Tummy Time!

Back in March, I told you about how we were doing tummy time....and it went great for a while.  But Isaiah has grown and he doesn't safely fit on the pillow I was using to put him on his belly...so we kind of just stopped.

Whomp whomp.

Isaiah needs tummy time, now more than ever.  It would be really good for his back, hopefully helping us to slowly correct the kyphosis (curving) in his lower back and to help strengthen his neck muscles/head control...and given we can't sit him straight up right now, we're limited on what we can do for his head control.  

Getting Isaiah onto his belly had proven challenging.  Rolling him didn't work well enough because he didn't know how to get his arm out from under himself.  I was scared out of my mind to lift him up, turn him so he faced out/the floor and put him down with my hands under his ribcage because I was too scared to break those fragile ribs.  I once broke 4 of his ribs with my thumb just by repositioning him to change his diaper, so I imagine you can understand my trepidation.

I spoke with a few other OI moms, and they inspired me to just do it.  I realized that I already had the first two steps down...I lift him all the time....and a while ago I mastered flipping him around so he could look out at the world...all I had to do was put him down.

I won't lie, I panicked doing it.  I held my breath.  And he cried the first few times (which did not help with my fear that I was hurting him! lol)..but then he started liking it!

I've grown more creative in offering him toys, and he's begun reaching...

Reaching higher than ever before!

And the craziest part?  He's starting to bear weight on his arms!! (AHHHHH)

And lift his head higher!

But the one thing that drove me crazy is that he'd never turn his head.  No matter how much I'd promote him to do it, he just didn't...until last week....

I was so excited to catch that moment on video!! It happened during PT last week...

And has happened a lot since then!

I am hoping to keep taking Isaiah's cues on tummy time..we tend to do it after his nap when he is fresh...and helmet-free to avoid the weight (side note: he's wearing that helmet for a few hours in the mornings, but that's it...after speaking with his PT, we're just too worried about the extra weight on his spine).

We're really seeing some progress after this latest Pamidronate treatment...eating solids, playing on his tummy....hopefully he'll continue to surprise us all! :)

<3

TABLE FOODS!

I swear, one month ago, I wouldn't have thought I'd be posting this, especially so soon.  One month ago Isaiah's tongue thrust was so bad still (meaning his tongue would always hang out, especially while eating, and would push everything out of his mouth) I really swore he'd never stop eating pureed foods (I can maybe be a bit dramatic sometimes)...

You want me to do what with this stuff?

But, all of a sudden he's got it! Our baby is officially, happily, eating/choosing table foods!!!!

Eggplant, chicken, rice, potatoes, zucchini, hot dogs, beans, pancakes, watermelon, crackers, strawberries, even peas and green beans (well...sometimes)....If I am eating it, he must have it.

Except the yogurt bites...they are all his. This kid would eat yogurt bites in the morning, yogurt bites in the evening, yogurt bites all.day.long.

And he's feeding these things to himself!

It's like a light bulb went off when Pam was over.  He was feeling good and was ready for the challenge.  He is still working on his pincher grasp when picking the food up off of the table, but he gets at least 50% of his own and that is HUGE, fast progress.

And it is SO AWESOME!

Ya know what else is awesome? His tongue thrust is GONE.  Gone just like that.  BOOM, BABY!

He's also moved on from formula since his first birthday and has been exclusively on whole milk for the last week.  He loves it.  He's been eating 8 oz bottles before bedtime...8 OUNCES! (I imagine a few other OI moms are like whaaaaaaaaaaaat? I KNOW!) CHAMP.

We're still working on one more piece and he's almost got it....straw drinking.  Thanks to pinterest, I found a blog written by an occupational therapist who recommended the Take and Toss cups to help teach straw drinking.  You can squeeze the cup so water goes into your babe's mouth.  It's really helped things.  Isaiah has everything down but the suck...however you can hear him trying now.  It's only a matter of time.

 

Sometimes I just can't believe it.  9 months ago this kid was eating exclusively through a tube...

YAY! :)

AI DuPont Radiothon

Yesterday, Isaiah and I headed down to DuPont to help out with the 4th annual Radiothon.

Actually, we also fit in an appointment with his ENT's PA (Physician Assistant) who confirmed that Isaiah has an ear infection. whomp whomp.

You'd never know his ear was bugging him though!

After our appointment, we arrived early to the Radiothon.  The Radiothon is to raise money for AI DuPont.  Seven local radio stations were there to broadcast live and interview physicians, nurses, volunteers, patients, and families like ours.

There were all kinds of fun shenanigans going on.

We met Olaf! and Anna!  AND ELMO!  Isaiah loved Elmo.  We were so busy interacting that I didn't get to snap a picture.  (But it gave me hope that Isaiah will love when he finally meets Mickey.)

We were interviewed on 3 radio stations.  Deleware 105.9, WDEL 1150AM, and WSTW 93.7.

