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Norah's Jaw Journey

$429 of $20,000 goal

Raised by 8 people in 4 months
Norah Sedars is a 7 year old beautiful little girl who loves Jesus with all her heart.  

Norah's journey began in 2010 when she was born a very healthy little baby.  She was our first and everything was so new to us as parents. She always took a long time to feed when she was a baby, but being a first-time mom I thought it was normal.  Norah snored very early on, which is not uncommon for a baby.  The snoring continued past her first birthday and we were sent to an Ears, Nose and Throat (ENT) doctor for further evaluation.  Within the first few minutes of the doctor's examination he stated that he wanted us evaluated with an ENT surgeon.  We were told that she had a very mild case of Pierre Robin Sequence (PRS).  PRS is usually diagnosed very early on due to children born with cleft palates, a very small jaw and other characteristics.  These characteristics in turn cause breathing and eating issues.  We were then sent for a sleep study. We found out she had severe sleep apnea.  Norah would stop breathing for 10 seconds or more 34 times an hour.  By the grace of God we did not lose her during this time.  Within a week of getting the preliminary results of the sleep study we were in surgery.  During this time of uncertainty with Norah’s situation, we were blessed with a son in April of 2012.  This was also a blessing for Norah.  It was a distraction for her and she could focus on being a big sister instead of what was about to happen. 

 

In August of 2012 Norah had jaw distraction surgery. She was 20 months old.  She was in PICU for 5 days and then moved to a regular room for 2 more days. This surgery included cutting the bone and placing distractors on both sides of her lower jaw. There were metal rods that extended out from the back of her jaw behind her ears, which connected to the distractors inside her jaw.  Dusty and I were then given a tool that looked similar to a screwdriver to then turn these rods “3 clicks”, 3 times a day every day for a couple weeks.  Dusty would hold her and I would do the turning.   It was one of the hardest things we had to do as a parent but we knew we had to do it to help her.  This surgery extended her jaw 17 millimeters.  This opened up her airway and allowed her to breathe normally.  Her snoring stopped.  Within about a couple months we noticed that she was not able to open her jaw very wide.  She was only able to open it wide enough to get a small, plastic baby spoon into her mouth.  We returned to the doctor and they referred us to a specialist in Bismarck, North Dakota in January of 2013. Upon our visit with him, he explained that her jaw joints, the condyles, did not form properly in connection with the PRS.  This was the cause of her mouth not being able to open very wide. He stated that because of her age he did not want to do anything until she was at least 5 years old or if her mouth opening became smaller.  It was so much information for us to digest at the time.

 

Just a few months later we began to notice the opening of her mouth was getting smaller, to the point of not being able to get a M&M between her teeth…FLAT.  This was a red flag and we reached out to the doctor in Bismarck only to find out that he no longer worked there and did not know where he went.  We returned to our local surgeon and we were then referred to a doctor in Minneapolis, MN.  Upon that visit in June of 2013, we were told that her lower jaw bone was fusing with her upper jaw.  There was not a whole lot of research out there that we could find on what Norah was going through, which was difficult to hear as parents.  The doctor stated that he would go in and reform her condyle to get it working again.  This surgery had very dedicated rehabilitation afterwards and was very strict and exhausting, especially for a little 3-year-old.  They had to make a specialized mouth guard specific to her where she could be hooked up to a Continuous Passive Motion (CPM) machine while she slept. 

 

In October of 2013 Norah had this surgery.  We were also 8 months pregnant with child number 3.  We did not know what to expect when she came out and nothing could have prepared us for the extent of care afterwards.  This was the most difficult struggle we had ever encountered.  We couldn’t even prepare Norah for what to expect when she woke up because we didn’t even know ourselves. When she did wake up, she was a different little girl. She had this mouthpiece wired to bone splints with metal pieces sticking out of her mouth.  Her whole demeanor changed.  She couldn’t talk very well at all.  She was on a very strict liquid diet because she could not chew.  Since she had this mouth guard, every meal was a huge ordeal.  She could not fit an eating utensil past the mouth guard or her lips so we had to improvise and use large syringes to feed her.  She also could not drink from a cup or even use a straw so the hospital gave us some squeeze bottles with extenders.  After every meal, I would have to go through a cleaning process with a squeeze bottle of water to make sure we did not have any remaining food between the mouth guard and her teeth.  There was a big concern for the potential of cavities.

