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. :)

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? ;) )

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.

Posted by: littlewifey05 | May 25, 2011

HAPPY FIRST BIRTHDAY SEAN!

IT’S HERE IT’S HERE IT’S FINALLY HERE!

So long ago I never imagined this day would come. I wallowed in self pity, misery & anger. And now, I’m thrilled, I’m ecstactic, and words cannot fully describe how amazing this is.

Doctors never gave him a fighting chance. They told us to count our moments, and not to expect anything but an untimely, short death. Back then, I thought doctors were always right. I held my son close, because I thought it would be my only chance.
Boy have things changed….

In the past year, I’ve learned that medicine isn’t 100%, that it’s called “medical practice” for a reason, because NOTHING is for sure. I’ve learned that doctors don’t always know everything, and mommy ALWAYS knows best. I’ve become more confident in myself, and a stronger person as a whole. I can stand up to people now, because if I don’t advocate for Sean, bad things tend to happen. I’ve learned that no one can tell you how to live your life but YOU, and no one should ever even try.

Most of all, I’ve learned to appreciate every moment, because it may not be there tomorrow. Love those you care for deeply, always kiss them goodnight, and never forget that even on the worst of days, you would give your very soul for their happiness.

So Here’s to You, Sean Cain. My life, my journey, my soul for you. You are the best and most wonderful thing in my life, and I’d be lost without you. You are my miracle, my breath and my heart. You’ve made me a better person, because you love me just as unconditionally as I love you. Here’s to many more happy birthdays, many more smiles, kisses & hugs. I love you, dear child of mine, and am TRUELY blessed to call you my son.

“Life is not counted by the milestones we meet, but by the moments we make…”

Posted by: littlewifey05 | May 24, 2011

The Day After Tomorrow.

WEDNESDAY IS SEANS BIRTHDAY!

Oh wow, I honestly cannot tell you all how hectic my life has been. With Sean’s birthday coming up, things being off the wall confusing with me & Chris, and just all kinds of other things around me, I hardly have ANY time for myself! But I seriously cant believe he’s already going to be ONE.
It’s such a miracle, words can’t even begin to describe how thankful & blessed I am for my little miracle.

So much has been going on, making plans for his party, which is this coming Saturday! I wish I had the money to take him out for his birthday, but unfortunately we’re going to be homebodies this Wednesday. I guess it’s not so unfortunate, but oh well. I hope we just have a good day, whatever it is we’re doing!

Now onto the fun stuff….Sean’s last doctors appt, he weighed in at 14lbs5oz! We also took him in for his infusion the first week of May, and no news is good news, the infusion went off perfect, without a single hitch! We have completely stopped the oral fosamax for his heart, and I’m taking him in on Friday to get his heart rescanned to check and see if the calcium is building up again or has stopped (hoping for good news day before the party!).

Our pediatrician also has told us to take him off the Similac NeoSure, and switch him to PediaSure. He’s still not very receptive to solids, and needs more calories, so i’m going to start transitioning to pediasure within the next month or so. He’s been doing great with weight gain still, and he’s growing so much its incredible! He’s starting to outgrow 3m clothes, and so we’re going to move onto 6m soon! I’m super thrilled.

I had my first experience with a “fracture cycle” right after the infusion. It was frustrating to say the LEAST! He broke his hip and left femur in one day, and then his ribs, and then his foot! All one day right after the other, from what seemed to be no reason at all. Needless to say, it was a rough week for me & him. Thank God the cycle is now over, and he’s a happy clam again, but it just reminds me that things can get worse than I sometimes feel like they are.

And more good news! Well, exciting news…I’m taking Sean to Snowflake Camp in July this year! An amazing OI mother&father & dear friends of mine, Chelsea & Curtis Lush, and I are taking a road trip with Sean & their daughter Zoe (type 2/3/4 moderate ; 7 months old) up to Portland Oregon for a week of camp just for OI kids & families! And even though our kids won’t really be “campers”, since they’re too young to do much, I’m still excited to see all my OI family! These people have been there for me with Sean, helping me every step of the way and letting me know that no matter what happens, it’s always going to be okay, and I couldn’t be more thrilled!

My birthday is also coming up in July, on the 19th specifically, and I haven’t thought much about what IM going to be doing, I’ve been so distracted with Sean’s birthday & Camp. Haha. This month has been crazy, hectic, and fun, all at the same time. I can’t believe where life has taken me!

