Help Kadence Open Her Jaw!

 
Raised: $15,300.00
Goal: $15,000.00
 
 
 

Created by

April Graham

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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, publi... more

 
 
 
 
 
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Updated posted by April Graham 2 days 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!

 
 
 

Updated posted by April Graham 19 days ago

Here is the latest update: We were supposed to be heading to Saskatoon today for a sleep study and meeting with a Pulmonologist tomorrow, but they cancelled as they had no available beds...It is a relief to have a break, but worrisome from a time perspective. We are heading to Calgary next week to meet with a pediatric surgeon, who has looked at the digital imaging and history, and would like to see Kadence in person to see what he feels can be done. This was a referral from a stranger who heard of our situation and asked a friend to take a look. Please ask around, and if you hear of someone who has experienced a jaw that doesn't open, let them know our situation. No one knows for sure at this point what to do, everyone is giving their best educated guess. In the meantime, Kadence is loosing her teeth and as the bottom 2 are coming up, she is starting to struggle with speech. We have started to discuss with her that if we can't find help before her other teeth start coming in, she will have to start having only smoothies to eat. We are so very thankful for all the kind words of encouragement and support we are receiving and are looking forward to being on the other side!....Thank you!

 

 
 

Updated posted by April Graham 1 month ago

Here is the news everyone...we met with an ENT and Plastic Surgeon today at the Sick Kids Hospital in Toronto. The ENT will be awaiting the results of a sleep study, which is scheduled for March 31 in Saskatoon, to determine if she has large tonsils/adenoids, as her mouth does not open enough for them to be seen.
Which leads to the surgeons thoughts....He noticed that the bones in her jaw were longer than typical, and that interfered with her opening. He said that her muscles and tendons were tight, and because of the non use, they are atrophied. This non use actually causes the bone to grow. He said they can do a surgery to remove the bone, which would require almost a year of dental, orthodontic, daily therapies and jaw splints after the surgery to train the muscles to open. BUT, he said he doesn't see any medical reason to do this procedure on Kadence as she is growing well, we are able to maintain her oral hygiene and she has had her G-tube removed and is eating orally. I asked about her adult teeth coming in, and he didn't seem to think this was a problem at this time, and we would see what happens when they come in. He also said that if Kadence had lots of cavities, or if her tonsils needed to be removed, he would do the surgery.
While this isn't bad news, it isn't particularly good either. This is the 3rd Plastic surgeon who has seen Kadence, and we have been given 3 different solutions or opinions. Once I get back home and get the sleep study done, Gary and will discuss where to go from here. It is obviously not a common presentation as there would be an agreed upon protocol to follow....again, there must be someone, somewhere in this world who KNOWS what to do. Thank you all for walking this journey with us...your support and friendship helps us to cope more than we can say!

 
 
 
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Created by April Graham on April 25, 2013

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.

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 Dentistry...you are the best!

(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.

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 on...no 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.


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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Recent Donations (29)

$15,300 raised by 29 people in 11 months.

$100.00

Anonymous

1 month ago

 

$200.00

Lilith Wood

4 months ago

 
 

Good luck Kadence!

 

$1,730

Bremont Homes

4 months ago

 
 

$4,000

Bremont Homes

4 months ago

 
 

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

 

$50.00

giancarlo tari

4 months ago

 
 

$200.00

Patricia Renzone

4 months ago

 
 

$1,000

Plain & Valley Anglican Parish

4 months ago (Offline Donation)

 
 

$1,500

Lumsden & District Lions Club

4 months ago (Offline Donation)

 
 

$50.00

Eugene Fraccaro

5 months ago

 
 

$500.00

Anonymous

7 months ago (Offline Donation)

 
 

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