Chloe's Medical and Travel Expenses
Chloe's 25th Surgery- July 10, 2015- Please see additional Updates!
July 13th, 2014 Heading to Cincinnati for Surgery # 20!
It's time to update this page a bit! We've been delighted to have the support of so many to aid in moving Chloe through so many, many surgeries. It has been 40 months (almost 3 1/2 years!) since we began this campaign, much has happened in that time for sure! Every penny donated has been put toward Chloe's medical and travel expenses incurred during trips back and forth to Cincinnati, OH. Some trips have been by plane, others by car, hotels, gas, food. Several trips have kept me from working up to six weeks at a time, this gets pretty tough at times being a single parent. I wouldn't want it any other way: God entrusted me with Chloe and her siblings, I intend to be the best mom ever! I do still need your help, hopefully this trip will be the last for quite a while! Please give whatever you can, it all adds up! It just disappears so fast! I appreciate each and every one of you so much! Chloe is changing before our very eyes, when you help it becomes reality.
Chloe is now 5 years old and has undergone several major recontruction surgeries on her face. After the successful bone implants from bone taken from her scapula (amazing, cutting edge procedure!) we waited to see the growth, then began the procedures called jaw distractions to pull the bone forward in order to make a functioning jaw. The first one was completed last September, it was grueling and took us away from home for 6 weeks. BUT, since then, it is obvious that it is working, as Chloe is able to swallow tiny bits of liquid (ice that is chewed and melted or tiny tastes of yogurt or ice cream!). Swallowing is AWESOME! She is making so many more sounds, which means that air is making its way past the trach. This is fabulous! She has had some surgery on her eye and had scar tissue removed from her neck from the implant surgery. That was not a difficult surgery, but required a trip to Ohio and when she was there she contracted RSV and got VERY ill. It was extremely scary and also much more expensive than expected. Being the Warrior Princess that she is, she bounced back and even got in a bit of real preschool at the end of the school year. Of course, she has a nurse there at all times, but she adored it and made lots of friends!
Now we are off again to get another jaw distraction. The bone will be pulled farther out and it is the hope that more airway opens and that more space is created so that at some point Chloe can breathe without the trach and speak! She is such a smart little princess, the kindest, funniest, most compassionate and loving child you could imagine. She doesn't let these surgeries, or life in general phase her. She is an angel here on earth, she just has to be! Thank you all for helping with any amount that you can afford. EVERY dollar makes a difference!
Chloe had her first jaw implant surgery in September. What a trying time it was! The bone taken from her scapula and implanted into her jaw looks to have taken successfully. The expected 8 hour surgery turned into 14 grueling hours and stabilizing Chloe took days! She continues to earn her Warrior Princess status, and fought it through to the homecoming day. Expenses were high, as the Ronald McDonald House didn't have a room for a while and the stay was longer than expected. She will return in Feb. or March 2013 to have the other side of her face/jaw reconstructed. Your donations were a God send and now we need to start the process of fundraising for the next trip. Please give a little or a lot. Chloe needs us ALL to help her continued movement to a more normal life! Thanks to EVERYONE who helped make this first step in this part of the journey possible!
We are raising money for our sweet angel Chloe's future surgeries and medical costs. Chloe was born with several life threatening birth defects. This precious little girl spent her first 7 months fighting for her life at Childrens Hospital in Denver. She was born with 2 holes in her heart, pulmonary hypertension, no ears, no jaw, missing bone in multiple areas of her face, spinal cord complications, and the most sweetest smile ever. Chloe was ventilator dependent up until this last October. We will celebrate her 2nd birthday in April. She is a miracle conquering over 8 surgeries so far, including repairing 2 holes in her heart, and the untethering of her spinal cord (making it possible for her to walk), She has managed to work her way off of the ventalator during the day and naps. Chloe is trached, so she breathes through a hole in her throat, she is also fed through a tube in her stomach. She will have to live this way until her jaw is reconstructed. This could be as long as 12 years old. The next step is to find the BEST cranniofacial and bone reconstructive doctor there is! In doing so, we are asking for any donations that would help us make this possible. Chloe will need to have her jaw built by using her ribs. She will need to have the bone built up around her eye socket. CHloe also needs to have ears made and screwed onto her skull. She will need to have the skin tags on the sides of her face removed and then plastic surgery to fill in the holes. We are asking for help to raise money for all of these complex surgeries. All out of state appointments, tests, and procedures will not be covered under insurance. Once we find the doctor right for Chloe, we will most likely need to move to where they are.