Yesterday, I had a lot on my mind. I’ve had a rather interesting weekend, and honestly, it made me consider my life in a lot of new ways. I grew up learning to never regret the past, and the decisions I’ve made, because at that time, that’s what I wanted. And for years, I never quite understood the importance of that life saying. Through this whole divorce process, a lot in my mind has raced, thinking about what I did wrong, and what could have made things different or better, and realized within myself, that everything happens for a reason. So me losing my “picket fence” wasn’t going to change, and that’s it. At that point, I began to regret ever getting myself into it at all. I felt like I could have seen it before, I could have seen the signs of an impending disaster, and I didn’t. I thought maybe if I had seen where things went wrong, I could have just walked away at that moment and moved on. But then, I look at Sean, and none of the “what ifs” matter anymore. For whatever reason, I never walked away, I never thought about the alternatives to a situation, I just went with it. Truth be told, It’s not like me to do that. Seeing Sean’s sweet face, I now understand why I changed, even if for the brief time I did. Because God wanted me to have him. God wanted to bestow a blessing on me so sweet, so wonderful, and so precious, I had to work for him. I had to bear the wind of a stormy time to get what I now realize is the biggest miracle ever.

So yes, sometimes I do wonder where I would be now, had my life taken a two step in another direction. But there’s plenty of time left for me to make my life anything I want, and whatever mistakes I’ve made and whatever paths I’ve wandered down, it was all worth it in the end, because in the end, I have Sean.

Well everyone, It’s my bedtime. So until next time, be well :)

Posted by: littlewifey05 | April 20, 2011

35 Days & Counting….


Once again, I’m super duper sorry I haven’t been on in FOREVER. Things around here just get crazy.

I cannot believe Sean’s first birthday is only 35 days away. I began to put together a large photo album of his first year. It has everything from my pregnancy all the way until now, and I will continue to add to it until the day he turns one. Looking through all the NICU photos and hospice photos, along with everything from when he was so little, just breaks my heart and makes me happy in the most amazing bittersweet reality I could have.

Last year, I never imagined I’d be here. Last year at this time,  I was mentally preparing myself for the worst, because that was the reality. But Sean has proven reality wrong. He’s a dream, he’s the most amazing little child I’ve ever laid eyes on. Nothing to me can compare to the trials he’s been through, and what we have had to endure together. And to look at him now, his huge smiley face, his energetic personality, and his will to move and thrash and just be a child, I could never imagine being so blessed.

He’s beginning to gain more and more head control everyday, and I always sit him up on my lap, holding his ribs and upper belly to stabalize him while he bobbles around and looks at everything. He seems to like the “freeness” of not having his heavy head leaning against something, and for short periods, he will lift his own head and just be curious. Solid foods are still an absolute disaster. But I keep truckin and trying! One day…he’ll get there.

Last weight check we had he was 13lbs5oz, which is a hefty baby if you ask me! He’s about 21-23 inches long (we always approximate).

Also, we stopped the oral fosamax, since we’re not really sure why he’s continuing on it, and there are all those lawsuits of Fosamax oral. He seems to be doing really well, and even though he’s overdue for PAM as we speak, he’s not too fussy. We’ve lowered him down as much as we can on the morphine, and unfortunately, since he’s been on it so long, he does appear to be going through slight withdrawl when he hasn’t had at least one dose a day. Which, actually, when you think about how much he was on (every 4 hrs routine), only 1 dose in a 24hr time span (or even 2) is great, and not very much at all. Since the lowering, he also is awake much more, and plays around and is VERY active. He’s starting to make first attempts at rolling over, which I’m not sure I’m excited about. Don’t get me wrong, it’s great and all that he’s finally hitting some baby milestones, but it scares me thinking of him rolling over and breaking an arm or something. or cracking ribs on the way over. I guess only time will tell, and the fact of Sean is that if he does something to hurt himself, he doesnt really try again until i do.

Most exciting news I have? Sean’s 1 year photos are this saturday! So be on the look out for those coming up in the next couple weeks! I’m more than thrilled! The wonderful Brandy Davis of Wild-flower Photography, who did Sean’s photos previously, moved onto North Carolina, and so referred me to a friend of hers, Paula Bradfield from PBradfield Photography, and Paula (bless her heart) has offered us a free photo session for Sean! How grateful and blessed I am to have such WONDERFUL people like Paula & Brandy give their time and work for Sean is unimaginable.

I’m also adding a gallery to the end of this post of all new photos of Sean! :)

Until next time…

Posted by: littlewifey05 | March 14, 2011

10 Months Later~!

Hi everyone! I’m so sorry I’ve been away for over a month now, but my computer broke, I’ve been super duper busy, and just haven’t found the time to get on here and update.

