Wednesday, April 26, 2017

Straight Tibias!

Hi there! I wanted to make sure I stopped in to share that Isaiah's surgery was a success!



Those super bowed tibias are a thing of the past! Here's a picture of Isaiah getting his first look at them during one of his follow ups.


It was a long 6 weeks in the splints, and he couldn't wait to SCRATCH! haha


While Isaiah was splinted, we kept him busy outside of the house as much as we could (even quick trips to home depot! haha). He handled them much better than I expected!

As for how his legs compare from before, I'll let you see for yourself if you haven't seen these pictures on Isaiah's social media pages...



Straight legs!  He now has AFOs too so that as he learns to bare weight on his legs, his ankles won't give out.  AFO is short for Ankle Foot Orthodic.  He really likes them, calls them his "socks", and asks for them all the time! Which is great because he should be wearing them all the time. :)





Isaiah just recently got cleared to resume his water therapy so I am hopeful that will inspire him to realize when he is now capable of!  He does still need rods surgically placed in his upper leg bones, the femurs, but we're going to give him some time to fully heal before doing that.  

For now, we are just finishing up another round of pamidronate and then it's back to the grind of life. :)

Wednesday, February 8, 2017

Dear Isaiah

My dearest Isaiah,
I can't believe we're here. As I type this on my phone, you are laying next to me in bed at the Ronald McDonald House. I'm hearing the rhythm of your breathing and am overcome: tonight is the night before your fourth surgery- your first rodding surgery.

I remember seeing your bowed tibias (lower legs) on ultrasound. I remember the doctors saying they were curved into acute angles. I remember holding my breath at that fact. But tomorrow? Tomorrow your orthopedic surgeon is going to straighten them. He's going to place rods in them to stabilize the bones.

I've only ever wanted this for you since I learned of it...until the doctor recently gave his go ahead that he felt ready...then my mama nerves kicked in and I've questioned making this decision for you. I hope you understand we're doing what we feel is the best thing for your quality of life.

I love you so incredibly much.

 Today we had a few appointments before your big surgery, had time to kill between them, and bumped into one of the NICU doctors who took such wonderful care of you at the beginning of your life. He looked so very proud of you, of how far you've come. He was even beaming through your temper tantrum...(lord help me. 3 is so very hard.)...it was so perfect that we bumped into him as he reminded me of the beginning of your journey...it's like we blinked and here we are: You defiantly trying to go go go, independently in your wheelchair, and as frustrating as it was, it is such a gift. It was such a gift to have to chase after you through the halls of the hospital today. And omg did I have to chase you today...

Isaiah, I remember your beginning, constantly questioning, constantly worrying and holding our breaths, wondering if we were making the right decisions....and here I am again with my doubts and concerns. But you've got this. Your doctor has got this.

You are going to rock this.

I believe in you, Isaiah. And love you forever and always.

Love,
Mama <3

To my poor neglected readers...I'll do my best to update. I'm having trouble adding pictures to the post. Boo. But check us out over on Facebook and /or Instagram for updates and pics! <3

Sunday, January 8, 2017

Happy 2017

Happy New Year! I cannot believe it's 2017 already...where did 2016 go?  If you only follow here on the blog, we kind of dropped off the face of the earth back in September....

Blogging, parenting two littles, and juggling the lemons life has been throwing my way has taken over my brain.  I used to find time to blog when Isaiah would nap or go to bed for the night....but he no longer naps regularly (BIGGEST SIGH EVER) and Jacob is still working on his nap schedule.  In those rare moments when they are both down, I totally sit in the quiet...

and just sit.

If you follow us on social media (you can see my instagram account on the right side of our blog), you know we've been chugging along and keeping busy.

For Halloween, Isaiah dressed as his favorite Disney villain- Captain Hook!


and of course Jacob was his trusty sidekick Mr Smee...



I threw the costume together myself.  Because of Isaiah's size, most of what is available in stores is really babyish looking...so thanks to the Dollar Tree (the hook, hat and sword), Amazon (the ruffled shirt), and what we had around the house, we DIYed a pretty fun look for him.  His daddy created the "Jolly Isaiah" (Hook's ship is called the Jolly Roger).  It was even on little caster wheels (you know those wheels that come with plastic drawers?  Well I never use them and yet continue to hoard them.  Glad I've kept them around! It really made the ship "sail" smoothly.

