June 2, 2012- Sister's Temple Day!
Today is an incredibly special day. My baby sister, Tessa, is going through the LDS
temple for the first time. She arranged
to go through the Salt Lake City temple so that I might be able to go. My nurse friend agreed to care for Jayson,
bless her heart, so that Mike and I could both go. Well… going to the temple was a big deal for
us. It had been a year since we had
been. I went once while I was pregnant
and had to have a special escort because I was afraid I might need to use the
bathroom or throw up in the middle of a session. So I didn’t go the rest of my pregnancy. Then we’ve had all of these problems with Jayson
so we haven’t been able to attend. Well
clearly the adversary does not like people to attend places that bring them
closer to God. We experienced this first
hand today after a crazy series of events:
- Jayson’s feeding machine went off at about 2 a.m. The past couple of weeks, Mike has been getting up in the middle of the night to take care of the feeds so that I didn’t have to go up and down the stairs with my injured knee in the middle of the night. Well, my knee was really improving so I figured this was a great time to take back my nightly responsibility of feeding the baby. I got down two stairs before I felt my knee slipping. I screamed for Mike and tried to get down one more stair. Nope, wasn’t happening. I was experiencing excruciating pain and was confused as to why. I felt it starting to dislocated and I stopped. It doesn’t hurt that bad when I actually dislocate it, so why did it hurt so bad this time??? I had no idea. But I couldn’t walk on it. I sat down on the stairs and waited 30 minutes and still couldn’t walk on it. Mike helped me get back to bed and I started freaking out wondering about the upcoming event. I decided to get some sleep and wake up early in the morning to see if I needed to go to the hospital. I had a difficult time sleeping and as soon as I stepped down on it in the morning, I KNEW we were going to the E.R. We hurried and got everyone ready, hoping that if we timed it right, I could still make it to the temple. We arrived at the hospital at 10:00 AM, and the ceremony was at 1:00. We were going to drop the baby off at my nurse friend’s home, but since we were short on time we decided Mike should drop me off at the hospital first, and then join me after he drops off Jayson. Well… half way to the hospital we realized we left Jayson’s monitor at home. So now the plan was to drop me off at the hospital, Mike would drive home and pick up the monitor, drop off the baby, and then join me at the hospital. It was so sad and humorous when we arrived at the hospital. We pulled up to the circle drive. Mike helped me into a wheelchair, but had to stay with the baby near the car. I was trying to wheel myself in which was difficult because it was uphill. I was laughing and crying at the same time because of the pain and the difficulty of getting inside. Mike sat there with tears in his eyes and said, “Babe, what am I supposed to do? I can’t just drop you off like this at the hospital?” I told him sometimes we gotta just put on our big kid pants and do what we gotta do. Today was one of those days. I checked in and Mike left. I told the check-in desk that I really was hoping to get to the temple for my sister’s ceremony at 1:00 PM. They got me right in! That’s the benefit of living in Utah. I saw a couple of doctors and they all concluded I dislocated my knee, it was back in place, but something was probably damaged in the process. I was given a referral to an orthopedic surgeon, a brace, a prescription for some pain pills and some crutches. I called Mike to let him know I was finished and he was just heading towards dropping the baby off. I told him to come get me instead. I hopped down this incredibly long hallway to get out, and a nurse sat and watched me struggle to get the door open and hop through it. I was so grateful to walk out the hospital door and see my hubby waiting for me. We dropped off Jayson, picked up my prescription, and zipped off to the temple. We were BARELY going to make it on time!!!
- Mike dropped me near the entrance to the temple and I hobbled in. I gave the man at my desk my temple recommend and he said, “Do you have a current one? This one expired two days ago.” My mind began racing. Was that even possible??? Had two years passed already? Did this man have any idea what we’ve been through the past few months??? How could we remember to check our recommends? I started crying instantly. The man tried to calm me down and took me to a special room to meet with another man. Mike came in and joined me. Everyone was so nice, but they informed us it would be unlikely that we would be able to join my sister for her ceremony. They made some phone calls, and nobody was home. Finally, they reached someone who could vouch for our worthiness to enter the temple. A couple of the men talked and deliberated. There are certain rules in the temple that can’t be bent or broken. This was one of those rules. Fortunately, because it was my sister and due to our extreme circumstances with Jayson, they agreed to make the exception of all exceptions. We dried our eyes and hurried on in to meet my family.
- When the ceremony ended, my family all went out to eat at Café Zuppas to celebrate. After a delightful dinner, I got a text message… Jayson had pulled out his NJ tube at my friend’s house. Sigh. We picked him up and rushed off to Primary Children’s Hospital. We had a much easier time getting him in to get his tube replaced this time. However, there was a resident doctor that placed the tube this time. Instead of 5-10 minutes, it took this man 45 minutes to place the tube. He had to keep pulling it out and putting it back in, pulling out the wire and putting it back in. Pumping Jayson’s insides full of barium and taking lots of continuous x-rays. I was about at my limit when it was finally in an acceptable place. Finally, we could go home and relax.
(This is the NJ tube in his intestines)
Despite all of the horrible trials of the day, things ended
well. And my sister had a beautiful
temple endowment ceremony. It was so
special being with my two sisters and my mom.
I’m so happy and proud of my sister for making this decision and making
covenants with our Heavenly Father to love and serve Him always. Even with all of the trials, today was a
beautiful day!
(My mom and two sisters)
June 3, 2012- Jayson's First Time Eating Baby Food!!!!
Jayson tried baby food for the first time today!! I recently got a phone call from a feeding
specialist telling me what to get and how to give it to Jayson. I finally felt comfortable, well almost,
trying out some food with Jayson. With
most kids, you try new foods with your baby and the riskiest thing that can
happen is that your child doesn’t like the food and spits it in your face. With Jayson, he could aspirate solid foods
into his lungs. That’s bad!!! I bought some bananas at the store and soaked
up 3 mls in a syringe. I got him
outfitted in a bright bib, and squirted the bananas onto the spoon. I wondered if he’d know what to do. As I brought the spoon to his mouth, he
opened up and I shoveled the bananas in.
His tongue went in and out as he tried to figure out what to do. As he pushed the bananas out, I shoveled them
back in. He seemed excited to open his
mouth for the next bite, so I assumed he liked them even though they mostly
ended up on his bib. Poor guy doesn’t
know what to do with the food in his mouth!
He was so cute and it seemed like he wanted more. Today was a big milestone! Solid foods were a big step in the right
direction!! I’m excited to see which
foods are his favorite!
June 5, 2012- Jayson's First Visit with the Feeding Therapist
Today was Jayson’s first visit with a feeding
specialist. Now that he’s able to begin
tasting foods and working on his swallowing, we need to work with someone who
can help us manage that. I took my
neighbor Shauna with me to this appointment (since I’m on crutches and there’s
no way I could get Jayson and all of his equipment to his appointment by
myself. We checked in and waited for our
doctor to come out and get us. When she
walked out, she walked right over to us and began talking to Jayson. I recognized her and she obviously knew
Jayson! She said she was so happy to see
us again. I worked up the courage to ask her where we knew her from, and she
reminded me that she was the one directing the last swallow study! I really liked her! I was so excited she was to be our feeding
specialist. Our appointments are an hour
long. We typically discuss issues and
updates on the child, give him a feeding and see how he does, I get coaching in
feeding him, and we talk about how we can continue to move forward to meet our
goals. Since today was the first
appointment, we didn’t get to the feeding part.
She told us some exciting news… she wanted us to increase his feeds to
about 5 mls of stage two baby food!
Awesome!!! I felt so blessed to
have yet another good doctor on our side.
She was also very nice and encouraging.
She commended me on my parenting skills and made me feel a little more
confident in all that I’m doing with Jayson!
June 6, 2012- Jayson's First Time Trying Rice Cereal
Jayson tried Rice Cereal for the first time tonight! He had a hard time keeping it in his mouth.
Haha He wasn’t so sure about the
texture. This time I just mixed it with
milk. I think next time I’ll mix it with
some baby food to see if he likes in more.
He definitely wore more cereal than he ate!
(Eww... not as good as the fruit I had the other day)
June 8, 2012- Tessa's Bridal Shower and Bachelorette Party!
