Special Kiddos

The chance of having a child with Pontocerebellar Hypoplasia is one in a million, if not more.  Thanks to technology, I have been incredibly lucky to find other parents around the world who know A LOT about the condition.  They, too, have children who were born with PCH.

There are maybe 50 children (just a guess) around the world who suffer from this heartbreaking condition.  Through our special Facebook page, we, as parents, have become close friends.  At a time when we could feel so alone in the world, we have an outlet where we can vent, ask questions, and share stories about our special children.  This support system is priceless because they KNOW what you are going through and can empathize on a deeper level.

I am a big fan of Jett's doctors.  However, PCH is such a rare condition, that many doctors haven't heard of it.  They have to do a fair amount of research to be able to prescribe the right medications and such.  When I have any questions related to the condition, rather than go to the doctors, I go to my Facebook friends first.  Their advice is so helpful.  I don't know what I would do without them!  Even the doctors ask ME a lot of questions about the condition so that they can learn more about it.  

We are all learning and growing together.

With the permission of the parents, I wanted to share some pictures with you of these beautiful children.  A couple of them have passed on, but many are still with us today.  Some live in the United States and others live in Europe and Australia.  Severity of the condition can differ for each child.  Some experience seizures, others do not.  The oldest child with PCH is 15 years old right now (not pictured), but the average life span of a PCH child is around 4 or 5 years of age.  

It can be a sad world to live in knowing that you are going to outlive your child.  However, through this support system, we are able to get through life's struggles together.  

I have a true love for these children and I feel like I know them.  They are such strong spirits and put up a courageous fight every day of their lives.  

Enjoy!!

Ear Tube Surgery

Yesterday was Jett's ear tube surgery at Children's Hospital in Omaha.  He has been experiencing chronic ear infections and has also failed his most recent hearing tests.  We also noticed that he has been vomiting more often, but it wasn't necessarily related to his reflux.  It seemed that any sort of movement, whether we were picking him up or turning him on his side, would trigger a vomiting episode.  I'm guessing that the fluid build-up behind his ear drums were making him experience some sort of motion sickness.  My poor guy!  

Motion sickness has to be one of the worst feelings in the world...and to have that ALL DAY, EVERYDAY?  Ugh. Not fun.

Ear tube surgery is typically an easy breezy operation and is performed on a routine basis.  It only takes about 10 minutes once the child is asleep.  Adults who receive the surgery don't even have to be put to sleep. We were really excited for this surgery because we knew that it would relieve the pressure in Jett's ears and help him feel better.

One HUGE concern, however, with any type of surgery for Jett, is with anesthesia.  He does not respond well nor can he be given the "normal" anesthetic medications.  

Jett's brain stem is severely affected due to his condition (Pontocerebellar Hypoplasia).  If you can remember clear back to your physiology classes...the brain stem helps regulate body temperature as well as a number of other very important things.  This puts Jett at risk for Malignant Hyperthermia.  If interested, you can read about it here, but just know that it's pretty scary and can be life threatening.

Whenever our anesthesiologists hear that Jett is at risk for this condition, red flags come up everywhere.  They become a little "more on their toes" and aware of the implications of giving Jett the wrong combination of anesthetic.

I have to say...the anesthesiologists here do a FANTASTIC job.  

They are so caring and attentive. I am continually amazed at their professionalism and compassion.

The surgery went wonderfully!  

When the nurses brought Jett back to me, he had cold rags wrapped around his arms and in his diaper to prevent a temperature rise.  He was still really sleepy and would get in such a deep sleep that his heart rate would drop pretty significantly.  However, after a little stimulation, his heart rate would come right back up.

Jett is pretty mad about his mint-green hospital nightgown that he had to wear.  Oh and this is what I look like at 6 a.m. Pretty awesome...no makeup on.

Right after surgery with his cooling rags around his arms.

Just cuddling with his teddy bear

We were able to go home after a few hours and I can already tell that both Jett's hearing and vomiting has improved.  Yay for a happy baby!  That makes for a happy mommy and daddy.

On a side note, whenever I leave the hospital here in Omaha, the nurses all give me a hug and give me words of encouragement.  How nice is that?!  I am a big fan of nurses and doctors and anesthesiologists and enterologists and pretty much anyone in the medical field who knows what they're doing.  

The end.

P.S.  Sorry for the horrible pictures...they were taken from my phone!

