FAQs

Dave and I are often asked about certain topics so I thought I'd make a page dedicated to...

Frequently Asked Questions



What is Osteogenesis Imperfecta?
Osteogenesis Imperfecta, often abbreviated as “OI”, is a type of skeletal dysplasia.  It’s a genetic bone disorder where a person’s bones can break easily.   This is a disorder that a person is born with and is affected throughout his entire life.  To learn more about OI, be sure to visit http://www.oif.org

When did you find out that Isaiah has OI?
We found out after our 20 week ultrasound when the doctor met with us.  We expected her to tell us that everything was great.  We thought she’d come to tell us the gender of our baby.  Instead, she asked us if dwarfism runs in our family.  She told us that Isaiah’s arms and legs were shorter than they should be and were bowed.  Two days later we went to a MFM office where the doctor told us that Isaiah’s arms and legs were broken or healing from breaks. The doctor there was the first person to introduce us to OI.

How was Isaiah born?
Isaiah was born via c-section.  Specialists say it doesn’t matter whether a child with OI is born vaginally or by c-section; they will still encounter breaks in the birthing process.  Isaiah was breech though, and I did not want him turned, as that would most definitely cause extra unnecessary breaks.  When Isaiah was born on August 11th, 2013, he was born with at least 6 fresh rib fractures and both femurs, his right humorous, and his tibia and fibula in his left leg all freshly fractured. 

Can you tell me where I can make a donation?
Absolutely, thank you so much for your kindness.  Click here for three suggestions of amazing places that have helped us along the way!

What is Pam?
Pam is what I call the medication that Isaiah gets through his port that helps strengthen his bones.  Pam is short for Pamidronate (It's pronounced puh mi dro nate and it literally took me 4 months to learn how to say it correctly, thus, PAM! haha)  Pamidronate is a biophosphonate (yeah, don't ask me what that is) that slows down bone breakdown, helps so that Isaiah fractures less, and helps with bone growth.  You can read more about pamidronate on the OIF website.

How do you change Isaiah’s diaper?
If we were to lift Isaiah’s legs by his ankles, we’d likely break his legs.  The way that we have to change Isaiah’s diaper is not how every OI baby is changed.  Because of the way Isaiah’s femurs are, we risk fracturing him if we’d roll him to change him so we change him by lifting him evenly under his hips.  Usually, we lift him and place a clean diaper under his dirty one.  We open his dirty diaper, fold the flaps (if he’s in a disposable), wipe him clean, and then we just pull the dirty diaper out slowly and close up the new clean diaper.  The process changes a bit when Isaiah’s diaper has an extra special gift though.  In that instance we start out the same- by lifting him evenly under his hips, placing the new diaper, opening the old and folding the flaps, wiping as much as we can without getting poop on our hands (yuck), then we lift him again and slowly pull the diaper.  We give a few more quick wipes before putting him down and closing him up.  We try very hard to make sure his legs aren’t flapping or flailing as that could cause a break.

What is that yellow tube (in Isaiah's nose) in Isaiah's old pictures?
That yellow tube is called an NG-tube; it's a feeding tube.  Isaiah was on a feeding tube for a number of reasons until he was 4 months old.  He first came home with a feeding tube because he was tachypneic (sounds like tuh-kip-nic; it means he was breathing rapidly).  His breathing rate was so fast at times that it could have cause him to choke (and he has done this when I attempted bottle feeding when he was a month old; very scary moment).  He was also falling asleep after only eating a third of what he should be taking in (the total of which is actually less than a non-OI baby).  Eating is a lot of work and all that plus breathing quickly can really exhaust a person.  

When did Isaiah stop eating through his NG-tube?
He first started trying a bottle in December 2013.  He took his first full bottle on Christmas Eve (what an awesome Christmas gift!).  On New Years Day, it was like something clicked for him and he started taking all of his daytime meals by bottle.  Not only that, but he was surpassing the amount he would have been taking if he were eating by tube.  Before we knew it, he wanted to eat before bed and I was able to work it out with his doctors (he had previously been getting small amounts over night continuously) to do so.  Once his doctor saw him eating at his January PAM treatment, he wanted us to pull the tube that day and run a trial.  We waited until things were normal for Isaiah (treatment days involve a lot of traveling) and haven't looked back since!  He's had a few issues with his reflux and a little weight loss here and there, but he always gains again.