From the day Chloe was born, we have faced many challenges as a family. Chloe has a 7 year old sister, and a 5 year old brother that have been through everything right along with Chloe. We love her so much, and want to make sure we find the BEST doctors to fix this angels face, and help give her the normal life she deserves.
Any amount you can give to help would be greatly appreciated. Thank you from the bottom of our hearts. Jennifer, Sierra, Kadin, and most of all, Chloe. God Bless.
Fresh off the press! This is a bit of a long update, but the basics are that Chloe will be returning to Ohio tomorrow for some much needed adjustments by Dr, Gordon. They will return home right away, then go back for the scheduled removal of the device on August 19th. Please help us to get ahead a little but. Every single dollar helps. Lost wages, unexpected expenses and who knows what else keep us scrambling to keep up. Thank you SO much!
July 22, 2015 Warrior Princess Chloe doesn't just seem to be a good enough title anymore. Neither does Warrior Mama Bear, and I don't have a clue as to what to call Sierra, Kadin and myself. I do know that as a family, we do ridiculously wild, stressful, TEAM moves that I don't know too many others could pull off. That's just the way it is, for real.
This coming home to heal for Chloe rather that staying in Ohio for five or six weeks has its positives and negatives. Right now, it looks like a not positive point in time. Since the distractor is just pulling out the bottom jaw this time, we have run into a problem of positioning, which would be a basic adjustment for Dr. Gordon if Chloe were in Ohio. She has finally gotten two permanent teeth in the the front, and it is important to try to keep them there. In the past, quite a few baby teeth have been sacrificed, but if these two go, they are gone for good. Right now, the bottom teeth have begun to catch and pull forward those pretty little teeth. Today Jennie talked to Dr. Gordon bout how to proceed. We had three choices. Fly back there and let him do the work, decide to let a doctor at Children's here do it, or attempt it ourselves. After a phone lesson as to how to basically deconstruct the distractor so that it would allow the jaw to drop lower, therefore bypassing the upper teeth, we decided that we would attempt it. It's pretty wild...the tools needed for this life changing contraption can be found in your basic home tool box, except the specially designed little socket style wrench that is used to turn the wires twice daily.
So, we looked up the needle nose pliers, got out the alcohol, situated Chloe and all of us in the brightly lit bathroom, and got to work. Talk about anxiety! Chloe was scared, we were determined and all of us did our part to take that distractor apart! I had to hold the wires that you can see closed with the pliers, while Jen undid 80 turns each on both screws that you see. Sierra was the official counter of turns and Chloe cheerleader. The screws were eventually loose, leaving the two little bars that you see unattached. That was the scariest moment of all. Jennie had to slide the pieces that hold the screws completely off of each side and turn them so they faced the opposite direction. It was a critical moment for all to go well. Kadin and I were both holding a little bar in place and Jen was working diligently to finish mechanical changes. if you'd been there, you would have heard these statements. "Okay, Chloe, you are doing GREAT!"..."Nobody move a muscle!"..."Kadin, do NOT let go of that bar." From Kadin, "I'm getting tired." From Jennie, "You're fine, Dr. Gordon stands and does this kind of thing for 14 hours!"... and much more, I'm sure! We finally finished, we did it all, and did all we could do...and it didn't change it enough! What a disapppintment, it just didn't change it quite enough. All of us were brave and tenacious, Chloe was STELLAR in her trusting us through her own anxiety and pain, and we are proud that we accomplished the task as Dr. Gordon laid it out, but it did not solve the problem.
So, tomorrow is a new day and a new plan will emerge. Lots of calls will be made to a lot of places to try to figure out the next best move. Dr. Gordon will see her Friday or Saturday in Ohio, but tickets are scarce and expensive. We'll see. It's very hard for us to trust a different doctor here with Dr. Gordon's plan and distractor. No decisions can made until more is determined tomorrow. Please pray, send love and positive energy to have the best path revealed. I do hope I have explained this in a way you can understand, it certainly isn't easy. There has been a great amount of change in the jaw in only 13 days. It has to be brought out even farther because it does tend to fall back some, but the airway is already larger! I am having difficulty posting a picture, but progress is happening! Hallelujah!
