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.) was so perfect that we bumped into him as he reminded me of the beginning of your'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.

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 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 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 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) 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  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 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