Party time! Tonight
was Tessa’s bridal shower and Bachelorette Party! We held the Bridal Shower at Olive
Garden. And I was kind of a bad sister. With everything going on lately, I forgot to
call ahead to Olive Garden and make a reservation. I sent out the invites before I had the
reservation. I know, bad news. I didn’t realize I made this mistake until
5:30 PM. When I called, they said they
had two large parties coming in at 7:00 PM.
Bad, bad news. So I quickly threw
together some cheesy bridal shower games that nobody likes and decided that if
we all have to sit inside or outside and play them for an hour, oh well. I called ahead to a couple of friends who
were coming to inform them of my flakiness (like they were surprised) and asked
them to help me make the most of the situation!
To our surprise, Olive Garden somehow made room for us when we arrived. I’m still a little confused… there was one
reservation under my name, and another under Tessa’s name. It almost seems that someone assumed my
flakiness and called ahead FOR me.
Either way, we had reservations!
Tessa got lots of little naughties and nighties! We had funny waiters and had a great time
messing with them. One of them made
Tessa blush, a lot. He kept trying to
see what she got as her gifts and he’s make funny, yet inappropriate
comments. It was just the right amount
of naughty in a nice evening.
Afterward, the girls and I went outside to decorate Tessa’s
car for the night’s festivities. Only a
few of the ladies could go party that night, so we loaded up in one car and
headed to the Piano Bar! It was the
perfect location for some fun! It wasn’t
that busy and it was pretty low key. The
place was just ready for us to stir up some trouble! I brought my little bachelorette kit with
some handcuffs, dare cards, a garter, and a pink squirt gun. We spent most of the night squirting random
strangers with our squirt gun inconspicuously.
It seriously was a riot. We each
took a couple of dare cards and went around flirting with nerdy guys, giving
fake phone numbers, spelling out the letters in our fake names like a
cheerleader, etc. Great fun was had by
all! The pianists played our special
request and had Tessa and our clan dance on the pianos. Don’t worry, I just sat on the piano with my
bum leg and my crutches next to me! She
felt special and we all had an amazing time with way too many stories to tell,
or to not tell.
(Tessa slow dancing with our special friend. Man, was he special)
June 9, 2012- 10 Year Class Reunion!
Today was my 10 year Class Reunion. I’ve been looking forward to this day for
many months. I helped out with a couple
of things regarding the reunion, although I wished I could have done more. I was most excited to see NEW friends I have
made over the past ten years, especially over the past 6 months. There have been many friends from high school
I have kept in touch with over Facebook.
Many of them were more acquaintances rather than friends. But through all of the difficulties we’ve had
with Jayson, I have made many new friends.
These friends have thought about us, prayed for us, offered us advice,
cried with us and ached with us. I
wanted to hug these people, because they truly have lifted me up. I am so grateful for my new friendships.
I really wanted to take Jayson to my reunion. We had just gotten the okay to start taking
him places. He was healthy and the
weather was warm. I wanted to take my
sweet baby some place important with me and show him off, just like all normal
mommies with their babies. I also knew
Jayson has become an inspiration to many people and they would love to meet the
little guy. We decided not to commit to
the dinner because we’ve learned NOT to make commitments with Jayson. But we drove up to Brigham City to the
reunion. After walking the long distance
to the wrong place on my crutches, we got pointed in the right direction and
made it. Since we did not eat dinner, we
were forced into this small corner of outsiders who did not eat, but it was
probably a blessing. We didn’t have to be too close to people which was best
for Jayson. After the dinner and video,
we did some socializing. It was so much
fun to see old friends and new ones. I
got a lot of hugs and was beaming as I showed off my adorable, inspirational
little boy. Today was a great day!
June 13-15, 2012- Work Retreat, New Nanny and Work Drama
Wow. In many ways I
want to forget the past couple of days, but they were monumental in many
ways. My employer has been very flexible
with me and my situation over the past couple of months. I have still been working, and trying to put
in full-time hours. The hours I’m
lacking I must make up over the summer.
I was given a lot of pressure to attend this three-day work retreat in
Park City. I felt very uncomfortable
about it all. I didn’t really have
anyone to leave Jayson with on Wednesday, and although I originally thought he
could stay with Mike on Thursday and Friday, Mike had to work on Thursday. I toyed with the idea of having my mom come
and watch him and I could drive back and forth each day, but my mom doesn’t
have experience with all of the machines.
I then thought I might take him with me each day and take someone with
me to help care for him while we were there.
But then, my boss strongly suggested I bring him and stay overnight for
all of these days and bring someone to help me.
But, who would I bring? Who would
stay with me in Park City for three days?
I spent some time thinking, without any success. A week before the retreat I had to get an MRI
of my knee. It was an incredibly painful
experience because it had to be strapped straight in the machine for 20
minutes. After about 5 minutes, I was
sweating, getting nauseas, and nearly in tears.
I started singing songs, praying, and doing anything I could think of to
get through it. I decided distraction
might help, so instead of thinking and praying about my knee, I decided to
think and pray about what to do about the retreat. Suddenly, a girl’s name came to mind. She has been one of my young women in my
church and recently graduated. I
remembered reading on Facebook that she graduated high school with her
CNA. I knew she was responsible. I thought I remembered something on Facebook
recently that said she was looking for a job.
Maybe she could be my nanny??
Maybe this retreat was the perfect opportunity to train her and see if
she would work well as Jayson’s nanny??
I felt so good about it!
I gave Shelby a call and she graciously accepted. She learned everything so quickly, and didn’t
need a lot of help or support. We had
two adjoining hotel rooms, one for working where my coworkers were staying, and
one for Jayson, Shelby and me. While I
was working, Jayson was just in the room next to me. I could slip over to check on him and give
him his medicine. It was much more ideal
than I imagined. I loved watching Shelby
with Jayson. It’s like she loved him
instantly and she love playing with him and making him happy. She did his exercises with him, fed him
through his feeding machine, watched his oxygen levels and heart rate. She made me feel comfortable leaving my son
for the first time. I knew it was the
right match. It was perfect.
My work retreat was really difficult for me. Even with Shelby, it was difficult for me to
leave my son, even in the room next door, and work all day long. We worked more or less 10 hour days, off and
on from 9:00 AM-9:00 PM. It was also
emotional and heated sometimes. We had a
new team, and we were just learning to work together. There are some strong personalities in the
group, mine included, and it was difficult to work through. I also was told by my boss it was time for me
to step up. I had flexibility before,
but it was time I figured out my life and moved forward. Easier said than done.
June 14, 2012- Happy 4th Anniversary to Us!!!
June 14th is our anniversary and we celebrated
our fourth anniversary apart this year.
I was working in Park City and Mike was working until 11:00 PM in
Lehi. Good times! But we did a little celebrating over the
weekend. I got an opportunity to sneak
away and drive for one of the first times since I got injured over the our
neighborhood Harmons. I got Big Daddy
pizza (also to celebrate Father’s Day) and 14 balloons for the 14th
of June. Tied to each balloon I had a
reason for why I loved him. When I got
home I told him to go outside to take the dog out. I brought all of the balloons inside and he
was surprised when he came in. I also
made him this framed picture in which we can write reasons why we love each
other. Lastly, I gave him a cook
Skyscraper watch my sister picked up for me to give him. It was simple, but a nice little
celebration. Mike got me flowers and the
most amazing necklace. It’s sterling
silver and has two hearts linked together.
He says that now I can wear his and Jayson’s hearts around with me
everywhere I go. I sure love that
man! We’ve been through a lot in just
four years, but I’m so glad we have each other.
I look forward to an eternity more!
June 17, 2012- Happy First Father's Day Mikey!
Happy first father’s day to Mikey! With my bum leg, I couldn’t really get around
to go buy him a lot of awesomeness! So
my sister did some shopping for me.
Jayson and I gave Daddy a grill cook book! We also made him a card with Jayson’s picture
on it and his hand and footprints. I
took some cute pictures and printed them off and put them in a I Love Daddy
frame I bought weeks ago. He had a
special day!
June 22, 2012- Jayson gets an MRI
Jayson got his MRI today.
I was a nervous wreck since he had to be put under anesthesia to get the
MRI and there are a lot of risks for babies under the age of 1 to get put
under. I was so sick to my stomach and
decided, hey, who am I to mess with tradition-- I had to go purge in the
hospital bathroom. We carried our little
man into a room next to the MRI room, where they would put on a gas mask,
insert the IV, and start the anesthesia.
