Our PANDAS story

2017/ 2018 was a BAD year for us!  October, Lexi's teacher was fired because she allowed her kids to run rampant with no control, with the philosophy of "If they want to learn, they will listen.  I am not here to babysit" Her behavior problems began about a month before, and we had no idea why.  Beginning of November, all parents were given a blank statement email, and it wasnt until I had a personal conversation with the principal that I found out how severe it was.  

Alexia has always had anxiety.  She cried her first week of school, but it grew intense quickly.  Her temporary (sub for a month) said she would ask to go to the bathroom, and then be found in the hallway alone just crying.  In the middle of a lesson, she would get stressed, and crawl under her desk and start crying.  This is when we got hyper focused on helping her.  She was seeing a therapist twice a week, and discussions about anxiety meds started.  

December, she got her new teacher.  Complete opposite of her prior, she was more a drill sergeant.  The very first day of class, she had all the kids toss their journals in the garbage (They have free writing beginning of class every day, so for some kids, this was huge!  I know at least 1 girl was in the process of writing her own story) and she laid down super strict rules, I am assuming to get all the kids to obey better, after being feral for so long.   This did not work at all with Lexi, and just escalated her further.  I talked to her principal again, and requested a class change.  She could not, stating that 1/3 of her class had already been transferred out, and there simply was no other class that had room.   

After Christmas Break, Lexi's meltdowns evolved from just crying under her desk, to her needing to hide.  It started as putting up a book and within weeks, building a fort out of chairs and supplies while screaming and throwing things at teachers and students who tried to stop her.  Obviously leading to a bunch of phone calls home (Multiple daily) and lots of visits to the principal's office.  Medications were introduced, each new dose causing an influx of behavior issues. Therapy now 3-4 times a week ($70 an appt).  

Things continued to escalate.  Now she was throwing things at home, trying to hurt her little brothers as well, and when she got a wrong flavor of sucker, trying to choke me with a seatbelt while driving without any warning.  I sat in the hospital parking lot COUNTLESS times, contemplating where I went wrong, and willing myself to open that back door and drag my 6 year old to the ER.   

We had NO IDEA what to do!  We felt like failures, and she was out of control!!!!   My saving grace was posting in a mom group and asking what actually will happen if we walked thru those hospital doors.  Someone mentioned something I have never heard of before....  PANDAS

Pediatric Autoimmune Neurological Disorder Associated with Strep. Complicated disease.  To put it simple, strep causes inflammation.  Body reacts by sending antibodies and white blood cells to area to fight.  Her body does not know how to ONLY send to that site, so it causes inflammation all over her body to "fight" including causing her brain to inflame as well.  

  She had Strep throat the summer before all this began.  I texted her Ped, and he said to bring her in for some testing.  

Normal strep antibodies for someone who is currently sick with strep is anywhere from 0-200.  Alexia's number was 806.  4x the high range!   We started her on a high antibiotic, and within 7 days, she was "better"  The fits suddenly stopped.....she was laughing....she was a normal 6 year old.  I was shocked!!!  No way in hell did I expect antibiotics to be the cure to her mental health!  

In no way does this mean we are all better.  She still has anxiety, which includes even this week, her crying her way thru most of her first day of school, and also getting "lost" at lunch because she could not find a green star to sit at, and wandered the lunch room for 30 minutes until she found one.  Basically at that same time she was supposed to already be back in class.  She had to finish eating in the office then get escorted back to class, which means more crying from embarrassment.  She was behind in class before 1st grade, and not learning anything at all for the year, put her even more severely behind.  She now has an IEP for reading, writing, speech, and behavior to help her get caught up.   She also still has a lot of issues with PANDAS.  Anytime there is any inflammation in her body, like say she scrapes her knee, or stubs a toe, it causes inflammation everywhere else too.  Luckily a child dose of Ibuprofen will solve it for the day within 30 minutes.  

TLDR:  in first grade, daughter became overly anxious and stressed, which quickly evolved into violence and not stop anger and crying.  Diagnosed with PANDAS and Anxiety because strep antibodies were 4x normal limit.  Things settled down, and now we just deal with in occasionally and manage anxiety.

Jaxen's Birth Story

Thanks to Shae and La Bella Sole Photography for this awesome pic!

Jaxen Ender Cross

Just as with Paxton, I had Prodromal Labor with Jaxen as well.  For those that have forgotten, Prodromal Labor is your body going into labor, but Baby is not in the correct position, so the contractions are not very effective.  Usually when you are in labor, your cervix should progress at least a cm every 1-2 hours. 

