Hunter Thomas Reeve was born on March 12, 2009 at 2:38 in the morning at St. Thomas Elgin General Hospital. Hunter weighed 6 pounds and was four weeks early but appeared to be a healthy baby boy.Although Hunter was eating well he was steadily losing weight. Three days after his birth Hunter was released from the hospital and made the trip home. Due to the weight loss Hunter was brought back to the St. Thomas hospital and after a series of tests it was found that Hunter was severely dehydrated. An IV line was started in the top of Hunter’s head because he was too dehydrated for the nurses to find veins anywhere else in his body.Hunter was rushed by ambulance to the Children’s Hospital in London, where he stayed on the IV while doctors and nurses diligently tried to determine what was causing the dehydration. By this time Hunter was down to almost four pounds and struggling to stay alive. Hunter fought hard (even managing to rip out the lines that the nurses kept putting in) and was stabilized thanks to the staff in the Pediatric Critical Care Unit. Without their care Hunter would not have lived through the night.After exhausting all of the non invasive tests, doctors from many specialty units were brought in to try and find out what was causing Hunter’s illness. Dr. Bax of the Pediatric Gastroenterology team was brought in, and in Hunter’s first week of life, he had his first surgery. A sample of Hunter’s small intestine was obtained through a biopsy and sent off for analysis. This is a rare procedure to have done on a baby and is not part of routine testing. Miraculously enough, this procedure determined the cause of Hunter’s decline: his small intestine was not absorbing any nutrients from his food. In fact, Hunter was outputting more than he was taking in.Hunter was diagnosed with an extremely rare and potentially life threatening disease of his intestines called Microvillus Inclusion Disease (MID). This disease prevents Hunter from absorbing any nutrients through his small intestine making him completely dependent on Total Parenteral Nutrition (TPN). TPN is very hard on Hunter’s liver but the only other option is a small intestine transplant.At first it seemed like a very grim prognosis as the complications with transplant are many. But there is hope: an experimental treatment called Omegaven. Omegaven couples Omega 3 fatty acids with TPN which greatly reduces the risk of liver damage and may assist in its repair. Unfortunately, Omegaven is not currently covered by the Ontario Health Insurance Plan (OHIP) or independent insurance companies.This disease only affects one in five million people. Hunter is the twelfth known person suffering from this disorder in North America right now. Currently there is no cure for Microvillus Inclusion Disease. Hunter needs constant medical care and the cost can be overwhelming to a family. There is very little coverage for in home support for families battling MID; as this disease is rare it is not typically covered by OHIP. Although Hunter’s Omegaven is currently being paid for it is unknown how long it will remain covered and what challenges this little boy will face in the future. Because MID is such a rare disease more research is needed to find other treatment options that are not as detrimental to the health of those affected. Hopefully someday this research will lead to a cure. Hunter needs your help to stay home. With your support we hope to make this dream a reality. Please help – because every baby deserves to grow up.

Thursday, December 24, 2009

Merry Christmas

Well Christmas is upon us and I am feeling very lucky and grateful to have Hunter at home with us! I can't remember the last time I was this excited about Christmas....I guess having the best gift in the world makes all the difference.....

Hunter's weight is up to 16lbs 12oz and his 4th tooth came in...another one on top...Hunter is crawling faster and very determined to walk! The crawling and walking is very interesting with his line....we are trying to figure out how best to follow him around with it without tiring us out!!! Chris thinks we should get a big remote control car, strap the bag to it and just have the car follow him....probably good in theory but I'm not too sure how that would work out...I can see Hunter turning and chasing the car!!!! hahahahaah...what a sight it would be!

We started Hunter on a new medication that goes directly into his central line. Its supposed to help with the vomiting....its only been one day so we are not getting our hopes up but he only threw up once over night last night and didn't wake up until 7:30am....what a change from the last 3 months of being up 3-5 times a night with him and then up for the day at 6am.....we almost feel rested!!!

I hope everyone has a Merry Christmas and Happy Holiday....may good fortune shine down on everyone as it has us....we feel we are the luckiest parents out there!
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Tuesday, December 1, 2009

Knock on Wood

We've been knocking on wood alot these days....it seems everytime we say how great Hunter is doing something not so good happens (knock on wood). The longest Hunter has gone without an infection is just over the 2 month mark....that is about where we are right now from his last hospital stay.

He is hilarious right now....one of his top teeth came in and he is talking constantly...mostly likes to say "dadadaddadada". He is such a happy little guy. Hunter likes to walk along the couch but often forgets he can't really walk yet and turns himself to walk without supporting himself....and down he goes....with us to catch him of course!

Medically he is doing well...still vomiting sometimes but it seems to be less than before...some days better than others.......Hunter no longer has to go to a weekly blood work appointment...we are going every other week so this is the first week we haven't gone....I'm curious to see what his weight will be next week because I swear his cheeks got bigger over night!!

We continue to try and give oral feeds....it was funny because Chris asked me why I buy the crappy vegetables and not the fruit for Hunter...I told him that you are supposed to give them the veggies first otherwise they won't eat them because the fruit tastes better to them...Chris replied..."it's not like he's getting anything nutritionally from it, it's just for pleasure so buy him the good stuff!" hahahahaha....I guess he's right.....so we started giving Hunter the fruits...started with peaches...he loved it....then some banana...he loved it....will try pears today!

Like I said...all seems to be going well....so everyone reading...KNOCK ON WOOD!!!!
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