Wednesday, July 30, 2014

Port Flush

Back in March, I posted some details about Isaiah's port, which is a small device that was surgically placed under the skin on his upper chest that's used for blood draws and Pam treatments every 8 weeks.

Last week it was already time for it to be flushed so I thought it was worthy of a blog mention since it's not an every day occurrence.

Isaiah's port needs a heparin flush every 4 weeks.  The flush prevents clot formation and catheter occlusion....and if you're not in the medical field like me and your eyes just glazed over... it keeps it working; if the port clogs up, it's useless.

Luckily we are able to have Isaiah's port flushed right at home by a local nursing company that was recommended by another OI mom.

We get a call the night before to find out what time the nurse will be stopping in.  This time the nurse was scheduled to arrive between 8 and 8:30am.  Knowing this, we prepared the area with Anecream and a sheet of Tegaderm (clear medical tape) about 20 minutes before the nurse's scheduled arrival time.  (You can see that below.)  The Anecream numbs the area so that hopefully it's not so painful for Isaiah when the needle goes in.

Daddy does a fantastic time distracting Isaiah.  This time I took some pictures but normally I hide in a corner.  Yup, mommy needs to man up about needles.  (Side note, I did a good job staying with Isaiah during this flush.  I had my head right up against his during the whole 5 seconds; it's good progress on my part.)

We have a kit delivered to our house full of most of the supplies and the nurse brings the rest.  The nurse needs a sterile mask and sterile gloves, a syringe of saline, some alcohol prep swabs, a syringe of heparin, a sterile "area" (that while cloth in the pictures on the right), and the little butterfly needle that has a clamp (I don't know the correct term).  Once she gets the needle in, she pulls to make sure she can get blood and then flushes...there's likely more to this...I'm normally hiding my face and trying not to cry with Isaiah.  Once the heparin is in, the nurse removes the needle, and places gauze for any bleeding that occurs, then cuddles, lots of cuddles.  

After this flush, Isaiah was hungry and exhausted because he had decided to wake at 5:30am that day.  I stole him from his daddy cuddles, gave him a bottle, and he passed right out for 2 hours.  And when he woke up?

It's like it never happened.

We went back to playing...

This kid has a box full of toys and yet enjoys an empty tissue box.  He's getting tissue boxes from us for his birthday, forget those toys. :-P

We're glad Isaiah has the port as his last IV experience wasn't great, but we know Isaiah isn't a fan of these moments.  A port flush at home is better than a blown vein at the hospital though so we'll take it. :)

Monday, July 28, 2014


For the last few months, I've been following a blog about a beautiful little girl named Brenna and her family.  Back in May, Brenna's mom posted about a blogger, Kristin, that wanted to share Brenna's story on her own blog and help raise some money for the family. It turned out that Kristin and her friend Tiffany had been featuring extraordinary kiddos like Brenna on their blogs since March and in June officially launched the organization:

For an entire month, GO SHOUT LOVE shares one child's story.

"We want to be able to provide an easy and accessible way for others to be able to help families who are walking through these hard times. We will have different ways to help with fundraising, spreading awareness, and offering support to these brave families. We believe everyone is capable of making a big difference and by equipping ourselves with the power of social media and the power of shouting out these stories of these sweet babies we know their voices will be heard and a difference will be made. We are also offering apparel with a message towards making a difference. When you purchase an item from us a portion of each sale will go towards the featured family of the month. Keep an eye out on our website for other fun ways we can band together and raise awareness and funds for these amazing families!" 

You might be wondering why I'm sharing this with you.

Yes, it's because it's a fantastic organization.

It's also because they want to feature Isaiah.

For an entire month.

The entire month of September!

They are going to share our story.

They are going to spread awareness of Osteogenesis Imperfecta.

They are going to shout love for Isaiah, for our family.

If you're on Instagram, go follow @GOSHOUTLOVE. You can also follow them on facebook.  I'm sure they are on twitter and stuff too but I don't tweet so I don't know how you can follow them there...besides maybe going to their webpage and clicking the bird at the top.  (Boy, I'm getting old.)

