Friday, October 31, 2014

Happy Halloween!

Last year, we dressed Isaiah as Mickey Mouse...it was back when Isaiah was still on his cpap 24/7, I was afraid to dress him in onesies, and we had been gifted this amazing crocheted set made especially for Isaiah...but I had waited a little too long (well, we were in the nicu for, what, 2 months?) so it was a little tight. ;-)


My, how he has changed in a year!


For his second Halloween, we are obviously continuing the Disney tradition, Isaiah is dressed as one of Mickey's best pals, Donald Duck! (And look, Mickey dressed up too, as a sailor!)


Carl even wanted in on the picture taking action (he's not so into costumes.  I tried to put a Santa hat on him once, he turned Scrooge real quick)...

"Um, kid, do you know you have flipper feet?" "WHAAAAT?!"

Getting these two to smile together both look at the camera was impossible and both boys quickly lost interest...

I had way too much fun taking pictures with a boy who is starting to (finally) feel better from that nasty virus.


We have plans to maybe head to our local mall tonight for some trick or treating adventures (nice and accessible!)...but I have a thing about people taking kids out when they can't eat candy like that, so if we go, we'll likely just walk around with our little duck (who keeps quacking! LOL) and just immerse him in the experience of Halloween.

Trick or treat, smell my feet, give me something good to eat. :-P

Look at that tail!!!! (Yes Isaiah, I did take a picture of your tushy. Yup, I am a weirdo.)


Clearly this post is picture-heavy, but it was hard to choose with so many fun shots!...


Until he got tired of it...LOL!


Whether you celebrate this silly little holiday or not, we hope you enjoy your weekend! <3

Wednesday, October 29, 2014

Water Therapy

Recently Isaiah was lucky enough to have his Daddy join us for some water therapy!  I took advantage of the help and stayed dry for this session. :)  


Isaiah has water therapy once a week with his favorite physical therapist...she happens to also be his PT through Early Intervention, so he gets a good amount of time with her, which is fantastic because she's amazing with him. 


Isn't the pool awesome?

Isaiah has been doing consistently better with sitting up in the pool on a lap (with some upper back support).  He's perfected taking a ball in and out of a fun bucket too.  Do you see that form (above)? ;-)


We're having some issues with insurance covering this therapy past November, so I am learning the ins and outs of switching his secondary insurance.  While I do that, I've also pulled out something fun from the garage, something we got from that fantastic OI family in a neighboring state that gave us a ton of adaptive equipment last month....


Look at this big kid!  I am working on some leg and head supports (with the help of some very creative OI families) and today I will be taking it to a local bike shop to fix up the wheels.  Hopefully we can get this guy moving independently sometime in the future?  I won't be rushing this, but I am excited to hopefully see him pushing those wheels some day.

<3

Monday, October 27, 2014

Isaiah's First Pumpkin Experience

This weekend we spent a lot of time trying to recover.  There have been some heart-in-my-throat moments as Isaiah coughed and sneezed...worrying about the possibility that he would break a rib or worse just dealing with this virus....we brought him to his pediatrician on Saturday morning just to verify that it continues to stay clear of his lungs.  It does. :)  Hopefully, as the days go on, we'll see some improvement.

In the meantime, we took advantage of a good afternoon on Saturday and carved some pumpkins. :)

Isaiah was skeptical of the whole thing from the beginning.

The exciting part of this activity was that it was not only Isaiah's first time experiencing it, but also Dave's! (So they were able to be grossed out together.)


I had some teaching to do. :)  For the most part, I had two willing students.


Until the real guts were introduced (see below).  All the gutting happened out on the deck, and it honestly terrified Isaiah so Dave brought him in to relax on the floor while I finished the dirty job.


Once they were gutted I moved the pumpkins in to the house and we got to carving.

Not too shabby, eh?  I carved the pumpkin on the left and Dave carved the one on the right.  (We have a small pumpkin to paint with Isaiah but that activity hasn't occurred yet.)

Isaiah was very intrigued and studied our work.  The student definitely became the teacher.  

I think we passed?