I mostly babbled but I tried to inform the listeners both of how wonderful DuPont is and on what OI is.

Always spreading awareness. ;-)

We had a wonderful time and know that they surpassed their goal for this year and raised $257,753!

We love DuPont; it's our "safe place".

It's the place where Isaiah doesn't get tons of stares.

It's the hospital that parents from around the world bring their kids to because, well, they are that good! (Seriously, we've met people from China who come to DuPont for care.  China.)

It's the place that doctors, nurses, cafeteria employees, and more know us by name when walking the halls.  It could be because Isaiah is so darn adorable, it could be because I am a crazy lady, or it could be because that's just the kind of personalized care you receive there.  You are remembered.  You are not just a file or an insurance card.

It's the place that has doctors and nurses who listen to parents.

It's amazing.

I truly don't know where we'd be if the other OI parents hadn't recommended DuPont to us.  DuPont is almost 2 hours away from our home and is so worth the drive.

We're lucky to have such an amazing hospital to bring our son to.  Thank you Holly and Sarah for inviting us to help DuPont for a change.  If you ever need anything else from us, please don't hesitate to ask.

<3

#ShoutLoveforIsaiah

I'm having trouble starting my blogpost today.  I am just in awe of all of the LOVE everyone is "shouting" for Isaiah, for our family and it just leaves me speechless.  (If you know me, you know that the word speechless does not usually describe me.)  Monday began the month of September, and with the first of the month, came so much love thanks to the ladies over at Go Shout Love.  Do you remember my mentioning this excitement back in July?

Well on Monday, this picture popped up all over my Facebook, Instagram, and Twitter (ha, can we take a minute and laugh at my joining Twitter? Wish me luck because it kind of hurts my head. Also, find me @OIbelieveIsaiah) feeds.

And so began SO MUCH LOVE! I have received many new followers, messages, comments, and love, love, love for Isaiah.

In case you don't remember my post about Go Should Love, let me briefly tell you about what they are doing for our family.  Along with shouting love, they are raising awareness of OI, and raising funds for our family.  They raise funds by offering items to purchase in their shop...like these awesome shirts...

 These shirts were created specifically in honor of Isaiah.

Another amazing item, created in honor of Isaiah, is this blanket, made by Love and Lullabies....only 10 are available!

And this print, made by LifewithPeanut.

Our family gets a portion of the sale of each of the items listed above.

They'll also be hosting an auction of items on their Instagram (@goshoutlove and @goshoutloveauction) later this month.

If you did purchase a shirt (and if you haven't and are interested in purchasing one, go here), please share a picture wearing it when it arrives!

Thank you to everyone for shouting love for Isaiah.

Isaiah and I will be headed to AI DuPont tomorrow afternoon...and this time it's for something fun (and maybe a stop in with an ENT. ha)!  They are having their annual radiothon, which started today, and we are going to share our story and our love for DuPont with two radio stations at the Radiothon event!  We'll be on between 4 and 6 pm.  I'm not sure which stations we'll be on, but the 6 stations that air the event are listed on the link for the radiothon.  I was told that we will likely definitely be on WDEL 1150AM, which you can listen to right from their website that I linked for you.  I only have 5-10 minute window of time where I'll be told what station we'll be on and when, so as long as the wifi works with me, I will let you know what station we'll be on through my instagram/facebook

Clearly there are lots of exciting things happening this month!  We are just loving all of the attention we are bringing to Osteogenesis Imperfecta and I can't wait to share our love for AI DuPont.

<3

Kitchen Fun

Isaiah has discovered the kitchen!  He rarely spends time in there but can see it from his high chair in the dining room...I went to grab a bowl on Thursday and shut the cabinet rather quickly, causing it to bang...apparently this was the most hilarious thing I could have done. I ended up spending the next 5 minutes opening and slamming shut the cabinets because that laugh is amazing.

Later, we introduced Isaiah to the cabinets. He got to put his hands right on them and knew what to do....

Before I knew it, I was wracking my brain, trying to find other things for him to open and shut.

Then I decided that I needed to find a way for Isaiah to get those cabinets doors independently. 

Yup. I'd think normally, parents of kids this age are trying to keep their kids' hands out of the cabinets, and here I am trying to figure out a way to get Isaiah into them! 

2 hands!:

I feel like I need to add that I was right there (obviously taking 573 photos).  I don't so much recommend that you leave your child alone while trying to get into your cabinets...but it sure is amazing watching a baby discover something new, isn't it?

So that's what we've been up to in this house!

Don't forget to check us out over on Go Shout Love.  They are shouting LOVE for Isaiah for the whole month of September!

Isaiah's Spine

The last day of Pam went well; Isaiah and I watched a movie and the time went rather quickly.

When it was all done, Dr. B stopped in to see us and talk more about Isaiah's back.  

I had seen the radiologist's report.  "There is a midthoracic dextrocurvature and lumbar levocurvature.  There is kyphosis at the thoracolumbar junction."

