What 22q11.2 Deletion Syndrome looks like in my home...

Last night on Grey's Anatomy there was a comment made about 22q11.2 Deletion Syndrome.  That is the syndrome that my Cam has. Unfortunately the comment was unkind and not accurate!

Feb 5th episode: 
Two doctors going over a patient's charts. First doctor says "The Mom's been pregnant 3 times, the first two were stillborn."
Second doctor replies "Well, this one will be too. 22q11 deletion ...She should just adopt!"

I want any parent that just found out their child has 22q11.2 DS to see this post and find hope.  Do some children die from complications from the syndrome?  Yes.  Is the syndrome hopeless or a death sentence?  NO!!  

I was told Cam may never speak...you can have full conversations with him.  He tells jokes, knows his letters and sounds, sings songs, and even talks naughty sometimes.  His speech is a little delayed and he is in speech therapy a few times a week...but guess what...so is my son with autism that doesn't have the syndrome.

Cam loves to cuddle and snuggle with me.  He is more loving and kinder than any other child I know.  His heart melts me and I could not live with out him!

Cam is braver than any of my other kids were.  He tries everything his older siblings do and doesn't let his syndrome get in the way of anything.  He is more resilient than any kid I know and has learned to be tough because of all that he has been through.  

He is sweet and compassionate to everyone he meets.  He works hard at everything he does.  He has an amazing spirit and I truly feel blessed to be his mother.  He fills up my soul and makes me happier than I ever thought possible.  I adore everything about him.

There are no guarantees in life...my life is proof of that!  My first husband Jake was a healthy hard working man and died at the age of 29.  I have 6 children and 3 of them have significant needs that make life harder sometimes.  We never know what is just around the corner.  

22q11.2 DS is not hopeless.  Will somethings be hard?  Yes!  Will you celebrate the little things even more?  Absolutely!  Will you grow into a better person raising a special needs child?  I have!  Will you appreciate everyday with your little one?  I do!  Will you get stressed?  For sure!  Will you spend more time in a hospital than other parents?  Maybe.  Will you find more love in your heart than you knew was even possible?  I did.  

My life is infinitely better because of my son with 22q11.2 Deletion Syndrome!

This is the face of 22q11.2 Deletion Syndrome!

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Our Sensory Processing Sleep Solutions...

I have two sons with special needs.  Jordy is 12 and has autism, anxiety, and OCD as well as severe Sensory Processing Disorder.  Cam is 6 years old and has 22q11.2 Deletion Syndrome, PVNH, EDS, and several medical problems related to all 3 of those diagnosis'.
One of the biggest issues parents of special needs children deal with is sleeping.  A lot of kids continue to keep their parents up all night the same as an infant does for years.  I am fortunate in that my kids don't usually keep me up all night, but we have our own set of problems.  This summer we had an experience with Cam that made me realize how dangerous sleep can be.

A lot of kids with special needs have sensory issues.  When they struggle with several it is diagnosed as Sensory Processing Disorder.  Basically all the things that affect our senses is processed differently for them.  Some are seekers, and some are avoiders.  Jordy has mostly seeking tendencies, but also has a few avoiding issues as well.  He craves intense foods and flavors because of the lack of input he receives through his mouth.  He will often chew on things when he is anxious.  His favorite food is onions...and has been since he was about 1 year old.  He has been known to add onions to Lucky Charms cereal! It was one of his first signs that something was a little different than the average kid.

Cam is more of an avoider.  Loud noises and sounds really bother him and he will cry until the sounds are gone.  Going to sporting events, plays, amusement parks or even movies are literally painful for him.  I was able to buy some headphones for him so he is able to enjoy life.  It has made a HUGE difference.  I remember the first time he used ear plugs.

I started to avoid taking Cam to places I knew would be too loud for him.  It had been about a year since I had taken him somewhere that was loud so I kind of forgot what a problem it is.  We went to a BYU football game and as soon as we got there I regretted it.  He was SO excited to go, but the stadium was so overwhelming.  The roar of the crowd and the unexpected canons going off put him over the edge.  He buried his head in my lap covering his ears and cried.  I felt awful.  How could I forget that he wouldn't be able to tolerate the sound?!  It was all I could do to not start crying with him.  I convinced him to go into the bathroom with me so we could regroup for a minute.  I spent some time calming him down and telling him how sorry I was that I forgot it would be too loud for him.  I told him that we could walk around to all the stores in the stadium and look for some earplugs.  As I was having this conversation a nice lady was listening in.  She offered me a pack of earplugs she kept in her purse.  She saved the day for me and for Cam.  We got them put in and headed out to find our seats.  When we got out there and the crowd started going crazy Cam looked over at me and got the biggest smile on his face.  He said, "It doesn't hurt!".  He stood up the rest of the game cheering, singing, and laughing the entire time.  It was adorable.  The first thing I did the next day was buy some headphones.  His life is so much more fun!

