Outdoor Time

We've been laying low, relaxing, and spending so much time outdoors because the weather has been amazing!

Isaiah has had a few grumpy spells thanks to those 12 month vaccines but he's getting better.  

And well, when he's sore, he get a little medicine and lots of cuddles and raspberries (ps, he gave me raspberries back!! ha!).

But mostly, we've enjoyed our time outside.  

I updated the Adaptations section of the blog...I finally got around to cutting some pool noodles as supports in Isaiah's stroller.  They make a world of difference for his legs!  His PT will be happy. :)

(Maybe I'll get around to cuter wraps at some point.)

We have our appointment with Isaiah's pulmonary team today.  Here's hoping he frees us of the daily nebulizer treatments and has lots of good things to say...because we're feeling very good about where Isaiah is in terms of his breathing.  Maybe we'll get the official write ups of his sleep studies so I can share them with you?  That'll be nice. 

Here's hoping you're getting lots of outdoor time.  Happy weekend!

1 Year Well Visit

Yesterday (on a very wet and dreary day), Isaiah and I had his one year well-check at his pediatrician.

I had some forms to fill out (questions about any possible "concerns"...).  It kind of made me laugh; I answered all of the questions with "no" but should have technically circled yes for every single one...I know from all of the other OI parents that some things come later to OI kids so I'm not technically concerned.  Everything will come to Isaiah in time.

According to their measurements, Isaiah weighed just under 14 pounds (I'm not surprised given he's been sleeping through the night which means he's down a bottle.  He's working on eating more during the day.) and I got his legs stretched so that he measured 23.5 inches in length!  He grew over an inch in a week! (Ha, not really, he was just happy to stretch for me.)

Isaiah is in a good place now so the appointment was quick....then it was time for his shots.

And there were tears.  Copious amounts of tears.  First from Isaiah, then from me because I just felt awful seeing him in pain, then from one of his sweet nurses.  Apparently my love for Isaiah is very apparent and caught her off guard.  Most mommies are probably braver than I am in front of their kids, and I'm working on getting better with needles, but I just really dislike causing him pain.  This poor kid gets poked so much...he goes through so much....it's just hard sometimes.

Since his appointment, he's been a bit of a Grumpy Gus.  We had spent the rest of yesterday relaxing, napping, and cuddling but he still struggled.  Once we hit bedtime, he was up every 15 minutes until 3am, when I finally switched to baby Advil from Tylenol and gave him a bottle (thus wrecking our sleeping-through-the-night streak).  He was basically pleasant all morning, even waking at 6:30am! (UGH.  I am tired.)  He had some grumps when we went over bumps with the stroller when I decided to take him out shopping this afternoon, but I'm confident that he's fracture-free (sometimes OI kids fracture when getting their shots, thanks to the startling), I think he's just sore where he got his shots and he may be leery.

Later this week we have a DuPont visit on the schedule; we'll be seeing his pulmonary doctor to check in on everything.  We are hoping to stop his daily nebulizer treatment of Pulmacort and come up with a solution that doesn't involve tape for his c-pap at night.  Isaiah has recently decided that he doesn't need his c-pap anymore, as he rips his cannula off of his face as soon as it's put on.  It's loads of fun, really.  ;-)

12 Months aka ONE WHOLE YEAR

Today Isaiah is 12 months old!

This month Isaiah got his first hair cut...

He's now over 14 pounds and last time he was at the doctor, he measured in at 22.25 inches!

He's also started talking!  He says "Dada" with purpose now, answers the question "What does a duck say?" with "Kak!", and we're confident he's trying to say "ok" and "yeah".

We had a big party on Saturday, celebrating Isaiah's big milestone (lots of pictures to come!), and he enjoyed almost every single second of the day.  Almost, because well, this is how the smash cake went...

Yup.  In the grand scheme of things, it wasn't a big deal.  But we've still had his homemade smash cake sitting here waiting to be smashed.  So we saved it for this morning...and got a much different response. Get ready for a million photos (or 5, whatever...same difference.)

We got a much different reaction.  

Today, we're celebrating our baby.  Not much too reflecting today, but celebrating today, what it means, and Isaiah's future.  