Not tooo much has been going on. We got Sean’s heart rescanned on March 9th, and HAPPY TO SAY his heart is still looking fantabulous! :) Our cardio thinks that as long as things don’t get worse and continue to either stay how they are (which is whats happening now) or get better, it’ll be smooth sailing for Sean! We only have one axe looming over us right now, which is his coronary arteries. Since he’s had so many rib fractures since birth, his ribs have since calloused terribly and all but fused together, creating a large, thick barrier between any echo monitor and his heart. So when we go for his scans, they can only look at parts of his heart, and haven’t been able to see his coronary arteries yet. Now, his pulmonary artery was their concern before, and now that’s leveled out, and his cardio is beginning to be worried about what he doesn’t know. He can’t see his coronaries, and he doesn’t know if/how much calcification there is in those arteries. If there is significant build up, and if that hasnt stopped or regressed, it could change Sean’s prognosis drastically. I guess it worries me (it really does actually) because that means theres a HUGE unknown factor in his health. He seems all & well, but one day he could go into cardiac arrest with no ifs, ands, or buts on the matter. But we won’t think that way.

Good news though, the larger he gets, the better their chances of seeing those arteries get. They attempeted a spiral CT scan a few months back, but because of all the blockage from his ribs and how small his coronaries are, they just weren’t able to get any valuable info from the scan (which is unfortunately because of how much radiation that took…). Our cardio says he’s hoping to get a new spiral CT around 12-14 months, just to take a look and see what’s there to be seen now that he’s bigger. So hopefully (fingers crossed), when he does go in for that spiral CT, we’ll be able to get at least a semi-good look at those coronary arteries to see if he’s got a bigger problem.

But like I said, we won’t think about the negative..

So moving on, we also had his 9 month well baby check up on the 11th. He’s doing great! He’s so strong, and (of course) he’s no where near par on the development scale for gross/fine motor skills (around 2-3m) and he’s about half way speech wise (around 5-6m). Best news of all, he is right on track socially and otherwise (8-9m). And he’s got the concept of “stranger danger” down to a science! Hahaha. I’m so thrilled though. I didn’t expect him to be as close and he was to a lot of things, and when I went down the checklist of “things your baby is doing” and was actually able to check off a good bit, it made me feel so happy. My son is not a vegetable like a lot of people thought, and he has an AMAZING quality of life that a lot of normal children don’t even have at this age. <3

Non-medical updates, I can FINALLY pick Sean up by the ribs like a “typical” child! Oh my goodness, I cannot TELL YOU how amazing it feels, and how easy it’s made handling him. Because of this latest milestone, he’s starting to gain head control. All you moms out there, Sean is just about where your 1 month old was. You know, when you’d sit them on your lap holding under their ribs while they attempted to balance their own head? Yep, thats what Sean does! I’m sooo excited I can’t even begin to tell you! He loves every minute of it, and also loves flying thru the air like a space man!

I actually think he’s learned to be proud of himself. When I sit him up against the couch and he can hold himself up and keep semi control of his own big noggin, he gets a goofiest look and smile, as if he KNOWS how far he’s come, and how great he’s doing considering. He actually hasnt had a serious break in a long time, and I really can’t remember when it was. I did make him a “break kit” though, just in case. It has some gauze wraps, big little & medium bandaids, Coban (the stuff they put on your arm after blood draws, sticks to only itself) and some SAM Splints (finger size) so theyre perfect for his little arms. I also pack some hand sani & his meds in there, along with alcohol pads, pain gel (topical), and a few other odds & ends. I hope I never have to use it (but i know i will), but I like having it as a safety precaution. And on a side note, it only helps on days where people ask about him, and having the break kit is a way to say “look, my son is so fragile I carry this stuff with me every single day in case of a fracture”. Because once again, people just DON’T get it.

Last but not least, I’m planning his FIRST BIRTHDAY PARTY! Oh wow, I cant even believe we’ve come so far! I honestly never expected this to happen, and a year ago I would have told you I’m not planning on being able to have a celebration. But you know what? He’s come so far, and done so many amazing things, proved EVERYONE wrong, and made himself a miracle. In the eyes of doctors, medical professionals, me, family, friends, other parents, and God. He’s is the most amazing blessing ever, and I thank my lucky stars and the Good Lord above for giving me him. So in just a couple short months, we will all be toasting to Sean. To many more years of happiness, love, luck, and joy.

