Help Kadence Open Her Jaw!

$15,300 of $15.3k goal

Raised by 29 people in 42 months
April Graham  Lumsden, SK
Hi there...thanks for taking the time to read our story! Without going into the past here, (there will be a website up shortly that tells the WHOLE story), we are making a request, publicly, for funds to help us continue to help our *5 yr old daughter. Kadence is now 8 and we are still looking for someone who can help her.

Her greatest challenge at the moment, is the fact that her jaw does not open more than 1 finger width...considered to be in medical terms, severe. The risks are:

(1) lack of dental care as we are unable to brush inside or on top of her teeth. We recently got in to see a Pediatric Dental Specialist, and there are cavities on the tops of every molar. Due to the lack of ability to open, under general anesthetics, all her molars are going to be extracted. This will be done in a hospital some distance from where we live, necessitating not only several drives for pre-op and anesthetists planning but hotel, meals and a $3000 retainer. There is a waitlist, but as she is considered Special Needs, she will be at the top, so it may be in as little as 3 months.

UPDATE: we have found a Pediatric Dentist in Alberta who will fix 2 large & 2 small cavities, clean, xray, fluoridate and seal her molars!! Cost is $2000, plus our travel and accommodations.
The work was completed in August 2013, with all 8 molars being capped so we don't have to worry about abscesses while searching for help to get her jaw to open! Thank you to the amazing team at the Stollery Children's Hospital in Edmonton, and Gateway Pediatric are the best!

UPDATE 2016: The dentist is unable to clean her teeth or reach the new molars in the back that have come in.  We are dealing with bleeding gums as we cannot thoroughly clean her teeth.

(2) the choking hazard...everyday is a workout for our adrenal glands. Every meal and snack has to be carefully planned with regards to texture, size, composition and seating arrangements. We have used the Heimlich too many times to count, called EMS to our home, restaurants, even on the side of the road when she was choking on her own secretions as an infant (thankfully this episode resulted in us receiving the loan of a portable battery operated suction device!)

(3) adult teeth eruption...once her baby teeth starting coming out, and the larger adults one grow in, her jaw will be locked shut. Limited nutrition, increased choking (stomach flu, secretions, liquids) hazard, and possible pain from the pressure.

UPDATE 2016: Her adult front teeth have come in and we have an opening of 7mm

What have we done? Well, since about 18 months, when her teeth started coming in, we noticed then that the opening was not of normal size....She has been seen by many, many specialists from the moment of birth one noticed this. We started asking questions from everyone involved in her care, no one thought anything of it really...We were given some suggestions to try such as:
-Give her cold things orally to stimulate the muscles
-Try a vibrating spoon...which we bought ourselves and faithfully used
-Gently massage outside and inside to stimulate the nerves
-Try to get her to open wide, then stretch
We then took her to a TMJ RMT specialist, who said it was developmental. We took her to a MyoFacial Release RMT, with no success. We tried Bowen Therapy with no joy. All these attempts we paid for, with no coverage.
We have seen a Plastic Surgeon, who's only suggestion was to "try" to fix the jaw by severing the tendons, starting with 2, then if it didn't fall, cutting the other 2.
We met with a Myofacial Surgeon, who in his over 30 years, was stumped as to what to do or how to proceed. This is just a short list...a summary... to help you see that we are working hard to find answers and help.

We are at a point where we have not only used up all our savings & exhausted all credit, but we are now having to close down our business as we are unable to run it effectively while searching for help. We are left with a very large business debt to pay off, living on one income, while one of us is going to town advocating for our child. We need to find someone, somewhere in this world that has seen this before...or who is willing to take a very close look, with forward thinking and the ability to analyze to make the most noninvasive plan to help.

UPDATE 2016: We closed our business and added the debt to our mortgage. We were unable to sell our remaining stock after 18 months of trying, so we donated it all to a charity that helps bring music to those who cannot afford it.