So, After my FIFTH time going into Labor and Delivery to be monitored, I was fed up.  I was ready for my unnamed baby to be born, so while on the monitor, I did things to try and make my Contractions stronger.  We arrived at L&D at about 10pm, and was hooked up by 11.  They checked me, and I was 3+ dilated, and 80% effaced.  So I needed to get to 4+ in order to stay within 2 hours. 

Contractions were pretty regular, and strong, coming every 3ish minutes.  I did nipple stimulation, and pressed on my pressure point on my hands with each contraction, willing them to get stronger and more painful.  I actually got a few of them to be really really painful, but since it wasn’t every one, I figured I would be sent home….

At about 12am, the Nurse came in to check my progress.  I was doubtful there was any change, but surprising enough, she said I may be at a 5!!!!  She called the Charge Nurse for a second opinion, and she said probably 4+ but even still, I get to be admitted!!  YAY!!!

Within the next hour, they moved me into the room I will be laboring and recovering in.  The hooked me up to the Tocometer again, and inserted my IV.  Speaking of my IV, it was a NIGHTMARE!!!   I am pretty sure I dilated more on the walk over because my body went into shock, which is what has happened to me both times before when I hit transition.  As she started to insert the IV, I started going into hysteria. I was crying so hard I was laughing (Or maybe Laughing so hard I was crying) and during my uncontrollable emotional stage, I felt gush after gush of fluid escape.  It took another couple minutes of the nurses waiting for me to chill out before I could tell them that I think my water broke.  She didn’t confirm, but she said with how much fluid there is, it’s probably true. 

Contractions are still going really really strong at this point, so I asked how soon before I can have an epidural.  With my freakout, my contractions were no longer in a pattern, so they said we needed to start Pitocin to get the pattern back again, so we are thinking about 5am I can get my epidural… UGH!!!

So they slowly started Pit, increasing it every 20-30 minutes, until it was at about a 6 just before 5.  At this point they decided to check me again, and I was “officially” at 5 cm. 

At about 5:30, I was finally able to get my epidural. My body was shaking really hard, and I was really nervous, but knew I needed to get this part over with.  I was really anxious about getting it done with how much I was shaking, but the anesthesiologist assured me that I am perfectly fine.  The epi went in really smoothly!  Took about 3 minutes to take full effect!  It was awesome!  Now I can just relax, and wait for push time!

They checked me again just after 6, and now I was between 7+ cm, still at 80%, but -1 station.

At about 7am, they came in and finished breaking my water (baby had stopped the “leak”)  My nurse was training another, so they were discussing a few things, such as how water breaking tends to move things a long a lot faster, and started talking about different positions that can help things process more.  One of the positions she mentioned was the “Royal Throne” where they sit the mom up, and spread her legs.  I told them that was the position last time that almost made Paxton fall out.  So they laughed, and said they won’t make me do that position then.  This brought their discussion to pressure.  Saying if a patient (especially with an Epi) complains of sudden pressure, they need to be checked immediately, because that is usually a sign that Mama is fully dilated and ready to push.  They also checked my at that time, and I was at an 8

About 45 minutes after all this, I felt that pressure!  So I called the nurse, and asked them to come in.  She came in, as well as the training nurse, and said that I was just on the verge of 10cm, 100% and ready for us to call the doctor!!!  So she said she will call Davis, and have him head on over. 

By about 8:15, Davis was in the room, getting suited up, and we were all excited to get this going!  2 contractions later, Little Baby Boy Cross was born!!! 

    

Alexia and Paxton were thrilled to meet their baby brother!!

Lexi was head over heels in love with him, and snuggled him for 20 minutes straight just cooing at him (While Paxton finished off my grapes lol)

A Mental Filter - Postpartum Anxiety

I knew from the very beginning that I was not meant to have this child.  With my first, I had to go into battle with my own body to get pregnant.  It was a monthly strategic planning,  coordinating pills, and hormones, and appointments and ultrasounds, week after week, and month after month, until I finally got that positive test a year later.
With my second child, It was a lot more simple.  5 simple pills, and a half attempt to get pregnant, and I got my positive test.

"That can not be right"  What I call a "Mental Filter"  told me.  "It's not a viable pregnancy."  So I called my OB and scheduled a dating Ultrasound.  During my first ultrasound, they confirmed that I was pregnant, but it was too early to see a heartbeat.  My Mental filter told me that of course there is no heartbeat.  It's not this easy to have a baby.  I am sure I will start bleeding and will miscarry before my next appointment.

