Posted by: littlewifey05 | December 21, 2011

6 LONG MONTHS LATER! …And a BIG Giant Apology!

Oh my golly goodness!

I hope everyone has had a great past 6 months, and before I continue, let me extend a GIANT apology to EVERYONE for being a horrible blogger! Things have been a big giant crazy life these past 6 months, and I just never found the time to hop on here and update (or it honestly just slipped my mind in my moments of sheer bordom!).

Anyhow, onto the star, Mr. Big Man Sean!

Gosh, he’ll be 18 months on Saturday!! Can you believe it? I sure can’t. Time really has been flying, and I’m watching him grow up right before my eyes. ๐Ÿ™‚

On the medical side of life, things have been hectic as ever. We had some down time shortly after his birthday, with just a few check ups during the months of June through August (and mommy celebrated her 21st birthday! wooh!), and as September rolled around, things got busy once again. We unfortunately missed his October infusion, and didn’t end up getting it until JUST A COUPLE WEEKS AGO! Man, talk about fracture cycle. My poor baby was breaking left and right (literally). But as always, he was definitely a champ about it, and I think constipation from his pain meds bothered him more than the break itself!

November was definitely the busiest month I’ve had since just after he was born. We were given a consult to the cranio-facial team, (for those who have confused looks, it involves plastic surgery, hearing, dental, speech, physical therapy and social work, along with a handful of other specialists) and it went really well. Sean has a confirmed case of Dentinogenesis Imperfecta, which is essentially the same things as OI, except in his teeth. His teeth are semi-see-through and have a grey-ish tint to them. Luckily, Sean “chomps-a-lot” Cain has a mild case it seems, and he hasn’t worn down any of his 10+ TEETH! Yes, you read that right! 10 or more (since he wont open his mouth to save his life for me to get a count)! So follow up with dental with be a full exam, since it also looks like he might have a cavity already.

Plastic surgery was next, and their concern was his ever-enlarging head. We talked to them about getting a helmet, and after being denied back in August/September by one company, we are awaiting a consult with another pending approval by our neurosurgeon (i’ll get to that piece in a moment).

Hearing (Audiology) was up next. Now, we’ve been going back & forth (Christopher and I) about if Sean may be losing his hearing. He definitely seems to have either partial hearing loss, or it might be bad case of selective hearing, which wouldn’t surprise me considering he’s my child (hehe). When we saw audiology, he failed his responsive test (he didn’t look when the lady clapped her hands or called his name), and in “phase 2 testing”, where they put earbud type things in his hear and project sound waves (to check for an issue with the ear canal and bones I assume) his breathing was too loud and labored that they couldn’t get any kind of tangible result. Our last option for a hearing test was an electrode/brain wave sleep study. They told me he would have to be sedated and he would be hooked up to monitors to actually see how much information his brain is receiving from his ears, to see if maybe the hearing issue is neurological, since a number of things can cause partial/full hearing loss. The test could be as short as 30 minutes or up to a couple hours, depending on the results (the more hearing loss there is, the longer the test will take to find the amount of loss and the cause). So, sedation, BIG. RED. FLAG. More on that in a minute (or i’ll get distracted).

Speech. He’s still not talking, but getting there. Therapists say it may be hearing loss causing his lack of speech or maybe he’s just a slower learner. I was told to read aloud to him while facing him, and do more face to face talking. Another assessment will be done after we’ve confirmed hearing loss or not.

ENT/Pulmonology (breathing, ear, nose & throat specialists). He’s got a big problem with congestion, and breathes hard most of the time to compensate for “restrictive lung disease” (his lungs cannot expand completely due to a small, “barreled” rib cage stemming from his OI, and possible rib fractures can cause partial lung collapse). So they want to do a broncoscopy to check out his lungs and airways. Basically make sure nothing is going wrong in there, that they look healthy and nothing is obviously causing him to have a hard time breathing. They were also concerned for a partial sleep-apnea issue (stops breathing while he’s asleep). Sooo, another sedation test. (like i said, i’ll get to that soon)