As Jayson started to fall asleep with the gas, we stepped out. Mike and I grabbed some food and waited in
the waiting room. It wasn’t too long
until they came and got us and we were reunited with our sweet boy. It was refreshing to see he was healthy and
well when waking up, and to hear we could take him home soon. We started him on some feeds to see if he’d
tolerate them, and then we were on our way.
We took him home and snuggled him the rest of the day.
June 23, 2012- Jayson's First Time at the Zoo!
Today was Jayson’s first time at the zoo!!! He recovered well from his MRI and Mike had a
work party for Discount Tire at the Hogle Zoo.
They were renting out the whole zoo, so we figured there would be less
germs. Now was a great time to take him.
Seriously, today was one of my favorite days of all
time. Jayson LOVED the zoo! He looked right and left, up and down. He focused on animals walking or swimming
by. It was the best therapy for
him! And he smiled and giggled the
entire time! We took a ride on the
train and he just shrieked the whole time we were on it! My heart has seriously never felt so
happy. I thought my heart would just
burst it was so full! He rode the
carousel and we watched the bird show.
It was a short trip, but a perfect trip to the zoo. If only I wasn’t having knee surgery… we
would go to the zoo every week!!!
On our way home, we noticed a lot of people sitting on the side of the road... waiting for fireworks! We hurried and pulled off and found a spot to watch the bright explosions in the sky. Jayson thought they were the coolest!!! He didn't seem to startle with the loud ones and he was so focused on them. It was seriously the funnest thing in the world watching his face!
June 28, 2012- Jayson's 6 Month Pictures and Meeting Great Grandma
Today Jayson got his 6 month pictures taken at Kiddie Kandids! It was such a fun experience to dress him up, move him around in different poses and know they were snapping the cutest pictures in the world! It was so funny because Jayson fell asleep in the middle of his photo shoot, but it actually ended up being adorable! Check them out:
Later that night, after taking pictures, we drove to Logan for Tessa's wedding. We went to my Dad's house first to visit my grandmother! She traveled with my aunt, cousin and her son all the way from Arizona. I absolutely love my grandma! She is so special to me and I was so incredibly excited that Jayson got to meet his great grandma. She's been praying so hard for him and has been so interested in his journey.
(Jayson rolling. Way to go Little Man!)
June 29, 2012- Tessa's Wedding
My sister married her best friend today! It was a monumental moment for our family
because it was the first time we traveled and stayed overnight so far away from
Primary Children’s. But there was no way
we were going to miss my sister’s wedding!!!
Jayson was the ring bearer, and looked So. Incredibly. Adorable. He was wearing a cute suit with a purple
tie. I seriously almost died every time
I looked at him.
We arrived at Castle Manor to set up in the afternoon. I was planning on being Jayson’s guardian and
keeping any and all people away from him during the entire wedding. Instead, the opposite happened. There was so much to be done as the sister of
the bride, I basically passed him off to my dad and step-mom and said to find
Mike if they needed something! Mike was
running errands, setting things up, finding people, etc. My main job… keep the bride happy and keep
her from crying! As in most weddings,
there are many things that don’t go exactly perfectly right. And some things just go wrong. I was trying to stay on top of those things,
and fix the things that weren’t going right.
There was a little drama involving family and friends I had to cool over. The wind kept blowing things down. Minor details hadn’t been worked out. But all of those things didn’t matter. The ceremony was beautiful and perfect. My sister looked beyond gorgeous and I
couldn’t help but bawl my eyes out watching her husband stare at her as she
walked down the aisle. I also cried
watching my hubby carry Jayson down the aisle with the rings. I wasn’t sure at some times that Jayson would
be with us to see this day. I was so
grateful he was.
I had fun jumping in pictures, meeting people and showing
off my little man in his cute suit during the reception. When it came time to cut the cake, Tessa
asked me if I checked on the car.
Crap. I hadn’t been checking on
the car to make sure it didn’t get trashed.
Her husband mentioned he knew it already got decorated/destroyed by his
friends. Tessa was nearly in tears. That was one thing that was so important to
her. She wanted to be happy to drive
away in their car, not embarrassed. Mike
and I went to check it out. Man… no
bueno. There were disguisting and
tasteless comments written all over the car.
I visualized my sister’s face when she would see it… she would have been
in tears and it could have ruined her day.
I grabbed my brother, a groomsman, and Kraig’s sister, a bridesmaid, and
Mike and I headed to the car wash. We
washed off all of the nasty comments, as well as the oreos and silly string,
and rushed back to the reception. We
decorated the car using our window markers in a way that would make her
smile. I felt good about our secret
mission!
At the end of the night we released lanterns into the sky
and Tessa and Kraig took off as Mr. and Mrs. Williams. It was a beautiful day!!! In fact, the happiest occasion of 2012. Mike and I took Jayson to my moms. He started having many more episodes again
that night. I was happy he was able to enjoy
the day outside and that he was well through the ceremony and reception. Now to figure out what to do about these
episodes…
(Lanterns)
July 2-5, 2012- Jayson's 72 Hour EEG
MRI down, onto the EEG.
An Ambulatory EEG service came to our home on July 2nd to set
up an EEG. We’d had an EEG before and
two sleep studies, so I wasn’t expecting this to be a big deal. Little did I know that a private company does
things differently. They used a
different adhesive, which Jayson had to have been allergic to. He screamed like he never has before as she
put on each and every one of the sensors.
As she put them on, she seemed to push so hard. And then she used this drier, with a pointed end. How did that feel touching his head? I’m assuming not good. It was an awful hour and a half that I held my
screaming baby boy. And afterward, he
seemed so uncomfortable. For three and a
half solid days he was uncomfortable.
Sleeping was difficult. He
wouldn’t play. He cried a lot. He kept grabbing at this head. It seriously broke my heart.
His troubled demeanor instigated lots of episodes, which is
what we wanted. He had 56 episodes to be
exact. It was seriously the roughest
three days of my life. They had a video
camera set up and we’d spend most of our time near that camera so his episodes
would be on tape. On July 4th,
however, we went out to celebrate the best that we could. My poor little boy needed out of the house
and some distraction. I really wanted to
take him to a parade!! And after a rough
night, I was relieved to find a parade that started in West Jordan at 10
instead of 8. Little did I know, it was
incredibly HOT at 10:00 AM!!! By the
time we loaded up Jayson, his oxygen, his feeding machine, his monitor, his EEG
machine, and normal baby items, it was about 10:45 before we arrived. We only stayed about 40 minutes because
Jayson was so uncomfortable. Yes, the
parade was a distraction, but his head was still bothering him AND he was
soaking in sweat. We packed him back up
and got in the car to go find a place to eat lunch. We decided it would be fun to eat at Café
Rio. Jayson enjoyed the A/C and fell
asleep as Mike and I enjoyed a nice lunch.
Afterward, we found the celebration in a park for West Jordan and pushed
Jayson around in the stroller for a few minutes. Again, it was really hot so we came back home
and took a nice nap in our cool house!
In the evening, we saw some of our neighbors were doing fireworks so we
took Jayson outside to enjoy them. He
really loved watching them, but he started having more episodes so we went
home. Today wasn’t our favorite 4th
of July. And to be honest, we didn’t
think much about patriotism or America.
But it was our first 4th of July with our boy, and that made
it special.
(Soooo happy those sensors are off of his head)
(Showing off his cute 4th of July outfit)
July 5, 2012 Scoped, Again
Today we had our ENT appointment in the afternoon. I was looking forward to it because Jayson
had been desaturating a LOT lately. I
was interested in what he had to say.
Well, the doctor decided to scope him again, while awake. Poor baby.
It was awful, but the doctor said things looked pretty good. He doesn’t think the airway is the reason for
the desats. What now?
July 2, 2012 &
July 7, 2012- My Nephew's Death and the Funeral
I don’t know that I’ve ever been through a more shocking and
horrific event. I still cannot even
believe that my nephew is gone. He’s
gone. So quickly. He just got back from the service a couple of
months ago and I haven’t even gotten to see him yet. And now he’s gone. He was just at my sister’s house, left to
drive home, flipped his car and now he’s gone.