This is how it went throughout my entire pregnancy.  Every appointment, I went in bracing for the worst.  That this child inside me would suddenly perish.  Would no longer have a heartbeat. Would have a severe mutation that would make life impossible.  I looked forward to my appointments because I was hoping that maybe next appointment was the one that I can start healing from the loss of my child.  It didn't matter that every single ultrasound, every single blood test, heart rate, etc pointed towards a happy and healthy baby and pregnancy.  Even the tumor in my liver was behaving surprisingly well.  This monster inside my head would not let me accept that everything was going to be ok.  I refused to attach to this child while I was pregnant because I needed to protect myself from the pain that was just around the corner.

As I entered into the third trimester, I finally was able to feel him inside of me.  At this point, it started to become really hard on me emotionally.  I did not want him to come out because for now, he was perfect.  At this time, the world outside of my womb was crumbling.  My sister in law was quickly losing her battle with Breast Cancer.  Suddenly my son's impending doom became a gigantic problem.  I realized at this time that it was not going to be just me that will be heartbroken.  My entire family was going to be crushed when my son did not make it.  By this time, I had accepted that he was fully protected from harm in my womb.  But I had also accepted that my son was to be a still born. Once again, there was no medical evidence that something was wrong, but my mental filter said otherwise.

Weeks before I was due,  My SIL was hospitalized.  The cancer had reached her brain, and she had a life and death decision to make.  She chose life, no matter the pain, she chose to be there for family, and face whatever physical consequences that brought.  This was supposed to get her better before she started to decline again, and then we would lose her.  We were looking to be lucky to have 6 months.  

Also during this time, My daughter got very sick.  She had sores all over her mouth, inside and out and down her throat, and was unable to eat or drink anything.  She was in and out the the doctors every day, and finally ended up in the hospital.  I was helpless, and I was guilty because my daughter needed me 100% and how was I supposed to do that when I was 8 months pregnant.  I was a horrible mother for allowing another child come between me and my daughter.

Now this mental monster started to play on my emotions even more.  How dare I decide that now was a good time to have a baby.  There was no reason that I should be allowed to have so much joy and love come into my life, especially when there is so much pain and suffering in the family.  I had incredible guilt.  I wished the pregnancy never happened.  I wanted it over with .  I wanted to go back in time, and stop myself from making this horrible mistake!  It was no wonder that I was destined to have my child die before I truly met him.  I was selfish. If there was a way that I could have stopped and paused this pregnancy, I would have done it without hesitation.  I can not even begin to tell you how much I hated myself for allowing myself to have a baby at this time.

3 days before Paxton was born.  My sister in law died.  We did not get 6 months.  We did not get 6 weeks.  We barely got 6 days before she was ripped away from us.  She was gone.  Just like my little boy would be in just a few short days.  I was mentally incapable to handle this much loss.  This mental filter had finally taken over me.  I was so distraught, my emotions just left.  I could no longer cry.  I could no longer feel happiness.  I was staring at a bottomless pit and slowly sinking towards the edge.

The day of induction came.  I arrived and gave birth to the most incredible little boy I could imagine!  With his birth, it brought tremendous love, and light, and enjoyment to my life.  He was here.  He was safe.  He was beautiful! and he was breastfeeding!   It was a super easy birth.  No complications, and I was overwhelmed by the love that I had for this little stranger that was placed onto my chest.  This blast of happiness was very short lived because we still had to figure out how we were to attend the funeral of my SIL  within 48 hours.   All my emotions came back tenfold as reality sank in again.

The service was beautiful.  There was so much love for her.  And so much heartbreak.  I held on to my baby boy with all my heart.  He was the only thing that was keeping me grounded at this time.   For the next couple weeks, my mental monster toyed with my emotions to every extreme. Insane happiness, spiraling grief, or raging anger.  

My mental monster would not let me accept that everything with my son was great.  There was still an ongoing voice telling me to enjoy Paxton while I can.  It would be any time, and he would be gone.  If not him, then it would be Lexi.  I would not leave Paxton alone anywhere.  I would not let Lexi near him unless I was within fingers reach, because i would never forgive myself if Lexi was the cause of his death.  Lexi was also to be in the same room as me at all times because someone was going to sneak in the front door and try and take it.

