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!
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. :)
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!
During the month of August I was a blubbery mess for a second year in a row because I felt so blessed. Another year with my baby that was predicted not to live more than a few moments. That heart-in-the-throat feeling is becoming more and more distant and we're so grateful.
9.) Respite care: Dave and I got to go on our first date since Isaiah was in the NICU! For those wondering that timeline, TWO YEARS.
Respite care has been wonderful for all three of us; it gives Dave and I time together and it gives Isaiah social time (with nurses available if needed). We've taken advantage of that amazing opportunity twice now and hope to again in the new year.
It all started because I sent the above side by side shot of Isaiah around Valentine's Day to Dr B. and he noticed how much Isaiah's head size and shape had changed. Speaking selfishly, this diagnosis put me into a bit of an anxiety riddled depression....I was so afraid of the diagnosis itself, the surgery, the possible shunt malfunctions of the future, etc....and it just hurt my heart that my baby had yet another diagnosis...
7.) But then he had his Shunt surgery: And it was a game changer.
Isaiah made it through his surgery without an issue. He was put in the PICU as a precaution post-op and got kicked out of there because he really did SO well. It was amazing that he didn't need any breathing support and that he was just in such a good mood post-op....and since then his head size has gone down 1.5cm (and we were told it wouldn't go down, that growth would just plateau for a few years), the veining around his head calmed down, and he's talking more. Pictures of his brain show just that, BRAINS, (ALL THE BRAINS!) not spinal fluid all over.
Wishbone Day is always a highlight of our year....to have so many people turn the world yellow for Isaiah and all of those living with OI is AMAZING! It is a beautiful, cheerful, and day full of love! (And I CANNOT wait for it this year!)
5.) Isaiah's facebook page gaining popularity: Back in September, I was at DuPont with Isaiah and all of a sudden I was getting tons of notifications on my phone. It turned out that one of his videos started getting shared, shared, and shared again....Within one week we went from a little less than 2000 followers to 35,000. Three months later and here we are.
70K people follow Isaiah's page. 70,000 people. Tens of thousands of which had never heard of OI until they came upon Isaiah's page. A few who had OI themselves or someone in their family had it and they never saw anyone else with it. Thanks to Isaiah's page, they felt less alone (even more so because I was able to introduce them to support groups online). Thanks to Isaiah's page we are really spreading awareness of OI. It's extremely intimidating at times, and worries me because I know it's the internet and not everyone is kind on the internet...but we continue to post and share Isaiah's life because we want others to understand what OI is and that life with OI is NOT sad or doom and gloom. It's LIFE. And life is what you make of it, friends! We choose joy in our life and we hope you do too!
By the way, three months later? That video that got shared and shared and shared....has continued to be shared...
69,456 times. Liked by 90,696 people. Has 4.4 MILLION views and has reached over 11 million people. And counting.
Jaw-dropping.
4.) When Isaiah got his Scooot- This was the year he got mobile!
The Scooot was a life saver for us. Isaiah's doctors weren't sure if a manual chair was the right choose for Isaiah. They were concerned that the bowing in his arms would cause him to fracture if he pushed himself and that maybe a power chair was the way to go to move independently....but thanks to Jack and his family and friends, we have the Scooot, and Isaiah was able to move it right away. I took many videos and photos of Isaiah pushing himself around the house and when Isaiah was inpatient for his shunt surgery, I had the chance to show his doctors the videos of him pushing himself.
And there were no more doubts on if Isaiah could push himself.
And it was more than magical. He loved seeing all of the characters from TV in person (His jaw literally dropped when he saw Mickey for the first time) and rode his first theme park rides! To see Disney World through Isaiah's eyes was indescribable.