The list of both of the boys sensory issues is long!  It could (and should) fill a separate blogpost!

Sensory issues can impact a person's life more than any of us realize until we are the ones dealing with it.  The book, The Out-of-Sync Child is really great for figuring out whether or not your child is dealing with sensory issues.  It was a game changer for us and was what really helped us get on the right path for getting Jordy diagnosed with Autism.  As a parent that deals with sensory kids you start to look for anything you can that will help you child function in a world that is too overwhelming.  When Jordy was chewing everything to pieces in school I offered to send bubble gum with him.  I wondered how the teacher would react, because bubble gum is against the rules.  "YES! Send bubble gum!" was her reply.  When Jordy had the urge to chew on things he chewed gum instead.  It worked!  A simple solution to a huge problem.

Sensory issues can often cause problems for sleeping as well.  Cam and Jordy both tend to cover their entire bodies when they sleep including their heads.  I will often go and uncover both of them during the night, but they will immediately cover their heads again.  I haven't worried too much about it assuming they are both filling some sensory need that they have.  This summer however my perspective changed.

I was volunteering at a youth group camp for our church.  My mom had agreed to keep my kids for me while I was gone.  The kids are always excited about having a sleepover at Grandma's house.  Jordy was on the couch and Jacob and Cam were sleeping on the floor with some big blankets that Grandma laid out for them.  In the middle of the night my mom woke up to a strange noise.  She described it as one of the scariest things she had ever heard.  She wasn't sure if it was an animal outside, she couldn't imagine what could be making such an awful noise.  She went to check on the kids just in case.  What she found was even scarier than the noise.  Cam had wrapped himself tightly in the big blankets.  He had actually mummified himself.  He was not getting any oxygen and the sound she was hearing was his body retching for air.  The scariest thing...it didn't wake him up.  He is a deep sleeper and suffers from sleep apnea.  The lack of oxygen didn't wake him up, but did cause his body to react as he tried to breathe.  My mom rushed to untangle him from the blankets that were wrapped so tightly around his face and body.  Cam never woke up through the entire ordeal.  When I called my mom the next day to thank her for watching the kids she told me the story.  It was so scary to think about what might have happened if my mom hadn't heard him.  I was just sick to my stomach trying to come up with ideas that would literally save Cam's life during the night. I immediately began to research blankets for special needs kids.  There was not a lot of options or help.  I came up with the idea of crocheting a blanket with a giant hook and a double crochet knot so there would be big holes in it for him to breathe through.  We headed to the fabric store to pick out a soft yarn that was a color he liked (orange...I hate orange) and I began making the blanket.  I sat next to the pool in 100 degree weather crocheting my life saving "blankie".  It worked as far as covering his head and allowing him to still breathe.  There was a small problem though.  Cam didn't stay warm under it and he started going around the house finding other blankets to cover up with at night.

A few months before Cam had his sleeping scare I had been looking for really cute bedding for my 3 year old little girls room.  I came across a new company called Beddy's that was doing a kick starter campaign for their new zipper bedding designed for kids to be able to make their "bed with ease"--Beddy's.  It was an idea stemming from a mom not being able to make her kids bunk beds (we have this issue as well, it's just at the bottom of my issue list;).  I had ordered one of the comforters for my daughters bed because it was darling and just what I was looking for.  I had to wait awhile for the order to come in though since it was a kick starter campaign.  As I was trying to figure out what to do for Cam I remembered the zipper bedding.  I looked through the options and figured it was worth a shot.  Bedding that he would not be able to wrap around him because it is literally zipped to the sheets...it was the best option I had seen.  The bedding was not made for kids with special needs.  It is a great idea, really functional, and super cute.  That was what the company was aiming for.  What they ended up with though for me and my family is a product that offers me a good nights rest knowing that Cam is SAFE and WARM in his bed sleeping.  We have had the bedding for almost 2 weeks now and it is a huge hit!  I also got one for Jordy hoping that it would also help his sensory sleep issues.  I have a weighted blanket for Jordy, but it doesn't cover his entire body so his feet are usually left uncovered and cold.  They both LOVE their new Beddy's.  They also can both make their own beds now, which is awesome and has helped build up their self-esteem.  We have already had one bed wetting experience and also Cam woke up with blood coming out of his ear one morning and they have washed great and the stains came out easily!  They are super soft and comfy and my other kids were asking for their own Beddy's the next day.  I'm not sure how many other families with sensory kids would benefit from this bedding...but it has really helped us!

