Broken Leg, Whomp Whomp

Yesterday, OI broke Isaiah's left leg.  He was doing so well.  He rolled over in such a natural way, even grabbing on to the bar of his toy and to hold himself up!

He wiggled like crazy all morning...then he started to whine while sitting in his chair.  I went to pick him up...he wiggled and thought it was fun...causing him to quickly start slipping out of my hands.  I balanced him on the chair he had been sitting in (on his legs), grabbed him by his torso, and pulled him onto the couch.  At the time, I thought he would have broken a part of his torso, but he stopped crying after only minutes.  I thought "phew, somehow he's ok."

Then at PT, I noticed Isaiah wasn't reacting like he normally would when his physical therapist was tickling his leg.  I blamed being exhausted since he was up a lot thanks to gas and no morning nap.  I put him to bed for his afternoon nap and he fell asleep before I even got his pulse ox on him.  I went to pull his sock off of his left foot and put the pulse ox on, and he woke up screaming like crazy.

He fell back to sleep.  I thought "Goodness, he's just so tired!"  He woke up 20 minutes later screaming.  Fell back to sleep.  Woke up 20 minutes later screaming.  I thought that maybe it was gas again since both of his legs were pulled up so I gave him gas medicine.  We had lunch plans, so I put him in his car seat and we went to a nearby restaurant with friends.

He got through the whole meal with mostly smiles; needed a bottle and I was able to transfer him from the car seat to my lap with minimal crying...and the fussing that he did make I thought was the normal "FEED ME NOW" fussing.

But when we got home....and I went to pull him out of his car seat....

That scream.

Ugh.

I don't like OI.  I don't like that my son has OI. I accepted his OI when I was pregnant but gosh darn it, when it hurts him, I hate it. :( :( :(

I noticed then that his left leg was laying dead compared to his other limbs; it reminded me of when his arm broke.

I waited to decide until Dave was home (as I tend to blame OI for every tear all.the.time.), and kept him as comfy and still as possible until then.  I gave him regular tylenol so he had some form of pain relief, and it helped him naps comfortably and solidly for an hour and a half.  Once Dave was home, he agreed about Isaiah's leg not moving and that he was very much protecting it so we decided once it was time for more tylenol, that we'd give Isaiah his pain meds for fractures.  I also emailed his doctor.

His doctor said we're doing it all right...we have him wrapped and medicated.  As long as he's filling diapers and sleeping, he should be ok.  If there's trouble, we just have to make it until Monday when his ortho is in the cast room at DuPont and he can get an x-ray and wrapped however he sees fit (he's so well versed in OI, we're lucky to have someone with so much experience working with Isaiah).

Happy first Mother's Day to me, right?  I had a plan to make a "Happy Mother's Day"post, but well, OI took over.  Maybe if Isaiah is resting comfortably later, you'll get a bonus post. :)  For now, our morning is full of gentle cuddles, some careful playing, and as much Disney Channel as Isaiah wants to watch.

Wishbone Day Recap

Yesterday was incredibly exciting.  This Wishbone Day we worked with Senator Mike Folmer to declare Wishbone Day official through a Resolution!

 Isaiah and I sat in Senator Folmer's chair on the Senate Floor.

We took official photographs.

We sat in the balcony while everything came to order and Senator Folmer introduced the Wishbone Day Resolution.

The vote didn't happen until the end of the day.  But guess what?

Wishbone Day was introduced AND adopted! YAY!

We're so grateful.  Oh so grateful.  Thank you Senator Folmer, Senator Smucker, and Senator Fallon Binner. ;-)

While we were in the Capitol, our friends and family were busy turning our Facebook pages yellow.  We are in awe of how much love and support we received.  We received over 200 pictures!!  Bananas now need to be a tradition for future Wishbone Days as this was the second year in a row they were included.  (Last year, a creative individual held up bananas because he didn't have yellow.  This year we had one person hold up a banana and one person dressed as a banana.)  This year we introduced wearing yellow paper- whether it be on a teenager or on a stuffed goose.  

I think our favorite part of Wishbone Day 2014 had to be the fact that the main goal of Wishbone Day was accomplished ten fold.  So many friends spread awareness of OI!  Here is just a sampling of what came across my facebook timeline yesterday...