What was the clear/green tubing under his nose in your older blog posts?
Back in September of 2013, when Isaiah was one month old, he went into respiratory failure.  I never made one specific post about this, but it basically took over our entire blog in September.  The machine that helped bring life back into Isaiah's eyes was a C-PAP.  He didn't have a crazy mask though, that could have been uncomfortably since he had to wear it 24/7, so they tried what's called a nasal cannula and it worked!  The C-PAP's job was to help Isaiah breathe more efficiently.  He did a great job inhaling oxygen, but he struggled exhaling and expelling all of the CO2 out of his body.  His rib cage was just too shakey then, it needed time to get stronger.  For the next 6 months, Isaiah wore the nasal cannula 24/7.  He also had oxygen blown in to help him.  As he grew and received more Pam treatments, he got stronger.  We started to wean him off of the C-PAP in March and learned he currently still needs it at night but can go sans cannula during the day.  It was a huge relief to us as that cannula was attached to a lot of machinery.

What is that bump in Isaiah's chest?
When Isaiah was 6 months old, we had a Portacath (we call it "port" for short) surgically inserted into his chest.  He used to get his Pam through IV in his scalp or hands, but he was a tough stick and it was very scary for him.  The port is a tiny little thing that the hospital nurses access to get blood draws and administer his Pam.  I wrote more about it here, there's pictures as well if you have no idea why this question is here. ;-)

How do you hold Isaiah?
Very carefully. We used to hold Isaiah on his mattress because it distributed pressure evenly.  (It also helped with the weight/awkwardness of the tube for his C-PAP when he wore that.)  When not on his mattress, we are sure to have our fingers spread widely behind him when lifting with both hands, again, trying to disperse the pressure evenly. We never lift under his armpits- that would cause pressure in that certain area and likely cause a break.  We may be able to lift that way when he's older and he can help us distribute his weight evenly.

Why did Isaiah wear a helmet?
In some pictures from May 2014 to August 2014, you'll see Isaiah in a blue helmet.  It's not to protect his skull (although, that's a bonus), it's to reshape it.  It was actually made specifically for him back in April.  Isaiah has had torticollis since birth; he's always preferred to turn his head to the left and tip it to the right.  To make matters worse, he was wearing the cannula 24/7 and that was attached to heavy tubing so he was laying on his back a lot.  He ended up with a severely flat head in the back left and a bulge started to come out the right side of his head.  The helmet is correcting these issues.  When the techs at the helmet place first measured Isaiah's head, there was 7/8" difference of the left compared to the right side.  Thanks to the helmet, we saw a great change of 5/8".  We had to discontinue the use of the helmet when we learned of Isaiah's kyphosis (curving) in his lower back.  The helmet was adding extra weight on his spine and we needed to avoid that.  Curving of the spine can cause breathing issues and the helmet was just for cosmetic reasons.

So, about Isaiah's head size...
I like to joke that Isaiah has big brains, but yes, at around one year, Isaiah's head size went off the growth charts.  He was labeled to have macrocephaly (large head), and after an MRI in February 2015, he was diagnosed with hydrocephalus.  He had a shunt placed in April of 2015. You can learn more about Isaiah's hydrocephalus here and here.  Plus, you can see how the shunt has helped after only two months, here.

What's up with the link across most of your pictures?
That's a watermark.  Thanks to a very unfortunate event that took place in September 2014, I have to watermark my photos.  I do this because someone stole a number of my photos of Isaiah from either my instagram account or this blog, and creepily acted like Isaiah was their son, except with a different name, on Instagram and on some website where you can ask questions.  It was beyond repulsive (especially because they weren't even spreading awareness correctly and giving false information).  If it weren't for my goal of making OI better known, I'd have ripped every picture I'd ever shared off the internet (the best that could) and never shared again....but then that creep would have won.  So the watermark is my way of making sure people know where my photos come from.



As time goes on and we notice other questions are asked, we'll be sure to add them to this page, so check back every once in a while. :)

Updated: July 6, 2015

1 comment:

  1. Love it!! Can't believe how much we have in common :)

    ReplyDelete