Wednesday, December 31, 2014

2014 Highlights

As 2014 winds down, I couldn't help but make a list of of our favorite moments of this year....some were bigger than others but each has been equally important to us. So without further adieu....

Top 10 Highlights of 2014

10) Switching the the car seat from the car bed: Remember when Isaiah used to travel in a car bed?

Early in the year, back in February, we made the switch from car bed to car seat and it was a major game changer.  No longer were we having to transition Isaiah so much (from the playpen to the bassinet and from the bassinet into the car bed, -all while attached to his constant c-pap and pulse oximeter- and then do it all again once we got to our destination.  It was exhausting.).  We were able to put him in his car seat in the house and just click him in (like a typical parent!).  Currently, we are working on transitioning Isaiah to his convertible car seat! Oh snap!

9) Learning to play: For Dave, Isaiah learning to play his drums was a big highlight of the year.  It is pretty fabulous.  This is the first video I got of him using a drumstick to hit the drums.
 It may seem silly (I thought he was kidding at first), but it is highlight for sure.  It's hard for Isaiah to discover things on his own and the fact that he just hit the drum like he did when I handed him the stick was huge.  He's now learning to roll cars (instead of throwing them) too, so he's really developing in terms of play.

8) Toes, Toes, Toes:  He reached his toes for the first time and I caught it on video!  And it took months, but then he was able to eat them!!!
Hooray flexible boy!

7) Beginning to wean Isaiah off of his machines:  Remember when Isaiah used to always have tape on his face and tubes up his nose?  Yeah, me neither. ;-)

It's true though.  I used to cut duoderm (the tape that went directly on his cheeks) and tegaderm (the clear tape that held the tubes on his face) down to fit his little cheeks and then one of us would have to hold his arms down so he didn't yank it right off.  It was such a fight sometimes.  Weaning him off the machines has given us so much freedom.  Isaiah does still use his c-pap and pulse oximeter monitor at night, since he was diagnosed to have obstructive sleep apnea, but no tape is needed.  He pulls the cannula (the green tube) off from time to time, but for the most part he's a good boy.

6)  Remember when we were in our local paper promoting Wishbone Day?  How about when we were on ABC27 spreading OI awareness?!?!

Both were highlights for sure!  Being in the paper introduced us to two wonderful guys, Justin and Earl, who are both local and living with OI.  OI doesn't stop them from living wonderful lives, and that is one reason that they are great role models for Isaiah to look up to as he grows for sure!

5) Water Therapy:  It's been life-changing.
We wanted to start as soon as possible, allowing Isaiah to swim and move in the water is very good for his body- it exercises his muscles without any pressure on his bones, but we had to wait until Isaiah was no longer on the c-pap constantly.  Ever since the first time in the water, he's loved it.  Isaiah kicks and splashes.  He holds his head up.  He sits up on the ramp, chest-deep in the water, and reaches and pulls on toys.  We look forward to Isaiah taking steps in the water (that's a far off goal. Think 2016? lol)....but we know it's an activity that will be on the highlights list for years.

4) Taking out the NG tube was HUGE!  For anyone new to the blog this year, for Isaiah's first 5 months of life, he ate through an NG-tube.  In his old pictures, it's the yellow tube going in his nose.

It led down to his belly.  We used to have to hook up his milk/formula to a machine that would feed him.  It started out because he used to breathe soooo fast.  He still does breathe quickly, but back then he was breathing an average of 100 breaths per minute, which would cause him to choke when he tried the bottle.  We had to wait for him to get stronger, so we did.  Teaching him to drink from a bottle wasn't easy.  It took time and patience but once he took to it....on Christmas Eve of 2013 I believe?  From then on he just got it.  Pulling out that tube for the last time was life-changing.  No more bags to fill or tubing to prime.  No more trying to talk to Dr B to figure out the correct number of mL of formula to feed Isaiah at each feeding.  No more talk of surgically placing a g-tube; he doesn't need it!