We are extremely excited for what these ladies have in store for Isaiah and we can't wait to help them spread OI awareness.


Oh, I just realized this post has zero pictures of Isaiah. That will not do.

Can you see his little teeth in there?


Wednesday, July 23, 2014

OT/Eating Update

Isaiah had OT on Monday.  His occupational therapist comes every two weeks and works on helping Isaiah to improve his eating abilities.  Nowadays, she has me hold his mouth a certain way while he eats to avoid his tongue thrusting (which has improved greatly), works to give ideas on what to offer him, and just introduced a straw to Isaiah's life (so, more of mommy holding his jaw and making him mad teaching him how to suck from it).

Since the spaghetti has gone so well, she thought mac and cheese would be a good choice for Isaiah to try and I was totally with her; he loved the pureed mac and cheese.  (Yup, pureed.)

Yes, he is scratching his head wondering why I would offer this to him.  haha.  I really thought he'd like it, but he was not a fan.  I'll have to make some homemade mac and cheese and see if that goes over better because he was not having it.

Although he will take more spanish rice from El Serrano...and refried beans...and pollo fundido (YUM), but like his mother, he gagged on the ground beef.

Tonight he ate some BBQ chicken and scalloped potatoes, but was repulsed by zucchini.  

Vegetables? pffffffffffffft.

I have a list of table foods to try, the veggies and such from soups, dinty moore stew, crackers...but...any more suggestions before we venture to the grocery story?

Monday, July 21, 2014

Great Weekend!

We had a wonderful weekend with Isaiah.  Although he's been dealing with some side affects from his antibiotic, he's still smiling...

And eating cookies.  Mickey Cookies at that!

Look ma, two hands!

On Friday, we said "THANKS BYE!" to all the oxygen in our house.  We haven't used it since February (and honestly probably should have stopped at least a month before that) and it was just taking up valuable space in the house, so it was time to go. :)

On Sunday morning, we took a trip to the Elmwood Park Zoo in Norristown, PA.  It was one of the last good weather days before the temperature and humidity are supposed to go up so we wanted to take advantage of it.

We had a ton of fun!  We got to feed Louie the Giraffe, watch spider monkeys crawl across their exhibit, and hang out kind of uncomfortably close to a few Bison (seriously, Bison are HUGE).

One of our favorite moments was when we fed the farm animals.  Those goats were hilarious and right at Isaiah's level.  He couldn't stop staring at them.

I heard they could eat my hat, I better hold onto it!

We posed with awesome photo ops
Um, This frog has a bump on his head.

Isaiah tried his carrier for the first time out in a public setting...

It didn't last long thanks to an empty belly but thankfully he was back to his curious self after some yogurt. :)

We loved to see Isaiah so curious and we definitely plan to head back there in the fall.

Fingers crossed for a slow week this week! We'd like a break-fee, ear infection-free, doctor-free week. (Now let's hope I didn't just jinx it.)

Friday, July 18, 2014

Helmet Update

I'd be lying if I told you Isaiah wears his helmet 23 hours a day, 7 days a week like he's supposed to.

But we have good excuses.  

Seriously, I swear!

He can't wear it with the c-pap unless we want to give him a nose job along with the head reshaping (the cannula pulls on his little nose).  (This could change after our next appointment with his pulmonary team in a few weeks.  Fingers crossed!)

He had to have it off during his latest Pam treatment because of the way the nurses checked his temperature.  It read too high when he was wearing it which could have been a concern (a fever could be a negative reaction to the pam or a sign of an infection in Isaiah's port).

Then he had to have it off because of the suspected compression fracture.

And now he has it off due to his 100 degree fever thanks to another ear infection.


It's a shame, because he's so darn cute in it!
Um, mom? You can't hide peas in pears. Nice try.

(Not that that's important. It's just a perk.)

Anyways, even with it off, the shape of Isaiah's head has improved.  We had a check in on Tuesday at Lawalls in DuPont and they removed a layer from inside of the helmet.

