tube and with the complex care he now requires. We will be paying all of the normal baby expenses, plus home health, Amino-Acid based formula, countless follow up visits, medical procedures and testing, and 3-4 times a week we will have to drive an hour and 10 minutes to Omaha for Occupational Therapy/Feeding Therapy. It is not uncommon for babies to rip their feeding tube out (which Roman has already done once since having it put in) and then our only option if we can’t reinsert it ourselves is to take him to the Emergency Room every time that happens. Trevors insurance is not great and will be getting even worse at the beginning of the year (His company is being bought out so a lot of insurance changes on top of high deductible starting over again). We just miss the cutoff for WIC and obviously don’t qualify for any other kind of assistance. They anticipate he will have for issues as he begins to eat solids in a few months, which may cause a whole other list of problems with swallowing and allergens. I am so embarrassed to admit that we need help or asking for help, but I’m not sure what else to do… If it was for anything other that my childs health I wouldn’t even consider asking family and friends for help. We learned how to get by with one income but with the extensive continuous expenses we are going to have, I’m really not sure how we are going to do this. We are tossing around the idea of selling our house, too. We just want to be able to afford the care that Roman needs and pay for past and furtive medical expenses without trying to sell a kidney. (God forbid he has a severe reaction to the Neocate we will be going to a different Children’s Hospital out of state for further testing. Right now he just has a mild rash, so we are hoping he passes the Neocate although we won’t know for sure for another week or two.) Fingers crossed.
We are stressed, we are overwhelmed, we are beyond exhausted. We just want to be able to give Roman the best care possible. We are happy to finally have some answers, but it sounds like we are just seeing the tip of the iceberg and are in for a long haul. We just want our baby happy and healthy. If you feel compelled to give, that is great. If not, that is okay too. Please keep our sweet Roman in your prayers. Thank you.
Organizer
Madelyne Dunn
Organizer
Raymond, NE
