Pam!

This Pam treatment has been a breeze...and dare I say fun?  (Pam is short for Pamidronate.  It's basically a medicine that Isaiah gets every 8 weeks to help strengthen his bones, help with the chronic pain often associated with OI, and promotes bone growth.)

Day 1 went off without a hitch.  The nurses were able to access Isaiah's port easily and had Pam flowing in no time.

We had a bonus test while in Day Med.  He got a follow-up PFT (a Pulmonary Function Test- it measures how well the lungs take in and release air) while getting his Pam.  Isaiah's gone through this test a number of times in his life.

Real men wear pink [PFT bands].

He also had fun meeting new friends and hanging out with old ones. :)

Isaiah finally got to meet his buddy Josh.  

And here are the 3 local(ish) OI babies and their mommas hanging out!

(Gavin and Isaiah are getting their Pam while Josh is visiting for a separate doctor appointment.)

Day 2 involved a lot of napping...

Some rolling over.

I love the shocked look on his face.

And some more baby bonding.

We even continued the party after Pam was over at the Ronald McDonald House. We stayed there for this treatment to see if it'd be less stressful than driving back and forth every day from Lancaster to Wilmington.  It was a HUGE difference and SO much fun hanging out with the other families.

After our play time last evening, Isaiah was refusing his bottle and had me concerned for a moment...but I decided to offer him some pears, and he ate the entire container! I was so excited, I forgot to take pictures! (WHAT? Blogging mommy failure.  But it happened, I promise!)

Day 3 has been uneventful so far.  Isaiah came was a lot of extra fun stuff today.

Since we're headed home right after Pam (in these lovely flooding rains), we decided to bring in every toy we brought with us for our trip...and why not bring a chair too? Oy! lol  Isaiah is sleeping at this moment, Pam is flowing, and life is good.  We're hoping to attempt some oatmeal and sweet potatoes when Isaiah is hungry next (why not?)

Happy rainy Wednesday!

Sleep Study

Sunday night was a fun one...we drove to our second home, AI Dupont, and had Isaiah's first (and hopefully only) sleep study.

Isaiah had to do a sleep study to see how he's doing without the c-pap.  If all went well, we can pack it up and send it back to the oxygen company.  If not...well, we'll find out the plan from Isaiah's pulmonary team.  Results should take 3-4 weeks.  I'm hoping we don't hear for 4 weeks; that would be a good sign that he is a-ok.

Dave came with us to help us get settled in.  He headed over to spend the night over at the Ronald McDonald House once Isaiah was asleep for the night.

First though, we had to get settled in.  There was a bed set up...but that wasn't going to work for an 8 month old.  They just moved the bed to the side and pulled a crib in the room.  Major perk? I got to sleep in the bed.  

Isaiah got set up...he handled the bands around his torso just fine...

But when it came to all those sensors and that cannula....

Grump monster.  Understandably.  Who wants all those wires attached to you? And how can anyone sleep with all of those wires?

Somehow Isaiah did end up sleeping through most of the night. He woke up at 10pm and 3am for bottles but other than that he slept pretty peacefully.  (I on the other hand did not.  I couldn't see his heart rate or oxygen saturation and that drove me bonkers! On top of that, I asked questions and wasn't too happy with the responses....ugh, he's ok, he's ok, he's ok!)

Isaiah woke up like his happy, normal self at 6am.  He was quickly disconnected and we ran him over to the Ronald McDonald House (where Dave stayed for the night) to give Isaiah a bath before Pam started at 8am.  

Taking all of the gunk off of his head was fun...let me tell you...blech!

We'll let you know the results of the study when we hear....prayers for good news!  Right now we have one more day of pam, and it's been a party this time!  Will share more on that tomorrow, right now I have some other exciting news.  Remember when I told you we had a photographer in our house last week?  Well, if you are local and can get your hands on a Lancaster newspaper this Thursday, be sure to check out the Lifestyle section, as Isaiah and Wishbone Day will be featured!  If you're not local, the article should be on http://lancasteronline.com/  And you know...I'll probably be so excited that I'll post it here too. ;-)

Our First Story Time!

Last week, Isaiah and I went to our first story time at the local library.  

He LOVED it.  He focused during story time (while babies crawled all around him).  I'm pretty sure he sang.

He definitely danced.

We'll likely go back.  We're missing this week due to PAM and possibly next week for Wishbone Day, but we'll be back!  It was a little hard for me, I count my blessings every day, but when you have a room full of mobile, extremely active babies.....it can hurt your heart a bit (if you let it) when your baby can't do those things...YET.  The positive thing is we all know I don't let myself stay in that place.  How can I?

Seriously, look at that smile.