3)  Being featured on Go Shout Love:  Those ladies.  Those lovely loving ladies. Shouting love for babies with rare conditions.  They helped us in so many ways.

This was done by Monique Dong.  It is an illustration of all 7 of the Go Shout Love kids of 2014.

They raised money for us to help with medical/travel expenses.  They talked to Orbit Baby and got an amazing car seat donated to us.  They showered us with love.  They helped to raise awareness of OI!  They practically introduced me to another OI mom from another state (who I introduced to one of our support groups).  They introduced us to 6 other families fighting rare conditions and showed us how similarly we live our lives.  And then they spoiled all of us throughout December with the Go Shout Love 25 Days of Christmas.

2) Wishbone Day:  For those new to the blog, Wishbone Day is the international day of awareness for Osteogenesis Imperfecta.  It's a day to wear yellow in honor and in celebration of those living with OI.  This year, with the help of my awesome friend Fallon and Senators Folmer and Smucker, we made Wishbone Day official in the state of Pennsylvania.  We have an official Seal and everything!

1)  Isaiah's first birthday:

Especially during Isaiah's first 6 months of life, Dave and I were on edge.  In the back of our minds, we were scared Isaiah would die.  From respiratory failure, aspiration, pneumonia, or something similar.  I once almost had a nervous breakdown over hiccups.  I wish I was kidding.

Isaiah made it.  He's alive and we're so... Lucky.  Blessed.  Amazed.  Happy.  Grateful.

His birthday was big.  Every first birthday is a major milestone, but when you had thoughts and fears of your baby not living?  When your baby turned blue right before your eyes at 1 month old?  Thought that he may not hit that milestone and then he did?  HE DID!  Wow!  It deserved to be celebrated and celebrate we did!  80 people came and celebrated with us.

This year has been fabulous.  Yes, there were some set backs.  Yes, there were some broken bones.   But that's not what we'll think of when we think back on 2014.  We'll think about the happy times, the positive changes and transitions, and how Isaiah has grown.

Thank you so much for supporting and loving us throughout 2014.  Tonight, we will not just be excited for another year to begin, but we will be celebrating the year that has passed.

Cheers to 2014! Have a wonderful and safe night tonight!

Sunday, December 28, 2014

Christmas 2014 Recap

We had the most magical Christmas!  It was filled with family, food, fun, and so much love!

For 25 days of December, we were blessed by Go Shout Love.  We received so many thoughtful gifts.  We could tell that the GSL ladies and those that donated really have gotten to know our family based on the gifts we received.  Gifts that Isaiah could play that I could wear...handcrafted cards that made gift giving easier... Thank you so much Go Shout Love!! <3

But do you know what Christmas wasn't full of?  Any broken bones (at least as far as we know).  OI, we thank you for letting us enjoy our Christmas season.  We thought you were going to spoil things on Christmas Eve when Isaiah took a topple forward (while trying to sit up up UP) on our neighbor's couch, but no, after a cuddle and a nap, we were back to normal.  Woo Hoo!  

Christmas morning was so much fun.  Dave and I were excitedly waiting for Isaiah to wake for his bottle so we could bring him down to our family room to show him that Santa came.  Isaiah finally woke at 5:30 (ha), but he was sure not a fan of our plan.  We put his singalong on the tv and I am sure that's the only reason he didn't cry. #notourbestparentingmoment

We missed our family traditions last year and we were eager to start them with Isaiah.  There's a reason that we wanted him up early though- we had to hit the road!  Breakfast at Baba's!  

(side note: Isaiah's hit a growth spurt!  All of a sudden none of his 0-3 pants fit anymore.  They had been fitting perfectly.  Woo hoo! Time to finally clear those last 0-3s out of his closet.)

After a wonderful Christmas morning at Baba's house, we headed to Nan Nan and Pop Pop's house.

There Isaiah was greeted by a HUGE pile of presents (spoiled boy).  

He was exhausted from the early wake up and lack of naps so this year daddy and I had to open most of them.  After almost all of the presents were opened, we had dinner...which included practically all of Isaiah's favorite table foods- corn, mashed potatoes, carrots, pudding, ice cream, cookies....spoiled.

