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!
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!
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!
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!
Well, we are off to the Sick Children's Hospital in Toronto first thing in the morning, 4:15am actually. Very excited to get some feedback and help! Thank you all for making this trip possible through prayer, encouragement and finances. I will post updates as we get information... Bless you all...
Thank you all for your support these past few months. We have met our short term goal and are now able to get to the specialists to find out how they can help Kadence! We are meeting with a pediatrician this Friday, Jan 10th, 2014, to begin the referral process for the Mayo Clinic in the USA.
We are in the planning stages for booking travel to Ontario to see 3 specialists at the Toronto Sick Kids Hospital on Feb 27, 2014. We have our appointment booked in Saskatoon for a sleep study, so they can determine Kadence's breathing patterns, on March 31, 2014, followed by a meeting with a pediatric ENT on April 1st, 2014.
Looks like a quick start this year, hopefully with a wonderful outcome!
Kadence lost her first tooth in late Dec, and the new adult one is already halfway in...our ticking time clock is directly tied to when her upper front teeth come out and the adult ones come in. We want to avoid a tracheotomy and feeding tube for her in a most desperate way...Please continue to pray for wisdom for us in finding the right person that has the answer for how to open her jaw! Please continue to tell others, as we know there is someone out there who has seen this before and knows what to do. Talk to your own Dr's, therapists, dentist's, friends, strangers...you never know who will have the answer, or knows someone who knows....Blessings to you, everyone, for joining us and supporting us on this journey!
Gary & April
We are so very thankful for all the support we have received to date in our quest to find out why our daughters jaw doesn't open and who can help fix it.
We are still in need of funds to reach our $7,000 USD fee to see the specialists at the Mayo Clinic in Minnesota. We have a band that has volunteered to play for a fundraiser, we just have to find a venue and fill in the details. Any help with that would be greatly appreciated!
Also, we have an appointment with the Sick Kid's Hospital in Toronto at the end of Feb, 2014. It will be our 3rd cranial facial surgeon, so we are not too hopeful based on the pretty much barbaric answer we received from the other 2, but we are following through as there could be answers. We will turn over every lead, every stone, until we find an answer!
I truly believe we are looking for a collaboration between specialists who perhaps have never worked together in the past...surgeons, physiotherapists, jaw/TMJ experts, neuromuscular dentists... Is there anyone out there who will take this on?
End of Lead: We contacted the Neuromuscular Dentist and was told the Kadence's case was too complicated.
REFERRAL: Our referral to the Toronto Sick Children's hospital has been received. They are requesting more testing to be done, then, after reviewing all the data, will set a date for the consultation. We are now awaiting an appointment in Saskatoon for a Sleep Study, and a barium swallow test.
These tests take a long time to book, several months at least, so our best hope to avoid the Tracheotomy is to get to the Mayo Clinic in Minnesota.
We have $1000 towards the $7000 USD deposit they have requested prior to seeing her. We are now selling Jam and baking to raise the funds as soon as possible. Our new website is www.anothermansgold.ca. Thank you all for encouraging and supporting our family as we walk through this part of our journey.
Gary & April
NEW LEAD: After searching the internet for leads, we have found a NEUROMUSCLULAR DENTIST , http://occlusionconnections.com/about-dr-chan.html, who described Kadence's condition perfectly...I have sent an email with our information and all the therapies and results to this new DDS, and am awaiting a response. I will keep you posted! PS...We just raised our Goal to $13,000 to cover the cost of the down payment for services at the Mayo Clinic.
MAYO CLINIC UPDATE: We receive a letter saying they would see us for an assessment to determine if they could help Kadence
The requirements are that we send more medical data, a letter from our Dr., plan to stay for 7-8 days, and provide a $7,000 USD deposit, which will be used to start paying for the services.
Kadence has her first loose tooth, which is generally a time of excitement, but for us, it signals limited time to get help. Our only recourse if her jaw is not resolved before her adult front teeth come in, is a tracheotomy accompanied by a feeding tube, either nasal gastric or gastrointestinal (which we just had removed in Jan after 5 yrs)
We have a need now for donations to raise this money so we can get there as soon as possible. We are selling some personal items, collecting bottles, and searching for creative ways to make things to sell.
Thank you all for your help and support
Please share our story....
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 Dentistry...you 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 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.
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