Before we knew it, it was Thanksgiving.



We spent the holiday with family and Isaiah cracked up at his shirt the whole day... "turkey. pie. nap. rePEAT!"

We went right into celebrating Isaiah's favorite holiday on the day after Thanksgiving...



and then we hit a snag...a week before Christmas, Isaiah caught the dreaded stomach bug which hit him HARD and so quick.  It started at 10pm, when he had been sleeping for hours...and thank goodness his daddy heard him choking because I had been so exhausted that I didn't wake.  Isaiah can't yet independently sit up so when it hit him, he couldn't get up to get it out and he was in such a panic that he didn't think to turn on his side.  Dave luckily picked him up....it was a mess....but the alternative would have been much worse.  He ended up waking about 6 times total overnight to throw up.  It was just awful.  We started laundry at 3am because we ran out his bed protectors and had to get creative....the next morning I gave him some Tylenol and it helped perk him up a bit.  He hung out with us in the living room watching Christmas movies on the couch and falling asleep for the rest of the day.  I didn't force him to eat or drink, but I constantly offered.  When he asked for anything, he'd throw it up as soon as it was swallowed (no matter the amount).  Awful. His daddy had the stomach bug just a week before and all he wanted to do was sleep....so we allowed Isaiah to do the same, thinking it was good for him...but we soon learned that dehydration sets in much much faster in a child than an adult.  When he awoke in the morning, he was still refusing to eat or drink, very sleepy, and whenever we'd pick him up, he's talk in crazy jargon.  I got panicked that maybe we were wrong on thinking it was a stomach bug and that maybe it was his shunt malfunctioning (Isaiah has hydrocephalus and a shunt in his head to alleviate the pressure.  Shunts can malfunction and cause pressure on the brain.  Symptoms vary person to person which makes it very hard to guess when they are malfunctioning.)  This was a Sunday morning and I truly didn't know what to do...but thankfully Isaiah's favorite doctors responded to my texts/emails, I spoke to the neurosurgeon on call at DuPont, and and was advised I take him to DuPont (I considered taking him locally but we thought that the hospital that had previous images of his brain would be best)....so I did.

Thankfully, since I had spoken to the on call neurosurgeon already, Isaiah was put on the list to be seen in the ER so he was taken literally right away.

Taking a medically complex child to an ER is difficult.  OI is rare.  Because of the severity of his OI, he breathes differently.  Everything felt "worse" because of his being sick on top of his every day issues.  I had to be confident in my answers to questions so the staff didn't over-react (that sounds rude....but what i mean is, Isaiah's breathing looks labored to the medically-trained eye, but it's not it just looks that way because of the shape of his rib cage.  If I sound unsure, they are unsure and it just snowballs...).  Thankfully they got blood work right away and swabbed his nose to test for sickness.  The nurse tested his glucose level.  It wasn't even registering on her monitor- that's how low it was.  She sent it to the lab with a "stat" label for an exact number and asked if he's had issues with his sugar levels ever before....no.  He gets blood work done regularly before pam treatments.  It's never been dangerously low, but he hadn't been able to keep anything down in over 36 hours.

His level came back: 20.  The lowest they wanted to see the glucose level is 60.

I dont know how he wasn't seizing.

There was a swarm of doctors and nurses.  They accessed his port (he didn't even make a peep where he'd normally scream his head off).  The nurse very very quickly loaded him with fluids and what she called "a sugar shot" and just like that, he woke up, started crying, started talking.

Results from his nasal swab came back and he had tested positive for rhinovirus....which sounded scary to my panicked mom brain but turns out that's just a cold....(cough cough just call it that cough cough).

Isaiah was admitted because he was so very severely dehydrated.

We spent the next 2 nights inpatient.

I learned that a person who is 18 pounds typically drinks 24 ounces in a day....but my son is not typical.  Isaiah was getting that amount through an IV in his port.  After over 24 hours, his face and feet started to swell.  His daddy and I got concerned that we were overdoing it with the fluids....yes he needed them, but 24 oz a day just seemed like it was too much for his body.  Trying to explain that to doctors (when i am just a stay at home mom, no medical background)  is not easy, but thankfully,  the doctors heard me out and agreed to back off.  It was a bit of a tug a war over it, back and forth....because I lacked confidence on Isaiah's typical fluid intake....but eventually Isaiah agreed to eat and started to drink more like his normal and I asked to discharge.

