Friday, January 30, 2015

Happy Weekend!

Not much to report here today. :)  We're playing like crazy and feelin' fine. (All that's left of his sickness is a little runny nose.  Hooray!)

Have a great weekend! :)

Wednesday, January 28, 2015

Do You Want to Build a Snowman?

Isaiah is continuing to slowly get back to his healthy self, so I am starting to get him out of the house again.  Not sure if you've heard, but the northeast portion of the US was supposed to experience a little snow earlier this week...we woke up yesterday morning to about a total of 4 inches of snow outside!  (This is after days of on and off snow.)  

Yesterday, I decided to see how Isaiah would handle going out in the snow now that he's a little he was so interested in watching it fall Monday evening.  The last time we went out while it was snowing he hated every second, so I was hopeful things would go better since the snow was done falling.

No mom.  Just no.

Pretty similar reaction.  Clearly this guy is not a snow-loving guy.

But Isaiah, your mama and daddy love snow!  Don't you want to build a snowman?
No, mom.  Just no.

Ooooooh, this stuff is cold! Hmmmm, I wonder how will it feel if I touch it with my right hand...

Cold.  Still cold.  But kind of fun!

Mama even got to build a snowman. ;-)

Hopefully as Isaiah gets more mobile, he'll get more interested in snow in the wintertime.  For now, we'll just count it as a fun sensory activity in our warm house. :)

Monday, January 26, 2015

Isaiah's New Ride

Thank you so much for your prayers and love for Isaiah's health!  Isaiah's fever broke on Saturday but he's continued to deal with some gross stuff in regards to his nose....he's really in a much better mood but I will likely be bringing him back to his doctor as soon as I can to make sure his sinus infection hasn't come back.  At least he's smiling again...we'd missed that smile. :) 

His MRI has been cancelled again but I am working on a plan now for that to hopefully happen in February.

Recently Carl Isaiah got a new stroller...

Carl would like to think it is his...

It was given to us by a friend of ours.  It had been donated to her but she didn't need a new stroller.  When she asked if Isaiah could use it, I thought "no way, he seriously has three strollers already".  He has his Graco that we use most of the time, his adaptive stroller, and we have his bassinet stroller from when he was a newborn (that we plan to bring out again as he gets bigger because it has a great toddler seat).

But it's a Stokke.  I know another OI mom who swears by her Stokke.  It sits up higher and supports her son well.  I had to try it, so I went back to my friend about it...

Holy moly, it is awesome!  It is easy to open and close and really does sit up so high!  You can flip the seat so that it faces out to the world or in toward the parent.  It will be great on DuPont trips- Isaiah will be able to eat at the table when we eat in the cafeteria or over at the McDonald will also be great when we go out to restaurants (because that happens so often, ha, but I can dream!).

We've had it in the house for the last week, taking some time to get used to it before our next Pam trip.  Isaiah has played in it, eaten in it, and lounged around as well.  He's a big fan.  

Hi.  My name is Vicky and I am stroller hoarder.

Is this not the cutest face ever? Ha.  It's like he's saying "ha, yeah she is a stroller hoarder." 

I can't wait to show Isaiah's PT!  (I think she'll be thrilled with how supportive this new stroller is for Isaiah!)  Hopefully we'll have PT this week?  We haven't had a Physical Therapy session since the week before Christmas...between the holidays, Isaiah's breaks, Isaiah getting's crazy.  

I also can't wait for her to see this in person:

Isaiah has been sitting up every time he is in his high chair.  He has become so amazingly strong while doing it!  Just last week, he had been doing a great job sitting up but he'd flop back when he'd want to lean back but even that has changed.  Now it's just so fluid.  He's got it.  He can sit up.  He can pull forward.

He can only do this confidently in his high chair and adaptive stroller, but it's a great start!  He'll be sitting up in the tub or on the floor playing before we know it!


Friday, January 23, 2015

Our Little Sicky

See that smile?  That was a rare occurrence yesterday.  Want to know where we were when I took this picture?  The waiting room of Isaiah's pediatrician.

Whomp whomp.

This kid has been hit this month, man.  What, was he healthy for a week?  Isaiah ended his antibiotics from his burst eardrum/sinus infection just this past Sunday and three days later it's like his nose was a leaky faucet.  (Oh hey, you probably should stop eating when checking out the blog, ok? Unless talking about bodily fluids makes you hungry, and if that's the case, ew.)  