His friend in the car survived and even called Jonathan. Jonathan and Angie left to go meet them at the
site and figure out the damage, not suspecting any serious injuries since his
friend called and said they’re banged up but fine. The kids stayed at home with Shayla. When they arrived they discovered that Kelton
was still trapped in the car and had weak pulses. The emergency vehicles had arrived and they
were calling in life flight. Meanwhile,
Angie had called me a couple of times with updates, still not too
concerned. Instead, she joked about
having three life-flights in the same family in a year and how it was bad
luck!! I was not expecting the next
phone call I received from my mother… he was gone. I was shocked. I was horrified. I was heartbroken for my poor sister and
Jonathan. How could this happen???? How could this happen to our family???? How could they survive after losing a son???? I just sat and screamed at the top of my
lungs for minutes. I had to let out all
of the fear, sadness, frustration and anger.
I just screamed. But it didn’t
help or make me feel better. My heart
still hurt. It hurt because Kelton was
gone and I hadn’t seen him since before he was in the service. It hurt because my sister’s heart and
Jonathan’s heart would never be whole again.
It hurt because my sweet nieces and nephews would never see their
brother again in this life. It hurt
because I realized our family would be burying someone we loved. It hurt because I was tired of
heartache.
Mike and I were very nervous to travel to St. Anthony, Idaho
where the funeral would be held. But it
was non-negotiable. I would be there for
my sister and her family. We packed up
all of our medical equipment, our suitcases and our dog and made the 6 hour
drive. The funeral was beautiful, funny
and heartwrenching, all at the same time.
Someone so young should never die.
My nephew should never die. Angie
was having a difficult time, as any mother would. Jonathan was trying to hold it together, but
was failing miserably. The kids looked
confused, sad, and troubled. They didn’t
want to be there. Kelton’s brother Tate
and his sister Kia spoke, and it literally ripped my heart out. Jon spoke too, and he could hardly collect
his thoughts. Mike played guitar, and it
was a beautiful song by Avenged Sevenfold.
He nailed it, and I felt like KJ was there, rocking alongside him. It was a terrible, yet beautiful day. The guns shot off at the grave sight, and
Angie and Jonathan each got a flag. We
enjoyed our time as a family during the luncheon, and then Mike and I headed
with Jayson to our hotel in Pocatello.
The following day, we went back to Rockland to pick up Maya and to spend
time with the family. It was a nice day,
but a hard day. The family was coping by
sharing many stories, photos and videos of Kelton. All of those things just made my heart ache
and made me nauseas. How would my family
get through this? How would Angie and
Jonathan continue without their son? How
would their family ever feel whole again?
These are questions I still have.
Kelton died due to a broken neck. He had just left Angie and Jonathan’s house,
heading back to his apartment in Pocatello.
Jonathan had just given Kelton his brother’s bass guitar (Jonathan’s
brother also died a couple of years ago) and asked him to tune it up. He left and said, “Sure thing Pops.” Ironically, when Jonathan pulled up to the
scene of the accident, he first saw the bass guitar… with its neck
snapped. He picked it up, and headed to
where his son was, trapped in the car… also with his neck broken. There’s a great amount of symbolism in this
tragic story, with some spiritual details involved as well. I’m hoping that God continues to provide
peace and comfort to my family as they figure out how to pick up the broken
pieces of their hearts and carry on.
At the hotel, we decided to make the most of our time away and time together. We bought Jayson a little floating raft and got him in the pool. He loves the bath and he loves the pool too! It was so much fun!
July 12, 2012- Knee Surgery and a Job Interview
I have never been more anxious in my life!!! Knee surgery is today! I’ve had surgery for endometriosis before,
but somehow I knew this was going to be worse.
And today was crazy… Mike has his job interview this morning during the
exact time of my surgery. So, my mom is
taking me to the hospital, Mike is going to Lehi for his interview, and Shelby
is watching Jayson. Not the most ideal
situation, but we’ve learned to roll with the punches.
I decorated the house early this morning for Mike. I made many 3x5 cards with inspirational and
funny sayings to get him pumped for his job interview. The most inspirational, I’m sure, was the one
that said, “When you get this new job, you can get a new Subi!!! (Subaru)” He left all excited to get his dream job, and
my mom and I left all anxious about getting my knee sliced open.
The surgery went well.
There was not any scar tissue or additional damage. I had a distal realignment in which my knee
cap was moved from its permanent place on the side of my knee to its rightful
place in the center of the knee. The
patellar tendon was tightened and two screws were put in place. I did fairly well in my room during
recovery. The nurses were impressed with
how quickly and easily I was able to get up with the walker and get to the
bathroom. I was really, really sick from
the medicine. And the anti-nausea
medicine made me tired and more nauseas.
I hardly slept through the night because I was so sick, and finally a
nurse in the early morning gave me a shot of a new anti-nausea medicine. It was amazing!! I felt much better.
Over the next few days I relied heavily on pain pills and
anti-nausea medicine. I was confined to
bedrest with a special knee machine that moved my knee by bending and
straightening it. I also had an ice
machine for my knee. I had Mike to help
me with Jayson over the weekend and my mom came back at the beginning of the
week. She is still recovering from a
heart attack so it was difficult for her to go up and down the stairs so many
times to take care of me and Jayson. We
also had the bishop’s wife in the ward who came over basically every day for
nearly two weeks. I love her. She helped me bathe Jayson, clean my house,
she made meals, she ran errands, and she took me to work and doctor
appointments. I could tell almost
instantly after surgery that it may have been a mistake to get surgery at this
time in my life. Yes, I was in
pain. Yes, my knee was unstable and
would dislocate easily. But, how was I
supposed to recover from surgery, work full time, and take care of a special
needs child? I had no idea.
(Below: Jayson and I blowing bubbles together. It was a special bonding moment)
(My knee 2 weeks later)
July 17, 2012- Mike's New Job!
BEST. NEWS. EVER!!!!!!!
Mike got the job!!!!!! He really
had to work for it too!!! He had a
second interview yesterday, and there was tough competition! His boss said he wasn’t totally on top of his
game during his first interview, but he sealed the deal with his presentation
he had to give. He prepared so
hard! We fasted and prayed! He wanted this job so much! He loved his work, his employer, his
colleagues, everything. It was
perfect. And he got it. And now he has a salary position, paid time
off, vacation hours, benefits, opportunities to travel and even more self
confidence! One of the biggest
blessings--- the health insurance is the EXACT company and plan Jayson is
currently on, so it’s a seamless transfer.
No pre-existing condition. No
wait period. Nothing. Our Heavenly Father is watching over our
little family, and I can see some good things coming… starting with me dropping
to part time in my own job. YAY Mikey!!! Congratulations!!!
July 18, 2012- Jayson's GI Doctor Appointment to discuss Surgery
Today was Jayson’s GI doctor appointment we had been waiting
3 months for!! I definitely did not feel
I was in a condition to go to Primary Childrens for a doctor appointment, but I
had no choice. This was such an
important appointment. We were going to
discuss a surgery for Jayson to place his G-tube, and possibly a second surgery
to place a nissen. I had to go.
Shelby was coming with us to the appointment to help with
Jayson, and my mom could help me. She
helped load Jayson into my mom’s van and get me in the car. It was difficult to say the least. The entire parking lot at Primary Children’s
was FULL. Every spot. My mom dropped us off near the elevator, but
it was a long walk. And an even longer
walk once we got inside. I thought I
would pass out from the pain. Shelby
pushed the baby stroller; I just had to hop along. I was sweating from the pain and we even went
to the wrong desk. When we finally got
where we needed to go, I was incredibly nauseas. We got into the doctor who was really behind
and the nutritionist looked at Jayson’s height, weight and food intake. He was doing fabulous!!! Definitely not failure to thrive anymore! The
doctor came in and said amazing things to calm my heart. I was so worried about making a decision
about whether we should do a nissen or not.
It’s permanent and irreversible.
The doctor said we’re going to let the data decide. Jayson would have an upper GI and a PH Probe
Study. These two tests would tell us the
severity of his reflux and would let us know if he needed a nissen. We planned to have the surgery the third week
in August and to follow up in a couple of weeks. I felt like I had ran two marathons by the
time we got home, but I was glad we had a good doctor visit.
July 19, 2012- Knee Problems
My knee is a mess.
Apparently it was bad for me to go to the doctor yesterday. My knee was way swollen with little
movement. I have to be on another week
of bed rest and use the leg machine for another week. Not fun. I've had a lot of help this week, which I am so appreciative of. My mom has stayed all week while Mike has been back to work, and Heather Bullough, the Bishop's wife, has been by nearly every day. I'm so blessed to have people who love and care about our family!
