Wheelchairs, MRIs, and Panic, OH MY!

Look who is feeling good and back to his normal amount of time in his high chair! :)

He's been splint-free and feeling fine.  He's back to wiggling, stretching, reaching, and playing.

Today we have a big appointment- we're headed to the Mobility Clinic at DuPont to check out wheelchairs. (AHHHHH!)  I am hoping Isaiah's good mood continues and that he is up to try out a few chairs.  This is a whole new world.  I've been talking with and asking quite a few OI moms all about wheelchairs...trying to be prepared for the [likely] overload of information we're about to receive from the vendors.  I'm most excited about a specific chair, called a Panthera Micro, the vendor was brought in specifically for us.  It's made in Sweden and is the lightest weight pediatric chair on the market.  The lighter the chair = less weight for Isaiah to have to push.

Tomorrow is Isaiah's first MRI.  I'm nervous.  He may have to be intubated again (from what I understand, that's standard procedure for certain types/lengths of sedation.  He was intubated when he was 6 months old when he had his first surgery).  I'm nervous about the process of intubation.  I'm nervous for the MRI itself.  What if he has hydrocephalus?  What if he doesn't?  What if they discover something else?

I'm a maniac, aren't I? Such a worry wart....

The positive is that we should find out the results tomorrow.  Isaiah's neurosurgeon has surgeries scheduled, but will come to meet us when the MRI is done (in between surgeries) to go over it and come up with a plan if needed.

Crazily, I've gone back and forth on actually wanting Isaiah to be diagnosed with hydrocephalus (cough cough MANIAC cough cough).

 Hydrocephalus is a build up of fluid inside the skull.  If it's left untreated, it can lead to quite a bit of pain from the pressure on the brain.  A common way to alleviate it is for a doctor to surgically place a shunt in the skull that drains the fluid.

In my mind, I feel like if he has it and he has a shunt put in, Isaiah's head will stop growing so rapidly.  His head size is what is limiting him.  It's why he isn't consistently sitting up or holding his head up.  His head is heavy.

But then I found out that hydrocephalus is almost always a lifelong condition....and that makes me want to puke.  I  had been thinking "oh good, he'll get a shunt and that will be that."  Nope.  The shunts only work for so many years before needing replaced.

So now I am not sure what to think.  I don't want Isaiah to go through multiple brain surgeries.  Would it be considered "brian surgery?"  I assume so since he'll be seeing a NEUROsurgeon... 

Hey Vicky, stop panicking over unknowns!

Ok, I started babbling....so, we'll update you when we can.  For now, I need to put my focus back on wheelchairs.  :)

17 Months!

Look who turned 17 months old yesterday!!!

Isaiah's still hanging at the same weight (well, different scales but I am not surprised; this is normal among severe OIers at this age), but he's definitely grown recently in length.  He has officially, for real this time, sized out of his 0-3 clothes.  I can still put him in them if we like the capri look, but no, it's 18 degrees out.  I'm almost kind of bummed, the 0-3 outfits with footies were fitting perfectly and now the 3-6 footies are a tad too big, so it'll be a while before he's wearing monkeys on his feet again.

Isaiah celebrated his second Christmas and New Years this month.  He loved every celebration and every moment.  He loved the music, the lights, the time with family....it was wonderful. 

Isaiah's learning to play with toys more appropriately.  Cars go "voom" and he laughs hysterically when I say "beep" and "honk" while crashing cars (why, yes, that is how I play with cars)...but his vocabulary has staled a bit just this week.  We noticed that happened when he broke his arm back in October, so I imagine it's a way that he deals with pain.  Although, yesterday I am sure we heard him saying "get it" in reference to his toys.  #bossyboy

He had his first sinus infection (that's a milestone, right?), but that's the only first that I can think of from this month.

Happy 17 months (and one day), Isaiah! I will try to throw you around a little less this month, ok? <3

Healing

Sorry for the lack of updates...we've been in recovery mode.  I put myself through an emotional beat down and I am finding the best medicine is cuddling with Isaiah.

I want to thank everyone for all of the love and support.  You are very good at inflating my ego. ;-)

Oh gosh, guys, her ego was big enough!

With all seriousness, I read every single comment and message and love you for it.  When they first started rolling in, I had a hard time reading all of the "you're a wonderful mom!" comments, but they've grown on me. You are right; I am pretty fabulous. haha

Seriously, mom? You are so embarrassing.