It did not matter how much proof that reality offered that everything was fine.  I was looking at the world as a dangerous place because of this filter of fear this Mental Monster kept in front of me at all times.

8 weeks PP, at my checkup, I finally asked my doctor is there was such a thing as Post Partum rage.  We talked about PP Anxiety, and what it is, and who it affects, and what can be done about it.  I was placed on anti-anxiety meds, and after some trial and error, I finally feel like I can almost function normally.

Paxton is now a year old, and I still fight Anxiety attacks on a daily basis.  I still worry all the time that something could happen to any of my kids, or even my husband,  But now that I have medications, and an amazing support system with my family, and a Postpartum support group, I feel like I can manage it.  Some days, I need to put a lot of focus into what reality is, and what the Mental Monster filter is trying to tell me.  I have to go over facts to myself about how everyone is healthy and safe.

I have no idea why I decided to type all this out.  But I guess I could say that no matter now dark and bottomless your hole may seem, you can see the light again, and you may realize that you are really just sitting on your bed, and the entire pit is just made up.

The Ups and Downs of 2015.

I am so ready for 2015 to be over.  We had so many great memories happen this year, but also way too many hard times.  Just a quick overview of everything that has happened this last year.  It was definitely a tough one!

This actually started in 2014, when I found out I was pregnant, and in December, I found out it was a little Boy!  We picked the name Paxton!  The placenta was anterior, and it was a rare occasion that I was able to feel him move.  Because of this, and anxiety setting in early, I never really felt a bond with him.  In fact, a good majority of the pregnancy, I was in denial he was coming.  It was so easy to get pregnant this round, that I kept waiting for something bad to happen, whether it be a massive birth defect, or to find out he passed away in utero.  But everything went fine, besides my horrible morning sickness, and the Prodromal Labor in the final weeks.  Good news, My liver tumor was unaffected this round!



Last February, while my family was in Vegas, my baby brother, Josh, proposed to an amazing woman!  Although this was very much a given that they were getting married (after all, Shaye already was planning the wedding, and had the Temple booked) It was still amazing to see it happen!


Unfortunately, the good news doesnt stay good.  After a very hard decision, my baby sister, and her husband decided to end their marriage.  It has been very hard on my poor sister, but I do know it was for the best.  Just so hard to see any marriage end.






In March, Jared's family welcomed a beautiful baby girl! (Congrats Richard and Natalie!)  Sienna was born on March 10th.




In April, my worst nightmare happened.  Alexia got infected with Hand Foot and Mouth Disease.  I guess she had a new, uncommon, strand.  Instead of it just being around the mouth, it actually caused cold sores all in her mouth, and up and down her throat.  The sores got so bad that she was unable to open her mouth, eat, or drink.  She got extremely dehydrated, and had to stay in the hospital for a day to get fluids.  I have never seen her so sick, or in so much pain!  It was a total nightmare, and I was terrified she was not going to survive it.  Luckily, we were able to finally get some meds and water down her, and after a couple weeks of horror, she finally was better.



Soon after Lexi got better, we got some terrible news about Jared's sister Jamie.  She had been fighting Breast Cancer for a few years now, but due to some massive headaches, she had to go to the ER.  While there, they found multiple tumors in her brain.  There was nothing really they could do.  They gave Jamie two options.  The first was incredibly painful radiation, which would give her maybe 6 months to live.  The other option was nothing, and she would most likely pass in the next couple weeks.  Unfortunately, even with doing Radiation, she lost her battle on May 15th.
Jamie's Death has been one of the hardest things for my family to deal with.  I feel like I failed her, because I couldn't be there for her in her final days.



As guilty as I felt about it, we had an amazing day 3 days later!  Paxton was born!!!!  You can read
his Birth Story for more details :)



In June, I was able to be a part of my baby brother's wedding!   Yes, I cried the entire ceremony, but it was incredible!  I am so very happy for Josh and Shaye, and so happy I was a part of start of their forever after!  Love these two!!!



This year, Grandpa Burton turned 80 years old!!!!   To celebrate, the entire family joined together for a "roast and toast"  It was so neat to be able to listen to all the stories about him, and to admire how much he has done, and continues to do every day!!!



We also got to celebrate Lexi turning 4 years old this year!  This year we did a Dragon (Toothless) Themed party.  After cake, root beer floats, and presents, we went swimming!



