Chloe's Medical and Travel Expenses
August 20, 16
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 Children's 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 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 ventilator during the day and naps. Chloe has a tracheostomy, 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 craniofacial 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.
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 alongside her. We love her so much and want to make sure we find the BEST doctors to fix this angel's 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.
Jen posted this yesterday-"Chloe's nerve block she had last month was unsuccessful. The only option we have left is to re- place her feeding tube. This process is going to be very painful and we will be in the hospital for 4 to 5 days. Chloe was very upset by this news. It broke my heart. We will also be going back to Cincinnati to have some work done on her jaw in November. So I would appreciate some prayers I was hoping to avoid surgery but it just doesn't look possible. But we are strong, mostly Chloe, and we will get through this as a family and with the support of our family and friends love you all!♡♡♡♡"
As you all know, when Chloe is hospitalized, Jen makes no wages. The Denver hospitalization and then a trip to Ohio to be very taxing financially and it is time to reach out for your help once again. We have a little time to do some fundraising, so I will begin posting the GoFundMe site again. The replacement of the feeding tube will take place in the near future, followed by the Ohio trip in November. The sooner we can get airline tickets in place, the better. Please give what you can, you all know that a little bit adds up to a lot in our crazy world! Getting Chloe through the summer without any procedures was the goal and thankfully we accomplished that! A lot of fun was had, and now to have two surgeries become necessary is a big blow. We count on you to help us help our beautiful Warrior Princess. Please give and share the word. Thank you ahead of time for your loving generosity!
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!
Carol Lee 35 months ago 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
Jennifer Cooper 45 months ago Chloe' s story is on The Denver Channel 7 new
Carolyn Mair 55 months ago 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!!!♥♥♥
Sheila Powers 66 months ago 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!!