July 20, 2012- New Car & Work Drama
Mike has wanted a Subaru Legacy GT ever since I've met him. However, once we got a baby, we realized we needed a bigger vehicle to carry around Jayson and all of his baby stuff! Mike started looking at Subaru Outbacks with the turbo. He has looked at cars for month ever since he thought he might possibly get a full time job. They are expensive. Crazy expensive. Last night, I told Mike I wanted to take my time looking for a car and not rush into anything... unless... we found an amazing deal that seemed too good to be true. That night, he found a crazy good deal. Today he went and looked at it, took it to a shop, and he knew the business whereas it was in Lehi. It was a solid steal. My mom drove me and Jayson out to Lehi to check it out and give Mike our blessing. Mike was so excited to get his dream car after all of these years of hard work. It is a Pearly white 1995 Subaru Outback XT.
Unfortunately, our new car buzz didn't last long. After a discouraging phone call, I'm furious, frustrated, shocked and disappointed.
Background: I used to work as a first grade Spanish teacher
and LOVED it. I have two master's
degrees in education. I left the
classroom a year ago when I was offered a position at the state level. It offered a lot of flexibility which
appealed to me since I had just discovered I was pregnant. I was told at the time I was hired that my job had the potential
to go PT and/or work from home.
Jan-May: I have had
to take a lot of time off this year due to Jayson. My employers said they were flexible. I just needed to keep track of my hours and I
would just work through the summer to make up the hours I missed. I asked on two occasions to take FMLA leave
of absence and I was told it would be best for all involved if I could just work whenever I could, and I could make up any hours I owe during the summer. When I became concerned about making them all
up I again talked about leave in May. I was told I would have a year to make up my hours and I
could have whatever flexibility I needed. We were all hoping Jayson's medical situation was just temporary.
June: I was basically given
an ultimatum. It was time to step it up,
find a babysitter, and get on with my life. I was told all of my owed hours needed to be made up by end of the summer and I needed to decide ASAP if I was going to be going PT or staying
FT. It all depended on my hubbys job, so
I said I wouldn't know until mid-July. Regardless, I was told come August I would no longer have the opportunity to work from
home.
Tonight: I reported to my employer that I
am planning on changing to part time in August. I was tonight that if that was the decision I was to make, I may not be able to keep my job if I went part time.
"It would be too complicated to work out the details." Due to the stressful status of this time of year preparing for our big conference, I would have to wait until mid-late
August to find out if I have a job.
I'm so sad. I love my
job. I've worked so hard. I always thought I could have both-- a family
and my dream career. Now I have to
choose. Obviously my son comes first. And I don't know why things have to change like this so suddenly. So
sad right now. My world has changed so
quickly in 6 months. It's changed for
the better, but it's hard to adjust my dreams.
July 25, 2012- Test Results? Anyone? Anyone?
Yes, it’s the end of July.
No, I have not yet heard from a doctor regarding my son’s MRI and
EEG. Is It ridiculous? Yes!!!
I got a print out with the MRI results from the E.R. a couple of weeks
ago when we had to take Jayson. I’ve
left at least 6 messages with nurses in the neurology department. I’ve got one call back that said the
Physician’s Assistant would be calling me back.
I had an appointment in my planner on July 26th with a new
neurologist I scheduled 3 months ago and never cancelled. I always wondered if I’d want a third
opinion, and I was so glad I didn’t cancel it since I can’t get anyone to call
me back. I called today to verify my
appointment since I didn’t get a reminder call this week and the receptionist
said someone cancelled it!!! Apparently
I can’t get a third opinion. They said I
was a doctor-hopper. No. My first neurologist was an ass. End of story.
The second one was wonderful, but he doesn’t find it important to call
me back when my son is having multiple episodes every day and is desaturating
up to 100 times a night in oxygen. Yes,
100 times!!! The receptionist put me on
hold to talk to her boss. She came back
only to tell me her hands were tied and there was bureaucratics involved. Nice.
My son’s life is involved too. I
started crying and she said she’s put in one more final plea to my doctor
asking him to call me back. And
apparently that’s all I can do. I’ve
never felt so out of control in my life.
It’s my son’s well being and life involved here, and nobody else is too
concerned. I’m thinking about flipping
the switch and turning into that crazy mom.
I’m thinking about a sit-in in the doctor’s office until I can be
seen. However, I know that right now I
am well-respected in the medical community and doctors tend to listen to me
because I’m confident, intelligent, informed and level-headed. I will throw all of that out the window if I
lose my cool. So what will I do? I have no idea. I guess I’ll pray.
July 24, 2012 & July
26, 2012
Today is Mike’s 25th birthday!!! We had some birthday cake today and I gave
him his presents, but we did a lot of our celebrating on his day off on July 24th. It was difficult, because I couldn’t get to a
store to do any shopping. So I ordered a
lot of presents online to decorate his new office. But there were other little things I wanted
to get. So I came up with an idea… I thought of ten different things I wanted to
get him, or places I wanted to go. I
then created little clues. I made almost
a little scavenger hunt for him to go on, with Jayse and I in the car. He would get a clue, have to figure out where
to go and what to get there, I would take a picture of it, and then he’d move
on to the next clue. He was in essence
doing his own shopping while Jayse and I were in the car, but it was more fun
because of the clues. The whole family thought
it was a lot of fun!!
August 1, 2012- Knee Infection, EEG Results and MRI Results
Awesome. I have an
infection in my knee. I had a red spot
developing that worried me. My knee got
all hot and swollen and I finally left work early to get it checked out. Fortunately, the doctor didn’t seem to think
it was a blood clot. Instead he treated
me for an infection and gave me antibiotics.
I’m supposed to try and stay off it, elevate it and ice it. Right.
It’s the week before my busiest week of work for the whole year. Not good timing.
I got my EEG results back today. Apparently Jayson is not having
seizures. We have no idea what his
episodes are or what causes them. I got
the MRI results explained to me as well.
There were four findings:
- His head is misshaped. No surprise there.
- The MRI did not detect any Olfactory Bulbs. If they really aren’t there, apparently he can’t smell or taste.
- Myelin Delay- This is the white matter cushion around his brain. He does not have the same amount children his age should have. If there was missing white matter, that would mean cerebral palsy. But he has it, it’s just delayed. He can potentially catch up! Myelin delays cause mental and physical delays and disabilities, but we won’t really know what that means until many years down the road.
- C1 vertebrae is too tight around the brain stem. This is the top vertebrae. The Physician’s Assistant said that the doctors aren’t wanting to take immediate action at this time. They are wanting to take another MRI in six months and see if this is better or worse. There was not evidence of spinal fluid being pinched, so they’re thinking it can wait before seeing a neurosurgeon.
My feelings:
- I only feel partially relieved that my son is not having seizures. If he were having seizures, we would have a treatment plan. I know his episodes hurt him, and now they are just a mystery with no treatment plan.
- I think my son can smell and taste. I think he has olfactory bulbs. I just think they might be small or hidden. He may not taste and smell like a normal child, but I’ve seen him eat. I think he can taste!
- I’m not too worried about the myelin delay. It explains things a little. And I think it will help us further look into the underlying causes of his issues.
- I am very concerned about the C1 vertebrae issue. My momma intuition is kicking in here. This is going to be a problem. But unfortunately, I have to wait until August 31st to discuss any of this further with my neurologist.
August 2, 2012- Work Drama and Hospital Admit for PH Probe Study
After leaving work early yesterday for my knee infection,
and again today for my son’s hospital stay I got in trouble and yelled at. Apparently everyone is sick of my “personal issues”
and I shouldn't let my personal life interfere with my professional
life. Awesome. Everyone's right.
I suck. I somehow allow my
“personal issues” to consume my life. I
wish I could stay at work and not have a knee infection and not have to take my
son to the hospital. I’m sorry everyone's
tired of my personal issues. So am I. so
am I.
This was our first PLANNED admittance to the hospital! Jayson had to have a PH Probe study done to
determine the severity of his reflux. A
couple of weeks ago, he had an upper GI study in which he showed moderate to
high levels of reflux. This test will
monitor his reflux for 24 hours. He had
to go off of his reflux meds for three days and they pull out his NJ tube. They placed an NG tube in his stomach and
another tube that has two probes- one upper and one lower. They take an x-ray to check the probe
placement and then he can continue with his typical activities in the hospital
for 24 hours. They give him bolus feeds
instead of continuous feeds and they alternate apple juice and formula. Mike was off of work so we both hung out with
our cute little man. Mike left the
hospital for a couple of hours to help my boss and hopefully help her be less
mad at me and my “personal issues.” He’s
amazing. After 24 hours in the hospital,
they pulled out the probes and the NG and we had the NJ replaced. We were on our merry little way. I wish all hospital stays were this easy!!