Yup.  We passed. ;-)

Friday, October 24, 2014

Pam

This week Isaiah and I traveled together to Delaware for his bimonthly bone treatment called Pamidronate (I call it "Pam" for short).  The ride there alone should have been an indicator of how this trip would go, haha...a foreshadowing if you will.  Before we headed out on Sunday (to stay at the Ronald McDonald House), Isaiah refused any type of lunch.  He wouldn't even take a bottle of milk.  I thought maybe he was tired and he'd pass out in the car....nope.  Instead, he whined and moaned and decided he was too hungry for me to continue to drive, so once we were half way there, we stopped for a yogurt break.


He passed out rather quickly after the yogurt but the nap only lasted 20 minutes.  He was a grump and a half for the rest of the ride.  We quickly checked in at the House and we unloaded the car together (as he continued to cry).


That first night we got maybe 2 hours of sleep?  He whined.  He cried.  He moaned.  He was so tired but only slept in 10-20 minute bursts.  He was moving everything, but I was confident I knew what it was- a front top tooth coming in.  He just had his first top tooth pop through between Friday and Saturday of last week, and was acting pretty similarly then, just not as loud, which I associated with the fact that we weren't home.

With heads pounding (well, my head was pounding), we headed over to DuPont to start his treatment.  He yelled for pancakes:

This is where my picture stopped for a day.  Isaiah was a mess.  He cried a lot longer after they accessed him.  He cried for most of the treatment.  (I was so frustrated, flustered, exhausted...the room he gets Pam in is a room of 10 beds and curtains, no one could get away from the screaming, and my baby can SCREAM.)

I asked about giving medicine...I honestly wasn't sure if I could give Isaiah anything since he was getting Pam...they recommended Tylenol and even called Pharmacy for us and gave him his first dose.  It helped, but only a little.  Luckily, [Isaiah's buddy] Gavin's mom had a bottle (I only had Baby Advil), so we borrowed from her for the next few doses.  Isaiah was a mess at dinner.  He screamed the entire time.  

I was begging his tooth to come through.  He was chewing on things, clicking his jaw together, and drooling up a storm.  

But then he really started screaming horribly whenever we'd get on an elevator or go over a tiny bump.  I started worrying he had a break.  He also developed some congestion and was sneezing a bit more than normal.

We got a better night's sleep.  We were still up most of the night, but we had longer bursts of Isaiah sleeping.  

But he was still so tired.  So grumpy.


We spent the majority of Pam cuddling.


Or eating.  Or walking in circles around the nurses' station.


We had another rough rest of the day over at the McDonald House.  More screaming.  More Tylenol.  More cuddling....we only left the room for dinner (so I was grateful I actually ate breakfast because I didn't get another chance to eat a meal until dinner time), and that didn't last long because he fussed his way through that too.  I started to worry that maybe he was hurting.  Maybe the adaptive stroller was hurting him somehow?  Maybe it was just the tooth?  He started coughing.  I started to panic again over everything (did I mention I was panicking through Sunday night? I seriously almost had a major panic attack in the middle of his screaming.  Seriously, this trip was not my favorite.), 

Is it his tooth?  Am I sure? Really sure?
Is this coughing, sneezing, and congestion a random reaction to pamidronate?

What if he does have a break?

And then when he would fall asleep I was up worrying.  

But his sleep wouldn't last long, he'd wake screaming because he couldn't breath through his nose.  I started using the suction machine...it's not so quiet.  A neighbor was yelling from his room.  Isaiah ended up being up for the day at 5am so I packed up our room figuring we should get the heck out of there, that we'd come back later to clean and check out.  The neighbor yelled some more (Would you shut that kid up already? It's friggin six am!!!) as we walked by his room (sorry buddy! really I am, but he's a baby.)

I packed the car tight after a quick breakfast.  It was pouring rain on us.  Instead of using the stroller, since it doesn't have a shade to protect him from the rain, we used Isaiah's car seat in a wagon.

Oooooh, my first wagon ride!

He was so congested.  His cheeks were rosey.  They took his temp, 100.6.  Ugh, now a FEVER?  Are you kidding me?  Now more panic...what if this is something more?  His lungs??  CRAP!  We can't do that again....  The nurse had to call the doctor/his PA to see if they could administer the last dose of Pam.

