A good friend and shooting buddy is in need of some charity... anything you can give would be a great help!
As many of you know I have a special needs daughter. We were struggling with many behavior problems until we met behaviorist Julie Hickerson and her husband Rob. Thanks to Julie our lives have attained some semblance of normalcy! (Rob even recently included me in a fantastic sporting clays day... that was incredible if you haven't tried it! ). We owe them a lot...
Last month the happy couple had a baby. The baby was born with hyperinsulinism (sort of like diabetes but much worse- the body produces too much insulin and drops the blood sugar level too low), a heart condition, kidney issues, and is autistic. They're having to do feedings, meds, and blood work every 2 hours round the clock. Both have had to give up their jobs. Now they have to fly to a hospital in Phillidelphia for multiple surgeries. Looks like they'll be in a strange city for months... Health insurance and their savings just can't cover everything they need. Everyone around them is helping out but they need more than we can give.
There is now a go-fund-me set up. Anything you can give, even if its $5, would be a big help! Thanks for reading...
https://www.gofundme.com/emmettscure
(mods, prior approval per Austin)
As many of you know I have a special needs daughter. We were struggling with many behavior problems until we met behaviorist Julie Hickerson and her husband Rob. Thanks to Julie our lives have attained some semblance of normalcy! (Rob even recently included me in a fantastic sporting clays day... that was incredible if you haven't tried it! ). We owe them a lot...
Last month the happy couple had a baby. The baby was born with hyperinsulinism (sort of like diabetes but much worse- the body produces too much insulin and drops the blood sugar level too low), a heart condition, kidney issues, and is autistic. They're having to do feedings, meds, and blood work every 2 hours round the clock. Both have had to give up their jobs. Now they have to fly to a hospital in Phillidelphia for multiple surgeries. Looks like they'll be in a strange city for months... Health insurance and their savings just can't cover everything they need. Everyone around them is helping out but they need more than we can give.
There is now a go-fund-me set up. Anything you can give, even if its $5, would be a big help! Thanks for reading...
https://www.gofundme.com/emmettscure
(mods, prior approval per Austin)
Ok. Time for some updates. I apologize for the length of time between updates! We had the PET scan done on Thursday and Emmett was diagnosed with diffuse disease. This means that he cannot be cured of hyperinsulinism through surgery unless we took out a large percentage of his pancreas- close to 98%- and research is showing that if more than 90% of his pancreas is removed he is highly likely to develop type 1 diabetes. So as of right now, since he is showing more mild symptoms, we will attempt to treat medically and with dextrose. Since Thursday we have met with cardiology and determined that since the recovery downtime of his surgery is a maximum of 2 days that we are going to have the surgery here. We had the option of going home and doing the surgery but since the recovery time is so short we decided to stay here so the endocrine team here could run the rest of the fasting trials that Emmett will have to run for meds before we go home. We figure that since we are already at the best hospital for his hyperinsulinism we may as well get all his testing done with this team. Last night he completed a fasting study to determine how much D20 he needs to maintain his blood sugar above 70 if he isn't eating. This is important for us to know so that he can start sleeping through the night without being fed. He went up to 8.5 mls per hour before he maintained a good sugar level. He is scheduled to have surgery on Monday. They are going to move him up to a different floor to monitor his anethesia, do a catheter surgery for his heart, and then keep up on the different floor for a little bit to monitor him post surgery. Because he is so little we have to watch him to ensure that the catheter doesn't cause any disruptions in his veins to his feet. When he meets the time required to watch him, he will be moved back down to his room. Thankfully, we can move to whichever room he is in and hang out with him. Rob and I were accepted into the Ronald McDonald house yesterday which is relieving. It means that we will be able to sleep in a real bed again instead of a couch and a cot. It also gives us a quite a bit more space for our clothes, bathroom supplies, and a fridge for some food so we can save money on food and cook more. Last night the hospital held a cute get together the called Oct-rootbeer-fest. It was a little buffet with rootbeer on tap and some different apple ciders as well. It was fun and I have included pics of an adorable baby Emmett in his pumpkin gear! 