From Grandma-Sending apologies for no update in a while! We had allowed Chloe to just skate through Kindergarten having some fun, making delightful friends and learning a LOT. We had hoped to wait until October to have the next jaw distraction done, but situations with her health, dictated in just the past two weeks, that she head back to Cincinnati ASAP in order to get some important work done. On July 10th, 2015, she headed to Children's Cincinnati for her 24th surgery; this did not allow having a complete summer of fun without any surgery as we envisioned. It happens, but certainly was disappointing!
This last surgery was not nearly as uncomplicated as we'd hoped. Instead of just the jaw distraction, Chloe had to have bone removed that had grown in an unexpected area and scar tissue removed from some muscle in her cheek that was not allowing her to close her mouth at all. It was pretty involved, but she bounced back as Chloe does best and they have come home to heal, then will need to return in five weeks to have the distractor removed. We had not done any fundraising, believing that there was just enough money to get through this trip...until the unexpected happened, all was on track! The morning they left to return home, their plane was grounded because the tower was struck by lightening. As miserable as Chloe was, as exhausted as Mama Bear was, they spent three hours on the plane on the tarmac waiting to take off. Eventually, they turned the plane around because of Chloe's needs and returned to the terminal. At that point, it was discovered that there was no connecting flight if they would have been sent to Minneapolis, then to Denver. Chloe did not have food for the night, and an emergency was in process. The airline was able to find a flight for the next morning, but because of the All Star baseball game in Cincinnati, there was not a hotel room or car rental to be found. Children's Hospital, after a very long time, found them a room. It must have been the only room around for miles and miles and it was very costly for Jen to deal with all of this mess. Thanks to a beautiful friend, money showed up here which helped tremendously. Jennie and Chloe got back to Colorado this morning, all in one piece and ready to begin healing. What this has shown us is that we just have to get ahead in the fundraising a bit now. They will be returning to Ohio before long, and who knows what awaits Chloe from minute to minute! We need to have some extra money in place to pay for unseen events. Please do give a little if you see it in your heart to do so. We never ask unless it is important. We have made some money over the last 4 1/2 years, but not really a lot when you consider the cost of travel, lost wages, medical needs and emergencies. Personally, I would feel SO much better when they leave in five weeks to know that there is just a little bit of a buffer. Chloe is a lifelong investment, she GIVES, INSPIRES and LOVES everyone. She is a WARRIOR, her family is made up of WARRIORS, but we do come to moments where we just have to ask for help. GOD BLESS YOU for anything that you can do to help. PLEASE DO SHARE WITH FRIENDS! May you be blessed all of the days of your lives. Thank you all so much!
We never ask for help unless it is imperative. Jennie is a single parent who does not receive public assistance and who only occasionally receives child support; she pulls off this circus act like a CHAMPION . Unfortunately, when times get hard and life deals these unexpected blows, we need to count on the generosity of friends. Please give a few dollars if you can, we appreciate everything that you have done over the past 4 1/2 years of this account!!! This is a real setback, knowing that another surgery is in the works for the summer. Please just help where you can and share this site freely with your friends and relatives. Chloe is a lifelong project, isn't it awesome that she gives such beautiful gifts in return by just being her?
Sending blessings your way!
I am so grateful to be able to be able to have the opportunity to give periodically to Miss Chloe. I don't think we think about this being an ongoing struggle for Chloe and her family. I hope and pray that all of you who see this to search your hearts and give Chloe a financial gift. No amount is too small. And every $5.oo dollars adds up quickly. Is it too hard for us to try to do this at least every 3-6 months??? Carol Lee Widell
Chloe' s story is on The Denver Channel 7 news.
All of you are such an inspiration! Thank you for reaching out to give others the honor of sharing our love and prayers for Chloe!!!♥♥♥
She is such an amazing little girl!! And what a strong fighter she is !!! God has some special plans for this little girl!!! I will continue to pray for her!!! God Bless you all!!!