Isaiah has never had such a leaky nose before.  And it just worsened as the day went on.  We started suctioning and so much fluid came out.....not even 5 minutes would go by and it would start leaking again.  The thing is, it was clear.  Clear means no cause for concern, right?  On top of this issue, he was sneezing up a storm.  My worry-wart-mama alert starting sounding off in my head...the color of his nasal discharge meant nothing to me...something was brewing, I could feel it.  

He'd wake up Wednesday night with a sneezing fit of at least 4 sneezes every so often.

Thursday, Isaiah just seemed off and I got worried.  He wouldn't really play.  His eyes were glassy.  He wasn't eating well.  He had some diarrhea.  He would shiver every so often.  Nap time was very interrupted.  The color of what was coming out of his nose was changing and I was growing more and more worried.  I checked his temperature- it was 100.0.  I called his pediatrician and made an appointment for the afternoon.

The only reasons I wasn't packing us up and getting ready for DuPont were 1) his O2 level was normal when he was on his pulse ox.  I'd think if he was developing pneumonia or RSV, it'd show in his numbers. 2) he was happy laying on an incline watching tv.  He'd laugh and still sing Mickey's Hot Dog song- that was a good sign to me.

I won't mention the big sneeze that had me worried he fractured a rib....oh wait, I just mentioned it...yeah.  I'm not 100% sure but he cried that break cry after one big sneeze in the morning...but he's been sitting up normal and his heart rate went back to normal so I am hoping I was just overly paranoid.

I texted Dave and asked him to meet us at the pediatrician after work since he was supposed to arrive home at our appointment time.  

Isaiah was tested for two strands of the flu and the tests came out negative...but we're still concerned.  His symptoms seem flu-like.  The doctor thought maybe we just came in so early in the sickness that it was too early to test positive.  We've been on watch for his temperature.  If it keeps elevating, they plan to put him on Tamiflu.  

I've emailed his team at DuPont; I'm anxious to hear back from his pulmonologist....I am anxious for his lungs.  The fact that his symptoms escalated so quickly...ugh...the flu is scary, especially for a child with restricted lung disease and has a history like Isaiah.

The positive is that even going through this, he's continuing to sit up and pull forward at the table.  Still a fighter.  Still determined.  Still amazing.

Please pray for Isaiah.  Pray for his continued strength to fight this thing.  Pray we stay out of the hospital.   Thank you. <3

Wednesday, January 21, 2015

Sitting Up and Reaching!

First, I want to thank everyone for the prayers, love, and snowflakes for Everly's family and the OI community.  Truly, thank you.  Thank you for your understanding and your kindness.  Thank you for your respect.  Losing a member of the community is so hard, especially a young one.  


The past few days, Isaiah has really shown that he's feeling better after everything he went through two weeks ago.  He's gotten completely back to his normal, and is now even back to challenging himself.  

We first noticed over the weekend that Isaiah was trying to sit up a lot...

I had been sitting him in his Mickey couch quite a bit for snacks, and he'd get pretty mad when I'd pull him out of it to lay down on the floor to play....I kind of love that he is really loving being up.

Yesterday, he was feeling especially strong.  

As soon as I sat him in his high chair for breakfast, he was sitting up, no leaning on the back (except for a few short breaks).  He sat with his head up for the majority of breakfast- that was a first for him. 

And then, before I knew it, he was reaching to get his snack cup.  Reaching!  Pulling forward!!  It was amazing.

And then he did it all again this morning. :)

I should really put that vacuum away, huh? Or use it. ha

We're hopeful Isaiah will continue to push himself in this way so that it can become less and less of a challenge for him.  Hopefully we'll start to see this behavior later in the day as well.  And hopefully it's not hurting his back...

Isn't it great to see though?  We are so very proud of him.  <3

Monday, January 19, 2015


This weekend was a quiet one for us.  Partly because we are trying to keep Isaiah healthy for his MRI and partly because we were struggling with our emotions.  If you follow Isaiah's facebook page, you may have seen that I shared a video about a baby girl named Everly that was born with OI a few weeks ago...

Her OI was severe.  It was lethal.  Everly's lungs were extremely underdeveloped and the ventilator that kept her breathing was also doing harm to her lungs.

Yesterday, she earned her wings.  

We have cried for Everly.  We've cried for her parents We've cried for her family.... We've also cried for ourselves.  We relate so much to their journey...