He's come a long way in one year!

Happy Birthday, lovebug!

Reflecting

This week, I haven't been able to stop thinking about where I was emotionally one year ago.

I was determined.

But I was terrified.

We had been recommended to have basic plans for a funeral and we had none because I was so sure hopeful that wasn't going to happen....

This week, when I spoke to the Communication Coordinator for Nemours Fund for Children's Heath about the radiothon that's coming up on September 3-4, she asked me a question that I had difficulty answering.

What was the scariest experience that happened in all of this?

It's a tie for me.  I'd think an obvious moment would be when Isaiah turned blue and he went into respiratory failure...

but along with that, came the anticipation of Isaiah being born.

I kept asking "What if they are right?".  

Last night Isaiah took a 30 minute bath.  He splashed.  He kicked like crazy.  He grabbed onto the side of his little tub with his left hand to support himself as he reached up for the watering can [I was using to sprinkle him with] with his right hand.

I almost cried watching him giggle and play.

He's so strong.

All this week as I watch him play, I keep remembering that feeling I had one year ago, that fear.

I held onto that fear until we met with Dr Bober when Isaiah was 5 days old and just transferred from Jefferson to DuPont.

Did I ever share that with you?

Before Isaiah was born, I worked in a wonderful school for a fantastically understanding principal and superintendent because even though I planned to stay at home with Isaiah, I couldn't quit my job.  I couldn't quit unless I knew he was going to live.

I needed to have a responsibility; if I had that, I knew I could get myself out of bed if things went the way some predicted.

Even after Isaiah was born, even after he cried his beautiful cry...I couldn't let go of the fear that he was going to die.  I was basically holding my breath.  For 5 days I held my breath and kept begging for him to live.  When we met with Dr. Bober, in room 11 of the DuPont NICU, I asked him if I could quit my job.

He laughed and asked if I needed a script for that (ha).  Then he realized I was serious.  He brought up an x-ray of Isaiah's torso and pointed to it, as we stood in front of the computer while looking over at Isaiah, telling me that yes, he's ok.  His chest looks beautiful, and yes, I could quit.

(I snapped this picture of that x-ray with my phone.)

As soon as he left Isaiah's room, I went to my lap top and emailed my supervisors and let go of that fear.  It was an amazing relief.

Now clearly that fear haunted me again a few weeks later when Isaiah turned blue, but he again showed us all how strong he is and how much he wanted to be here with us.  He continues to have that strength now.

We are seriously so blessed to have Isaiah with us.

This sounds so cliché, but I've never loved anyone or anything like I do Isaiah.  It is the most insane emotion to feel.

This weekend we'll be celebrating Isaiah with family.  On Monday, our baby will be one whole year old!

Ok....this post got me way too emotional, so I'll end with this fantastic picture.

Ha!

Dupont Trip

Yesterday Isaiah and I had a few appointments at Dupont.  Dave couldn't make the trip and this may shock you...but I seriously took no pictures at all until we were home.  Seriously failing here. :-P

So I give you a shot from a few days ago when we were out shopping and Isaiah was being silly. 

The appointments went fairly well.  Isaiah first saw an ENT to clear him of an ear infection.  His temperature has been hovering around 99.5-100.9 for the last few weeks, 100.4 at the time of our appointment, and I haven't the slightest idea why (no new teeth are popping through) so I wanted his ears checked to rule out an infection.

The ENT we saw couldn't rule out an infection because he found Isaiah's ear canal to be too narrow in his right ear.  He said he'd only be able to confirm it in the OR.  Considering his temp is a low-grade fever and he's not showing his typical signs (besides sticking his finger in his ear), he was confident Isaiah is infection-free. He did notice inside of Isaiah's ear was wet, and I know that was from water therapy 24 hours before so we have to get ear plugs to stop that from happening. (Maybe that's why he's sticking his finger in there? I don't like when my ears feels like that.)  Isaiah did end up getting his ear cleaned out (with suction!) which did not make him a happy little guy but at least it's open of the gunk the doctor from last week saw.