This kid still comes with a boat load of stuff.  Not only are we getting PAM, but last night Isaiah had a sleep study.  Updates on that this Wednesday (if not beforehand)!  We shouldn't get the results for a few weeks though, unless something is wrong, so let's hope we don't hear for a while.  ;-)  When we do, hopefully they'll be telling us we can send that c-pap, oxygen tank, and suction machine (well, I wouldn't mind keeping that one) back to the oxygen company.

Oh man, only bringing a baby and a diaper bag on outings? YES PLEASE!

Ready for Wishbone Day Yet?

Isaiah and I are continuing to get ready for Wishbone Day. We may even have yellow decorations ready to hang in the house.   Before we decorate though, we had to spread the word to the locals!

We spent some time writing a letter to our neighbors.  (Are you visiting the blog because you received a letter?  If so, hi there! Welcome!)

(Can you read it? I just took a screen shot of the document.)

Once we got a few printed, Isaiah got to work folding.  (Hey, you have to start them early!)

Sealed with a...kiss?

Once folded, I collected them in my handy baby wipes box (We just celebrated Earth Day, we're all about recycling and reusing in this house!)

Once we had our letters ready, we went on many walks all around the neighborhood spreading awareness.  Hopefully our neighborhood will be YELLOW on May 6th (11 days away, people!).

An awesome friend of mine (the one that's having the yellow party) is also spreading awareness by posting flyers in a few local stores.

We're continuing to work locally ourselves...I don't want to tell you too much yet, but we had a photographer in our house Wednesday night. (whaaaaat?)

I love when Isaiah makes goo goo eyes at me.

I'll be asking you to share your yellow pics with us again this year.  You can do this by tagging Dave or I on Facebook or instagram (@mrsvickymartin) or emailing your picture to oibelieveinisaiah@gmail.com.  (By doing so, you'll be giving me permission to put it in a video like I did last year.  I'm stuck on a song idea though, anyone have one?)

I only included this picture because Dave is in his yellow and this picture is awesome.
(Also, MONKEY BUTT!)

Get your yellow people!  Happy Friday! :)

Easter Recap

We hope everyone who celebrates Easter had a wonderful one...and if you don't celebrate, I hope you had a wonderful spring Sunday. :)

We were excited to celebrate Isaiah's first Easter.  I gathered Isaiah's gifts (no candy this year, obviously), and set up Isaiah's basket on the dining room table before bed.  Strangely, when we woke up (at 5:30am, because Isaiah was too excited to sleep!), the basket was gone and a pink egg laid on the table, under a blanket, in its place.  Inside of the egg was a little poem (Someone is making Baba- Isaiah's great grandmother- proud)...and so we were off to search for Isaiah's Easter basket.

At 5:30 in the morning.

I think there were a total of 5 eggs hidden around the house, each with a clue inside....I'll spoil it for you, Isaiah's basket was in the ottoman in our living room.

Isaiah was highly entertained by the eggs, the rhymes, and the end result.  

He laid with his basket goodies for a good 20 minutes while enjoying a spring episode of Mickey Mouse Club House (who's surprised?).

Later in the day, Isaiah's grandmom came to visit and spend some one on one time with Isaiah; she also took a great Easter picture for us.

The rest of the day was spent with family (I forgot to ask for permission to show their pics on the blog so you just get a recap).  Isaiah got to meet lots of family and was absolutely in love with his cousins.  They made him laugh (I'm talking crazy whole body hysterics) and told him some great Calvin and Hobbs stories.

We were really impressed with how well Isaiah handled the day.  When we arrived, the party had begun and it was loud and exciting and Isaiah just soaked it all in.  He smiled, he observed, and he played.

We're so excited that we were able to begin new traditions with Isaiah....I'm just hoping that in the future....some of them start after 7am, or at least sunrise? :)

Big Changes

Last week marked 4 weeks that Isaiah has been off of his c-pap.  Happily, the tape and tubes are just a memory right now (and they will hopefully stay that way).

Look at how Isaiah has changed in just 3 short months! My goodness!

As the last 4 weeks went by, Dave and I got more and more itchy in our house.  We started going out more with Isaiah, we started taking him out to the backyard.  

We've started living...really living...our life as a family. 

We've lost a lot of the fear we had for him (or we've learned to face it, I'm still trying to decide on that).  His lungs are stronger now.  His bones are stronger now.  He's basically sleeping through the night (besides a bottle or two).

Did you know he still had night nursing?  For 6 months, Isaiah had night nursing.

Had.

I contacted Isaiah's doctors who both agreed that we could move on from having the night nurses for now.  (They say "for now" until Isaiah has his sleep study at the end of this month.  If we find out he's having issues while breathing, they may recommend he go back to wearing the c-pap at night, which would bring back the opportunity to have nursing if we want it.)