Extreme Sports

Well it turns out that Jett loves extreme sports.

Who would have thought?

The other day, we made our way to Vala's Pumpkin Patch in Gretna, NE with a bunch of my friends.  It was a BEAUTIFUL fall day and we had so much fun.  Vala's Pumpkin Patch is the Disneyland of all pumpkin patches.  It was amazing...everything from humongous jumping pillows to go-carts to the yummiest kettle corn on the planet.

Just ridin' the John Deere train

Chilling on the jumping pillows with Jett's besties, Dax and Berrett.

 I'm guessing the reason Jett is mad in the picture above is because we had to get off the go-carts (pics below).  It turns out he is more of an extreme sport baby...I was trying to play with him in a "sand" box made of corn kernels and he hated it.  He would rather feel the wind run through his hair.  His long, luscious locks of hair.

Yeah right.  Maybe he'll have hair by the time he is three, but even that is a long shot!

Regardless, we had a blast.  I was happy to find out that I can still do some "normal" things with Jett.  I don't necessarily have to hold back with him.  Yes, I do have to be careful that goats don't eat his feeding tube and that he is safe, but overall, we were able to do all of the activities at the pumpkin patch.  Victory!!

A true "ACTION" shot...I could NOT get the go-cart going for the life of me.

And for the finale, we have made PEACE with the goats! Jett and I fed them our kettle corn and they were loved it, but who doesn't love popcorn covered in sugar?

No feeding tubes were harmed this time.

Surprises from September

I know that I have mentioned how amazing and lucky we are to be where we are, but that feeling keeps getting stronger and stronger with each day of living here in good ol' Omaha.  Although it seems a little crazy that Cody decided to completely change careers and Omaha is definitely not our first choice of "nice" places to live, I am sure that it was meant to be.

It is really hard to be down on your situation or be sad about ANYTHING when you have such great people living near you.  I seriously love our neighbors and have so much fun hanging out with them.  They are very aware of our situation and have gone up and beyond to help us out whenever we need it.  I feel unworthy sometimes to receive such great support!

Case in point…

Meet the Winterholler's.  They are an amazing couple with the cutest twins you've ever seen.  Anyway, they showed up one night and surprised us with a painting for Jett.  Are you kidding me?!  Besides this being the coolest painting ever, it also matches Jett's room perfectly.  We now proudly display it right above his crib.  

Yup…cutest twins ever.

THANKS you guys!

Another awesome surprise this month came from Cody's cousins.  They are moving cross country from California to Virginia.  Even though it was a short visit, we were SO happy to see them.  Jett was being exceptionally good and let Dayna and Erin hold him for a few minutes.  They got a rare glimpse of the comfortable, peaceful Jett!

The next surprise really isn't a surprise at all…but Jett is cute.

This is "happy" Jett before his 48-hour EEG that occurred at the beginning of the month.  Jett's neurologists wanted to know once and for all if he is experiencing seizures.  It was all done in the comfort of our own home, which was nice.  The not-so-nice thing is that Jett had to have 23 leads stuck to his head with super glue and then had to stay in front of a video camera for 48 hours.  Ugh. 

 It was horrible!!  

I did not play by the rules.  I snuck him outside twice and actually ended the study at 26 hours.  I felt that Jett had exhibited all of his "seizure-like" behavior…and he was soooo uncomfortable.  Poor baby. It took me about two hours to take the leads off of his head, but once I finished, we rushed outside to enjoy the wind in our face and the sunshine overhead.  Jett even gave me some smiles.

We finally received the results this week.  Jett is NOT having seizures!!  However, his brain activity is very abnormal.  Even while Jett sleeps, his brain is incorrectly misfiring all over the place. 

 The constant activity in his brain is to blame for Jett's dystonia and chorea (stiffness/rigidity and involuntary movements).  The doctors didn't have to change any medication, however, which was nice for a change.  

The last surprise of the month came courtesy of a friendly goat at the Omaha Zoo.  First off, if you know me well, you are probably very aware that I am obsessed with goats.  I really would like to have one as a pet someday.  Now, I'm not so sure!  

The goat tried to EAT Jett's feeding tube.

Umm…not okay, goat.

Jett gave the goat a swift kick in retaliation.  Besides that, the zoo was so much fun!  The weather was beautiful and Cody got to come with.  It is rare to have time with Cody due to his crazy dental school schedule. 