(Below: My handsome man without tubes for a few minutes before they put them back in)
Jayson sat up on his own for the first time today at the hospital!!! He sat up, hunched over, for about 2 minutes on his own!! It was seriously the best! I am so proud of my little boy!!
August 6-10, 2012- Hard but Awesome Work Week and Life-Threatening Apnea Episode
This past week was our annual AUDII conference for dual
immersion teachers. It is a
killer!!! I worked during AUDII last
year, and I remember I was practically working around the clock. Last year was difficult because I was
pregnant, but I had no idea how I would do it this year with Jayson. I asked my niece months ago to come stay with
me and watch Jayson. That was before we
knew about all of Jayson’s medical problems.
But, she’s a smart girl and I thought she would do well and learn
everything quickly. I also thought it
would be quality bonding time for her and Jayson. My niece Shayla is 16 and she has been around
a lot of little kids.
All of the other Spanish team members got hotel rooms since
the conference was 50 minutes away in Layton.
I, however, was not given a hotel room.
Normally my employer has been accommodating of my special family
circumstances, but this time it was apparently unavoidable. I refused to be an hour drive away from Jayse and leave him
at home with my niece. We’ve had way too
many emergencies. I could work all day,
but I needed him to be at the conference hotel near me in case there were any
problems. This was not taken especially
well. However, it was also the best situation for work- if Jayson got a
clogged tube that my niece couldn’t unclog, I would have to leave the
conference to get home right away, even if I was in the middle of a
presentation. It made much more sense
for Jayson to be right there in case there was a problem. I could run over, fix it, and keep
going. I got permission to allow Jayson
to hang out in an empty hotel room during the day. It would have been better if we could have
just stayed the whole time. But, they
could not accommodate my family situation this time, even when there was a room
reserved for a colleague and myself to share.
Even when my roommate said it would have been fine to share a room with
me and Jayse and we could have brought in a cot for my niece. Even when my roommate said she lived two
miles away from the hotel and did not want to even stay there. Even when the room ended up being empty and
they had extra room to spare. Sigh. Sometimes you just can’t win. So we started out the week driving back and
forth to Layton, which is not an easy thing to do. It takes a lot of time and energy to pack up
Jayson and all of his medical equipment into the car, unload it from the car
and carry it all inside a hotel where he would stay while I worked. And doing all of that with a hurt knee and on
crutches is great fun. I thoroughly
enjoyed it.
I had two days with presentations early in the morning, so
my boss agreed to let me stay those nights.
It was even more difficult to load up all of his stuff to stay the
night! And I had to do all of this
without Mike’s help. I was exhausted
before I even started working. The
conference and presentations went well.
It was crazy and I was given some of my presentations to look at and
prepare for at nine o’clock the night before I had to present them. That is not my ideal way to prepare, but it
worked. For that reason, and the fact
Jayson struggled a lot to breath at night this week, I got very little
sleep. I slept about 2-3 ½ hours each
night. I think many of the teachers felt
like it was a good conference and that they got something out of it. I loved facilitating all day on
Thursday! I got to see familiar faces as
well as meet new teachers. I got to
answer their questions and hopefully lower their anxiety. It was a great day! At the end of the week, I finished with 72
hours!!! Definitely a crazy week! And my knee, leg and foot were HUGE. The swelling, movement and pain were not so
ideal. But I survived and conquered.
Also during this week Jayson had another terrible apnea
episode. Monday night when we were
driving home, his monitor started going off just a couple of blocks from my
house. I looked in my baby mirror and
could see Jayson was asleep and his cannula was in his mouth instead of his
nose. I figured we could make it until
we got home. I asked Shayla to read to me
what the monitor said. She said, “89,
84, 78, 72, 64” I started FREAKING out
and swerved off the road to the side. I
started yelling Jayson’s name, shaking his car seat and tapping his head. His oxygen was still in the sixties and no
response. I yelled for Shayla to get out
of the car, since I couldn’t get to him fast enough without my crutches. She jumped out and couldn’t get him to wake
either. She started tapping the bottom
of his feet, which she learned in CPR training at Girl’s Camp. It worked.
He started breathing, waking up and fussing again. I seriously thought my heart stopped that
day. He hasn’t had an apnea episode like
that in months. I was so shaken up to
realize that my little man is still fighting for his life every day, and that
with even the slightest neglect, he could be gone.
I don’t know that I’ve ever been happier to have a week end
in my life! Especially since it was one
of Mike’s busiest weeks at work as well, and then he had a wedding in St.
George so I saw him on Monday, and then we were on our own the rest of the
week. It’s crazy what you can do alone
when you have to. But I sure didn’t
enjoy it.
Life Just Got Really, Really Hard... Again
Have you ever been in the deep end of a swimming pool, just
doggie paddling? Have you tried to see
how long you could doggie paddle and at some point reached extreme
exhaustion? Have you ever contemplated
just letting yourself sink to the bottom instead of swimming to the side of the
pool and hopping out all because it seemed easier to give up? I have.
I feel like I cannot tread water any longer. There were times I was thrown a raft and felt
like I was safe for a few minutes. But
it’s almost harder to have that safety raft pulled out from under you than it would
have been to just keep swimming. I
thought there was hope I would be pulled to shore and forget I was ever
struggling. That hope is gone. I
don’t think life will ever be easy again.
I am starting to feel I might be doggie paddling for the rest of my
life, or even worse, I might sink to the bottom.
There have been crazy amounts of changes and new information in the month of August, and I seriously feel like I'm drowning. Someone through me a life raft... please. See the posts below for details:
August 14, 2012- Feeding Therapy and Bad Bad News
We went in to our feeding appointment on August 14th. We love our feeding specialist and our
appointments are so fun. I was a little
anxious about this appointment because it seemed to me like Jayson was
regressing with his eating. He appeared
to be aspirating nearly every feed, and he wasn’t tolerating much baby
food. Our specialist watched him eat and
saw him aspirate as he coughed. However,
she was convinced he was coughing from reflux and not from aspiration. She kept feeding him, and he coughed a couple
of more times. She told me to go ahead
and keep feeding even if he coughs. She
thought his coughs were evidence of reflux and not aspiration. As much as I loved this doctor, I didn’t feel
right about it. I asked her how we will
know if he’s aspirating? And isn’t it
dangerous to aspirate baby food? She
looked in the computer to see if we had a recent chest x-ray. She started reading an analysis out loud from
a recent x-ray. I asked when we had a
chest x-ray??? She said it was from the
PH probe study to ensure the probe was placed in the correct spot. Right.
I remembered. Then what she said
really complicated things. “It says
Jayson has mild atelectasis. And
possibly chronic pulmonary disease.”
What?????? Jayson’s lungs have
always been clear!!! Except for RSV and
pneumonia, his lungs have been great!
And the pulmonologist in May said he didn’t suffer any permanent damage
from RSV. And now, he potentially has
chronic lung disease??? How is this
possible?? And I knew atelectasis was
bad. They were fearful of atelectasis the first two times Jayson was in the
hospital. Atelectasis is the collapse of
part of the lung. It’s very no
bueno. And it very well could explain
why throughout the summer Jayson had many nights of CRAZY desaturation. One night it was over 100 times!!! And when I called the doctors and nurses and
left messages, only one called me back and talked with me about it. And do you know what she said? “Call me if it
gets worse.” Seriously??? It WAS
worse!!! Our son’s oxygen saturation
dropped over 100 times in one night!!!
And you’re not worried??? Now we
possibly knew why. And you can’t cure
atelectasis, especially if it isn’t caused by an acute illness. So what caused Jayson’s atelectasis? Aspiration.
Aspiration of saliva/secretions, reflux and/or baby food. But it is very difficult and sometimes
impossible to know which is the problem.
I seriously felt like a huge bomb was just dropped on our heads. Wow.
This changed everything. We were
planning to have surgery the following week.
