Our thoughts exactly

The past week I have ran in to 2 different blogs from special needs parents.  Its amazing to read them because, the thoughts and feelings that they described are completely in line with what we feel and think.  If our parents or close friends were to read these, they would think that we wrote them.  Thank you so much to the authors for putting your feelings to words, and expressing the things that we feel but cannot transfer to paper.

We're not special parents

What I would tell you

Thanks to those that pointed me to these blogs.

It Gets Better

This past week has been exceptionally tough on me for some reason.  I don't know if it's the changing seasons or if I'm just tired, but it was different. Taking care of Jett has gotten the best of me and really tested my strength and patience.  I find that when Jett is experiencing bouts of pain and distress, I have to disconnect myself from the situation.  My "nurse" instincts (who knew I had them?) have to take over. 

Is he breathing? Kind of...check.
Is he choking?  Not anymore after suctioning his throat and nose...check.
Is his feeding tube irritating his skin?  Yes it's red and inflamed.  Lidocaine applied...check.
Has he gotten his scheduled medications?  Yes, next one is in an hour...check.
What is his temperature?  100.4...hmmm, something is up.

I go through this check list OVER and OVER about ten times a day, if not more. 

IT. IS.EXHAUSTING.

I think the whole "disconnecting" thing is a defense mechanism of sorts for my emotional stability.  If I didn't do it, I would be crying all the time.  Crying out in anger and guilt that my sweet, little boy has to go through so much.  Sad over the fact that he can't enjoy a visit to the Children's Museum or a ride in his stroller.  I just don't get WHY he has to suffer through it all.  

With a special needs child, I have heard that the first year is the hardest.  Hard because you don't know quite what you're dealing with, at first, and hard because of the unpredictability of their day-to-day as well as their future altogether.

I decided to approach my PCH (Pontocerebellar Hypoplasia) Facebook group about this and ask the question, "So I need some honest answers here...what was your first year like with your PCH child?  Does it get better?  Furthermore, does the CHILD get easier to take care of or do you feel that YOU were able to deal with things better?"

Here were some of their responses:

1) "It was AWFUL. So bad I have blocked most of it from my memory. I couldn't drive anywhere. She cried ALL the time. She wasn't social. It sucked. She got much easier. She is happy all the time now. Only cries when she's sick. She smiles and laughs and had a personality. It will get better. Just hang in there."

 2) "Yes the first 2 years were tough, heck, they were horrible, he cried, all the time, no matter what we did...once we got things figured out, and got him on the right meds, it did get better...he wasn't as sick as much, probably we were able to deal with things a bit better as well. just recently things have gotten tough again.  He is a lot better now, he smiles and gabs our ear off. shows us when something is bothering him with facial expressions...THINGS WILL GET BETTER!!!!

 3) "The first year was unbearable! I think I said "I quit" every night. He would cry 24/7 & we had sooo many issues. The 2nd year has had challenging periods but is a bit better (or maybe we are just getting used to things). It wasn't until a few months ago that I actually felt comfortable to leave him with a sitter because I wasn't afraid he would scare them away!"

4) "It gets much better and much easier. i can hardly remember the 1st year i think. lack of sleep and anxiety/grief/anger. but we settled in with our son, changed our expectations, went to therapy (it really helps!), did some soul searching and realized that all the negative makes those small bits of positive SO WORTH IT. now we do things we never imagined we would do! hang in there!!!"

After reading these responses and many more, I breathed a HUGE sigh of relief.  THINGS WILL GET BETTER.  They just have to...that's all there is to it! 

Grocery Store Victory

Jett and I reached a huge milestone today at the grocery store.  I can now shop hands-free!  This little dude sat in his carseat the whole time.  He cried at the beginning, threw up twice, and then started looking at all of the lights.

 He may have even started liking his carseat.  

Dare I even say that?? 

Toward the end, he started to fall asleep in it.  You probably don't understand my excitement, but I literally want to shout for joy from the rooftops.  Every little success (no matter how small) deserves to be celebrated and this is definitely one that I will celebrate.

Coincidence? I think not.

Do you think it's any coincidence that BOTH sets of grandparents booked a trip out to Omaha 

after seeing this video?

Yeah, me either.

 

Jett is getting his two bottom teeth AND his top tooth (which I just barely noticed). 

 He has been one ornery camper, but you can't tell in this video. 

Cute, little stinker!

On a side note:  Yes, BOTH sets of grandparents are coming out for Jett's first birthday in December. 

We are so excited!!

Interaction

After Jett's bath tonight I put him on my bed and lay down next to him.  He was giving me some cute smiles after I would kiss his chin.  It was so nice to see him relaxed and alert. Those two things don't usually coincide...he's either relaxed and ASLEEP or alert and MAD.

After some time doing this, I went to the other side of the bed and called his name to see what he would do.  It took a couple seconds, but he slowly turned his head toward me like, "Yes, mommy?"

Cutest thing ever.  I may have cried.

Sometimes I wonder if he knows who we are, but tonight, he told me himself. 

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!!

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!

Lovin' on Mr. Caterpillar

Jett has been lovin' on this cute caterpillar toy lately (thank you, Devin!).  This is the first time EVER that he will grab something (well, we have to place it in his arms) and hold it close to him.  He likes the fuzziness touching his face and likes to give it "kisses".  We spent the night at the ER on Saturday night and so Jett has been needing the extra cuddling.  By the way, I hate ear infections...especially double ear infections, and I'm pretty sure that Jett does too.

On a better note, our private duty nursing has begun!  We are so grateful to have qualified for nursing in our home.  From here on out, a nurse will come to our home every night from 11 p.m. to 7 a.m. so that Cody and I can get some good sleep. This will happen Sunday through Thursday.  The word that comes to my mind...MAGICAL and words can't even describe how excited I was to go to sleep last night.  Cody was trying to talk to me and I was like, "Shhhh...you are wasting my sleep time." Jett had a pretty good night and only woke up once for the nurse.  She gave him his middle-of-the-night meds and rocked him back to sleep.  I am so incredibly grateful that he is being cared for so closely throughout the night.  Sometimes I worry that even though his video monitor is right next to me while I sleep, that I won't hear him.  This definitely gives me peace of mind and will help me care for him better during the day.

This is kind of a random thought, but even though we are experiencing one of the biggest challenges we will ever face, we have been blessed to meet some really wonderful and genuine people along the way.  Not only are we surrounded by amazing friends and neighbors, but the doctors and nurses have also become our close friends.  You can tell that they truly care for Jett and want the best for him and us.