I've now observed that Isaiah typically drinks between 18-20 oz per day. :)

The few days left before Christmas and the holiday itself were a whirlwind.  We let Isaiah rest as much as possible and thankfully he got his appetite back (and then some).  He went right back to singing Christmas songs and watching movies (He took a liking to Elf while in the hospital...I was watching it when I thought he was asleep ha...so we watched that quite a few times.).



Christmases of the past usually involved a lot of travel for us, but with losing my dad earlier this year and everything that occurred within just that week, we decided a quiet Christmas at home was just what we needed.

Santa, and quite a few sweet family members, spoiled all three of our little loves.


Isaiah loves his very own dollhouse and Jacob loves his activity table...and Santa never goes wrong with treats for Carl lol...

Dave and I felt extremely grateful we were able to be home together with our little family.

The rest of the break was recovery mode for the entire household...with all that togetherness and time of sharing, Isaiah spread his cold to ALL of us. I can laugh about it now...ha

and now it's 2017.  Geez I still can't believe it.  Along with the hustle and bustle of life with a baby and a toddler, my mom has been sick and in and out of the hospital....that's taken over a bit of my brain.  I don't so much want to share her medical issues without her permission but it's been so hard on her and my sister and it is difficult for me bc we don't live as close as I'd like us to.

On top of everything, toddler life with OI....this year should bring BIG changes to Isaiah's life in reference to his OI- namely, RODS.  Isaiah is due for his next dose of pamidronate soon and along with that we have a Dexa scheduled.  The Dexa will show his doctors Isaiah's bone density and will give a clearer picture of how well Isaiah's bones will hold rods.

I also want to focus on Isaiah's teeth this year and getting them protected with caps...he has his next dentist appointment scheduled for February, so we'll hopefully work on getting that ball rolling then.

I hope your holidays were magical and your new year has started off wonderfully. Hopefully I'll pop back in again SOON! <3

Thursday, September 15, 2016

PRESCHOOL

Oh my goodness guys, so many changes in our life lately!

First of all, Isaiah officially became a big brother one month ago today!

And then today he became a preschooler!


Our adventures of getting Isaiah into preschool started in the late spring, where we began the process of an IEP for Isaiah.  IEP stands for Individualized Education Plan.  It's a very thorough document that a team of people (including myself) put together to form goals for the child.  Back in May I took him to a local facility to get tested and where I was asked a ton of questions about him.  He was quite uncooperative for his portion which in the end was to his benefit as it helped him to qualify to continue receiving physical therapy, occupational therapy, and speech therapy (he aged out of the Early Intervention program when he turned three years old). 


In July, we went over details and came to an agreement on the plan that the teachers and therapists put together.  The plan was for Isaiah to go to preschool after he turned three (and after we had his baby brother).  We're starting out with just two half day sessions a week and will hopefully move to three days a week next year.  While he is in school, he has a one-on-one by his side; I pushed for that one-on-one to be a nurse as there is no nurse on property at his preschool.  That aspect took some work on my part (and some extra time to set up) but thankfully after calling five nursing companies, we found one willing to take on Isaiah as a patient.  His nurse meets us at our house and I drive us over to school to drop them off and pick them up.



His nurse is super sweet and a mom of two as well.  She was a very fast learner with how to pic Isaiah up (since we still never lift him under his armpits), put him down, and dress him.

Today was Isaiah's very first day.  Honestly, I didn't expect it to be but everyone agreed on Tuesday so we went with it; it was a bit of a whirlwind.  The school I chose uses reverse mainstreaming.  60% of Isaiah's classmates are typical and 40% of the class has varying needs.  It's wonderful because it teaches children at a young age to accept different.


When I dropped Isaiah off, I stayed for a few minutes while the other kids came in.  His class is mostly boys.  They were all very excited to meet their new classmate and the coolest part is they saw him- I heard one asked about his chair but other than that they just saw "Isaiah", the new boy in class.  He was very excited by all the toys in the classroom and would announce when he saw something he liked ("XYLOPHONE!") and his friends loved handing him what he was asking for. I decided to leave when I saw the whole class had arrived but he was so enthralled that I just snuck out (and yep, totally bawled in the car.)

He has a speech therapist come pull him out of the classroom for his speech time and his occupational therapist comes in for snack time.  His physical therapist will also come in to the classroom.  His class includes music class and even swimming (!!!) once a month too.

