Pam

Last week, we headed down to Delaware for Isaiah's most recent pamidronate treatment.  Once Isaiah turned 2 back in August, we were able to switch to a 10 week schedule (as compared to the 8 week schedule we were on previously).

We spent quite a bit of time at the Ronald McDonald House playing as we only had one extra appointment on this trip: a visit to the ENT on Tuesday.  

Back in January, Isaiah battled a terrible ear infection in his right ear...this was supposed to be a follow up for that.  That ear looked great this time (yay!)....but his left ear had an issue (BAAAAAH).  

He had tubes surgically placed in his ears when he was 6 months old.  Because of the shape of his ear canals, the tubes don't have a chance to fall out naturally like they do typically.  This isn't totally a problem, except the tube in his left ear is clogged.  We had to add in an extra appointment over at audiology where they did a hearing test.  Isaiah's hearing is in the normal range, but just at the edge of that in the left ear.  After the unexpected hearing test, we headed back to the ENT, where we were told to give drops of hydrogen peroxide in his ear for 2 weeks and then come back for a check of how things are going.  If the tube is still clogged, Isaiah may need surgery to replace the tube(s).  If not, we've bought some more time before needing another surgery....we'll keep you updated on how that check up goes!

Beyond the ear surprise, the trip was uneventful medically...thank goodness. ;-) We had lots of fun playing solo and playing with Isaiah's buddy Gavin! All that fun makes the trip fly by...

This dose of pamidronate really gave Isaiah a ton of energy.  He typically sleeps his entire ride home, but this trip he was a chatter box.  When we got home, I laid him in his crib for a nap, only to have him yelling "get up!" in minutes....it was a beautiful evening so we ventured outside to enjoy it.

Soon enough we'll be spreading out our breaks between Pam trips as Isaiah is soon THREE! (well not till August but when you're talking in terms of 8/10/12 weeks, that's pretty soon!  We're scheduled to go in 10 weeks again but his next treatment in August just may be in 12 weeks! We'll see though, we have quite a bit happening then (more info on that soon) so it'll depend on that. :)

Easter 2016

Goodness time is flying lately....I am so sorry for the continued breaks from the blog; life has taken over and is making it incredibly difficult to sit down and write even a quick post....but Isaiah is taking an unexpected late afternoon nap and I wanted to share how our Easter went!

Isaiah is at such a fun age (two and a half already, people!).  All the extra holiday fun is just soon much fun! We enjoyed dying eggs with Isaiah this year, while he pointed out the colors and placed lots of stickers on his eggs...he was very  specific as to where the stickers should go....

We had some fun leading up to Easter this year, painting and crafting!  My kid, the one who dry heaves at the smell of paint, chose to paint a paper Easter egg....and enjoyed it!

I think there will be a clothesline hung in our house some time soon to display all of Isaiah's art projects that we'll do.  I am hugely into crafts...but the absolute disgust that Isaiah showed to so much of it led me to put that creative bug on the back burner...I'm excited to see him want to color and paint now. :)

On Saturday, Isaiah got to spend some time with his Nan Nan and Aunt Tricia.  Tricia, Isaiah's daddy, and I took care of the landscaping while Isaiah played with my childhood toys with him Nan Nan!  He also got spoiled by them with a very special Easter basket of Tsum Tsums, mini M&Ms, and a Kion doll (Kion is a character from the Disney Junior show The Lion Guard).

Sunday involved lots of time reflecting, going on a hunt for Isaiah's Easter basket, and more family time.

That sneaky Easter bunny always hides Isaiah's Easter basket in the silliest places, and he always sends Isaiah on a hunt with plastic eggs filled with silly rhymes making him guess where to find his basket.  This year, he put the basket in the oven. That silly rabbit, he's lucky I wasn't planning on baking anything for breakfast and needing to preheat that oven!

Isaiah was introduced to his first Peep this year...

and he's still undecided. LOL

All in all it was a great Easter for Isaiah. We hope you had a beautiful day as well!

Please Touch Museum

I can't believe this was a month ago, but back in January, we ventured to Philadelphia to visit the Please Touch Museum for a special event called Play Without Boundaries.  

Play Without Boundaries provides families of children with disabilities the chance to play at the museum without crowds (as it opened before typical hours just for those who signed up for the event), without the music playing, and the lights turned low....for free.

We were lucky enough to meet our cousins there and got to have a tea party with one of them <3

"Helena, would you like a spot of tea?"

Isaiah had a TON of fun pretending throughout the day...buying a sandwich from some guy at the park (that's daddy;-) ) driving an ambulance, working at a train station....so much fun!

The best part of the day was playing on the accesible sail boat!

He really lit up when it would move.  We could have probably spent the whole day there. :)

A video posted by Vicky (@oibelieveinisaiah) on Jan 10, 2016 at 2:28pm PST

Isaiah also got to ride his very first carousel. Twice!

He didn't actually ride on a horse as Daddy was very nervous about that idea, so instead we snapped that picture and hopped on the bench nearby. ;-)

It was a wonderful morning playing without boundaries!  The lack of crowds was a HUGE draw for us because it meant less people for Isaiah to bump into and less kids who were excited by Isaiah's chair and wanting to touch it. :)  The Please Touch Museum has this event four times a year...and we'll be watching for the next one. :)

Our Recent Pam Trip

In mid-January, we had our most recent pamidronate treatment.  Isaiah and I were lucky enough to have daddy come along!

The first day is always busiest since the nurses need to weigh Isaiah, get his port accessed, get blood work, etc...but he handled it all like such a champ this time!  Even after waking up ridiculously early...