Til next time, be well everyone! :)

Posted by: littlewifey05 | February 6, 2011

Life Changes in the Blink of an Eye.

Hello again!

I apologize for the delays in my postings and updates, but I’ve been rather busy and very stressed. I’m not one to post about my personal life outside of Sean, but I’m currently going through a separation & divorce. So most of my time is spent dealing with that, and busy getting off my feet with just me & Sean.

Things have been rather complicated, trying to be a single mom when I can’t work or go to school. I’m still very uncomfortable with a babysitter for him, and because I don’t have any education degrees higher than a high school diploma, any job I’d get probably wouldnt pay me NEARLY enough to pay for all our expenses AND a qualified babysitter for him. I tried looking into specialized day care, and I can’t find much of anything that’s not through the roof expensive or that I like and feel comfortable with. I guess it’s just not a good idea right now. I need to continue to stay home. I’m applying for Supplemental Security Income & In Home Support Service (SSI&IHSS), which most parents of special needs kids & especially low income families will know what these are. Essentially, they give me extra money for Sean being disbled and being in a very low income living situation, and I get paid as his “care provider” because I cannot hold a job since he IS my job.

These income helpers are going to be my biggest and only source of income besides child support, and I’m definitely on pins & needles about getting approved or denied. I also need a car, so I need to factor in possible car payments insurance, etc. It’s all a little loopy right now, but I’m getting there.

In other news, Sean had another round of Pamidronate infusions from the 24th to the 26th of Jan. This way BY FAR the best hospital stay ever! As soon as we got there the commander and our Ped was there to greet us, we had our own room in the back of the ward where it was much quieter, our room had his crib, 2 adult beds and our own bathroom/shower. No one messed with us at all, no more doctors touching Sean, and all the nurses left us alone. They brought us his meds, did his infusion, and that’s it. We asked them for supplies we needed and other than that they pretty much ignored us! Yay!

We got his IV in 2 sticks, and he got 2 sets of labs, before and after the infusion, so a total of 4 stick. One small left femur fracture from a diaper change, but that wasn’t any doctor or nurses fault so it’s okay. He was super happy the whole time, we brought his toys and a mobile and movies for him to watch. It was the easiest, fastest 3 days ever! And it leaves me very hopeful for our next hospital stay, and not dreading it like I usually am.

He also just got his 2nd to last dose of RSV this past friday. He weighs in at 11lbs 10oz, and I can’t believe how fast he’s bulking up! It’s crazy for me to think that in just 3 and a half months, he’ll already be a YEAR OLD! Wow how time flies…

One of the best things I think that’s happened lately, is being able to use his carrier (as seen in my cover picture). I finally faced my fear of putting him in there, scooted him in, and made it work! And let me tell you, he LOVES IT. He loves looking around, being close to me, walking and talking, and it just offers us the amazing close-ness that we never had. It gives me a way to hold him without my arms cramping up or worrying that it’s hard for him to breathe cradling him, or anything like that. He’s completely supported, the carriers is super soft and padded so it’s perfect for cradling his head, and at the same time it reclines back just enough so hes not leaning against me, which is extremely uncomfortable for him. I’m so happy, he’s so happy, and it works! & hey, maybe i’ll lose more inches :)

One last update, I’m not sure if I’ve mentioned it, but we got some results back from the genetics lab in Germany. They were testing his DNA for a mutation in the “ENPP1″ strand (don’t quote me on this exactly, i dont have the medical degree, haha) and though they searched and searched, and even looked for a problem in the workings of the strand and not the DNA itself, there was nothing. So as of right now, the typical GACI mutation is not present. There are a few other strands that sometimes are the affected strand of GACI, and now that’s what theyre searching for. I’m not sure what this means for us. We still have no real “diagnosis”, but there’s really nothing else this could be. So I guess we just wait & see (story of my life).

Also, our Ped did a presentation on us in a few Naval teaching hospitals around the state, and we’ve gotten so much feedback, we also learned he is the ONLY person on record in literature with both OI & GACI in conjunction with each other, and are currently working on a theory of how the 2 diseases are working together, in a sense, to give him a better life expectancy & probability than he would have with only one disease or the other. Can’t wait to hear more about that!

For now, I leave you with lyrics to a song I love, and it really speaks to my inner self. It goes along with so much of my life. My past, my son, my marriage, my future, and just reminds me everyday to do the things i want to do and should do today, because tomorrow could be one day too late. Always appreciate everything, because life can change in the blink of an eye.