To say that Isaiah loved it was an understatement.  His nurse told me that he spent most of the time smiling and laughing.  When I picked him up and we locked eyes and he just lit up!  He started excitedly waving at me and yelled "HIIIII" which just made my heart burst into a million pieces.  He was WIRED for hours.  When we got home, he inhaled his lunch and looked so very exhausted but instead of napping, he just excitedly rolled around in his bed giggling and saying his one classmate's name.


I do believe this was a good decision to start Isaiah in preschool...I was hesitant because he just turned three but Isaiah needs that social interaction.  It's just going to help him soar, I can just feel it.  I have to get used to such a quiet house for the time he is in school though...:)

Monday, August 22, 2016

Pam + OI Clinic

Right before Isaiah officially turned 3 years old, we had a quick trip to duPont/Nemours for Isaiah's pamidronate treatment.

We made our way to the Ronald McDonald House on Sunday, since we were expecting to be at the hospital bright and early for treatment.  We actually spent a lot of time enjoying what the McDonald House has to offer this go round....usually we stick to our room, dinner, and the play rooms.  This time we checked out the library, did a craft one night, visited with some therapy dogs, celebrated Isaiah's birthday after the monthly meeting....we made lots of fun memories this trip!


Isaiah decided to torture us party all night Monday night (from about midnight to 4am)....and yet was still in ok humor for his first day of pam treatment....it was a long morning (especially for Dave and I) but was made so much fun by getting to hang with our pal Gavin, his family, and our new friend Maddie and her parents.  She was so sweet with Isaiah! After pam was done for the first day, we headed to OI Clinic for x-rays and discussions with Isaiah's geneticist, his orthopedic surgeon, the PT we've worked with since Isaiah left the NICU, and more. 


Isaiah fell asleep in my arms for some of the discussions, but ended up waking and showing off how he can scoot when laying on his back and how he can sit up on his own.  His x-rays also did some showing off for him....his bones look beautiful.  They are looking better than ever before.  Guys, his body is looking ready for rods!!!! Last year, his bones just weren't ready; if rods would have been surgically placed in his bones, they would have likely migrated right out, which would have meant more surgeries.  But now, his bones are longer, stronger, and should be able to hold those rods...and he is showing interest in getting moving, which is something he wasn't showing last year.  

We're expecting to schedule his first rodding surgery (his orthopedic surgeon does 2 bones at once, so it'll be a few surgeries over the years) for the spring, unless Isaiah fractures badly before then.  If he does, it'll be done asap.  Those little leggies will be straight before we know it!  Until then, we're going to continue to push Isaiah to develop muscles in his legs by having him weight-bearing in his new gait trainer (that finally came!) and continue to give him incentives to get sliding and scooting on the floor.  His arms have really developed some beautiful muscle thanks to pushing himself in his chairs, so if we can help develop his leg muscles?  

The rest of our trip went very smoothly and quickly....Isaiah had an adorable therapy dog and his owner come and visit us during day 2 of pam and Isaiah just loved petting him.

I spy Gavin! :)

He thankfully napped and slept well Tuesday into Wednesday which helped all three of us really enjoy the rest of the trip...

Sitting next to the August birthday cake! Isaiah was the only birthday kid there for the month of August....and he sure enjoyed that cake!

Working on a craft after dinner on Tuesday at RMH


And now we are switched to the 12 week dosage schedule since Isaiah is officially 3!  This trip was so positive and full of good news!  Hopefully they can all be this good. :)

Monday, August 15, 2016

Isaiah turned 3!

This past Thursday, Isaiah turned THREE YEARS OLD! He sure has come a long way in his three years.


Last weekend, we celebrated his 3rd birthday with some of his aunts, uncles, and his grandparents.



Thanks to Icing Smiles, he had the most amazing cake ever!  To go along with the pirate theme that you may have noticed in his new big boy room (which I wanted to mention- I did add the links to everything I could think of on there), the cake that his baker friend, Rachel, made also had a pirate theme...


It was so creative, yummy, and huge! I wish I had my phone ready to take video when Rachel brought it in.  His little jaw dropped and his eyes were so huge. 