We had a team of 3 nurses who very much cared about Isaiah.  

The nurses took care of Isaiah out in the living/dining area of our house.  Isaiah slept out there every night while they hung out near by.  They made notes and listened to his lungs every hour, but honestly as time has gone on, they were all noting basically the same thing, Isaiah is progressing.  

They changed his mattress out when he woke, changed his diaper, and partied with him during his 3am parties after I fed him bottles.

For the most part, they treated him like part of their family, some even like their own child, and we are forever grateful. 

It's time though.  It's time for us to be a family.  On our own.  It's time to finally experience new parent nights (we were spoiled with being about to sleep through Isaiah's 3am parties).

We ended night nursing one week ago.

Isaiah now sleeps in his room at night.  If he wakes at a crazy hour (5:30am on Friday. Seriously, kid?), we can now bring him into our room and cuddle with him while he giggles.  (I guess we could have done that while the nurses were here, but our bed isn't quite that big for all of that cuddling.)

We so appreciated everything Isaiah's nurses did for us.  (How many first time parents can say they slept through the night for the first 4 months of their baby's life?  Yes, you probably want to stab me for that...but it was a perk of having the nurses watching over Isaiah and his eating through that tube).

We may or may not have their contact info so we can keep in touch and share pictures and exciting moments as Isaiah grows. ;-)

Coincidentally, as we said goodbye to nursing, we received a letter in the mail (along with a phone call on the same day) from the company that supplied us with Isaiah's feeding tube needs.  We stopped ordering months ago but held onto the supplies "just in case". (Remember, I have that "if we have it, we won't need it" mentality....even though I can't wait to get it out of my house!)  Well, they were calling to collect their machine.  They sent us a box to return everything in via UPS.

I took about 2.5 milliseconds to pack it up.  Although it made me a tad nervous to send it back, I was more eager to just get it out of my house!  Isaiah hasn't needed it since January.  He doesn't need it anymore.

This aspect of Isaiah's life, his eating through a tube, Dave and I having to place that tube... can now just be a memory.

Thank goodness.

Now if we can just get rid of that c-pap and those oxygen tanks....then hellooooo NORMAL (ish) LIFE!

"Hoppy" Easter

Happy Easter to you and yours!

Interacting with Isaiah

Recently Isaiah has been adventuring out more and more.

Whether it's a quick run to a local craft store or a family get together 2 hours away, Isaiah's really learning to enjoy our trips.  I am constantly learning when on these trips with Isaiah; recently I've started to really take note as to how others perceive Isaiah and how they interact with him.

One of my biggest fears for Isaiah is that people will treat him like he has some kind of contagious disease or like he's in some invisible bubble.

Although I know people want to protect Isaiah, he's still a little baby boy, with normal little baby boy wants, needs, and interests.

He wants little kids to come say hi to him.

He wants them to play with his toys with him.

He likes when others stroke his head or hold his hand.

He loves when people make silly faces, laugh in goofy monster voices, and sing songs.

Like your child, he has two eyes, a (loud) mouth, and a belly button.  He smiles and laughs, like your child.  He's also unique, like your child.

Yes, he has OI.  He also has a beautiful smile, a contagious laugh, and an obsession with toys crashing.

Yes, his bones are fragile, but your child touching him won't automatically break him.

Please know and understand that.

Please know and understand that if you tell your child "not to touch him", I worry that the stigma that people with disabilities are trying to extinguish will continue.

We know that's partly our fault (in regards to Isaiah).  We don't even let others hold Isaiah off of his mattress.  When new kids come up to meet him, we're on guard because we do want to protect Isaiah.  We're on guard out of instinct, but we still want the interaction for the sake of everyone involved.  We're on guard because we're his parents and it's our job to protect him, like it's your job to protect your child.

If your child interacts with Isaiah and Isaiah has a break, please remember that his OI caused him to break, not your child.  I can't predict how we'll react when he does fracture and we know it occurred during play, but I know we will never ever blame anyone for the break.  We'll blame the OI.

In our eyes, we liken it to a skinned knee on an active little kid.  It's going to happen because we want Isaiah to be an active little kid.  I've thought long and hard about how I'd explain Isaiah's OI to little ones.  Maybe I'd tell them that Isaiah has special bones.  I'd definitely say that we have to be gentle.  I'd show them by example.  I'd recommend you show them by example.

Please, don't be afraid to have your child interact with Isaiah.  We will be there to facilitate and play too.

OI is a condition that Isaiah has, but it's not who or what Isaiah is.  We are going to raise Isaiah not to be afraid...we're going to raise him to enjoy life to the fullest.