Physical therapy. He can’t sit up unassisted, his fine motor skills (grabbing toys, hand eye coordination, etc) are amazing, but not much else. He HATES tummy time with a passion, and cant roll over, crawl, or anything of the sort. He’s pretty much an immobile, helpless little boy in that respect. He also has something called “torticollis”, where his left neck muscle is smaller and more constricted than his right, causing him to always tilt his head to one side. This can hopefully be solved with a little PT and possibly a neck-brace, but if not, minor surgery might be needed to cut the muscle (sounds horrible, but its actually pretty simple), re-enforce it, and allow it to spread and form new muscle. Until such time, he’s going to be enrolled in something called “Early Intervention” (physical therapy for infants) to work on his head control (still doing the bobble head thing) and sitting up unassisted, tummy time, and possibly rolling over (since BOY is he trying!).

That’s about the last from cranio-facial that was of anything productive, and I had to make normal clinic appointments with all these doctors (and a few more) anyhow. A few have been taken care of already, and more are to come in January (we have taken a break for the Holidays, and don’t pick up new appointments until Jan 3rd).

Next on my checklist, we were getting concerned about the size/shape of his head (since i’m sure you all noticed, he’s definitely got a “football head” thing going on). We were given a consult to ultrasound for a look into his head through his (still open) fontanelles (“soft spot”) to check for a condition called Hydrocephalus (excess fluid on the brain). A few days later we receive a phone call from our genetics doctor saying he in fact DOES have Hydrocephalus, and a pretty severe case. We were given an immediate consult with Neurosurgery.

Not even a week later, we see the Neurosurgeon. He takes a look at Sean’s ultrasound images and immediately says it looks like he will need a shunt. LUCKILY for us, because of his OI (talk about the stars aligning), the mass fluid build up in his head has caused no visible brain damage (from what the images show and from Sean not experiencing ANY symptoms) simply because his skull is so soft that it has allowed the fluid to just push open and mold his skull outwards and the fluid builds up, instead of compressing on the brain (like it would a “typical” child’s head that has a hard skull with fontanelles that close rather quickly) and that has given us a window of opportunity to act and manage the fluid build up before his skull begins to harden (thus causes an onset of symptoms), and reducing the overall size of his head in the meantime. The whole shunting process is still in the works, and its a lot of medical jumbo, so I’ll leave that big part out. Long story short, our Neuro wants an MRI of his head to get a better look (since ultrasound can only show him so much) and we’ll decide where to go from there. A shunt is not immediately neccessary, but should be done within the next 6-8 months tops. That is also still being discussed in the McGarry household.

—>oh, by the way, the MRI? Yeah, that’s also one of those “he needs to be sedated” kind of procedures.

BUT, before I move onto the sedation story, I have some WONDERFUL NEWS!!!!

At his 12 month heart scan (I’m not sure if I posted this or not), our cardiologist told us that his heart was getting significantly better. From birth until about 4 Months, we saw the gradient of calcium (density/hardness) in his pulmonoary artery increase from 15% all the way to 60%. At 4 months (shortly after he began Pamidronate and Fosamax treatments), that gradient slowed down and stopped, wavering around the high 50%s, and only increasing/decreasing fractions of a % a month.

At 6-7 Months, it had completely stopped building and was at a stand still. We were given the news that if his heart condition never changed from where it was, he would go on to live a completely normal life (since anything that would affect his heart, i.e. high activity sports, he wouldn’t be doing anyways since he has OI, so normal in the sense of Sean..if that makes sense). Either way, HOORAY! He was out of the red zone!

(6 months later…) I return, once again as every couple months, to see how his heart is doing. To our cardiologists, mine, and our other doctors (very wonderful) surprise, his gradient DECREASED from high 50-60% to MID 20%s! This, was a great day of so much blessing. I hugged our cardiologist (haha). That was really the best news we had EVER received (so far…) and I also think he got a lot from being able to (for the first time in my life as Sean’s mom) tell us good news. It really felt like so much weight had been lifted off my shoulders to hear those words…
“His heart looks great, I do not see any reason why we would have to intervene or do anything to his heart. At this point, he’s clear for just about anything. I think it’s safe to say I don’t have to see you until he’s 18 months!”
Oh my..words still escape me. And so we wait, and we wait, and eventually, we go back.

