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CHLOE TEPLEY

$4,396 of $4,600 goal

Raised by 72 people in 2 months
Created January 17, 2019
I've started this page for a student I taught in 4th grade, and also her mom who is my co-worker.  They both have taught me so much in the time I've know them!  Chloe (age 12) has a very rare disorder called Angelman Syndrome.  She is a nonverbal, has a developmental delay, and has a very high pain tolerance. 

Last year in January, Chloe was diagnosed with influenza A.  From this diagnosis, her stomach and intestinal system shut down. They were able to get her stomach working and the nutrition in that she needed. Since then, she has had many setbacks because of this. Her doctors that know her best are all over 2 hours away from their home and many trips back and forth have needed to be made since then.  Chloe has now had another setback that truly started before Christmas and hasn’t really gotten better, but instead worse.  She is currently in the Children’s hospital as they try to figure out how to get nutrition in as her body is refusing everything and struggling so hard.  Chloe has a seizure disorder that is well controlled with diet and medications, so figuring out her nutritional needs is critical now more than ever!

This has been a huge setback and tremendous stress on their family! Their other two other children are moved from friends to family as they try to navigate this path right now. The family is divided and driving back and forth, staying away from home days at a time,  and buying meals and gas.  It has been draining for them.  They are on such a tight budget right now, even things that seem so simple have been a major financial burden.  Prayers and positive thoughts are needed as well as they move forward and try to come up with a plan. 36312742_1547781817784104_r.jpeg
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We are 2 weeks out from surgery and almost a week since we have gotten home. Chloe spends a lot of time sleeping, the smallest tasks wear her right out. We are struggling to find a balance of how to manage feeding and not get her too full of fluid. She is on continual feeds based on nutrients that she needs and so far her body is having a hard time with the volume. Her systems are still slow and not really moving things. We are also trying to figure out a good system for medications as we added a stimulant for the stomach and are now giving meds 5 times a day. We will get a routine down good soon I hope. Chloe has been home all week this week and we have decided that we will start her back to school starting with 2 hours a day and seeing how that goes. Healing is happening. It is slow, but that is okay. We should know within the next few weeks if this will be the fix all solution or if we need to do some additional surgeries that are for now on the back burner. Prayers are being answered and she is getting stronger each day! At our checkup today they said Chloe could take a bath!! She has been waiting so long for that!
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On Wednesday we started letting Chloe take clear liquids by mouth and she drank 8oz that first day and tolerated it well. We then decided that she could begin to receive clear liquids by mouth along with her tube feeds starting at a low rate and working up yesterday. She again tolerated this well with just a little discomfort. So today we worked up to full rate of feeds through her g-tube and she is still handling things really well. If this continues they will discontinue her TPN and lipids through her picc line tonight and it will be all g-tube feedings. She is doing great with all of this. We are told that the body could take some time still for healing because of the extent of the operation. Bowels May take a while longer to get back to “normal”, she is on a restrictive diet for another 6 weeks and she is still very weak and gets tired easily. To be able to tolerate tube feedings is huge though, even if it is at a smaller rate and volume!!! This kiddo has not had good nutrition and tolerating feeds since well before Christmas. So she is due for some change in how she tolerates nutrition. It is crazy how we can see all the bones in her body but we know that we are on the right track now. She is so tough and an inspiration to me. She handles everything that is thrown at her with such grace and strength! ❤️
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We have been hunkering down and from hearing it everywhere, inside is where we would rather be instead of in the cold. Chloe is now on day 5 post op and day 16 of this hospital stay and still on gut rest. We started her on a medication called erythromycin which will help to hopefully stimulate her stomach. When the doctors rounded today they gave us a plan. Stay on gut rest today and tomorrow we will start with clear liquids and then work up to very slow feeding.... as of now she looks and feels great but we are reminded that she is fully dependent on her picc line and her TPN and lipids for nutrition. While this is good for now, it is not a long term solution. So as we add feeding, we slowly taper the nutrition through the picc and this sounds like it could be a process and to be completely honest, we are totally okay with the slow method as we have been on a continual roller coaster since last February. We would rather do it right than do it quickly and then end up right back here. Chloe’s body has not gotten good nutrition since before Christmas. She has not been able to eat food since them and so her body has essentially forgotten how to process things. If it tells you anything, our goal for Chloe for feeding is 340ml per hour and we can only start at 5ml per hour and go slowly up from there... that is where the slow comes into place. With introducing nutrition back into the gut when it has not been functional for so long and now having undergone a major operation, we run the risk of the body going back into the refusal process that we have been stuck in for the past few months. Her bowels are active but very quiet and she doesn’t have the sensation of hunger yet. She remains very sleepy and not as strong as she wasn’t pre hospital but her spunkiness is coming back in full swing. She has been coloring, playing with playdoh and doing puzzles and today she walked the loop 3 times looking for the cute boy who was out and about with the art cart. Looks like it will be a bit until we are able to be home but she is in good hands! Thank you everyone for your continued support! ❤️
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We are 3 days post op and it has been kind of uneventful. We have done a little liquid and ice chips by mouth and were Met with some wrenching and a little bit of vomit. Surgeons rounded today and said we need to back up and give the gut some more time to rest. So today we have stopped all things by mouth and will start erythromycin which will help to start getting the stomach to contract and then we will revisit giving things by mouth in a day or two. They told us it could be a long road and really Chloe is our guide. We will not push her beyond what she is telling us. She has been up and about so that is great! The rest of the family headed back home and she immediately fell asleep, I bet before they were in the elevator! she didn’t want to miss anything while they were her I guess.
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$4,396 of $4,600 goal

Raised by 72 people in 2 months
Created January 17, 2019
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