That most likely won’t happen. It
will need to be postponed until we figure this out. Our feeding specialist said she has meetings
in which many doctors and specialists get together and discuss patients. They pick complicated cases and put their heads
together to problem solve and figure out what is going on. She wanted to select Jayson as her
patient. That will be very
powerful!!! But now what do I do with
his feeds? My feeding specialist
suggested I keep feeding him. She didn’t
think he was aspirating food. However,
that is one risk I was not willing to take.
Poor Jayse… we’re taking a step back for now until we figure this out.
August 22, 2012- A Death Sentence? Please God No.
Today, everything changed.
The world stopped. People
disappeared. Time stood still. Today I was helpless. I have spent the last 6 months dedicating my
life to protecting my son. Today I
learned I can’t protect him from everything.
My sister called me this morning. I had informed her about the atelectasis, and
she also felt overwhelmed by yet another new piece of information. She wanted to help, so she put every one of
Jayson’s diagnosis/symptoms in google and clicked on search. I’ve done many versions of that, but not
recently. She got one specific
response—Marshall-Smith Syndrome. She
told me the symptoms and I nodded my head.
Mmm-hmm… yep…has it… yes… wow… That sounds like it Tess! I sounded almost happy that we found
something worth looking into. Tessa
didn’t sound so happy. She hesitated and
said, “Well, there’s two things we don’t know if he has, and they’re the main
determining factors. First, we don’t
know his bone density. Kids with this
syndrome have bones that are more dense than other children’s their age. And, Jayson doesn’t have teeth yet so we
don’t know about his teeth.” I
interrupted, “Actually, Jayse does have a tooth. It’s crazy though, because it’s totally in
the wrong place and it’s coming out the front of his mouth.” “Shit.”
And then it was silent. An obscenity
and then silence. I suddenly realized
this was a syndrome I did not want my son to have. She said, “Tris, that’s how the teeth are for
kids with this syndrome. And it’s not
good, Tris. It’s not good.” I noticed I had been holding my breath. This is the first time I’ve heard or learned
of a syndrome that encompassed so much of what Jayson suffers from. BUT… it couldn’t be. I was going to drive right home, look it up,
and prove it couldn’t be.
I rushed home and pulled out my laptop. Stupid internet was down!!! No!!! I had to look it up. Right now. I used my phone and googled. And read.
And held my breath again, for a really, really long time. I felt that instead of words and symptoms I
was reading Jayson, Jayson, Jayson, Jayson.
Oh no. Swallowing issues and
feeding tubes, apnea, laryngomalacia or tracheomalacia, seizures, developmental
delay, reflux, neurological issues, eyes spread apart, flat bridge on the nose,
small nasal passages, small airway, ears set lower on the head and crumpled,
misshaped head, low muscle tone, teeth out the front of the gums and in random
order and places, severe respiratory distress, frequent illnesses and
infections, frequent ear infections, atelectasis and chronic lung disease. And after the symptoms were all listed… the
prognosis—most die within infancy. The eldest
has lived to be 8 years old. No. This isn’t Jayson. It can’t be.
Although I tried to shake it, I couldn’t get rid of the eerie feeling I
felt, almost like I was reading Jayson’s hospital charts and that
Marshall-Smith Syndrome was listed. I
couldn’t tell if it was because I suddenly felt overcome with terror-like fear,
or if it was meant to be.
I had to put this in the back of my mind for a few
hours. It was time for Jayson’s GI
doctor’s appointment. My nanny and I
packed Jayson up and headed to Primary Children’s. We met with the nutritionist to discover our
18.5 lb chubalub was getting TOO big!!!
Best news I had heard in a long time!
We are cutting down on his feeds an hour. We then talked with the GI doctor. She said the Upper GI test showed
moderate-good amounts of reflux.
However, the PH probe study showed almost NO reflux. She was puzzled and didn’t know what to
think. I brought up the chest x-ray and
voiced my concern about the atelectasis.
I wanted to know if he was aspirating reflux or baby food, or if it
could even be his own saliva. She said
she looked at it and was concerned too.
She said there’s no real way of knowing what he’s refluxing, and I can’t
protect him from everything. She said
jokingly if I wanted to be a purist about it, we could get in his lungs and
find out or take a biopsy of his esophagus.
Then she stopped and thought about her words… “Hmm… we could do a bronchoscopy with your
pulmonologist and an endoscopy with a biospsy.
That would give us more information.”
She said she would contact the other doctor and get this scheduled. It would be under anesthesia, but it should
let us know for sure if Jayson had reflux.
She said that it’s possible that since he’s on continuous feeds all of
the time, his PH might always be neutralized.
He may in fact be refluxing, but it wouldn’t pick it up in a PH study if
the PH was neutral. She said we would
need to postpone the G-tube surgery until the testing was done. We would know after these tests if Jayson
would need a nissen or not. The doctor
said that she and other doctors and specialists get together for important
meetings and discuss patients with complicated histories. She said she will be discussing Jayson with
the team. Now he is on the list of TWO
doctors! This has to be good!
I asked her opinion about the baby food and aspiration
issues. She said it was physiologically
impossible that he was coughing due to reflux.
She said that since there is nothing sitting in his stomach, eating a
couple of milliliters of baby food isn’t enough to reflux it up. She said I should be cautious when feeding
him, and definitely shouldn’t force it if he’s aspirating. Additionally, she reminded me of the
difficulty of the situation—half of the kids with swallowing issues don’t
swallow because they physiologically can’t, the other half don’t know how and
need practice. If we stop feeding Jayson
solids entirely, he won’t be getting the practice he needs. If I do feed him solids, I could be pouring
them right into his lungs. Being a mom
is tough business, and the doctors’ contradicting advice is making it more
difficult.
I did more research later that night on Marshall-Smith, not
to scare of upset myself, but to once again attempt to PROVE it couldn’t be. It was so rare. There were only 40 cases documented in the
world. There’s no way Jayson could have
it. I wanted to see pictures of these severely
handicapped looking kids as babies, and prove to myself that there were no
similarities. That was my biggest
mistake. They looked like my baby. I could have mistaken my son’s early infancy
pictures with some of their baby pictures.
Immediately I wanted to know. I
had to know. I needed to know it wasn’t
it. And if it was it, I would somehow
rewind time so that it wasn’t it. That’s
how it would happen. I needed a hand
x-ray to determine Jayson’s bone density, and then I would know.
The next day I held Jayson the entire day. I only set him down to use the bathroom. I didn’t eat.
I didn’t move. I didn’t let
Jayson play. I just sat on the couch and held my baby. I called two doctor’s offices requesting a
hand x-ray. Unfortunately, no one would order it. They said I should wait until Monday at my
genetics appointment to get it done. I
tried explaining to them… I tried telling them what I was going through every
minute of the day… I tried helping them
realize that I’d much rather have the x-ray now so that I could hear the truth
in the genetics doctor’s office on Monday, where I could ask questions and make
a plan… I tried helping them understand that if I go in on Monday for the x-ray
I will get a random phone call with the results days later, and it would take
months for me to get back in with genetics to discuss our next steps. No one cared.
Literally. No one. For one short moment, I wished everyone in
the world could feel the pain and fear I felt.
Then they would understand. Then
they wouldn’t deny me the tiniest request of a hand x-ray. Then they would know why I wanted to reach
through the phone and punch them in the face.
They don’t think twice about scheduling tests that torture my child and
cost a fortune! But if I, the parent,
request a simple x-ray I am denied. All
I wanted was an x-ray. If I had the
x-ray it would somehow make everything okay.
But I had no x-ray, so things were not okay.
Fear took over every
aspect of my life for the next few days.
And before now, I never knew what real fear felt like. I felt out of control. Helpless.
Emotional. Vulnerable. Incapable of protecting my son any
longer. It was out of my hands. A quote I learned in church kept coming to my
mind, “You can’t feel both faith and fear at the same time.” I’m pretty sure I taught the young women in
my ward that concept. It’s a lie. You can have faith and feel fearful. I did.
I’ve never been more scared in my entire life, yet, I knew that if this
was what God had in store for me I could do it.
He would help me, and I would get through it. That’s faith.
But this was a situation in which faith did not help me. I didn’t want to think about having faith in
God to get me through internalizing the idea that my son would die. It was more comforting to feel the fear.