(6 MORE months later…) Nerves of jelly, I go back in November to check up on how his heart is doing. I’m super nervous since it’s been 6 long months since his heart was peeked at, and WHO KNOWS what’s been going on. Well, it was EVEN BETTER NEWS. His calcium gradient was continuing to decrease down to the low 20%s! And since he’s gotten so big (a hefty 18lbs and 23″ long) cardio was actually able to get a look at his artery from an angle he never could. A good shot from directly above, looking down at the artery. That picture told the whole story.

From the side of his pulmonary artery, you cannot see the entire “ring” of calcium, but just the density. And at first, it seemed like it was a big solid ring. This posed a HUGE problem, because the density was so great, it could have caused Sean’s artery to constrict and not grow with the rest of his body, and if you can imagine, that’s just a ticking time bomb. Eventually his artery would not be large enough (or the ring of calcium to dense) to allow enough blood flow to his lungs, and BOOM…you fill in the rest.

HOWEVER, that ONE picture looking directly down at his artery showed our savior, a big, giant gap in the ring. His calcium build up looked like a “C”, which means there was a big gap on the back side of the artery (not visible until now) that was allowing his artery to grow normally, and thus decreasing and basically spreading the calcium along the artery the larger it became. So…CRISIS AVERTED! Praise the Lord (or whatever you believe in).
And remember when I said I got the best news ever (so far) when he turned one? I was wrong. Then, he told me, with the goofiest kool-aid smile, that Sean’s heart, from a clinical cardiology standpoint, was almost NORMAL. And given a few more years and some good ol’ growing, it would be back to normal! Oh, my, word. I was LITERALLY speechless.

I really did feel in that moment, I was rewarded. God, Angels, Good Karma, SOMETHING was looking out for me that day. Someone had recognized all my hard work, 18 months of the WORLD on my shoulders, and decided I deserved a break. In that moment, I knew how worth it this all was, and how worth it it will ALWAYS be. Because all the months of hardship, all the tears, the trials, the doctors, the bad news on top of bad news and diagnosis on top of diagnosis. NONE OF THAT MATTERED. In that moment, I was told he was HEALTHY. That he was NOT held back, or confined by any “disease” or “condition”. That my son had achieved one of his biggest milestone. To BEAT a disease. To BEAT silent killer. And to SURVIVE when he wasn’t given the chance.

*Sniffle*, Now, let me wipe my prideful tears and keep going!

Well, onto the big axe loomed over my head. SEDATION. That’s a really scary word in this household. As you all know, his past 2 surguries, sedation has been a big issue, but with all these tests that NEED to be done (hearing, breathing, head MRI), it’s a definitely necessity. So we got cleared by cardio, and ENT said his lungs should be good for intubation, and now it was just a matter of deciding what tests need to be done with haste, and what can wait (since we do NOT want him sedated for a long period of time, the longer he’s under, the harder it is to get him up).
So after MUCH discussion between ALL his docs (i’ve lost count…), we finally decided on:

HEARING
HEAD MRI
BRONCOSCOPY
& DENTAL.

Now, this actually looks like everything I talked about earlier, well, that’s all I mentioned. Also on the list was:
FULL BODY CT SCAN
HEAD CT SCAN
CIRCUMCISION
DEXA SCAN
& XRAY

But those were cut out because they were not as important, and could wait.

This sedation business will all go on probably mid-late January since we didn’t want to rush it before the Holidays.

NOWWW..ONTO THE FUN PART!
How is Sean doing at home?

…and the answer? FAN-FREAKING-TABULOUS!

Sean is SUCH an amazing little boy, bless his little heart. He is so happy, so giggly, so playful! He’s still got the biggest brightest eyes. He now fits into a 9-12 month size clothes, can wear pants (hoorah!), and has a BIG BOY CARSEAT!
We invested into the Britax Marathon 70 for him, and I have to say, the pain the rear it is to have that bulky thing in my car (and to take him out and in and out and in everytime we go somewhere) it’s DEFINITELY WORTH EVERY PENNY (and every 10 minutes spent getting him in & out). We also bought him a new light weight stroller (the Combi Cosmo Ex, for any moms interested). He has a bedtime, nap time, wears the cutest PJs to bed, and is the biggest cuddle bug ever.