“One Day Too Late” – Skillet
Tick tock, hear the clock countdown
Wish the minute hand could be rewound
So much to do and so much I need to say
Will tomorrow be too late?

Feel the moment slip into the past
Like sand through an hourglass
In the madness, I guess, I just forget
To do all the things I said

Time passes by, never thought I’d wind up
One step behind, now I’ve made my mind up

Today, I’m gonna try a little harder
Gonna make every minute last longer
Gonna learn to forgive and forget
‘Cause we don’t have long, gonna make the most of it

Today, I’m gonna love my enemies
Reach out to somebody who needs me
Make a change, make the world a better place
‘Cause tomorrow could be one day too late
One day too late, one day too late

Tick tock, hear my life pass by
I can’t erase and I can’t rewind
Of all the things I regret the most I do
Wish I’d spent more time with you

Here’s my chance for a new beginning
I saved the best for a better ending
In the end I’ll make it up to you
You’ll see, you’ll get the very best of me

Time passes by, never thought I’d wind up
One step behind, now I’ve made my mind up

Today, I’m gonna try a little harder
Gonna make every minute last longer
Gonna learn to forgive and forget
‘Cause we don’t have long, gonna make the most of it

Today, I’m gonna love my enemies
Reach out to somebody who needs me
Make a change, make the world a better place
‘Cause tomorrow could be one day too late

Your time is running out
You’re never gonna get it back
So make the most of every moment
Stop saving the best for last

Today, I’m gonna try a little harder
Gonna make every minute last longer
Gonna learn to forgive and forget
‘Cause we don’t have long, gonna make the most of it

Today, I’m gonna love my enemies
Reach out to somebody who needs me
Make a change, make the world a better place
‘Cause tomorrow could be one day too late

One day too late, one day too late
One day too late, one day too late

Posted by: littlewifey05 | January 21, 2011

Updates for the New Year

Hey all! I hope everyone had a wonderful Christmas & new year!

Things had calmed down a lot around here for the Holidays, Sean had a WONDERFUL Christmas! He got a bunch of presents, lots of love and attention, and even $200 in cash! Along with the money, he received a new crib and a memory foam mattress. We got a bunch of toys, DVDs, stuffed animals, clothes, and more!

With the $200 I bought him more clothes and a Nap Nanny. Now, I KNOW those were recalled, but I read up on it, and personally, I believe the mother was at fault, not the nap nanny. She left her child in the nap nanny in the crib unattended, and the poor dear fell between crib bumper & nap nanny. We not need say what happened. Anyhow, I use it safely, I never put it in his crib (for goodness sake hes got a $300 mattress!) and I ALWAYS have my eye on him. Not to mention, he can’t lift his head, roll, or really move much anyways…But that’s besides the point.

He LOVES it though. He was super happy the first time he was in it, and it’s helping him learn to lift his head more & more. He can’t completely get it up, but he’s doing great and trying reallly really hard! His head is also curving back out a bit, so he doesn’t look so much like the flat plains of Africa back there anymore. (LOL)

We attemped solids, but thats only been a semi-success. He’s great on Rice, he also gets oatmeal in his bottle along with some baby solids, mixed well with formula. Yummy :)
I think the big problem with the solids isn’t the food itself. He actually seems to like it. It’s the spoon. He HATES this spoon with a passion. I think everytime something goes in his mouth (that he doesnt put in there) its either a medical device or a syringe for meds, so he just associates that “foreign object in his mouth” with medicine or something not pleasant (a tounge depressor for example). So we’re working on it…

He’s also getting teeth! And oh goodness, teething is karma for something horrible I’ve done in a past life, because believe me when I say this, I get NO SLEEP when he’s having a fussy teething night! He broke a tooth the other day, not sure which one it was or where, but we were on a rather lengthy drive, and he was super fussy, and when I got home to pull him out of his carseat, He had blood on his onesie and also on his hands & mouth. Needless to say, I panicked. But I called a few friends along with his ped, and rest assured mommy, he either broke a tooth through, or he just scratched himself nicely with his fingernails (whatever small tiny bit I can’t clip). It never bled again, he never fussed about it much, so I assume it’s a tooth (since I can’t even get a finger in there to feel without him freaking out). He’s also gotten considerable less fussy since that night.