When it comes to Isaiah.  Let me tell you, when it rains, it pours.

Isaiah has had some congestion for the last few weeks.  I haven't been too concerned since it was always coming out clear. (Oh, were you eating? Sorry about that.)  On Wednesday, I noticed it's changed colors (Seriously, you're welcome.), plus he was even dealing with some green discharge coming out of his eyes.

But then I threw him around (ha, see? I can joke about it now!) and his gross issues took a back burner to his bones.

We were completely focused on what could be broken....we confirmed that Isaiah had a fractured humorous (at the very top of his arm) and a femur fracture right smack in the middle of the bone.  Both were minor.  I splinted him myself in the cast room at DuPont and we headed to the cafeteria to warm up some milk for him to drink before we got on the road back home.

It was there I saw a pretty major amount of blood coming out of his one ear.  Panic.  I was worried about a brain injury (I sometimes become a crazy-worst-case-scenario-mom).  Upon closer inspection (and my emailing and texting quite a few people), we saw some dried blood under his fingernails, the blood wasn't fresh, so we decided he must have cut himself.

Once home, I cleaned up his outer ear.  We vegged.  Isaiah and I napped BIG TIME.  (I hadn't slept the night before...way too much worry.)  Things were getting back to normal.

The next morning, we had Isaiah's Synagis shot scheduled.  Synagis is a medicine that Isaiah gets monthly during flu season; it helps to prevent Isaiah from getting RSV.  It was actually scheduled for Thursday, since they only have that "clinic" on Thursdays at Isaiah's pediatrician, but they made an exception for us given everything that happened and rescheduled it for Friday.  I hated giving him a needle, but this was important.  When he woke, I remembered the green gunk...mostly because it was coming out of his eyes (again) and his nose when I would suction him. (Blech.)  Then I saw his ear.  A little more blood and a crazy amount of wax.  Ugh.  Another ear infection?

When we got to the pediatrician, I mentioned the congestion to the nurse who gives Isaiah his synagis shot.  She asked some questions and decided we needed to see a doctor.  She spoke to the other staff members and they fit us in, right then and there.

How awesome?!

So yeah, on top of Isaiah's two fractures, he also has a sinus infection and a burst eardrum.  (Now the blood from his ear made sense!)

And yet, he still smiles.  Still laughs.  Still plays.  I had a sinus infection last week and was a miserable grump.  Isaiah has a sinus infection, burst eardrum, and two broken bones and still finds a way to love life.  What a trooper!

That brings us to today....Isaiah is officially 17 months old today!  I'll be hopefully taking some pictures later (we are going to be removing the splints for a good bath to see how Isaiah likes it.  Yes, I know that's super early...and I agree with you, but if you saw how much this kid is moving those limbs, and how annoyed he is with those splints...) and will post tomorrow about his 17 month birthday. :)

Thank you again for your love, support, and prayers.  <3

A quick update...

For those that don't follow social media...

Isaiah has two confirmed fractures. Both on his right side, one in his humorous, one in his femur. The doctor described them as "minor".  Better than "displaced".

I'll try to give a more detailed update tomorrow...but tonight, we have some serious lost sleep to make up for. 

And also, cookie-eating... ;-)

Nightmare Come True

The following post is something I never imagine having to write, because I never expected it to happen.  I've always thought to myself, "I will always be so careful.  Always."  I am about to be critical of myself and maybe you'll think I am being too harsh, or maybe you'll think I am not being critical enough given what I did happened.  If you know me personally, you'll probably be all "Vicky, critical of herself? Neveeeeeeeeeer" (Sense the sarcasm? Because I often am).  I will likely make silly and likely inappropriate jokes because that's what I do in a stressful situation- I laugh and make crazy jokes.

I kind of didn't want to share this.  I sort of wanted to hide the fact that this happened.  But this blog is about our journey with Isaiah and OI.  The good and the bad.  The happy and the scary.  It wouldn't be fair to me, to Isaiah, or to you if I hid this.  

Also, I am an over-sharer.  Sharing helps me process things.

And I babble when I am nervous....so, anyway... ;-)

_________________


From time to time I have the same nightmare.

The kind of nightmare that makes me sweat.  It wakes me with a jolt.  It makes me shake and cry and pray it never happens.

It involves me dropping Isaiah.