If you have a moment, please watch this video that a fellow OI mama put together.  Look at the beautiful children in this video (Isaiah has 2 cameos at the end!).  You will see some of them riding bikes, climbing trees, dancing, playing in the snow, doing gymnastics, playing sports....They all have OI and they all live life to the fullest.

With every broken bone, I swear I lived.

______________

I'm adding Dave's thoughts on this.
"The tough thing is we know this is mostly our fault. We are still discovering how fragile Isaiah is and although we needed to prepare for the worst, we don't want to keep him in a bubble either. We are going to ask others for an unreasonable amount of patience and understanding with this as I'm sure there will be plenty of times we are talking out of both sides of our mouths (be careful, but not too careful)."

In the beginning with Isaiah, we were scared, most times we still are, but the fear is less.  I don't know how to fully explain my feelings on this topic as I know we will say things like "he could break a rib sneezing" (which is scary and true) but now I want you to let kids play with him.

It is confusing.  As much as we want everyone to be careful with him, he's developing into a little boy and little boys wants to interact with the world.  We want to protect him, but not shelter him.  We want him to begin experiencing life.  It wouldn't be fair to him to keep him away from others because of the "what ifs".  

My Little Fish

Isaiah had his first water therapy session this past Friday.  I may have lost sleep for days beforehand worried that he'd hate it, or worse, that he'd have trouble with his breathing (Dr. B. mentioned to be careful as the water does put some pressure on the ribs.) and that I'd have to hook him back on the machines.

But he LOVED it.  And when I say that, I really really mean it.  

His PT is the same person that does his PT from Early Intervention so he was very familiar with those involved.  She comes from Schreiber Pediatric Center and I've always heard such great things from them and was so thrilled when I heard they have a therapy pool.  The water was fabulously warm.  There's a wheelchair ramp that goes slowly into the water.  I walked down it holding Isaiah and he first touched the water with his toes.  I felt him tense so I stopped a moment and then stepped deeper in again and he smiled.  We stood and waded in the pool for a few minutes and then Isaiah's PT pulled out a really cool therapy mat.  She was able to lower his legs in the water and promote his moving his body on his own.  After some time on the mat, I held him in the water in front of me and he literally floated, splashed, and stretched more than I've ever seen him.

Oh, and his breathing was totally beautiful.

I can't wait until Isaiah's next session.  This is going to make him so much stronger.

When his PT was at our house for his Early Intervention session, we talked a lot about how wiggly Isaiah has become.

In some instances, like in his chairs, it's honestly dangerous and scares me sometimes...so we spent our most recent session working on how to buckle him in (usually the receiving blankets used as rolls and padding were in the way, and it didn't matter because the kid was basically a statue).

Snuggin Go to the rescue! (Thank you Jolene and Silas!)

It works perfectly and Isaiah really loves it.

The rest of the session was spent working on Isaiah sitting UP!

We're practicing this many times a day, every day, hoping this will give him the strength to begin to sit up on his own.

Keep working it, Isaiah. :)

Celebrating and Reflecting

Isaiah is really making progress.  We are too.  We're starting to get more determined and brave with him.  After getting great advice for other OI moms, we did this....(can you tell what's different?)

He's in a ONESIE! NO SNAPS!  Hooray, now we can get those goofy onesies that have ridiculous sayings on them like "Pants are overrated".

This weekend was amazing.  We hit up Home Depot, spent time outside walking and planting flowers with Isaiah, and spent time with family.  We also celebrated our anniversary.

We went to our favorite restaurant in Lancaster, El Serrano.  This was our first real sit down meal with Isaiah in tow.  (Second if you count the buffet we enjoyed when the electricity went out and we stayed at a hotel.)  We had plenty of toys with us, and may have delayed his nap (in hopes that he'd pass out while we ate).  They gave us the perfect seat, out of the way but in view of lots of tables and people walking by.  It was perfect for our little people-watcher.

Isaiah didn't get antsy until we had started on our main course so I took him out of his stroller to cuddle.

It's ok, El Serrano's food is great reheated. :)

Isaiah ended up falling asleep in the car so we decided to run to the local BJs for a few things.  While at a red light, Dave looked back at Isaiah in the mirror and smiled.  He reflected on our weekend while I totally stole this picture because he melted my heart.

He started talking about how lucky we are...how far Isaiah has come...how strong Isaiah continues to become...how amazing Isaiah behaved with family and today at the restaurant...

SOOO LUCKY! <3  Sometimes it's hard for us to wrap our brains around everything that has happened to our lives thanks to Isaiah.

In case you were wondering, ours BJs trip was fabulous.  Isaiah was passed out asleep the entire time.

Now that's the way to shop with a baby. ;-)