We gave Isaiah Motrin.

Dr. B's PA came down, listened to Isaiah, and said his lungs were clear...that it was all upper airway congestion...so I calmed down, it's that tooth.  It has to be.


The Motrin kicked in, his fever went away, and for the first time in days....


He played! Really played...


We finally got the boys together!


The rest of the day was a whirlwind.  I had one goal: GET HOME.

Once pam was finished, he was de-accessed and we got the heck out of that hospital.  ;-)

It was still pouring rain outside.

We cleaned up the room at the McDonald House, grabbed a quick lunch, and....

during that lunch, it was then that I spotted it, Isaiah had a new top molar!

Relief.  For both of us, so we headed east.  Isaiah slept most of the ride home.

For the first time in days, Isaiah slept almost through the night.  He woke hungry so I gave him a bottle and we slept until 6.


He was still congested though.  And exhausted.  After 11 hours of sleep, and 3 hours awake, he fell asleep on the floor in the living room....


and my throat started to hurt.  Turns out Isaiah really did catch something, and he shared it with me.

Thanks buddy.

We're both working on resting and recovering right now...and hoping we never have a Pam treatment like that again.

Dave was traveling for work this week, so we look forward to seeing him and sharing our germs with him.  We've missed his face. ;-)

<3

Wednesday, October 22, 2014

Update

The last few days have been rough. Isaiah and I are at DuPont for his scheduled pamidronate treatment but things aren't going like they normally do.

I'm not sure if it's a tooth coming in, a sickness coming, a reaction to the treatment, a fracture or what but Isaiah has been a mess.

A more detailed update will come some time in the future, but for now...I'm sleeping when I can, cuddling when I'm needed, and just trying to survive this. 


Please pray for our Isaiah. 

Monday, October 20, 2014

Fall Fun

This weekend, we had a ton of fall fun!


After shopping for Isaiah's Halloween costume, we went to pick up some pumpkins to carve and paint...a major perk to living in a rural area is that you can get huge pumpkins for $2 each. ;-)


We went to a really fun party where we painted pumpkins...well, I painted a pumpkin, Isaiah just threw the paintbrush and shoke his head no.  He perked up a lot though when we moved on to throwing a ball into a Pumpkin bucket.  This kid loves to throw.


After all that fun, we ate some mummy hot dogs, cheesey broomsticks (no really, they were made of cheese), and pumpkin clementines (I wish I had gotten a picture; it was all so cute!)...we roasted some marshmallows, masde some s'mores...and just had a good ole fall time.

There was even a piƱata!  The kids did an awesome job taking that sucker down... 


and I think Isaiah was horrified. lol  His eyes were wide the whole time and I imagined him asking all of the kids "hey, what did that pumpkin ever do to you guys?"


Once the pumpkin spilled its goodies, we got to playing.   Isaiah LOVED the bouncey house slide!


So much! There's a video that you have to see, but I am not on a computer to write this update so I can't link to it...but it's on Isaiah's facebook.  Go stalk!! Trust me, it's worth it.

Isaiah tried denying his friend's love...

But he loves her.  The picture below is from when she was playing with him.


It was a fantastic weekend! Isaiah and I wrapped it up with a drive to the Ronald McDonald House.  We have his pamidronate treatment this week.  For those who are new to the blog (hi there!), pamidronate is the medicine that Isaiah gets every 8 weeks to help strengthen his bones.  We go over to DuPont for 4 hours each day for three days.  You'd think it'd be boring, but it actually ends up being so much fun because we're on the same schedule as his buddy Gavin, who is 4 months younger that Isaiah.  So be on the look out for adorable pictures of the two peas in a pod.

:)

Thursday, October 16, 2014

Spreading Awareness!

A few weeks ago, Kendra Nichols from ABC27, a local news station here in PA, called my cell phone.

She wanted to share our story and help us spread awareness of OI.

We, of course, said YES!

She came to our house and interviewed us...


Tonight, her piece aired.

It was awesome.

In case you missed it, you can view the video here, or if I can embed correctly...
WHTM Harrisburg, Pa.

We loved it.  It is an amazing piece spreading awareness of Osteogenesis Imperfecta.  OI won't stop Isaiah from living an AMAZING life.