Once his Pam was flowing, we saw Dr B and his PA, gave them the run down of everything, and entertained ourselves with our buddy Gavin and his dad.

Once we were finished at the hospital, we spent time napping in our room at the Ronald McDonald House (fun fact: they just finished renovations and we got to stay in a new room! Funner fact (I know funner isn't a word but it just flows, ok?): We stayed in the same room that Dave and I stayed in when Isaiah was first born and transferred to DuPont after he was born.)

and by napping, I mean I got to nap while Dave and Isaiah cuddled and played on the iPad because WHO NEEDS SLEEP? Not this crazy two year old.

We "rested" and had fun in one of the play rooms at RMH until it was dinner time and it was there that Isaiah rode this way cool rocking horse!!

I've eye-balled that thing every trip, but was always too intimidated to put him in...but with Dave's help, we successfully got him in and he loved rocking and yelling "giddy up!") ...and I even put him in again the next day by myself!  Woot woot!

After dinner, Isaiah was worn out (thank goodness...), and slept like a rock.  Day 2 of Pam (Isaiah's infusions last a few hours a day for 3 days) went off without a hitch.  We actually made record timing and were out of the hospital before noon that day! (Seriously, it was a record.)

We had lunch over at the House...

And then treated ourselves to dinner out at TGI Fridays (yay gift card!).  Isaiah was so cute at dinner, playing happily with his Captain Hook toys....acting things out, saying "tick tock tick tock..."

Showing us that he is really growing up!

After dinner, we cleaned up our room and got it ready so that we could check out of the McDonald House in the morning before headed up bright and early to the hospital and then it was time for the last day of Pam!

Isaiah spent time playing with his toys, had an echocardiogram done to check his heart (still waiting on the results but the tech saw no abnormalities...woo hoo!), and before we knew it, the morning was over, they were de-accessing his port, and we were out the door and on our way HOME.

The next few days required a certain someone to catch up on sleep.....even in the grocery store. haha :)

This week we've been dealing with a suspected tibia (lower leg) fracture.  His doctors know and we're caring for it at home thus far, splinted and giving medicines prescribed by his OI docs....the nights have been tough but his days are happy.  We're hoping to avoid X-rays on this one and praying for continued healing. <3

Oh, and Mr Isaiah turned two and a half yesterday!  I can't believe it's only 6 months until he turns 3! Time sure flies when you're a parent...



Happy Valentine's Day! <3

Hi There!

Sorry for the radio silence on the blog...I hope you haven't totally given up on me!  We're doing well and Isaiah is doing great! We just had another round of Pamidronate last week.  Isaiah has been battling a very ugly ear infection that we finally turned a corner on over the weekend...thank goodness for an effective antibiotic!

He's smiled and laughed through it all during the day...and we're grateful.  (The nights have been another story!)

I had an unofficial new years resolution to get my butt back to blogging regularly but clearly I couldn't keep up with that...even through the first week of January? Lordy!  So I am going to shoot for one post a week and see if I can keep up with that. :)  If you'd like to see Isaiah more, I do post frequently on our public instagram/facebook pages. :)

I have some posts started on our adventures at DuPont for pamidronate (and a shunt check that happened right before Christmas) and The Please Touch Museum (so much fun!), and playing in the snow so hopefully I can get them written and shared with you...so many cute pictures!  

We hope 2016 is treating you well! :)

PT Fun

Isaiah has come a long way in terms of his physical therapy.  Lately our focus has been on two things: head/torso control and reaching.

Isaiah can be a stubborn boy sometimes...not sure where he gets that from.... :-P but he's especially stubborn with tummy time.  We had a system of working on it on an incline on the floor but he refuses to lift or hold his head up...

But he will keep his head up when on me or on an exercise ball so that's what we've been focusing on.  We spent every day for about 3 weeks (then the holidays happened and we took an unintentional break.  whoopsie.  Back to it today!) spending some time on the ball, and quickly learned that he will work for Disney Junior. 

We've heard every song from his new obsession, The Lion Guard, more times than I care for, but if it keeps him inspired to hold himself up, bear weight on his arms, and enjoy it...well, I'll listen to it 500 times a day if I have to.  

Isaiah's PT has also given us a great tip to pause the video when he needs to rest, as that pause pushes him to keep himself going (because he wants to watch and sing along).

Isaiah is tolerating 5 minutes of tummy time without a break, holding his head up the entire time, and that's a huge win for us.  He's even rolling over onto his belly more when not working on tummy time, choosing it because it's comfy, but we just need to figure out how to get him to get the confidence to put his head up when not on the ball or on us and he'll be golden!

The other skill we're having fun mastering is reaching...reaching to the point of getting him to lift a cheek off the ground.

We're hoping this will strengthen his core and get him on the way to "scooting" around independently.

He is so insanely inspire by everything Lion Guard....so do me a favor and don't tell him this toy is from Lion King haha.

We just had a two week break from all things therapy thanks to the holidays....although we enjoyed the break, it'll be nice to get back into the swing of things with Isaiah's physical therapist, occupational therapist, and speech therapist this week.  We're excited for more ideas to continue to implement into our daily routines. :)

Happy New Year!

Happy New Year, friends! 

 I'm over here slowly taking down everything Christmas and wishing it hadn't gone so quickly....We enjoyed every last second of Christmas break.  We spent lots of time cooking and baking in Isaiah's pretend kitchen area,

singing songs and banging the drum...peek a boo!

and stealing momma's water bottle while daddy passed out from playing too hard (haha love you daddy)...building blocks is exhausting guys.

Christmas break was an excellent time seeing friends and family and getting time to hang out just the three of us at home with Carl was wonderful.  We hope you were able to enjoy some time with loved ones!