 Next, Isaiah had a check in with Lawalls about his helmet.  They re-glued a few spots that had come undone and weren't too upset with me about the lack of wearing his helmet since temps of 100+ usually aren't good.

I emailed Dr. B about the temperature, he quickly responded, and I basically pictured him singing that Frozen song as he told me twice to "let it go".  I've heard that those with OI can have a temperature that "runs high" and they are considered to always be healing...but I never knew exactly what "runs high" meant.  Maybe it means 100 degrees for Isaiah?  I'm not sure.  However, I'm very interested to see the reaction at Pam in a few weeks if his temperature is still that high. (They usually won't administer Pam with a fever.)

Anyways, are you still with me? This lack of pictures makes me feel wordy and boring.

Here you go.  Here are our adventures in textures while eating.

So dramatic.  This next one is my favorite.

Help!  She's trying to kill me with meatballs!

After our two appointments and attacking Dr. B. with emails, we had one more last minute meeting, Isaiah and I met with the Nemours Communication Coordinator from the Nemours Fund for Children's Health.  We will be speaking to two radio stations during the Nemours Radiothon on September 4th.  We met with the coordinator to share our story so that she can give it to the stations; that way their questions will be relevant to us.  I'm very excited to not only help Nemours but also continue to spread awareness of OI.  

I truly believe Isaiah wouldn't be doing so well if it weren't for Dupont (aka Nemours).  The staff at that hospital treats us like family; you can tell how much they care for Isaiah and want to see him excel and I am thrilled to call him a DuPont kid. <3

1 Week!!!

How is there only one week until our baby is one whole year old?!?!

The baby whose rib cage had doctors using words like "worrisome" is now looking stronger than ever, wouldn't you agree?

In honor of Isaiah's upcoming "one year" milestone, we took him to our local JC Penny for some portraits.

And we brought his highchair ...his very not-travel-worthy highchair... because....why not?

We knew we'd be limited on positioning Isaiah since he doesn't have full trunk control and we knew his high chair offers him fantastic support.

I wish I took a picture of us in the waiting area because we seriously looked funny.  There we were, stroller, car seat, high chair, and bags of snacks, blankets, toys...and other photo props.

Like wooden letters spelling out his name and... clearly we needed his Mickey hat.

It completes the look!

The photographer was wonderful; she took great pictures and did a wonderful job helping us get Isaiah into camera-ready positions.

Isaiah did wonderfully...but being cute for pictures sure is exhausting!

<3

This week, we have a DuPont trip for a helmet check in and an ENT appointment.  The helmet appointment will be full of annoyed faces, I'm sure of it, because I can count on one hand how many days Isaiah has worn his helmet since our last appointment.  This kid has been sprouting crazy mysterious fevers and I can't pinpoint a reason as to why...no new teeth are in the works so we're hitting the ENT to rule out another ear infection...and if that's ruled out then I'll contact Dr. B and his pulmonary team with my concerns and hope they can help.  Hopefully it's just a fluke and a result of a growth spurt?

Ugh.

Ok, that picture makes it all better. :)

First Official Hair Cut

So we've noticed that Isaiah's hair has gotten a bit out of control recently...

It's truly wild.  He has a bit of a wave to his hair and although it's thin, there's a lot more there than there appears to be...the blond color makes it quite deceiving.

In honor of his upcoming birthday, it was time to give our big boy a big boy haircut! (It's not going to wait until our hopeful Disney trip...that's way too far away.)

Warning:  Getting a hair cut probably feels crazily similar to a doctor visit so there was tears a plenty.

The stylist was great.  I held Isaiah and she worked around me.  She trimmed and trimmed...

I asked for her to use the clippers.  I wanted a short look around the sides- he's almost a big boy after all!

AHHH BIG BOY!!

Based on the majority of pictures, he may have been scarred for life...

But once we were home, Isaiah was back to himself quickly.

Here's the official before and after for you!

I feel like it makes his head look amazingly rounder and more even than ever before.  Can you believe this kid is going to be one whole year old in a little over a week?  We have portraits in honor of the big milestone on the schedule; here's hoping we get a big smile out of him! :)