They also measured Isaiah's head and compared their measurements to the first time he was measured.  When he started going to Lawalls, the difference between his left and right side of his head was 7/8"!! Almost an inch difference and you could tell; the back left side of his head was very flat.

This time the difference was only 4/8"!!!!!  He's almost there!  Once he's down to 2/8" difference, he'll likely be released from needing the helmet!

So even though he hasn't been wearing it as he should, he's made remarkable progress in a short time. The bulge on his right side is so much better.  The back of his head is so much rounder.  We know it's thanks to his new love of laying on his right side, sitting up in his chairs like a big boy, and his small amounts of time in the helmet...but we'll take it.

And now to get over this ear infection and back into the helmet...Happy Friday all!

Monday, July 14, 2014

Shopping Just Got Better!

Thanks to an early birthday present from one of Dave's best friends and his beautiful new wife, shopping just got a lot more fun!

Usually when all three of us go food shopping, we bring the stroller along and one of us pushes the stroller and then other pushes the cart.  When I'm by myself I have to decide what's easiest- putting Isaiah in the cart and just using the basket on top/piling things around him (because that's safe....not) or using the stroller and awkwardly carrying a[n overflowing] basket.

Well not anymore!

This cart cushion is made by Summer Infant and it, along with his Snuggin Go, is just fantastic for Isaiah.  He can see while we shop now!

He was looking all over yesterday during our trip to BJs.

I still have to tweek his neck support, but he was very comfy and very happy.

"Ooooh Mom, they have yogurt coupons on here!"

We ended up shopping into Isaiah's morning nap time and he started getting a bit crabby....Big Block Singsong came to the rescue (Have you seen these short videos yet?  Go to youtube and watch now if you haven't.  Too cute...and a great distraction when finishing up the last 5 minutes of shopping.).

This cart cushion is just fantastic for our little's squishy, comfy, and protects Isaiah from falling over.  It'll take some practice before I can use it on a shopping trip sans Dave, but it's a keeper for sure!

Thank you, Matt and Heather!! <3

Friday, July 11, 2014

11 Months!!

Wow, 11 months ago today, Isaiah was born!  In this month alone, he's grown so much!  He just looks older, doesn't he?
He's learned the art of the high five, which makes me think I should be teaching him to fist bump instead. #sorrykidyourmomisold

He's finally gotten comfy rolling onto his belly and he's getting better and better at sitting up straight!

He ate his first complete meal of table food- spaghetti -and loved it! Along with that, he continues to eat purees, all stage 2, and is obsessed with yogurt.

Oh, and he got his first TWO teeth this month!

Happy 11 months, Isaiah!  Only one more to go until we stop talking months and start talking YEARS!

Wednesday, July 9, 2014

Tantrums Already?

Last night Isaiah had dinner with Dave and I...and I don't mean that he ate some purees at the same time we had spaghetti.  Nope.  Last night Isaiah ate spaghetti! and LOVED it!

Recently meal time has involved some tantrums.  Isaiah seems to be getting frustrated by what we're offering him.  When I hold him while I'm eating, he often will grab my fork (or hot dog) and put it right to his mouth.  He feels he's ready but we aren't quite sure so we're taking baby steps.  Most babies are probably eating table food exclusively by this age, but remember, he was on a feeding tube until January. He has some issues still thrusting his tongue (this means he sticks his tongue out when eating); this thrusting needs more improvement before we can give him most table foods.  When we try table foods, his thrust causes him to push the food back out, but it could also cause the food to go right to the throat...without being chewed.  Not a big deal right now given that I'm giving the tiniest bites (of soft foods) in the world...but clearly this could be scary.  Who wants to perform the heimlich maneuver on a severe OIer? Anyone?

So for now....tantrums.

The tantrums can be a bit confusing because they sound extremely similar to Isaiah's "break cry", and they are extending beyond meal time.  His break cry is the cry we only previously heard when he fractured, so color us confused nowadays when he cries like this over everything.  Diaper changes, hunger, tired of the toys he's being offered, waking up, wanting to be held, loud noises....