My son and the son of this mom inventor (Betsy) had played ball for a couple weeks together and we had become Facebook friends.  This is how I found the kick starter campaign in the first place.  I gave her a call to tell her how amazing it has been for us and she said she had many other customers with special needs kids emailing her with similar stories.  I have never endorsed a product through my blog, and I have not received any money from the owner's of Beddy's.  I just know that a few months ago I was stressing to the max imagining Cam suffocating in his sleep, and I looked for personal experiences through the internet to help me.  My hope is that if anyone is struggling with the same issues I was, they will see this and be able to rest a little easier!

I asked Betsy if she would mind if I talked about how awesome Beddy's is in a blogpost.  Her response was awesome and truly shows her character.  She has offered a special discount code to use at check out for all my readers!  It is a savings of $30 off the purchase price and they are donating $5 to the Dempster Family Fund which funds research for 22q11.2 DS every time the code is used!  I think this is awesome and I'm so grateful that she is offering it!  The code will be good for orders through the end of November 2014.

Use code Beddysfor22q at checkout.

Check out how soft that inside layer is!

 I never claimed to be a professional;)

 The perfect combination for our different sensory needs!!

 Jordy uses his weighted sensory blanket over his Beddy's now!

This bedding is just darling!

Thanks Betsy, Angie and Beddy's for making my nights and mornings a lot better!

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Finally a Princess...

For 15 years of motherhood I was STARVED for a baby girl.  Growing up we had a lot of girls and it gave me a false sense that everyone had girls.  I do remember sitting in a church meeting when I was a teenager and there was a woman that had just given birth to her 5th girl.  I had this thought, "At least it isn't 5 boys...that would be terrible!"

Well, having 5 or 9 boys isn't terrible at all.  But it does leaving a girly girl craving pink, dresses, bows, braids, dollies, and all things girly pretty bad!  I found out "Lil' Sis" was a girl on the 15 year anniversary of Jake and I's first date.  It was also just a couple weeks after we received Cam's first dx of PVNH.  Let me tell you...retail therapy is so much better when it's pink!

Having Lil' Sis in my life...well, in all of our lives has been an unexpected blessing and has brought all of us so much joy.  The boys are crazy about her and so is her daddy!  Having a daughter has completed our family.  I will Never get over it.  I still can't believe how blessed we are to have her.  Every time I buy necklaces, dresses, fingernail polish,  and girly bedding I am reminded how awesome it is that I get to do it.  Even more so, every time I do her hair, paint her nails, play princesses, sing songs, and play baby dolls I remember how blessed I am.

If I had a daughter first I don't think I would have appreciated the miracle of it.  I would have figured I would have had lots of girls.  I might have complained about doing her hair for 8:30 a.m. church or how she takes all my jewelry and gets into my shoes.  Praying for a girl for 15 years gives me great perspective, I love and appreciate every little thing she does!

Today my Lil' Sis is 3 years old.  She makes me so happy.  Here are some pictures over the last 3 years.  Making cakes is one of my therapies...so don't judge me on the appearance of being spoiled with elaborate cakes;)  To check out more of my cakes click here.

1 yr old Cinderella Smash Cake and a Party Dress Cake!

2 yrs old Minnie Mouse Party!

3 years old princess party!

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*All the great professional pics came from my first friend (age 1) from Loulou Photography!

It's a Boy...Again...

(First off...NO, I am not pregnant, nor will I be!)

Waiting for Cam to come 6 years ago:)

When I found out I was pregnant with another boy (this would make 9 boys!) I was devastated.  If I can be brutally honest I was depressed.  I wanted a daughter my entire life.  Growing up I thought I would have all girls.  I grew up with a lot of sisters so for our family having a boy was rare.  When I found out I was pregnant every time I was shocked...each time it was a boy.  Usually the sadness would last a day or two and then I would get excited about having a boy.

With Cam I stayed upset about it a lot longer than I did with the others.  I was dealing with a lot of emotion being pregnant again.  The last time I had been pregnant Jake was dead, so it brought up some unexpected grief issues as well.  It was also a bit strange to be pregnant with a different husband.  It doesn't make any sense now, but at the time it was emotional.

I planned to give birth naturally with Cam.  I had a bad experience giving birth to Jacob with the epidural so I was worried that would happen again.  After 13 hours of painful all natural labor I finally delivered Cam.  When they placed him in my arms I had the most amazing experience.  