 

Norah had to be hooked up to the CPM machine every night while she slept and every afternoon while she napped.  This machine would continually move her mouth open and closed.  The machine was very sensitive, and if she did not remain completely still on her back while she slept, it would stop working.  Try telling a tired or half-asleep 3-year-old that.  At the time, it was not an option to have the machine not working to keep her mouth moving.  God works in mysterious ways and I truly believe that is one of the reasons why I was pregnant at the time.  He used this to allow me to continually check on Norah and her machine throughout the night.  This lasted about a month until one morning.  I fed our son and then prepared for the process to feed Norah.  Right when we sat down at the table I heard her clicking something in her mouth.  I went and got a flashlight to see if I could see anything in her mouth.  As I looked in, I could see her moving something around in her mouth with her tongue.  The piece was too big for me to remove past her mouth guard.  After multiple calls to the doctor in Minneapolis, we went in for an emergency visit to our local dentist.  After the two doctors consulted, it was determined that a small portion of the mouth guard had broken off during the night and was floating in her mouth.  BY THE GRACE OF GOD she did not choke on it in the middle of the night. We continually see God’s mercy, grace and love during this whole time.  The dentist removed the mouth guard and, at that moment, the joyful demeanor of our little girl returned.  It was absolutely amazing!!  We had to return to Minneapolis two days later to have the bone splints removed. 

 

For the next 14 months or so we continued extensive rehabilitation at home with an OraStretch and monitored her jaw opening.  The OraStretch was a handheld machine we used to exercise Norah’s jaw.  At first we had to use it every hour or two while she was awake for anywhere from 5-10 minutes each time.  After about 10 months it had changed to about 15 minutes 4 or 5 times a day.  This definitely limited the activities we did and places we went, especially in the beginning.  This rigorous therapy lead to my Carpal Tunnel I now have in both of my hands.  This has caused numbness, tingling and pain.  Towards the end of the 14 months we started noticing that the OraStretch would have areas in the plastic that would tend to give out.  The OraStretch started to give out, we’d order a new one and the same thing would happen after some use.  I think we received a total of 5 or so new ones, which were not covered by insurance. 

 

We also started to notice that the amount of space for her jaw opening was starting to decrease.  Upon returning to Minneapolis, we discovered that her bones were fusing again.  We then were referred to a specialist in New York.  The day after our referral, we found out we were pregnant with baby number 4.  We had a consultation in New York in March of 2015. We then had a surgery in June of 2015 in which a Matthew’s Device was placed on her jaw and attached to her skull for 3 months.  During this summer, she was not able to swim and participate in other activities due to the Matthew’s Device.  The rods coming out of her jaw became infected multiple times causing pain.  So, the device was removed in September of 2015.  Due to situations beyond our control, Norah’s jaw moved up and back closing off her airway.  The next couple months were physically, emotionally and spiritually draining and exhausting.  Norah’s snoring returned viciously.  We had to remove her younger sister from the bedroom they shared because Norah snored so loudly she would keep her sister up all night long.  Norah did not sleep for more than a couple minutes before moving and rolling around.  She even got to the point that we would find her multiple times during the night on her knees and elbows with her head hanging down.  We found out it was how her body was unconsciously moving just so that she could breathe.  By this time I was nine months pregnant with child number 4.  Our local surgeon immediately ordered another sleep study.  It was even worse than the first sleep study she had three years prior.  She now would stop breathing for 10 seconds or more 47 times an hour.  This would be like if you held your breath for a minimum of 10 seconds almost every minute.  It was described to us by multiple doctors as if she was slowly suffocating.  This was so hard in every aspect of our lives, feeling like we took one step forwards and three steps back.  She was scheduled to have a tracheostomy less than 48 hours later.