YOU ANSWERED!  YOU SPREAD AWARENESS.  You are phenomenal, truly.  Thank you so much for everything you did for us yesterday and everything you continue to do.

This has taken me all day (putting pictures together in iMovie was a whole lot easier last year when I didn't have to entertain my baby haha), but without further ado...

Wishbone Day 2014 from Vicky Martin on Vimeo.

Only 364 days until Wishbone Day 2015! What will we accomplish then? :)

HAPPY WISHBONE DAY!

A year ago today we celebrated our first Wishbone Day:

Happy Wishbone Day! Let's paint the world yellow today in celebration of Osteogenesis Imperfecta!

WIshbone Day is TOMORROW!

It's almost time to get your yellow on!  Please remember to share your yellow pictures with us!  You can do this by tagging Dave, me, or OIbelieveinIsaiah on Facebook, instagram (@mrsvickymartin), or email your picture to oibelieveinisaiah@gmail.com.  (By doing so, you'll be giving me permission to put it in a video like I did last year. I'm still totally stuck on a song idea.  This is what happens when you have a baby and never listen to the radio anymore. )

We'll be taking Isaiah to the Capitol Building in Harrisburg, PA, making Wishbone Day official in the state of Pennsylvania! :)  Expect updates on Wednesday. :)

Official Facebook Page

Oh snap, 2 posts in one day?

This is just a quick "wanted to let you know" that I created a facebook page for Isaiah, predictably named OIbelieveinIsaiah.

It'll be a place to go to for quick updates (like when we're in the middle of a Pam trip, a surgery, or sickness) or adorable pictures I'm dying to share at.that.very.minute, but the blog will continue to be my main source to post to (I try to post Monday, Wednesday, and Friday each week...unless it's a hectic week or we have more to share.)

Dave and I are both admins so expect updates from both of us. (My control freak side completely took over this blog.)

So be sure to "like" the page and perhaps share with friends and family.  :)

Helmet Time plus Sleep Study Results

While down in DuPont for Pam, we took advantage of being in the building and when leaving day number 2.  We stopped in at Lawalls (the place we are working with to get Isaiah a helmet to correct some things with his head) to check on the status of his helmet approval.

Helmets are sometimes needed for kids who have torticollis (which is when a baby leans to one way and his chin points to the other).  Torticollis is corrected with certain exercises...that Isaiah can't do as they put Isaiah at risk for fractures.  whomp whomp

Isaiah's head is flat in certain places because of the torticollis and because he's laid on his back the majority of the time (thanks to the c-pap) for 7 months; the helmet will correct that.

 It'll also help with the bulging that's occurring on the right side of Isaiah's head.

Normally helmets are denied by insurance, but since Isaiah can't do the exercises, guess what, Isaiah's insurance approved his helmet! Ahhh!! Normally a helmet costs about $4000 so this is a huge help for us.

Since our insurance approved we jumped on getting him molded for his helmet.

I sat on a bed, draped in a sheet, and held Isaiah while they put the plaster of paris on Isaiah's head.  

They first placed a sock-like thing on Isaiah's head to protect him from all the gunk as best they could.

Isaiah was crying a lot so I was in a foul mood not knowing how to help him (thus, the face below)...

Isaiah calmed down some once the sock was in place.

Then there was drawing, which didn't go over well.

And then, the real, slobber-everywhere-cry because the plaster of paris started...

He had to sit with this on for a few minutes to let it harden.  The pictures stopped above because he was really, really mad and I started to cry. 

Yup.

Once it was off, we rubbed Isaiah down with a few wipes and let him calm down.  We chose a plain blue design for the helmet (I hope to decorate it, but we'll see).  It should be in next week! And then he'll begin wearing it.  He's expected to wear it 23 out of the 24 hours a day.  Poor kid...it will be worth it to reshape Isaiah's head.

We're up for a new challenge, though.  How do you get a nasal cannula over a helmet?  We'll be facing that challenge once the helmet comes in because Isaiah's sleep study didn't go as well as we hoped and he now has to sleep with the c-pap.  (Big huge fat whomp whomp.)