I loved the fact that Isaiah had his very own spot at the table.  Such a big boy!

After dinner, Isaiah opened his big gift.  It is a big Magic Kingdom (Disney World) Little People toy.  Isaiah LOVED it.  He literally tried to crawl inside of it...that's our boy! (He's already loving Disney World!)

He didn't last long after that though.  He ended up passing out on the floor and then in his daddy's arms...

Funny thing was he was wide awake for the entire car ride home (I imagine he was wondering where are we going next?!).  Once we were home, we put him straight to bed and boy did he sleep...I swear, it's three days later now and I think he is still in recover mode.  :)

This Christmas really was amazing.  We're grateful to everyone who was a part of it.  We hope that your Christmas was just as fantastic!

Wednesday, December 24, 2014

Monday, December 22, 2014

Christmas Countdown

We're in the final countdown to Isaiah's second Christmas!

And clearly we're excited. ;-) ha.  We're been busy baking (more) cookies (Isaiah loves the dough-making process, Dave loves the eating process. Ha.), watching lots of Christmas movies and sing-a-longs, wrapping presents, and singing carols. 

This weekend we spent time with one of Isaiah's favorite aunts and went to Isaiah's uncle and aunt's house to celebrate Christmas with the rest of his daddy's immediate side of the family.  I literally took only one picture that night....and it involved Isaiah playing with his new play cell phone that he received from the 25 Days of Go Shout Love Christmas.

I can't believe there's only 3 days left until Christmas Day!  We have been so insanely grateful for this has been so magical!  We've experienced some incredible opportunities, made some amazing memories, and have just eaten up every jolly moment.  Sometimes I can't help but tear up when Isaiah gets enchanted by Christmas lights or smiles when he hears certain songs...he just loves it.  

We've put his future MRI to the back of our minds so that we can fully enjoy this next week as a family.  We've scheduled it for until then, we hope to be worry-free!

Like, put-a-Mickey-on-your-head worry-free.  Or got-you-nose worry-free.

My posts may be pretty sporadic over the next two weeks but we'll definitely be checking in to share how the holidays are going.  We hope that if you celebrate Christmas, that you enjoy every moment! 

Friday, December 19, 2014

Isaiah is a Tiny Sparrow!

Months (and months and months) ago, through a local special needs group on facebook, I found out about this amazing organization known as The Tiny Sparrow Foundation.  They provide photos, that they call "pictures of hope", to families of children with life-threatening illnesses,  so I applied for a Picture of Hope.  

Isaiah was accepted immediately!

Through emails, they got us in contact with a local photographer, Melania Marta, who (after, what? 4 rescheduled sessions? She's a patient lady!) took some amazing photos of our little family at our local park.  Isaiah was a serious crab-monster, to the point that we ended the session early, but Melania is clearly one talented photographer because she captured some amazing moments for us.

Seriously.  She even got one of his top teeth!

We're extremely grateful for these fantastic photos! 

This past weekend we received a beautiful personalized photo book.  We will treasure it.

The timing was perfect; we were able to use two of the photos on our Christmas cards.

Thank you so much to the Tiny Sparrow Foundation and Melania Marta Photography.  You have given us a beautiful gift that we will forever love and treasure!

Tuesday, December 16, 2014

Pam Treatment Time

This week, Isaiah and I have been having fun at both the Ronald McDonald House and AI DuPont.  Currently, we go there every 8 weeks for Isaiah's Pamidronate treatment (I often call it PAM for short; it basically helps to strengthen his bones).  If you follow along on Isaiah's Facebook, you know this because I am an over-sharer. :)

For the most part, everything has gone smoothly.  The nurses easily accessed Isaiah's port and his pamidronate has really helped to make him feel great this go round.

Like, really great.  Like pass-out-in-the-middle-of-anything great...