 

We knew Norah would not be able to swim with a trach and since our little princess had such a love for the water, we took her and her siblings to a waterpark in town the night before her tracheostomy.  It seemed to happen so fast that, as a family, we all had to learn as we went.  The experience we have had with Norah’s trach has been a walk of faith.  Between her continuous care, emergency kit, suction machine and her nightly humidifier that she must have, it has limited what she can do and where she can go.  Norah received a doll from her aunt, with which her daddy drilled a hole in the neck and we put a trach in it.  She now had her own trach doll she could take care of.  This was the birth of a ministry for Norah.  She would state at different times how she wished she could help other kids that were having surgeries.  We started to brainstorm what she could do.  That is when we realized the doll was going to be how she could help them.  So, we started a ministry called Norah’s Babies, which would later become a part of Norah’s Jaw Journey.  We purchase the completely hard plastic dolls, drill holes in the neck and donate them to other children with trachs, children’s hospitals and Ronald McDonald Houses.  They are then give to families of children who have tracheostomies.  Attached to the dolls are a tag with Norah’s picture with a statement from Norah, which says “I would like to bless you with this doll so that you know you are special and loved.”  We have used our doll to train babysitters, family members, friends and Norah’s siblings on trach care and what to do in an emergency.  It has been a learning and teaching tool we have been able to use. 

 

The time of her tracheostomy was such a hit in the gut and heart for us as parents, along with having a 3-and-a-half-year-old, an almost two-year-old and a six-week-old.  All you want is the best for your child and for them to have a normal life. Norah’s has been anything but normal.  Now, with saying that, I will also say that we serve a mighty and faithful God.  Through this journey, we have never lost our faith in God and His bigger plan for us, our family and for Norah.  She has been an inspiration to us, her siblings, friends, family and even strangers.  Dusty and I feel so blessed that God chose us to be Norah’s parents and to allow us to walk this journey with her.  Her own faith in God is motivating.  She knows God has a plan for her and what she is going through.  She passed out little bibles given to her when she made her trips to New York.  She passed them out to doctors.  She also passed out salvation cards she called her “Love Cards” she received from a ministry called Lifelight to many, many people she encountered in Iowa.

 

After her trach, we were referred to a team of doctors in Iowa for what the next steps would be for Norah.  After multiple consultations there, we were referred to very specialized doctors in Texas.  In November of 2016 we made a trip to Texas for a consultation.  To say the least, it was hopeful and for the first time we actually feel like there is light at the end of the tunnel. 

 

In February 2017, Norah had a surgery in Texas.  They separated the mandible and upper jaw bones, cleaned out the area and removed some permanent teeth from her mandible.  The internal spacers were used so everything could heal without the bones fusing together again.  Our next step is coming up quickly.  The plan is to put in artificial joints into both sides of her jaw.  The benefits will be that she will hopefully be able to use her jaw and chew!  It may sound so simple to so many of us but it is something she has not been able to do.  This journey has also shown us so many things we take for granted in our everyday life.  The downfall to this is that she is so young.  Her body will continue to grow for the next 7 years or so but the metal of the artificial joint will not.  Norah may need addition surgeries in those next years until she stops growing to replace the smaller artificial joint for a bigger joint that fits her.  The number of surgeries all depends on how she grows.  Then, when she has stopped growing, she will have a custom artificial joint made. This will be made to fit her specifically.  The number of future surgeries for Norah is unknown.  They have not been doing artificial jaw joints long enough to fully research how long they will last or the future complications with them.  Artificial joints in children is still such a new territory.  There are very, very few pediatric doctors who do this.

 

In December of 2017 we moved our family to Minnesota for a job opportunity for Dusty.  With that we have had to find all new doctors, ENT’s, etc.  It was very hard to leave her ENT surgeon in Sioux Falls who has been with our family since the beginning.  It was been tough at times but we continue to rely on God at all times.    All money raised for Norah will go towards her medical costs and the future trips to Texas we will be making for the surgeries and many follow-up appointments in 2018 and beyond. The money will also be used to help in furthering Norah’s ministry with the trach dolls and more. 

 

Thank you for your prayers and financial support as we continue to walk this journey with Norah and our family.  God bless you!
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Thank you to everyone for your continued prayers and support! The last few months have been long but we are persevering in the Lord. Norah is one strong little girl and has gone through more than most will ever know or realize. I’m thankful for these day when I can help her walk this long journey. We have a couple things going on but hope to post a picture and more of an update in the next couple weeks. Thank you again for helping Norah and all of us!
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Raised by 8 people in 4 months
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