And yesterday, at 1:30pm, when I was late to get Isaiah down for nap (and we were both feeling it), when I was hungry, when my mind was selfishly preoccupied, and I was trying to do too much at once...

My nightmare came true.

Yes.  I am scum.  I am an a-hole.  I absolutely loathe myself for this right now.  Not the kind of loathe in which I should be seeking help, but the kind where when all of the effects of this are taken care of/x-rayed/splinted, I will be eating an entire 1/2 gallon of ice cream.  And left over Christmas cookies.  And chocolate.  Probably a lot of chocolate.  Because that's apparently how I deal with stress.  I wish I exercised instead.  (I am kind of kidding.  I have actually been too disgusted to eat, but have anyway because I know I need to.  But there is a lot of deliciousness for me in the future when this is all in the past.)

I've been breaking down sobbing, shaking, reliving, and regretting.

I am pretty sure every parent has done something like this.  I mean, it probably doesn't usually include a flying heavy suction machine (WHY DID I NOT PUT IT DOWN FIRST????), but you know parents often drop their kids or almost drop them.

But those typical kids...if they were to have been dropped like I dropped Isaiah...those kids would be pissed off because they were sleepy and seconds from nap time (that they were overdue for) but they'd be fine.  Truly fine.  It was inches.  Maybe 6?  How many OI parents/OIers are horrified? Show of hands?


Oh God.  I could have killed him.  That's what dropping a severe OIer could do.  It could freaking kill them.  That one slip could have snapped his neck.  I could have killed my baby.  I didn't, thank God.

The worst part of it was that he landed on his front.  This is a kid who has to be prepped for tummy time and here I was throwing him into it while a flying suction machine was coming at him and then out of pure panic/instinct I picked him up from under his arms.  No other support. 

WTF VICKY? WHAT WERE YOU THINKING? YOU ARE AN OI MOM.  YOU ARE SMARTER THAN THAT.  YOU KNOW ISAIAH IS SEVERE. WHY WHY WHY WOULD YOU DO SOMETHING SO STUPID????

See the regret I am feeling?

Now, I know this isn't about me.  You are likely asking WHAT HAPPENED NEXT? DID YOU GO TO THE HOSPITAL????? HOW IS ISAIAH??!?!?

Stop yelling at me with those capital letters, friends.

I carried Isaiah to our bed (it's a short distance).  He was crying.  It wasn't his break cry, it was more of a sleepy/panic/WTF just happened kind of cry.  In the process of moving Isaiah to the bed, I yelled at the top of my lungs (likely not helping things, because I am one LOUD woman) "OH MY GOD! DAVE! DAVE! DAVE! GET UP HERE I DROPPED HIM! OH MY GOD I DROPPED HIM!"  Luckily Dave was home (and on the phone, sorry to that wonderful loving woman that I probably made want to poop her pants out of fear of how I was screaming).

Can you imagine?  Poor Dave probably lost a few years in that moment.  Don't tell him, but I think he instantly grew some gray hairs.

He ran upstairs to us.  I quickly blurted and babbled out what happened.  He looked Isaiah all over.  Isaiah was still crying but we couldn't tell what was hurting.  Probably everything.  Because I dropped him.  Like a clumsy idiot.

He picked him up.  Isaiah calmed a little.  I took him.  He calmed a little.  We decided to lay him in his crib, hopeful that his crying was just from panic.  Maybe we got lucky??

Alas, he kept crying.  We noticed his one leg was pulled up.  We decided to give pain medicine.  In a panic, I called Dr. B to double check the dosage since he has gained weight.

Poor Dr. B.  Dave was in with Isaiah and I was in the kitchen shaking, on the phone, trying to get his bottle of meds.  "Hi Dr B.  It's Vicky, Isaiah's mom.  I dropped him..." and then I incoherently tried to explain that it was just a few inches, onto his mattress, but he's crying and we think he is hurt and I need to find out the proper dosage of medicine to get his pain under control."  

And then he yelled at spoke sternly to me.  "Get yourself together.  Stop crying.  Cry later.  Isaiah needs you right now and I need to understand you...something something something..." My mind started fogging as I tried to calm down.

I explained again.  He told me he'd prefer to try Ibuprofen first, as he was afraid anything stronger could be dicey given Isaiah's respiratory history and the fact that I was worried about his rib cage.  Plus, we just weren't sure what could have broken.