And the best surprise of all??  Uploading the pictures from my camera and realizing that Jett is SMILING in this pic!!  This is a very rare occurrence people.  I hope you are as excited as I am.

Not Ready...

Today, Jett and I had an appointment with his physical therapist.  She had us come to discuss future equipment options.  I have to say that I wasn't too excited to go to this appointment for obvious reasons.   It just became too real for me. It absolutely breaks my heart that my son won't ever walk.  As other kids are outside running around in the sunshine, we were inside a hospital picking out the "best" wheelchair.  The physical therapist could tell that I was a little shaken, although I was trying to stay upbeat. Jett, however, seems to always know when to lighten the mood.  As tears began to well up in my eyes, he had the BIGGEST blow-out I have ever witnessed.  I don't think any of it even made it in the diaper!  Immediately my attention was on him and not the wheelchairs.  Thank you Jett!  He knew that I needed to be distracted at that exact moment.  I can't say that it was fun cleaning poo off of his entire body, but it at least gave me a good laugh.

The picture below is what we'll most likely be getting for Jett.  For right now, however, I'm not ready for it.  He's still my baby and I want to keep it that way for as long as I can.  I'll slowly come to grips with the reality of the situation, but for now I'll continue to dream of him running up and down a soccer field, or playing hockey, or throwing a football.  That day will come and I can't wait.

We've come a long way

I was just deleting some stuff on my computer and ran into some old pictures.  Although we still aren't in the clear, have many hurdles yet to come, and still have many daily reality checks, I realized for the first time how much our little Jett really has grown.

He hasn't put on much weight in 9 months of life but who cares (we were so concerned with this for a long time) He has accomplished so much in his inspired short life so far. Here is what he has accomplished so far:

-He dealt with us as 1st time parents, and not knowing his specific needs the first 8 weeks of life before we knew that he had some special things that we needed to do for him.
-Against all odds (PCH and cleft lip/palate) he learned how to eat out of a bottle for the first 2 months of life (he was never supposed to be able to do this)
-He dealt with a nasal feeding tube and an oxygen tube for 2.5 months
-He has taught doctors, nurses, techs, parents and pretty much anyone that encounters him, that size is NO indicator of strength… He is one strong little guy
-He is the first Boseman to EVER have an 8 pack, and the youngest Boseman to grow a mustache (loved his stache)
-He experienced his first of many surgeries by having his cleft lip repaired by an amazing surgeon (Dr. Morales) (although the lip repair was incredible, this is what ultimately ruined his mustache...)
-2 weeks after his 1st surgery he had his feeding tube installed into his tummy
-He made his 1st cross country move, and had the opportunity to go on his first airplane ride (thanks to some amazing friends)
-He endured a doctor making a stupid mistake, so he had his tummy button installed 2 times instead of 1.
-He has doubled in size and now weighs in at 13 pounds
-He has traveled the world (see his blog for all those details)
-He visited with his buddy Glenn Beck
-He has inspired many people world wide.  We have heard many of the inspiring stories but I know there are many I haven't heard. Secondarily to this, we have learned that there are really some incredible people out there that are filled with compassion.
-He has taught us about the world of raising a special needs child, and introduced us to some equally amazing angel babies.
-He has solidified the fact that prayers are heard and answered

-He has grown, fought, inspired, and learned with such an amazing little attitude over the last few months.  We are so proud of him.

Here are a couple pics I just found from when he was younger:

And here are some more recent ones.  Growing up:

If you have any more accomplishments that I didn't cover, Please feel free to remind us of them!  Thanks

A Couple Jett "Firsts"

 This past month has seriously gone by so fast.  Usually I try to blog (keyword: "try") once a week.  I can't believe it's been three weeks since I have posted.  August has been a great month for me personally.  The fact that we have nurses to come help take care of Jett during the night has been a life changer!  I am a firm believer that SLEEP makes the world a better place.  I am incredibly grateful that we even have the option to have nurses come to our home.  Jett definitely needs around-the-clock care.  He wakes up in the middle of the night with severe chorea/dystonia.  You can read about it here if you are interested.  Therefore, Jett's nights can be pretty miserable, which can make my nights miserable.  Now that we have nurses, I am completely confident that Jett will be taken care of at all times.  It is such a comforting feeling! During the day, I can actually function like a human being (not a zombie) and take care of Jett better than I ever have.

