3 months old!

Can you believe it? Isaiah, you are three months old today!

Baby, I give you the gift I've been dying to be strong enough to give you for weeks now, the gift of hanging out in your room.

 It required mommy trusting herself to get your machines to you quickly. 

We did it!

You're such a happy little guy who continues to get stronger. 

That strength will come in handy this week. 

We're off to Dupont tomorrow for Isaiah's bone treatment. Lots of prayers over the next few days are appreciated. :)

Physical Therapy

Physical therapy has been going extremely well.  Isaiah has only had 2 sessions with his PT but so far she has taught me a lot about how to position Isaiah so that he can work his muscles.

I learn best by seeing and then doing, but the PT and I have an agreement that if it involves manipulating Isaiah himself, then I'll do that (if anyone is going to break him, it'll be me...and I don't plan to go too far passed his comfort zone).

This week his PT showed me how to position Isaiah better in his chair.  It is cushions and blankets galore.

The goal is to bring his shoulders forward.

Woah, look how long my arms look mom!

I'm working on that now whenever Isaiah is in his chair...

Just trying to eat my monkey friend's face, nothing to see here...

The big thing that we worked on, the thing that made me nervous...is putting Isaiah on his SIDE.  I do this when he's on me, but I've never manipulated him to his side in the play pen, and we've got to get this kid off of his back as much as we can (hopefully tummy time is in the near future...we're waiting until after this next PAM treatment)

Here he is the very first time on his SIDE!

Are you people serious???  What are you doing to me, ladies?!?

As you can see, he wasn't so thrilled with it.  It lasted maybe 5 minutes.  But this morning, now that Isaiah is feeling better after his little breathing episode yesterday and a night of restful sleep, I got brave...

Ooooh, this position isn't so bad.....woah, that seahorse guy that plays music has a belly that lights up? How did I never see this before?

Hmmm, I wonder if I can reach you...

Holy Cow! YES! I CAN touch you! This is SO AWESOME! MOM, take my picture from every angle possible!!

Ok, Isaiah... (proud-mommy-armed-with-a-camera-alert)

aaaaaaaand sleepover.

So, I'm not sure if you can tell, but I'm pretty excited that we're getting Isaiah off of his back and REACHING for toys!  We're just so proud of him.  He was so comfortable that he fell asleep!  He ended up staying in this position for about an hour; that's a big improvement.  Next time, we'll try laying him on his left side, just to mix it up.

Happy weekend all! 

Quick Update

For those not on my facebook, things are looking better...

He's now sleeping, kind of like a dinosaur.  

Roar!!

Calling All Prayer Warriors

This morning has been tough.  Although Isaiah had a good night of sleep, he awoke this morning grunting and having difficulty breathing.  We gave him an Albuterol breathing treatment, as recommended by his night nurse, to open his airways if they were blocked.  He's breathing better, but his heart rate is still high hours later (it's a side effect of the treatment; it just seems to last longer than ever mentioned by professionals).  Dave was on his way to work once Isaiah started sleeping, but when Isaiah started coughing 30 mins later, I called him to come home.  We've spoken to Isaiah's pulmunologist.   He believes we're through the worst of it and that it was just a bad episode (like the last time we went to the ER) but told us to head to the ER if we hear noise in his lungs again.

What was comical about this whole thing, is when I hung up with Dave, crying because I was feeling scared, Isaiah smiled and I'm pretty sure laughed as well.  He did that this morning during the treatment, too.  I guess my crying face is hysterical.

When Dave got home, he fussed like crazy- cried, screamed, sweated... and then....

Cracked up. Our worried faces sure are funny looking. 

Please pray that it was just an episode and that he's ok. 

On another note in which I am begging for prayers...the date's officially been set to go back for Isaiah's bone treatment.

Isaiah will be going in for his next PAM treatment on Tuesday, November 12.  Although I am so happy for his bones, I'm nervous for his respiratory system.  Can it handle this?  Will he react the same way as he did last time?

The positive is, even though he'll be 3 months old, he's headed back to the NICU for his treatment.  I may have fist pumped like a champ when the doctor told me this.  They're amazing.  They listen.  They know how to handle and care for Isaiah.

They saved his life.

I forever love them and I wouldn't be against him staying there for every hospital stay until he's 18.  (What? Can't we make that happen? This some day aging-out business is hooey.  Hooey, I tell you.)