In her short time, Everly moved mountains.  Through her father's words and videos, she brought (and continues to bring) awareness to OI.  His videos have been shared and viewed thousands and thousands of times.  She's brought communities closer.  Together as a family they've showed what true faith and devotion to God looks like.

Please take a moment and pray for Everly and her amazing parents.  If you are on Facebook, consider changing your profile picture to a snowflake (please feel free to use the picture above).  In the OI community, when we lose a young one with OI, many of us change our profile pictures to snowflakes in honor of that OIer and their family.  Some of us say that it is "snowing on Facebook" for them...the snowflake represents their uniqueness, their fragility.

Everly baby, fly free beautiful girl.  

Everly Leyden Baker
12/28/2014  -  01/18/2015

Friday, January 16, 2015

Whomp Whomp

Sorry for the lack of update here....I'm having a hard time coming up with the words for how our DuPont trip went.

If I could sum it up in one word?  Headache.

I have no pictures from the wheelchair clinic appointment.  Isaiah apparently wasn't in on the plan.  The plan for him to take a nap in the car ride to by the time we got to his 1:00 appointment, he was a grumpy exhausted little monster who just wanted a cuddle.  

It seems others weren't in on my plan either.  Sigh.  Let's just say that there was a miscommunication.  I was seeing red and I was basically on the verge of a temper tantrum most of the appointment; I could hardly speak.  On top of that, Isaiah was in a bad place....lots of crying, grumping, and slumping.  

Based on the 20 minutes that they had to observe Isaiah, [it seemed as though] the people we met with decided a manual probably won't work for Isaiah.  Given "how well he is doing cognitively", he'd do best with a power chair.


I have zero negative feelings about power chairs....but in our situation, it's not time.  The time may be when Isaiah is in school.  Years from now.  Plus, we're not ready.  We drive two tiny cars.  We live in a bilevel. Power chairs are big and heavy.

The other option that was suggested was an adaptive stroller.


We already have a great one that a member of our OI family gave us.  It's great, but doesn't offer the independence I know Isaiah should have.

I believe in Isaiah.

I believe, given the right tools, he can get moving and strengthen his muscles.

He can and he will.

I am feeling bitter from this experience.  The people we met with were kind and wanted to do what they feel is best for Isaiah...but they don't know him.  They know what he looks like on paper.  They know what he looks like (napless) based on 20 minutes of time.

I know what is best for my boy.  I won't question what my gut says.  

The positive is that they are working on a demo manual chair (that our insurance would cover).  I am worried the demo won't work.  I am worried it's going to be too heavy.  I am worried they are setting him up for that they make me question is right for my super baby.  The chair I had in mind, that a number of OIers have been successful with, is 8-9 lbs, but getting it is tough. This demo chair is going to have a lot to it, and will likely be heavier that the chair we want.  The heavier the chair, the more weight Isaiah has to push, the more stress on his body.

Currently I am spending way too much time scouring the internet trying to find a supplier local-ish to me that could at least show me the chair I think would work best.  Wish me luck; the maker is based out of Sweden.

So, clearly our appointment didn't go well.  Feeling defeated, we headed over to the Ronald McDonald House to check in for the night.  We were planning to stay since we had to be back at the hospital at 6:45am.  Just as Isaiah was waking from his nap, I got a call from the hospital.  I mentioned that Isaiah had had a sinus infection last week and was doing much better but was still on his antibiotics....

Yup.  They cancelled.  I may have cried.  Dave took off from work.  We were checked in to the McDonald House!!  


Basically, the anesthesiologist wasn't comfortable because of "Isaiah's respiratory history".  


So it's been rescheduled for a little over a week from now.  Dave has to take another day off because he wants to be there for this and we will likely be avoiding everyone to avoid Isaiah catching something.  

We need ice cream.

Lots of ice cream. 


A positive through all of this is that Isaiah is feeling so much better.  We had water therapy today and our little fish DID AMAZING.  He kicked, he sat up, he reached for toys, he threw toys, he held his head up almost the entire time...he seriously rocked it.

He can and will continue to grow stronger.  I will find a way to get him moving.  We can do this.

Wednesday, January 14, 2015

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

Monday, January 12, 2015

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 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

Sunday, January 11, 2015


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

Thursday, January 8, 2015

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, 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. 


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 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.


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

Wednesday, January 7, 2015

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... 

Monday, January 5, 2015

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 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.  :)