I also prayed, all of the time. In the shower, I prayed. On the phone, I prayed. Asleep, I prayed. I talked with God. I pleaded with Him. I asked Him and I told Him. I even made Him a deal. He could take it or leave it. He was the only one who could make this
okay. I felt like His mind was made up,
but I kept telling Him He could always change His mind. Jayson didn’t have to die. And I challenged Him too. If His plan was to have Jayson die, well, it
wouldn’t be that easy. Because although
all other children with Marshall-Smith died before 8, none of them were Jayson
and none of them had his will to live.
And none of them had me as their mother.
I lost count of how many nights I didn’t sleep. Two, three.
Maybe four. But the world
stopped. Time didn’t exist. There was nobody around me. There was just me, and Jayson. Then Monday came, bright and early. It was time to see the geneticist and
hopefully time to know the truth. My
nanny and I took Jayson to Primary Children’s.
I was glad Shelby was with me. I
sort of visualized the geneticist to be the great and powerful wizard of
oz. She would know things nobody else
knew. She would provide answers. Well, she was in fact the wizard of oz… only
she was the man behind the curtain. She
wasn’t prepared. She knew NOTHING about
Jayson and had never seen his file. I
spent the first 40 minutes of our appointment going over medical history and
symptoms or attributes that would be important to note as they relate to
genetics. She typed everything up. I mentioned my concern about
Marshall-Smith. “Hmm… it’s a
possibility. We’ll need a hand x-ray.” At least she knew what it was. She left the room to run things through her
database in her computer. When she came
back, she said, “Well, there are so many things it could be. But I am confident that he has a
syndrome. We’re going to look at Marshall-Smith
and order that x-ray. We’re actually
going to order a full body scan, which is 21 images. I’m also concerned about his heart. He’s had bradycardia and only had EKG’s. He’s never had an echo of his heart. Many genetic illnesses involve heart
problems. So I’m referring you to a
cardiologist. I’m also worried about his
C1 vertebrae issue. I had another
patient who has this problem and similar issues with Jayson, and one random day
this patient woke up paralyzed. I can’t
take that chance with him. He needs to
see a neurosurgeon sooner rather than later.
And prepare yourself, it’s likely he’ll be having brain surgery to
correct it before it’s too late.” She
also said that she has monthly meetings with all of the geneticists in the
valley, and each geneticist can pick a patient to discuss with the group. She is selecting Jayson. Wow. She
took many pictures of Jayson from head to toe to bring to her meeting. Three times Jayson has been selected. This both excites and terrifies me. The positive is that Jayson’s issues and
history will be discussed among the best doctors in the state and they’ll all
be putting their heads together to try and help him. The negative is that my son has finally
reached a point in which he is at a high enough risk to be that patient who is
selected three different times. The
geneticist said she wants these referrals and appointments to happen asap. She wants to see him in less than 3
months. Genetics appointments are
typically 6 months apart. I’m glad she’s
taking him seriously and I really hope we’ll get some answers. I received several pieces of bad news during
this appointment, but her commitment to Jayson was some of the best news I’ve
heard. The bad news? Well, the geneticist was ordering the x-rays
but would be heading out of town for a week and wouldn’t be able to get back to
me until the following week about the test results. I seriously would die.
We thought we would have to schedule our x-rays for another
day, but they had an opening for us that morning to get our x-rays. Poor little Jayse had to get 21 different
x-rays to show pictures of his entire body.
He did great! By the time we
finished, it was almost noon. I asked
the tech how long it would take to get results.
He responded with four hours. I
told him we were waiting to hear if my son had a terminal illness, and that if
my doctor got the results today she should be able to let me know before she
goes on vacation. He called the
radiologist and explained the situation.
The radiologist said he would need to add time to the typical timeline
so he could do research on Marshall-Smith Syndrome, but he hoped to have
results by the end of the day. I left a
note for the genetics office letting our doctor know the results should be in
by the end of the day and I really wanted a phone call.
(The order for the x-rays)
I kept the phone in my hand nearly the entire day. It never rang. My heart was still heavy, but I tried to
enjoy the moments with my son as I thought they might be the last memories I
have before knowing the terrible truth.
Suddenly, I didn’t want to know so badly anymore.
I woke up the next morning wondering if there was any chance
I would get results of the x-ray today.
Jayson had his first dentist appointment scheduled for today. I scheduled this wanting to know more about
Jayson’s one strange tooth, and what that would mean for him and his future
teeth. I got Jayson dressed and was
about to start packing him up, when the phone rang. I took a deep breath and answered it. It was the genetics office, calling to inform
me of my son’s x-ray results… My heart
stopped beating and I tried to hold on to that one last moment before the truth
as long as I could… “His x-rays all came
back within normal range. There is no
evidence of Marshall-Smith Syndrome.” I
thought I was dreaming. I thought my
mind was envisioning what I wanted to hear so much that I couldn’t hear what
she really said. I felt like God heard
my plea. I got off the phone and I
picked up my son and I danced. I made up
a ridiculous song about no Marshall-Smith Syndrome. And I cried really, really hard. Then I hit my knees. God heard my plea.
The world was still different. It starting rotating again. People continued to exist. And time resumed. But I was different. I would never look at the world the same
again. I would never take the time with
my son for granted. Everything would be
different, and that was part of my bargain with God. I would be better.
I called and texted everyone I could. I thanked my friends for their thoughts and
prayers. Shelby and I celebrated the
great news as we packed up the cute boy to go to the dentist. We were late because we were celebrating!
The dentist visit was nearly a waste of time. They were not too comfortable with babies,
and especially uncomfortable with a special needs baby. The dentist examined Jayson’s one tooth and
confirmed in was in fact a tooth. He
said, however, it was a molar!!! And
Jayson was cutting his other molars as well.
I asked what this meant for Jayson.
The dentist said he suspects that Jayson is missing his top four and
bottom four front teeth. He confirmed
that the tooth and other teeth are coming out the front of his gums rather than
through the top. He also suspects he may
have more strange tooth issues. He requested
an x-ray, but I refused since Jayson just had 21 the previous day. The dentist said the x-ray of his head of the
CT he had in April should give him some good information. I just have to have it sent over.
August 22, 2012 Jayson's New Best Friend
Today I met up with one of my friends for lunch, with our
adorable boys! Having a child with
special needs is challenging, and I feel you need a support group to get
through it. I have been making friends
along the way that make the difficult days a little easier. These moms know how hard life can be. They know that it’s the small things that
make all the difference and how much we celebrate little successes. They understand disappointment, fear, and
heartache. They know that feeling of
pure joy any time our little rockstars overcome an obstacle. I love this girl. Jessica has become one of my lifelines and
best friends. She has adorable twinners who
each struggle in their own way and she has become such an inspiration to me. We got to meet for lunch today with her cute
son. I felt like we could finish each
other’s sentences. And our little boys
bonded too. They're new best friends! They even dressed
alike! We had a wonderful time and I
hope we can do this again soon.
August 25, 2012 Swimmin' in the Sun
What an amazing day.
Today was therapeutic! Mike and I
both had today off, with no real plans. Yes,
we should have cleaned. Yes, we should
have done yard work or grocery shopping.
But guess what we did? We took
our son to the pool! Unplanned and
random, we packed up our little man and headed to the local pool. We were uncertain whether it would be too
busy, too germy, too risky, so we didn’t plan to stay. We just wanted to check it out. It was actually perfect. My sister met us there, and my mom was coming
to pick up her dog, and met us at the pool too.
I loved every minute of our afternoon.
We felt normal. We laughed. We splashed.
We had a great time. And, bonus—I
did my knee exercises in the pool! If
only summer didn’t have to come to an end so quickly…
So now… where do we go from here? We have a full two days scheduled in the
hospital next week for even more tortuous tests. I feel bad, as the mommy, ordering these
tests to torture my baby. But I know
that through these tests we can get more answers to improve his quality of
life, and perhaps even save his life. He
will be having a bronchoscopy, laryngoscopy, and endoscopy done under
anesthesia and he’ll have another probe placed to look for more evidence of
reflux, called an impedence probe. He’ll
stay in the hospital for monitoring for over 24 hours. I hope that all goes well with these
tests. I have a terrible feeling that something
big is about to happen. I had this “Mommy
Instinctual” feeling a lot in the spring.
I would know the night before we ended up in the hospital due to my
Mommy alarm (also called the Spirit).
Currently, I have a hospital bag packed for me and for Jayson just because
my Mommy alarm is on high alert. We’ve
been through so much. I really hope I’m
wrong this time.
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