I’m honestly not sure how much I can say about how he’s been at home. Things are pretty much as normal as they’re going to get in this house for now. Just a few days ago he got his first haircut (thanks to yours truely with a little help from daddy)! He’s now rockin’ a mo-hawk! (but you all saw that coming, didn’t you? ๐Ÿ˜‰ )

You know, to this day, I still have people e-mail me, message me on facebook and friend request me and just tell me how much of an inspiration Sean is. And it’s just the best feeling ever to see how much of an impact Sean has on people. He’s such a special child, and I hope he inspires people to be all they can be, to smile through the hurt, and to always prove everyone wrong when faced with doubt!

I look at his smile every morning, and no matter how bad my day is, or that I feel like shit, or the house is a mess, he turns it all around. His eyes light up like no other. And maybe it’s because he knows what happiness is. For the short 18 months he’s lived, he knows what hurt is, he knows what love and care feel like, and he knows what it means to be happy. I wish I could tell him now, help him understand how much of an influence he has had on so many people. How many lives and hearts he touched. One day, one day he will know. I will never let him be down, because at the end of it all, he’s shown a lot of people what true strength is, and where it comes from.

You don’t need to be big, you don’t need to have muscles, or run fast, hell, you don’t even need to hold your head up or know how to talk! He is hands down, the strongest person I know. All OIers are. And when I feel like the world has got me down, I remember how hard he tries, and how hard he fights. And I don’t think he knows why. He just fights. He fights for a life he doesn’t remember, he fights for people he doesn’t recognize, and he fights for no reason apparent to ANYONE but me and you. And that’s enough for him. Life, no matter how hard it may be, is enough for him to keep striving when I wouldn’t have blamed him for giving up.

They call OI children snowflakes, because they are fragile. But not only fragile, they are each unique unto themselves, each with their own story, theyre own milestones, they own, unique, intricate design. But all snowflakes, different as they may be, show one common trait. DETERMINATION.

Determination to never let anyone tell them “no, you can’t do that”. Determination to never let a broken bone get in the way of having fun. Determination to never let anyone talk them down, or ever let anyone tell them they are less than amazing.

I had the incredible honor of going to place in Oregon called “Camp Attitude”. It’s a special needs/disability camp, and they offered an entire week to just OI children, adults and their families. I spent about 4 days there, and those are 4 days that changed my life.

My internet family came to life. I could hold these children, laugh and share a face to face conversation with another mom, just like me. And most wonderfully, I could relax. For the first time in the long 18 months as Seans mother, I could walk away, I could be SURROUNDED by people, and KNOW, have the PEACE OF MIND. That every single person there knew what OI was. I didn’t have to explain why they couldnt play with Sean, why he “looked different” or what “brittle bone disease” was. Even to a 4 year old. I could let him play with Sean, because he KNEW. He knew was his life was like, and this little boy, just FOUR, said to his mom, “no mama, I wont hurt him, I know I didn’t like people touching me, cuz I could break, so I’ll be gentle…” and proceeded to play with, feed, and interact with Sean.

I’m tearing up, sitting here, remembering my time there. It just hits me so deep because, that meant so much to me. I had a moment away from Sean to walk thr grounds of Camp Attitude while a fellow OI mom walked Sean around. Why? Because she KNEW. She KNOWS how difficult it can be. I love Sean to the moon and back, but I never had a single moment to take a breath away from him and KNOW he was okay. In that moment, I knew. And that, my friends, was worth more than I could ever imagine.

Until next time, Happy holidays everyone. When you look outside to see the fresh snow, never forget the unbreakable snowflakes, defying the odds, and say a prayer for angels who lost their battle.

—> In loving memory, Zayana Grace, type II OI Angel, welcomed into heaven after just a few short months on Earth. Chris, Ernesto, you are the strongest two parents I have ever had the blessed pleasure and honor to meet and be friends with. Not a second goes by I do not smile up at Heaven, and know she is there, smiling back.

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Responses

  1. Ugh tears steaming down my face once again. Such a strong boy, so touched by Sean’s story!x

  2. Any new updates x


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