Those are the most fun.  Just so you know, when you come to our house, there is no sneezing, no clearing of the throat, and especially no dropping things.  ;-)  Please don't drop things out in public either.  This message is to youguy in Home Depot yesterday, who dropped something in the aisle next to us and scared the pants off of Isaiah (well, it would have, if he was wearing pants.).  Seriously, I think everyone stopped what they were doing to stare.  He was SO loud.  and purple.  and I swear his head spun completely around (Isaiah, if you are now 18 and reading this, I love you and your cry, but you are in an Exorcist stage right now and it can be kind of crazy.)

Craziest part?  I picked him up, cuddled him for 2 minutes, put him down, and just... this...

Hysterical laughter.  #crazybabyalert #heknowswhatheisdoing


With all seriousness, in regards to this new side to Isaiah...well, we're not tolerating it...or at least getting there.  Don't get me wrong, I still look him over while my heart is in my throat worried that it could be a fracture, but I'm slower in responding now and if I know he's just trying to get his way, I find other ways to calm him other than picking him up or just giving him what he wants.

Patience, Isaiah.

Who knew temper tantrums would start before 1 year?!

Monday, July 7, 2014

Isaiah's First Fourth

We had a very calm first 4th of July.

We had planned to go to a local parade on Thursday night, but it got cancelled thanks to some insane storms that blew through some of our area (we actually only got a bit of rain and some thunder)  Those storms may have taken our first parade, but it also gave us amazing, low-humidity!  It was a wonderful afternoon to lay outside so we made up for our missed parade on Friday with a little lawn time.  We did some staring up at the sky, blew some bubbles, and ROLLING ONTO OUR BELLIES!  

Isaiah hasn't needed us to help him onto his belly lately.  He's been rolling over on his own.  The greatest part about his rolling into this new position is that he is so comfy that he falls asleep!  It was a fine was to spend the day, enjoying America from our own front yard...

Eventually we took a walk around the neighborhood and checked out the clearest view of Lancaster we've ever seen.  It was amazing and this picture doesn't do it justice.

Later in the weekend we learned of another reason Isaiah was grumping this week.  Our boy is sprouting another tooth already! I tried to get a picture, and this is the best that I could get...

Hopefully he'll show off his toothy grin soon, instead of hiding those two teeth with his tongue all the time!

We hope you had a great 4th of July weekend!  Hopefully next year we can introduce Isaiah to FIREWORKS! (They are just waaay past the bedtime of a 10 month old.)

Thursday, July 3, 2014

Getting Better

If you're a fan of Isaiah's Facebook page, you know what happened after the big sneeze of 2014. 

Isaiah improved a lot during the day, and we thank his pain meds for that.  We spread them out as the day went on, and his last dose was last night.  He's doing extremely well!  We're still taking precautions, but Isaiah is already feeling better.  #superbaby

Because I'm crazy (and Dave and his dad are attacking some stuff around the house so the dining room table is completely covered with stuff), I decided today would be a good day to try a real bath by myself for Isaiah.  In our tiny bathroom.

I was nervous but I planned out every detail.  I made sure he was sitting in a reclined position and was well-padded. I had his towel and clothes ready on our bed.  I had another towel ready on the toilet seat so I could get him to our room without dripping water everywhere.

I put him in the tub, he started to cry a little (it was a very "I'm not too sure about this; this is new" cry), but was calmed immediately with his pacifier.  Once I started squeezing water all over him, he started stretching all 4 limbs and reached for the water.  Then he started kicking and splashing like crazy!

He was thrilled.

I didn't bring my phone in with me because honestly, I didn't want the distraction, but when Dave came by, I asked him to bring it because Isaiah was so happy and I wanted to remember this; this was his first bath in the bathroom.  (It's a silly milestone, but it's a milestone none the less.)

Look how happy he is again!

I missed that giggle.

So clearly, my life really is getting easier? It's A LOT easier to fill and empty Isaiah's tub IN the tub. I also don't need his mattresses at all so it's less prep.  

Isaiah has more room to roll on the bed too, as compared to the dining room table.

After his bath, we had some cuddle/tummy time and before we knew it he was falling asleep and ready for a nap.

All that splashing is exhausting you know!