As I looked into my baby boys eyes, I knew he was mine.  I knew he was meant to be my son and I was his mom.  I didn't want a girl, or any other baby in the world.  I wanted him!  I wanted the babies that were meant to be mine.  He melted my heart and from that moment on he would fill my soul.

It completely changed my perspective on having children.  It was a spiritual experience that was so healing and such a blessing for me to have.  It taught me a lesson that God's hand is in our lives in all things, great and small.

Cam is a fighter and lives life to the fullest!  He is such an example of resiliency and enjoying the journey...not just enduring it.  I love him to pieces and thank my Heavenly Father everyday that I get to spend with him.  He tells me all day long that I am "the best mommy ever".  He is sweet and loving all the time.  I am so grateful that he is mine.

Happy Birthday Cam!!

I'll post about his party in the next couple days!

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Cam Can't Catch a Break...or maybe he can:)

We took Cam in for his annual neurology appointment.  We updated the neurologist of all the latest things going on with Cam.  Luckily he is going to do some good research and get in contact with Cam's geneticist and they are going to evaluate him for an official Elhers-Danlos Syndrome.  The neuro went to a conference just 2 weeks ago all about EDS.

The other awesome thing was that as we were talking over his PVNH diagnosis in connection to EDS he pulled up the PVNH website.  This is awesome because I know the lady that has made it her life work to get this info to doctors around the world.  She started the website and it is her daughter that is the face of PVNH.  Her daughter Ella, died at just 7 months from complications of PVNH.  This woman is a good friend and she works constantly for our kids!  I love her!  Thanks Yo!

The bad news....

Cam had ear tubes put in last January.  His right ear has had some drainage the last couple of days.  He hasn't had any pain and doesn't have a temp, but I asked the neuro to check it for me just in case.  His poor ear is completely perforated.  As in there is literally no ear drum left, so he has no hearing out of that ear right now.  He got us an emergency appt. with our ENT for tomorrow to discuss surgery options for fixing it.  We lose our insurance on Monday...no big deal;).   I am so thankful I had this neuro appt. scheduled so we found it!!

I feel so bad for Cam.  I want to go to the doctor one time and have it be an "everything looks great, keep up the good work" kind of appt.  Poor kid can't catch a break.  I am praying for a quick fix and full recovery for his ear.  I don't know what to expect, so any of my special needs mamas out there any info or advice is totally welcome!

I will update once we know what is going on with him.  He is still happy, sweet, and the cutest little 5 year old I know.  His birthday is next week and we are planning a Beyblade party so he is excited about that.  His Kindergarten program is tonight and he can't stop talking about it...so he is distracted and happy.

Thanks for the love and support!

Blowing giant bubbles at pack meeting last week:)

*EDIT!!!  Cam was seen by the ENT the next day.  His ear was extremely infected but the ear drum and tube were in place and working properly.  He was put on some ear drops.  Cam does not have to have surgery on his ear!  This is fantastic news, we were so relieved and see the blessings and miracles in our lives.

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Heartbreaking News for Cam's Heart...

Three years ago when we were searching for answers about Cam's health we saw a cardiologist.  They did an EKG, chest x-ray, and evaluation and said that Cam had NO heart issues.  As we continued to search for answers we got the diagnosis of 22q11.2 Deletion Syndrome.  Curtis and I sat in the geneticist's office and took notes on the many specialist we would need to see.  (Click here to read more about that time.)  On the top of the list was a cardiologist.  I explained that Cam had been examined by a cardio just a couple months earlier and they cleared him.  The Doctor asked if they did an echo.  No, they hadn't because it wasn't necessary.  The geneticist explained that every patient with 22q has to get an echo and we needed to schedule it immediately.

We called the cardio office and explained Cam had a new diagnosis and would need an echo.  Well, our cardio didn't think that he could be wrong about a patient and put a full stop on his chart that prevented anyone from scheduling an echo for us.  The report stated, "I have evaluated this patient and even with the new diagnosis there is no reason to do an echo."  I spent over two weeks on countless phone calls trying to find a way around it.  Finally, we were back at the genetic's office and we told him of the trouble we were having getting an echo scheduled.  He couldn't believe it...(I honestly still can't believe it!).  He walked us over the the cardiology dept. of Primary Children's Hospital and demanded the appt. be made immediately.

A week later Cam was getting his echo.  They found 3 heart defects in my little guys "perfectly healthy heart".  I was devastated.

