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

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. :)

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. :)

Pam Time!

Yesterday we checked in to the Ronald McDonald House, our home away from home, for Isaiah's next Pam-cation ;). For those new to the blog, (hi there!) Pam is short for pamidronate, the treatment that Isaiah gets to help his bones. We come to DuPont every eight weeks for it.  It's a treatment that takes 3-4 hours a day, each day, for three days, so we stay at the McDonald house across the street to make it easier on us.  It's an outpatient treatment so we do it all together. As Isaiah gets bigger, the amount of days we do this will be less, so at some point we'll just be doing this one day every 16 weeks (can't wait!).

For now, we take advantage of having the McDonald house across the street and make a little vacation out of things. Usually when we arrive, Isaiah has a hissy fit, but this time he rolled in with pride. He wanted to check everything out.

We had a great evening with his buddy, Gavin, and headed to bed early to ready ourselves for the first day. 

The first day of Pam is always the toughest.  Isaiah has to be weighed, measured, and accessed. When I say "accessed", I'm referring to the nurses accessing the port in his chest and getting it ready so that his IV fluids (the Pamidronate) can flow. If he didn't have the port, they'd start as IV. 

We're adding to the long day with a check in with audiology late in the afternoon. 

I'll be updating Isaiah's Facebook and my Instagram (both of which you can get to, whether you are on either or not, by just clicking on them over on the right side of the blog so keep an eye out. :)