We were really grateful for the awesome cake!  Honestly, I have been having some feelings (I blame the hormones) of guilt that I couldn't throw Isaiah the big party we have thrown the past few years...but being so far toward the end of my pregnancy, and it being such a hot time of year, it would be been too much...especially since we had to leave for Delaware for his next pam treatment the next day.  So I was extra grateful to Rachel and Icing Smiles for making his birthday feel special.

This was the first year that Isaiah was really into opening his presents- like he understood it! He realized that there would be something fun under the paper and it was worth the time to rip at it.

video

He can't get enough of his pretend food.  (Both of these sets were made by Learning Resources and the quality is fantastic!)

Once Thursday came along, we had just a few more presents for Isaiah to open and he was absolutely thrilled again.

Thanks to everyone for helping us celebrate Isaiah, whether you were here with us or wishing Isaiah a happy birthday from wherever you are, your celebrating with us was felt.  It is so much fun to see Isaiah grow another year older. <3

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Sunday, August 7, 2016

Isaiah's Big Boy Room

With Isaiah becoming a big brother soon, it's about time that he moves out of the nursery and into his very own big boy room! I did a TON of changing my mind when it came to every aspect of this room...We wanted to create a space that would grow with him. We wanted to create a space that was accessible. We wanted a simple theme.  

Ready to take a tour of Isaiah's big boy Pirate room? 

This is what you see when you enter the doorway...

To the left is a shatterproof mirror at his height for him to play, brush his teeth, brush his hair, and just plain check out his handsome self. To the right (not visible in this picture, but is down below) is a cabinet that holds some of his clothes.  The bookshelf straight ahead holds his tshirts, onesies, and pants- all folded and accessible to him. The shark above the shelf is from Target (and so are the amazing blackout curtains! They are fantastic!)- both from the Pillowfort collection.

The lamp on top of it is from Disney World! One of our cousins interned there and had this very cool lamp that used to be in the lobby of The Boardwalk Resort.  How cool is that? Thank you again, Micheal!!


Under the window is his clothes hamper, which isn't a permanent spot quite yet. To the right is what I lovingly call "the parking lot". It's an area where we'll keep various equipment (instead of having it all over the living room).  The decal on the wall is from Etsy. 

And here comes a picture of what I think will be considered a controversial choice for a bed....


Isaiah now has a twin junior loft bed! This baby is fantastic! It is the perfect height for Dave and I to get Isaiah in and out of the bed and there's room for him to play underneath for now! 


We have the bed turned so the ladder is against the wall for now. Isaiah isn't able to sit up on his own yet and can't roll completely over- although the pictures are deceiving, there is plenty of rail to keep Isaiah safe and sound in his bed. 

When I've shown these pictures to friends with kids, they are clearly skeptical and worried. I'd never put Isaiah in a situation that is unsafe.  I think my friends picture/ combine their kids ability/mobility and Isaiah's fragility. At this time, he can not get himself anywhere near over that bed rail.  Once he shows any sign of being able or interested, we'll place a mattress (literally) on the floor underneath so that he will be able to transfer himself completely on his own. And someday his brother will join him in this room up on top. 

But for now, the underneath is Isaiah's favorite place in our house...but more on that in a minute. 


Oh, and notice there is the cabinet I mentioned, I have a tension rod in there with all of Isaiah's hanging clothes. 


I tried to get a picture of the room so you could see every angle. We've circled all around so you can see the doorway from the hallway in the picture below...


But as for Isaiah's favorite place? I've had some fun...continuing to overthink the accessibility. 

We're using the ladder as a place to house some of his favorite cars and trains, his piano is under there, and at some point we'll have something educational and fun on the back of the cabinet (a calendar maybe? I'm still deciding.).  On the wall is a 30"x14" magnetic board with some letters for Isaiah to have fun with and have a "word party". 


And then there is his toy chest that he can access from his Firefly Scooot. Some of his favorite books are up on top and he loves reading them under his bed. 


I hope to add some kind of rope or string lights under there at some point, I just haven't decided which kind yet. 


Isaiah is just starting to pick his clothes. The rod is a little high for the scooot but he's also getting used to reaching up again after a recent arm fracture so once he learns to trust his body, he'll be grabbing things off the hangers in no time. 


Big kid!


He can even put his own laundry in the hamper! I knew what I was doing picking a foldable hamper ;) (ha I totally grabbed it for the pirate design and this is a very happy accident!)


So there you have it! A look at Isaiah's new room! 


It is clearly Isaiah and Carl approved. :-p