Thank you Kendra and ABC27 for sharing our story.  Thank you Justin for being a part of it!  We WILL meet someday soon! :)

Wednesday, October 15, 2014

Worthy of Life.

Yesterday I was introduced to the Worthy of Life Campaign.  It is a campaign "uniting people all over the world to take a stand and say that people with disabilities are as worthy of life and love as individuals without disabilities."

And it's caused me to reflect (aka I'm babbling and needing tissues).


The words struck me, as earlier in the day I had read an article about a mom who found out about her child's special needs after he was born, and wished she had known so she could have aborted him.

She is quoted: "We made it clear to the doctors that we didn't want a child that was not going to be able to ride a bike and do things that normal children do."


I am not judging this mom (I am curious if this is a legit story, though)...but still, this struck me to the core.  

I knew.  

We knew.  

We knew before Isaiah was born that his life would have challenges.  For 20 weeks we didn't know; I felt his kicks, we heard his heartbeat...We were already so in love with our baby that there was no way that we would choose termination.

Even now, knowing he went into respiratory failure, that he ate through a tube that passed through his nose into his stomach for 5 months, that he can break his arm rolling over or get a compression fracture from sneezing, I would still choose life for him.  Those moments are just blips in his life.  

His life is so much more than his OI.


A few months ago, a New York Times bestselling author received a similar diagnosis to what we received at our 24 week ultrasound.  Like us, they chose to hold out hope that their baby would make it.  Sadly, they did lose their baby to Osteogenesis Imperfecta, as she was type II (which is lethal); she was born early and just couldn't fight...but she lived for less than an hour, and the family treasured that time...their story was on the Today Show's facebook page.  The story focused on the non-profit organization Now I Lay Me Down to Sleep and how they provided beautiful photos to the family....OI was only briefly noted.  I made the mistake of reading comments and some followers caught the description of OI and made some heartless comments about the parents not choosing to terminate.  

I commented back to these few people and received responses.  I was described as selfish.  I was selfish for making Isaiah endure "a lifetime of pain".

A lifetime of pain?  Does this guy look like he is constantly in pain? 


I know that these people were unaware of OI...and this was just a story in their newsfeed.  They didn't know me; their opinions didn't matter.  But it made me think...selfish?  I hadn't viewed it like that.

I've never looked at our life from an outsider's perspective.  Selfish.  I guess so.  I had fallen in love with him.  I wanted him to live.  I wanted to give him a chance.  Selfish.  That's a legit description that I can accept.

But like the couple that lost their baby with OI...Isaiah was diagnosed type II.  We found specialists at various children's hospitals and the first recommended to terminate since they believed it was "either type II, the lethal form of OI, or an extremely severe form of type III".  Isaiah was considered "not compatible with life."  They handed us a folder full of information about OI, with type II circled, and told that we needed to do further testing to "decide who was the more important patient in the birth", meaning me or my baby (yes, at a children's hospital).   

We were lucky; the doctors that diagnosed Isaiah as type II OI were wrong.  His OI is severe, but he's alive!  He's so happy!  He's feisty.  He's determined.  He's adorable. ;-)

I believe Isaiah did endure pain in the womb, no matter what the doctors told me...but did it warrant me choosing if he lived or died?  No.  That time was only temporary.  When he has a broken bone, that time with pain is temporary.  

He loves life.


I know he faces challenges as he gets older...one of my biggest fears is silly, but I worry about how he will be accepted by his peers.  Strange, isn't it?  He faces surgeries...He faces breaking bones...But I am worried about the other kids.  Kids are blunt.  Isaiah's already been described as "the kid with the big head and weird eyes". ...I know Isaiah is worthy of love...but how do I show his peers that he is worthy?  Will their parents understand?  His teachers?  Will they get it?  That he is worthy of their love, respect, and acceptance, just like they are worthy? 


Will they understand that he is still a little boy?  A little boy that is obviously thrilled to be alive and is so very extremely worthy of life.

___
Isaiah, we will never ever ever regret that we chose life for you.  You accept every aspect of your life with such zest.  You are our amazing miracle and you are worthy.  <3