We gave Infant Advil.  Isaiah fell asleep.  He woke though, about every 10-20 minutes, so I emailed Dr. B....he had Isaiah's orthopedic surgeon Dr. K call me.  I explained everything to him....by this time, Isaiah had really started to drift into a good steady sleep.  His heart rate was in the normal range.

It was an awkward time of day.  If we drove to DuPont, we'd likely miss those that would be the best of help.  We didn't want to go to an ER...that puts him at risk for too much.  After talking at length, we decided to wait until morning to go to the hospital.  Isaiah was stable, and hopefully after some sleep we'd be able to better pinpoint what was hurting him.

Around 4:30, Isaiah officially woke from his nap.  He was starved and angry.  We didn't want to try any of his normal seats for fear of hurting him, so we thought a pillow would be the best bet to sit him up, cushioned, so he could eat.

At first, he wasn't moving his left arm at all.  He was holding his right leg. (as you can see above...)  But after he ate, we laid him on the floor, on a very padded mat...

Ok, left arm is ok.  He's stretching it!  No wincing.  No tears.  But that right side...hmm

Isn't he amazing?  After everything he's been through today, he can still find a way to not only smile, but laugh.

After some time playing, we thought it'd be smart to give him a bath.  I imagine seasoned OI parents may be grinding their teeth right now. Why isn't he splinted?  We just aren't confident as to what is hurting and we're afraid to run to an ER, and nothing show on an X-Ray yet, and God forbid something does show and then we're dealing with ER staff about how to properly splint.

In our eyes, we just had to get through the night.  Get through a bath, which would feel good to Isaiah and give us another glimpse as to what hurts.

It was there that we noticed his right arm wasn't moving right.  That's his dominant arm and he's only moving it from the elbow to the fingers.  What does that mean?  His humorous? His clavicle?  His shoulder?  

What about the right leg?  Is it puffier than it normally is?  It looks puffier...but he stretched it out...

Get through the night. Get through the night so you can see the right doctors.  

So right now, when this post goes live, that's what we're doing.  We're at DuPont.  Getting X-Rays.  Hopefully getting splinted.  Hopefully getting answers.

Hoping we made the right decisions with how to handle this.

As soon as we know, as soon as we can, we'll let you know how Isaiah is.

As for me...I feel responsible.  Yes, it's OI's fault.  But I need to take some responsibility too.  I need to pay better attention.  I love Isaiah so much.  How could I do something so stupid?

This is the silliest thing ever.  But the one thought I keep having is Why? Why did I have to write "It'll be ok, I promise" in my post on the Mighty?

This is the silliest thing ever but I swear I jinxed us.

I hope I'm wrong.

I hope Isaiah is ok.

Ugh.

Please send up a prayer for him, for us.  For his pain management.  For his healing.  For our sanity. ;-)

The Mighty

Sorry for the lack of updates, we have some things happening that are taking priority. 

In the meantime, we were featured on The Mighty! Go on over and check us out... 

Happy 2015!

Happy 2015 and welcome back to the blog!  

I was hoping to have a great post ready for you today, but honestly, we partied too hard...

Ha, I wish!  I caught myself a sinus infection right after Christmas.  I tried ignoring it, hoping it would go away....but alas, it just got worse...to the point of affecting my head/jaw/teeth...and I basically feel like crying.  All the time.  But then I suck it up because I am Isaiah's mom and I know what he deals with so often and a sinus infection is nothing compared to a broken bone, you know?

But day 3 of the throbbing of my jaw was my breaking point.  After I put Isaiah to bed on Saturday night, I ran to a local Urgent Care type of place; they quickly diagnosed me, while kindly yelling at me for trying to pretend I didn't have it. :)  They gave me antibiotics and pain meds to help with the throbbing and I am willing them to work.

I am resting when I can and trying to be a good mom....which is not easy when I feel like this.  On top of that, Isaiah is dealing with some pain.  He sat up unassisted for over 20 minutes on Friday night.  It was glorious, but we think he's feeling it.  That or he has a fracture.  Sigh.

So we are two peas in a pod right now.

Two grumpy peas in a miserable no good pod.

Poor Dave. lol

Dave has been amazing and trying to help me as much as he can but he's back to work today.  So for now, Isaiah will be watching an obnoxious amount of Disney channel and we will be cuddling and healing together.

We hope your new year has started off healthier!

We'll catch you when we are feeling better...which is hopefully sooner rather than later.  :)

<3