We know it is worth it, and are not complaining at all..we just realize that we can not carry on financially and are humbly requesting help.
Thank you so much for considering us for your donations!
God Bless,
Gary & April
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Update 30
2 months ago

Kadence is now 8 years old. We have been searching for help for 6 1/2 years.
The inevitable is now her reality...the back molars, which are inaccessible for brushing, viewing or performing dental work on, are decaying. A surgery has to be done to remove these 4 permanent teeth.
We have found a Maxillofacial Surgeon in Edmonton, AB who is willing to take a look.
This Dr has been incredible at taking Kadence's condition seriously. His office staff have taken the time to contact each Dr who has seen her, in several provinces, to get their notes, as well they contacted each hospital or dentist where any imaging was taken, and ordered copies to view! We have been working on gathering the information for 6 months, and now we have a consultation in person this Monday, Aug 15th.
Thank you everyone for your continued prayers and family support. We realize that we cannot give up, and having people there, makes our journey that much easier to walk through.

We are working with Kadence's pediatrician to lobby the Saskatchewan government to cover the costs involved as we cannot find the help we need in our province. So far it has not worked, but we will keep trying!
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Update 29
8 months ago

Feb 2016:
Kadence's front adult teeth have come in, all but one on the left beside her front tooth. This is the only access we have to get a toothbrush in. There is not much room to move the brush, and we are unable to reach the new molars at the back. Her gums are bleeding as we cannot clean her teeth properly. She is getting sick monthly and we don't know where to turn.
If anyone knows where we can get help for a jaw on an 8 year old that has not been able to open past 8mm since birth, we would appreciate you forwarding this information. I know there is a medical professional somewhere out there who has seen this and knows how to help!
Thank you for sharing...
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Update 28
30 months ago

We have been back to Calgary and home again this week...Got the appliance fitted and trained on how to use it. Kadence has accepted it incredibly easily, and reminds us "it's time for the appliance!". Getting her to use it and be comfortable is 50% of the battle...The rest is patience and time. We started having it in place for 1 min, now, since Monday, we are up to 5 mins per session. Once we can get her up to 30 mins per session, we can increase the tension and expect some opening results. Her jaw opens 8mm (the average person is 40-45mm)...the Dr. has not given a goal to reach, so we are setting our own, which is 40mm by June 2015...without a vision, you will perish...Once we get an opening of 15mm, we will return to Calgary to have an upper jaw impression and plate put on the appliance, which not only makes it more comfortable to wear, but also helps to keep it in place. We are so thankful to have finally be working towards her jaw opening, it has relieved a tremendous amount of pressure. We will keep updates coming on her progress, and perhaps switch over to a different platform....will stay in touch! Thanks everyone for joining us on this trip of a lifetime!
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Update 27
30 months ago

Our meeting in Calgary last week has given us hope! The Dr we saw has not only seen this before, but has successfully treated 5 out of 5 patients! He feels that due to Kadence's CP, and with the combination of birth trauma et al, the muscles have tightened up. He wants to try this weird looking contraption that opens and closes the jaw, in order to lengthen the muscles and get them working again. The whole therapy will last at least a year, probably longer due the length of time and muscle atrophy. It involves a team of himself, surgeon, physiotherapist, orthodontist, dentist, and our feeding team to teach her how to chew. Our base for check ups will be Calgary, so we will have lots of trips. The first one is next week for the fitting of the appliance and instruction on how to set up and use it. We have to rent the appliance at a cost of $650 / mth. We will be trying this approach, and are very hopeful, based on his 5 for 5 success rate. If this doesn't give the results we are hoping for, then they will reassess and try a more invasive approach...please pray that this is what we have been searching for! Also pray that we can work towards keeping Kadence still, with this appliance on her head/jaw, sitting still for 30 mins, 3 times a day, while it rhythmically opens and closes her jaw. Thank you all for passing our story along...that is how we found the answer! We appreciate all the support and are looking forward to sharing the positive outcome!
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$15,300 of $15.3k goal

Raised by 29 people in 42 months
Created April 25, 2013
32 months ago
Lilith Wood
34 months ago

Good luck Kadence!

Bremont Homes
35 months ago
Bremont Homes
35 months ago

We truly hope that your visit to Sick Kids this coming February provides the answers to Kadence's condition. Sincerely, Bremont Homes.

giancarlo tari
35 months ago
Patricia Renzone
35 months ago
Plain & Valley Anglican Parish
35 months ago (Offline Donation)
Lumsden & District Lions Club
35 months ago (Offline Donation)
Eugene Fraccaro
36 months ago
38 months ago (Offline Donation)
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