Cody is back in dental school full-time.  Even when he is home, his mind is still "in school".  His studies occupy most of his time, but he has made it a point to not let school take over his life altogether.  A couple weeks ago, he had his first patient.  It was an 83-year-old man who has probably never brushed his teeth a day in his life.  What an awesome first patient, right?  Cody had to do a thorough cleaning on this guy's teeth and from what I've heard, he did a pretty good job!

I have stayed busy with a million different projects.  Yes, you read that right.  Me....Tennille Boseman...does projects.  So far, I have remodeled my front room, built and painted furniture (well, Cody did), and made some wall hangings.  Thank you, Pinterest!  My next project involves the sewing machine.  I'm not sure if I'm capable, but I'm going to try to make some throw pillows for my couches.  But before I turn all Martha Stewart on you, I have been thinking about teaching fitness classes again.  I MISS it SO much.  For now, I'm just THINKING about it, but in a couple months, I may actually DO it.

The pictures that you see are from Jett's First Air Show that we went to over the weekend!  The weather was super hot, but Jett loved being out in the sun and around all of the cool planes.  The show was held at Offutt Air Force Base in Bellevue, NE.  It is a short 15-minute drive from our house.  Cody was like a little kid in a candy store.  Unfortunately, we were only able to stay about 1.5 hours....which is about 8 hours too short for Cody.

We stayed long enough to look at all of the planes and watch some great flying.  Now that I have some flying lessons under my belt, I am in even MORE awe at what some planes can do and how close they come to one another.  It's so crazy!  Cody thinks he is going to fly like that one day.  Sorry, dude...that's not happening. 

 

Jett, of course, wore his "Jett" shirt

 

 

He was one tired guy afterward!!

 

 The next group of pictures are at Lake Manawa in Council Bluffs, IA.  I took Jett there this week along with a bunch of friends from my neighborhood.  There is a little beach area where kids can run around and play.  It was so nice to get out and be near the water!  However, it's also a bittersweet feeling because I want to be IN the lake...IN a boat.  Oh well, that time will come again someday!

Jett was brave and stuck his toes and legs in the water

 

Last night was Jett's first Utah State Football game!  We had a little party at our house and wore our Utah State gear.  Even though we are a couple states away, we still have to cheer on our Aggies!!  Watching the crowd and seeing the stadium made me so homesick, though.  Oh how we miss Logan.  I never thought those words would come out of my mouth, but its true.  You don't realize how good you have it, until its gone!  Logan...we'll make it back someday.  Just you wait.

My "Jett" Pack

I know what you're thinking...and no, I'm not getting ready to go on a scout backpacking trip.  I'm just getting ready to take Jett and Kusaba for a walk around the neighborhood.  Luckily most of my neighbors know about Jett's condition and what it requires to take him out.  However, I am used to getting some crazy looks from some people!

I call this "look" the Jett Pack Look.  It consists of Jett (duh!), the Baby Bjorn, the feeding backpack complete with formula, and a poop bag for Kusaba.  As you can see, Kusaba is ALREADY distracted by a squirrel in this picture.  I spend most of our walk pulling and tugging at his leash because of all the critters that he tries to chase.  And then there is the poop pickup...seriously I look like I'm doing gymnastics.  With one hand, I hang onto Jett and Kusaba while I bend down, but I can't bend down far because I don't want the backpack to fall forward.  When this happens (and it has), the feeding pump starts alarming which requires A LOT more unnecessary work.  With my free hand, I take the plastic bag and carefully pick up Kusaba's poop.  With that same hand, I tie the bag in a knot (while holding my breath) and attempt to stand back up.  All I can say is...I'm thankful for yoga and pilates or else I'm sure that I would have a pulled muscle by now.

Total random side note, but there is an old lady that lives near us who picks up her dog's poop with her BARE hands.  Gross.

Okay, back to our walk around the neighborhood.  It usually lasts about 30 minutes and by the time we get back home, I am usually sweating profusely and Kusaba is about to pass out.  Jett, however, is LOVING every minute of it.  He just hangs his little arms out of the Baby Bjorn and soaks in the rays. Once I have taken care of Kusaba's "stuff" and put on hand sanitizer, I really enjoy the walk too.  Jett and I hold hands and talk about the leaves on the trees, the cars passing by, and the bugs making funny noises.  He gets smothered with lots of kisses because he is conveniently placed right on my chest. 

This is precisely WHY I go to this much work to go on our daily walk!