1. Small secundum atrial septal defect....a small hole in the top of his heart.

2. There is a trivial patent ductus arteriosus....leftover fetal tissue.

3. Aortic root mildly dilated.....seen in a lot of PVNH patients.

The first 2 defects shouldn't cause him any problems through out his life.  The aortic root was mildly dilated, this is potentially life threatening and needs to be monitored through out his life.  They give it a Z score.  It is the size of dilation in ratio to their body size.  His Z score the first time was 3.2.  

We scheduled a yearly follow up and then next time Cam had his echo it had gotten smaller.  A Z score of 2.4.  Our new cardiologist was pleased with it's progress and said we should be good to monitor his heart every 2 years.  I mentally had checked his heart off my worry list.  I knew it could be a problem but they assured me that it was going to be fine.  I have spent my research and worry energy on his kidney, learning disabilities, speech, immunity issues, and his over-all health.

Curtis and I have been on a Cobra insurance plan and it ends at the end of June.  I lined up all of Cam's specialist for the year between April and July so that we would be fine to switch insurances in July. (Still working out that plan!)

In May we had his echo and Cardio appt.  I didn't even make Curtis go with me, because I was so sure that his heart was fine.  Well after the echo the Doctor came in with some bad news.  The scan over a year ago had been off and the measurement was wrong.  It had not gotten smaller.  In fact, it has gotten bigger.  The Z score is now at 3.7.  The cardiologist was confused about this defect.  This certain defect is rare and doesn't occur in 22q patients.  I hadn't done a ton of research on it so I didn't have any extra info I could give him about PVNH patients.  The crazy thing about having kids with rare syndromes, or rare diseases is that the parents end up being the researcher, doctor, therapist, specialist, educator...the list goes on.  So without any research to add I left the cardio office feeling anxious and sad.  

I came home and immediately put out a message on my awesome support group page for PVNH.  The info and medical articles started pouring in.  Apparently PVNH can also be linked with Ehlers-Danlos Syndrome (EDS).  This is another rare disease that is a connective tissue disorder.  It has a lot of different symptoms and can be very mild to very severe.  Patients tend to have stretchy skin and low muscle tone as well as several other things.  The more severe cases have stretchy veins and an aortic root dilation.  This can be very dangerous.  If it isn't monitored and repaired if needed the aortic root can actually tear and the patient has an aortic aneurysm and can die in just minutes.  The patients need to be monitored much more regularly because it is a progressive heart defect.  I called the cardiologist and let him know about the link between PVNH and EDS.  Cam will now be monitored every 6 months by the cardio as well as have an echo.  

The other concern with this problem is having high blood pressure would cause the dilation to tear much more quickly.  Having only 1 kidney Cam is at high risk for high blood pressure.  His kidney and heart both would be critically damaged if Cam is in a situation that his blood pressure is too high.  

I am trying to digest this new information.  It has been really upsetting, but I am so grateful for the medical team I have for Cam.  I am grateful to have amazing support groups that can link me to medical reports in a matter of minutes.  I am so thankful to my Heavenly Father and for the blessing of having the Holy Ghost to guide us through this life.  Having the spirit guide me as a mother is essential in all areas, especially when it comes to mothering and helping my special needs guys!

I am still researching the ways they can fix Cam's heart problem.  The cardio said they usually discuss replacement options when the Z score is over 4.  My hope and prayer is that Cam's dilation stays where it's at for a long time to come.  We will do everything it takes to prevent, and protect Cam from having an aortic aneurysm.  Life is so precious and fragile.  I truly cherish every day I have with my sweet boy!  I pray, I have a lifetime of days with him.

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Father's Day Over the Years...

I have been blessed in my life to have so many great father figures for myself and my children.  When you become a widow at age 26 with 4 little boys, it gives a lot of people the opportunity to step up and help fill in the holes that a single mom can't fill on her own.  I am so thankful to all my brother's, brother-in-laws, grandpa, and my dad for all the support and love they have given my children throughout the years!

It takes a special kind of man to be able to look at a young widow with 4 sons and a broken heart and decide he wants to step in as a husband and father for the rest of their lives.  What an amazing blessing Curtis has been to me!  We have been able to have 2 beautiful children together, and raise 10 kids over the last 8 years.  I love him so much and thank my Heavenly Father everyday for blessing my life with him.  We have so much stress in our lives and still have so much happiness.  That is because of the love and respect we have for each other.  I love you Curtis!

I am also grateful for the love and support of Jake, while on earth and now from beyond the veil.  We have been blessed so many times to know that he is near and a very important part of our family and our lives.  It is an amazing feeling to love two men with all my heart, it is also amazing to have 2 dad's to watch over them and protect them.  I love you Jake!

Happy Father's Day to all the Dads out there!!!

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