Please pray with us.  Please pray that Isaiah, our little miracle, is now old and strong enough to handle his bone treatment.  Please pray that his reaction last time was just a one-time thing: once and done.  Pray that his lungs are strong and free of fluid and that we won't need to head to DuPont before Tuesday.  Pray that the IV will go in smoothly so that we can again avoid surgery (to put in a central line so he can get the PAM that way...and he'd get a g-tube while he's sedated too).  Pray that we'll be home by the end of the week!  Thank you prayer warriors, we know Isaiah has gotten this far and done as well as he has thanks to you. <3

Isaiah's Angels

Many say that November is the month of thanks.  I don't think we've experienced a November where we've felt more thankful.

We're so incredibly thankful for Isaiah's angels.

Isaiah's angels come from all over and have reached out in ways we'd never imagined.

Angels like the Farley Open Members and the donors who gave to the Farley Open Charity.  The Farleys and the Martins, and so many donors we've yet to meet, did something for us that I haven't quite found the words for.

Thanks to them, Isaiah will have exactly what he needs when he needs it. 

Some of Isaiah's angels are current friends and old friends.  Some that I've known since I was 5.  Some since I was 14.  Friends that donated to us and provided us our incredible stroller and more.

Some of his angels are family members, like Aunt Ann and Uncle Santo, along with Cousins Sal and Kate who came to pick up clothes at nine o'clock at night so they could have them altered for us.

Or like cousin Molli, and her two friends, Mikey and Claire.  They are Team Isaiah and are running a half marathon on November 16th in honor of Isaiah.  They've raised over $2000 for the OI foundation.  They are inspiring.

Some of his angels are acquaintances we have and people who've heard our story through friends and family.  They are members of churches that banded together and prayed for our Isaiah; they prayed for Dave and I.  They continue to pray for our family.  They are members of churches in Pennsylvania and in Texas.  Loving members of churches that created beautiful prayer blankets for Isaiah to snuggle in, blankets with knots that were each tied with a prayer and a lot of love.

We're in awe every day....between our miracle boy, Isaiah, and the amount of love and support that we're received from hundreds of people.

People that are amazing.  Generous.  Loving.  Dedicated.  Supportive.  Godly.

We're humbled.

We're grateful.

We're amazed by you.

Thank you.

My Sunshine

This is both adorable and embarrassing... but Isaiah's adorable, melt-my-heart, reaction beat out my embarrassing, why-am-I-recording-this, singing.

Don't worry about that beeping you hear at the end. The sensor lost it's signal because Isaiah was kicking since he was so happy. 

And for those that can't watch it because you're at work, I give you this- Isaiah's reaction to my singing:

I live for these moments. 

12 weeks

This weekend was a quiet, happy one.

On Saturday, Isaiah spent some time with his Grandmom Anna.  But not before we tortured him with a bath and tube change.

Look at that face!!  It's like he knows what's coming.

 It wasn't time to change his feeding tube, but we did a bad tape job the last time and when he'd cry, the feeding tube would pop up and down and it made us nervous.

It was good practice, too.  For Dave.  I supported everyone emotionally (cough cop out cough).

Isaiah hit 12 weeks old on Sunday. He welcomed his weekly birthday by sleeping the entire night before (even the extra hour!)

Then I even got brave enough to try long sleeves/pants!  I was afraid of having to manipulate his arms and legs into those sleeves/pant legs, but at the same time I hated the thought of him not being dressed properly for colder weather.  It was such a catch 22 that kept me up a few nights the past few weeks.  We're so glad to be over that! (Especially Dave, he'd like some more sleep, pronto.)

Last Thursday, we met Isaiah's physical therapist.  She was really happy with how Isaiah's moving his head and arms.  He was totally into the toy she was showing and rubbing on him; he was grabbing at it and tracking it.  (So good!)  She showed me ways to help Isaiah's legs stay straight.  He tends to bow them out and we don't want him to become frog-legged as that would was throw a wrench in the walking thing down the line.


Yup, this kid will be walking.  I guarantee it.

She is hoping to put Isaiah completely on his side (off his back, please!) the next time she works with him.  She wanted doctor clearance to do that and Dr. Bober approved of the idea.  Fingers crossed that he not only tolerates it, but loves it!

Happy Monday all.  I have a few posts in draft-form for you so expect to have them rolling out this week.  :)