I didn't know what the heck any of that really meant, but I saw the word curvature and could take a guess.  I saw the word kyphosis and pictured a brace, as that's what has caught my attention with other OIers and the word kyphosis was involved.  My heart had been in my throat since seeing the findings and since my brief meeting with Dr B.  

Dr B. knows me too well and knew I was upset.  Upset with the findings that confused me and upset thinking this was all my fault.  I have been pushing Isaiah.  Pushing him to get head control.  Pushing him to sit up.  Pushing. Pushing. Pushing.  Pushing him to do these things helps him develop muscles.  Developing muscles is key to help protect those bones. 

But do you know what you get when you push a spine...when you have it in the sitting position before it's ready....when it has a heavy head, that's so big that it is off the charts, pushing on it?  You get curving.  You get "wedging".

Do you see the lines drawn on the the x-ray?  The bottom vertebrae look great but that mid-lower area is wedging...curving...(ignore the very crooked thing in the picture...that's just the tubing hanging down from Isaiah's port).

We believe one of the problems is the seating I've been using for Isaiah since we came home from the hospital in September of last year.  I thought soft seats were the way to go but 2 of 3 chairs are hammock-like a when Isaiah sits in them, he kind of hunches.

Not good.

He needs a flatter, more stable, surface.

I showed Dr. B. how I have been holding Isaiah to practice head control.  We agreed that I need to grow a third arm in order to support Isaiah's lower back because he again hunches.

We talked about trying to give Isaiah time to let this fix itself naturally...meaning without a brace...If I stop putting him up all the time, and give him more time laying to play, he'll get there eventually.  Tummy time is important and something I've avoided because Isaiah always gets his arm stuck.

Now I am working on making tummy time possible.

Water therapy continues and that will help Isaiah develop those important, bone-protecting, muscles.

For now, when he does sit up, we put Isaiah in places that we know he is fully supported...

And the helmet? Is only happening when Isaiah's laying down.

His PT and I are afraid that the extra weight, although only a few ounces, isn't helping his spine, so it's best not to push it.

Luckily we have an awesome PT who is helping me review Isaiah's seating and giving Isaiah proper lumbar support.  Backing off kind of goes against some OI theories of keeping OIers moving...but we are keeping him moving, just in a horizontal position instead of vertical...for now.  Isaiah needs time and we are giving it to him.

Do you know the amazingly positive thing that we saw in the x-ray? When comparing it to his x-ray from when he was first born?

We saw brighter bones.  They aren't as "clear" as they were a year ago.  That shows that his "Pam treatments" (pamidronate treatments) are working...

and that is a wonderful thing.

Pam Party

This August Pam party has been a bit quieter. Without Dave and our buddy Silas and his family, I think we've been twiddling our thumbs more than normal.

For the most part, everything has gone well. I didn't cry when the nurse accessed Isaiah's port, and I got us all moved in to the Ronald McDonald house all by myself on Monday night! (That last part was quite the show. I should have taken a picture but imagine me pushing Isaiah in his stroller and pulling a luggage cart FULL of stuff- clothes, his breathing machine, suction, toys, play pen, food, and more.  At 6:00 at night. It was a good time.)

Nap time on our last day at the McDonald House. 

I've done a ton of complaining and yet I still have gotten things accomplished.  Gavin's wonderful family has been there to watch Isaiah when I need a quick bathroom break and pack up the car, but other than those few moments, Isaiah and I have been together 24/7 and loving the bonding time. 

We've had fun watching the boys play and talk with each other, and Isaiah has also loved Gavin's big sister.

From a medical standpoint, everything is going ok. ...yep, just ok. Pam has been flowing and you can tell Isaiah is already feeling good from it which is great. We had X-rays of Isaiah's spine taken yesterday before Pam started, to compare to last year's...and that has me worried, but not educated enough to share too much yet. I can tell you there is significant curving to Isaiah's spine already, and I was recommended to lay off of pushing Isaiah to get head/torso control any time soon.  I think I may be pushing him too hard. :(. His muscles aren't strong enough to support it and the result is a curving spine.  :( :( 

We had a helmet appointment on Tuesday as well.  (I bet you're thinking, he still has the helmet? We never see it!  Helmet-mom fail. Sort of.) I tried multiple times to get him back in it since his last apportionment but he was miserable every time. I honestly went in to this appointment ready to say goodbye, I give up.....turns out that the helmet needed some major tweeking and they took out two layers. It's so much better now!  It has to stay off for Pam (bc it raises his temperature, which alarms the nurses into thinking Pam is causing a fever) but I will be getting him back into it tomorrow!  

I had been planning to stay at the McDonald house until tomorrow morning, but i am itching to get back home, so we'll be headed back after treatment today.  

We miss daddy, our beds, and Carl Marl. :).  We'll catch you on Friday. :)