August 31st, Declynn May was born!  Although it started off as a perfect labor for my baby sister, at the end it got really scary, and she had to have an emergency c-section to get our Ducky out!  Everyone was ok, Declynn had to be on O2 for a few days, but in the end it all turned out well.  This day was one of the most terrifying and amazing days I have ever had!  Michelle is an amazing mommy, and with Evan by her side, Declynn will turn out pretty amazing!



Early November, my older brother, Jason, proposed to his girlfriend!   They have been together for a couple of years now, and she is an amazing woman!  Can not wait to welcome her to the family!!!



Lexi started taking Dance Classes this year!  We started her out in a Hip Hop Class.  All of her classmates were a couple years older than her, and also more advanced, so it was a bit hard on her, but she still did fantastic!!!!!  She danced to the chipmunk's Witch Doctor for her Halloween recital, and was so cute in it!!!








In November, our Uncle Nolan had a very scary stroke.  When we first heard of the news, I was expecting the worse, that he wasn't going to make it, or if he does survive, he would be a shell of the Nolan we all know and love.  So very luckily, he is still the amazing man we know, and in some ways stronger than ever.  He was able to go home yesterday (on his birthday!) and can now finish his therapy at home with his amazing wife!  YAY!!!



Lexi also had her Christmas Recital this month, where she danced to "Let it Snow" in her own age group.  She did amazing, and looked super cute too!




Today we finished off the year by celebrating the birth of my amazing husband!   We dropped Paxton off at my Mom's house, and he, Lexi, and I went for Breakfast at Denny's, then over to see The Good Dinosaur at the theater.  Its almost 9 PM now, so we are going to celebrate the end of 2015, and look forward to a great 2016!!!!

Much love to everyone!!!!

Christmas Day! 2015

Christmas Day! 2015

Christmas Morning, I woke up to Lexi talking to herself in her bed.  I snuck my head in, and she was talking to herself, asking if Santa came, and that we were gonna go see lots of family today, and debating on waking Mom and Dad up.  It was too cute!!!  So I told her good morning, and just the excitement from her was amazing!!!   I love having kids on Christmas!!!

So we took the kids downstairs, and they got to go thru their stockings (well, Lexi did, then she "helped" Paxton thru his.)

After that, they were allowed to open their gifts from Santa.  Lexi got her puppy surprise that she has been asking everyone for!  It was sooo sweet!  She also got a Bike this year too! She was really excited to get that!

Paxton got a bunch of little toys, which is really good, because we didn't have many for him.  

After all the presents were unwrapped, we headed up to my parents house for breakfast and presents.  They got Lexi her helmet, and some other fun stuff, and Paxton got his Little People zoo. (Mommy was excited lol)  

We were also able to see my brother and sister before they headed off for the day, and also got to see my grandparents for a couple minutes!  Perfect timing!!!   

Afterwards, we went over to Grandpa Ken's house.  Lexi was so excited about her Robo Dino!  We had to try it out, and it was super cute!  He was exploring everywhere, and was hilarious when he got mad!  Paxton also loved watching the dinosaur in action!

Our final destination for the day was up to Grandma and Harley's house.  Was so nice to spend the night with them, and just let the kids play with toys!  Richard, Natalie and Sienna also joined for the last bit, and Paxton and Sienna loved opening presents together!

All together, we had an amazing Christmas!!! 

Now looking forward to 2016!!

Christmas Eve 2015

Getting Ready for Santa to come to town!

After we got home from Work, we finished getting everything ready for Santa's visit!   Alexia and Paxton made Ornaments for their grandparents, and Lexi helped Daddy make some cookies! Cookies turned out so yummy!!!!  We knew Santa would love it!  After cookies were in the oven, we opened our Christmas Eve box, which had new PJs and Slippers for both kids, Hot Cocoa, and Popcorn!  Kids got dressed, and ready for bed, and then we ate Pizza and watching Dennis the Menace Christmas.  Before bed, Lexi wrote a letter to Santa, and since it was Christoph's and Tina's last day, her and Paxton were able to give them a hug goodbye!   

Luckily, Lexi and Paxton fell asleep pretty easy tonight, now we just wait for the big guy to arrive!

Merry Christmas!

Aiden's Superhero Birthday

They got Silly String for the kids to be able to attack the super villians with


And they got Power Bouncers for training


And they were able to leap over buildings in a single bound


And of course, ending with a Pinata


Here some more pics!



Lexi and Paxton's cousin, Aiden, celebrated his 5th birthday today, and holy cow it was so fun!
His parents went all out with the super hero games, and capes and masks, and decorations!