He has mild to moderate obstructive sleep apnea.  During the sleep study, he had 26 episodes with his breathing; 9 of them involved his oxygen saturation level going below 90% (You want it really to stay above 92%).  We have to do another sleep study (booooooooooooooooooo) in 8 weeks while he is on the c-pap to make sure the pressure is efficient for him.

There are positives.  He only has to wear it at night time.  He can sleep without it during naps, so we only have to fight him about it when putting him to bed at night.  He's slept with it the last two nights and so far hasn't needed any tape.  Hopefully we'll keep it that way.

Another positive is that when his oxygen does dip, he does a great job bringing it back up himself (without someone having to shake his foot to wake him).  The problem is that he isn't getting a restful sleep, which he needs to grow.

He had blood drawn on Monday before Pam and his CO2 level was in the normal range, which shows he is doing a great job expelling his CO2 (which was his issue back in September).  Given he had been completely off of the machine for a month, I'd say that's a major win.

The bummer (well, one of them) is we're going to keep him sleeping on his mattress pad.  We were going to stop that and just have him sleep in the crib without it starting after this Pam treatment, but the mattress keeps him comfy and still so hopefully the tubing will stay on him (so hopefully we can avoid any taping it onto his face).

I may have cried on the phone to his pulmonary doctor when he told me...And then I may have gone out and bought Dave and I ridiculous amounts of Maggie Moos ice cream.

The ice cream definitely helped.  

I'm glad we know Isaiah needs more time on the machine...but it's just a complete bummer.  I was truly hoping to be past this chapter of his life and it turns out there's a few more pages.

Blah.  To add to the blahs, Isaiah's ears are definitely hurting him (I learned this the hard way when giving him his sponge bath this morning.)  After I posted this picture on Instagram of Isaiah stating that his temperature went down, it went back up...

so the tylenol regimen continues.

I do hope everyone else is getting to enjoy the amazing weather.  We're hunkered down, watching as much of the Disney Channel that Isaiah would like to watch, and cuddling (cuddling is obviously the best medicine).

Happy Friday, everyone!

Local Newspaper Article

This morning I experienced one of the coolest things...I opened an app on my phone, the app for the local newspaper, Lancaster Online, and my baby's face was on the menu!

AHHHHHHHHHH!

There he is! My beautiful Isaiah with his unbreakable spirit!  The article was in this morning's paper in the Lifestyle section and it is awesome!

Haven't read it yet? Here's the link...
http://lancasteronline.com/lifestyle/unbreakable-spirit-spunky-infant-with-fragile-bones-shows-the-true/article_c93fdfea-d06c-11e3-975c-0017a43b2370.html

We're very proud and happy to be spreading awareness of OI.  Wishbone Day is coming! It's less than a week away.  Do you have your yellow?!?

I was also highly entertained by Carl's cameo and mention in the article.  We love our Carl Marl!

We're very grateful to both MaryBeth, the writer of Isaiah's article, and Jeff, the photographer.  They did a wonderful job!

Jeff totally took this fantastic photo of Carl Marl!  How many people have professional pictures of their cat?

Isaiah is a bit under the weather today.  He developed a fever, was a touch grumpy, and had an ugly rash on his neck (I'll spare you that picture).  We got in to his doctor's office and they confirmed the fever (101.2), recommended hydrocortisone cream for the rash (likely from the tape used this week to cover the access of Isaiah's port), and saw he has a double ear infection! Poor baby.  I'm at a loss because I thought the tubes would help avoid that...but oh well, bring on the antibiotic and make our baby feel better!

If you're visiting us because you saw our blog's address in the paper today, welcome! Be sure to check out the tabs at the top of our blog to catch up on the many happenings of Isaiah.  I'm hoping to update you on the status of Isaiah's helmet and the results of his sleep study (yup, we already heard the results.  whomp whomp) tomorrow, but that update honestly depends on him.  I got zero accomplished today as I was busy taking care of my sick love bug, and I predict a lot of cuddling and focus on Isaiah tomorrow.  If you believe in the power of prayer, please pray for fast healing for Isaiah. <3