While Isaiah plays and watches Christmas shows, his doctor and I chatted.  Isaiah's head has continued to grow off the charts, and although it's a steady growth, it's concerning.

So we are now back to the hydrocephalus.  I don't understand enough about it (because I was trying to avoid it lol!) to really give too much of an explanation, but I know there's fluid in the head and it affects the brain...often, surgery is needed to place a shunt to relieve the pressure and get the fluid out.

Isaiah does show physical signs of hydrocephalus.  His head is larger, his veins show, and his eyes have the "sun-downing" look (that means that you can see the whites above his pupils...but he can move his pupils up and does often...if he had hydrocephalus, I am under the impression that he'd cry when attempting that from the pain of the pressure.)

But he doesn't show all the signs.  The top of his head is still soft; it's not rooster shaped (common from the pressure).  He is very happy.  He doesn't vomit or scream like in scenes from The Exorcist.  He is cognitively doing extremely well.  He is talking, singing, dancing, pretend sneezing....

The physical signs of hydrocephalus that he does show are common in kids with severe OI.  Some do develop hydrocephalus, others just have big heads (to fit those fabulous brains).  I am hopeful that we are just in the big-brained crew...

It's now time to figure things out.  During day 2 of PAM, Isaiah had an ultrasound done.  

It was inconclusive but did show some enlarged ventricles (I'll pretend I know what that means...).  The doctors now want to do an MRI to investigate more.  Sigh.  I'm not surprised.  I was doing ok with it until the doctor said "I just don't want anything to happen to Isaiah."  I have been repeating that sentence in my head and focused on the fact that he is worried...sigh.  To top it off, I read his report and it says "moderate to severe form of hydrocephalus with question of hypoplastic corpus callosum."


I should stop reading reports.

After I read that last night, I took a deep breath and gave Isaiah a sponge bath (had to wash that ultrasound goop out of Isaiah's hair.  He does have a reputation to uphold. :-P  He's learning to comb his own hair...

To lift our spirits, we went back to the hospital to visit some old friends, the night staff NICU staff!   We had stopped in earlier to see the day staff too.

It was soooo great to see everyone that we got to see...quite a few nurses that cared for Isaiah many days/nights.  I love being able to stop by and show them how well he is doing...and that we didn't (nor will we ever forget) how much they helped us.

We also saw the new part pf the hospital all decorated for Christmas!

Anyways, today we are finishing our last day of PAM for this cycle then back HOME.  Hooray! We're waiting to hear when his MRI is scheduled for, but it sounds like we won't have another 2 month break from seeing this place anytime soon.

It's ok...we like it here.

Sunday, December 14, 2014

Christmas Adventures

Get ready for a picture-heavy post... :)

Thanks to Variety Children's Charities (Philadelphia branch), we were able to visit Sesame Place and celebrate their Very Furry Christmas. 

 It was open exclusively for this event and you could only go if you had tickets. 

It was awesome.  We weren't sure how isaiah would handle it- the cold, the characters, the lights....

But he loved it all! Every detail!  Especially the characters...

He couldn't take his eyes off of them. 

Because rain was in the forecast, it was very empty which was perfect for us!  And it only drizzled briefly!)

One week later, we headed to a local Christmas activity at Kitchen Kettle Village-dinner with Mrs Claus!  

(I love how isaiah is peeking out like "cheeeeeese!!!")

Not only was Mrs Claus there, but Yummie, a GIANT gingerbread man was too!

Isaiah was quite intrigued. 

Yummie came up slowly...and Isaiah loved him!  They clapped together...

High fived, and had a great time together. 

After dinner, Mrs Claus read The Night Before Christmas and we sang with both Mrs Claus and Yummie. 

We went with friends and had a fantastic time.

Goodness, this Christmas season has been amazing. I am sitting at the Ronald McDonald House near DuPont, reflecting and writing this while Isaiah sleeps (sort of, he keeps waking crying. Sigh, poor baby.). Today we have day one of his Pam treatment. Let's hope his port is easily accessed and they get his medicine flowing so that he can feel better pronto.