Although we still have the travel C-Pap in the house (as a precaution through this flu season), Isaiah was officially cleared to stop using the C-Pap this year. His obstructive sleep apnea is now mild and he no longer needs support. To go from needing it 24/7 two years ago, to only at night one year ago to now? Amazing. Packing is so much easier now! lol We're so grateful for the c-pap and how it made Isaiah stronger but we are grateful to finally put an end to that chapter of our lives. <3
Isaiah's wheelchair gives him freedom inside and outside our home. It's so amazing. I had a number of people share that they expected me to be sad that Isaiah was getting his chair...and I was honestly expecting to feel some sadness...and the day he sat in it for the first time, there were tears...but they were absolutely tears of joy. To see Isaiah excitedly roll down the hallway to our Christmas tree, to see him roll up to his book and toy shelves and yank everything off of them, to have him make his way up to what catches his eye in stores? It's incredible.
2015 was a year full of changes and excitement for us, and we hope you had a positive year as well.
For fun you can check out our 2014 highlights here and our 2013 highlights here....but for now, we'll see you next year! :-p
Christmas 2015 is officially in the books! What a Christmas it was!
This was Isaiah's third Christmas. This was the first year Isaiah could independently make his way out to the presents. Last year, Santa left the presents in the family room and we opened them downstairs, but Santa knew leaving the gifts upstairs, like Isaiah's First Christmas, meant Isaiah could discover them on his own. <3
Watching his face light up when he rounded the corner from his room to see the tree surrounded by presents was such a joy.
Isaiah was very excited to see his kitchen table. We love that it's accessible!
Isaiah emptied his stocking and opened his gifts, all while yelling "Merry Christmas! Merry Christmas!"
Once Isaiah was done opening his gifts, we had some breakfast and were on our way to see family!
First stop was Baba's house:
Yep, Isaiah got some iPad time. He was a bit grumpy because he was so warm....the weather was very unseasonably warm. He eventually did get to his gifts though...
After breakfast and time at Baba's house, we were on our way to Nan Nan and Pop Pop's house.
Thankfully I never ago through the clothes in the diaper bag as I had left a summer outfit in there! The clothing switch helped Isaiah's attitude quite a bit!
This snack tray put together just for him by his Aunt Tricia helped too. ;-)
A Lenox tray. LOL!
We had dinner pretty soon after we arrived, and then it was time for Isaiah's last pile of presents! (spoiled boy!)
By now Isaiah understood the drill of opening presents and did a good job opening most of them.
His last present was/is by far his favorite- a piano just his size!
Isaiah had a wonderful Christmas day surrounded by family and filling his belly (he even ate eggs and ham! If you know the toddler-eating struggles I've had with him lately, you know the win that this is!)
We hope your Christmas was wonderful as well! I'm hoping to have a end of the year recap before the new year, but we'll see, we're making lots of memories this week. <3
During our stay at the McDonald House in September, we attended a "House meeting" where they mentioned that they needed a family to be the feature family for their Share a Night event. "Share a Night" is an event where they have a lighting ceremony of their Christmas light display. It's a fundraising event where, for every $15 donated, they added a light to the display.
The Ronald McDonald House has been our home away from home for over two years now. They've done so much for us from giving us a bed to sleep in to a warm dinner to fill out bellies when we are exhausted after a long day over at the hospital, from gifts for Isaiah in the Treasure Chest room to giving us the ability to spend time with other families, families just like ours...so I asked if we'd be able to help and be the feature family....we are there quite often after all, and will be for quite a few years.
The night got here before we knew it and we headed to Delaware for a night of fun....and not a night at the hospital. ;-)
Why yes, we did hang out with Ronald himself!
Do you see that crowd? That's not even half of the people. It was so jam packed, full of so many supporters of the House. Pam Cornforth, the President/CEO of the RMH of DE, led a great presentation, including a short speech given by yours truly, and then LIGHTS!
We were really grateful to be a part of such a wonderful event.
The picture above is of "Sponsor Island". It was so cool reading the signs and seeing all the names of the companies who support the House.
It was a great night to enjoy the lights and it was wonderful seeing Isaiah push himself around to see everything. :)
It was an honor to be the feature family; I hope we were able to help the House as they have helped us in our journey with Isaiah.
