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! :)

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 older...plus 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. :)

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 House....it 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 sick...it'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!

:-D

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

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

#TeamEverly

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.  

RIP

Everly Leyden Baker

12/28/2014  -  01/18/2015

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 Delaware....so 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.

NO.

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.

No. 

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 failure....so 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!!  

ARGH!!!!!!!!!!!!!!!!!!

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

Argh.

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.