Another success, and one of my favorite and most prideful, is that he can wear pull over onsies now! As you all know, I’ve had a HUGE issue with clothes for him. First off because in the early days he didnt fit into ANYTHING. And then because nothing he fit into had buttons all the way up & down. And anything that did was too warm or had feet so it fit funny. Then there was the problem of buying regular pull over onsies and having to buy snaps ($2.50 for 7 snaps, expensive!) and then cut the onsie, reinforce it, and add buttons. SUCH A HASSLE! But, with the help of a fellow OI mom, one who’s son is JUST like Sean is so many ways, I learned that by buying slightly wider or larger onsies, and ones that stretch considerably, I can pull them, starting at his feet and working up to his arms, wiggle one arm in at a time, and (very carefully) pulling it all the way up over him.

The first time I tried this, I was a nervous wreck. but after successfully getting him into a “muscle shirt” (sleeveless) and getting it back off later successfully, I felt much better. Today was his first day in a short sleeved pull over onsie, and it was also a success. I’ve attached a gallery of recent pictures of Sean, and those are in there too, so (i know you wont), but don’t forget to take a look!

In medical news, not tooo much to report (thankfully). He got his flu & rsv boosters, and is scheduled for his next infusion this coming Monday-Wednesday. He hasn’t gotten sick, and we’ve had a couple fractures, and a few fracture scares, but nothing that wasn’t easily fixed and moved on from in a few days.

He weighs in at a hefty 11lbs3oz (as of Jan 7), and probably hopefully) weighs closer to 12lbs now! He’s also 23 inches long (measured by me with a tape measure). He’s growing so quickly! He fits into NB & 3M clothes (depending on the brand), and I couldn’t be happier. He’s growing and thriving so well it almost makes me want to cry.

He’s SUCH a happy child it warms my heart everyday! Our ped is doing a huge presentation on him up in Monterey, CA, and I’m excited for Monday to come along so I can see what she’s got to show. She also said she’d be taking some of the photos that have been featured on here for show.

He’s also started sleeping in his crib. Tonight will be his 4th night in his own room, and although he’s still waking up 2-4 times a night (depending on how he feels), he’s definitely doing great. I’ve been able to sleep in my bed again, instead of on the couch with him in the bassinet. Strangely, I haven’t had any attachment issues putting him in his own room. I think he does extremely well, and as long as he’s got light & noise (tv does the trick great), he won’t freak out if he wakes up & I’m not there (as long as I come if he cries). I’m trying to get him used to falling asleep without me in the room, so I can just lay him down at bedtime and as long as he’s tired enough he’ll just put himself to sleep. Even though the hospital, fractures, medications, etc always cause schedule f**k-ups, I’m determined to keep trying to get him on a set schedule. I think it will be MUCH better for him in the long run if he can get a routine he’s used to, only being intervened by the doctors when he needs to go (which is MUCH LESS often now than it was before, which makes it easier).

I’m also making his crib bedding, which is ALMOST done. He also has coordinating items to go with it (organizer, memo board, baskets etc) that I’m making so he’ll have a theme going & everything. I painted letters to put over his crib saying “Sean Cain” so I can’t wait to put it all together! And of course, pictures will be up as soon as it’s all done!

Well, it’s midnight, so I have to get to bed, have a happy Friday & fun weekend everyone, and for your enjoyment, here’s all kinds of new pictures!

Posted by: littlewifey05 | December 21, 2010

Heartscan, Teeth, Cribs & PICTURES!

Before the Christmas holiday gets into full swing, I’d like to update!

So we got his heartscan done this past Friday, and FINALLY we have a few answers!

The calcification growth has STOPPED. Hooray! Unfortunately, damage to the artery has already been done, and the obstruction that has been created from the ring of calcium is continuing to worsen because he’s growing and the artery is restricted in growth. Now, that being said, it’s definitely NOT as bad at it was.

At birth he had a heart scan, and his calcium obstruction level was at 15%. When he went back at 3 months, it was at 40-43%. That averages out to about 8-10% a month. Now, however, is progresses at a rate of 1-2% or less a month, and at 6 months, has only increased to 47%.

The critical level for intervention is 80% +, and the docs are confident that they have a good baseline now to say that he will not reach those levels until he’s well over a year old, which means risk for any intervention will be less (still there, and very high, but less because of size and strength increase the older he gets). Heart surgeons still refuse to consider surgery, but heart catheters are hitting their spots right now as far as a potential intervention.

His cardiologist is actually very hopeful that since his progression is slowing down so rapidly, that possibly it will just taper off and level out, and in that case, even if it never goes away (which is the ultimate goal while hes on these meds), he can live with the obstruction with no symptoms for the rest of his life, with no adverse impact. If it stops, it becomes what’s called Pulmonary Stenosis, which is actually rather common. Lots of people have it, and live with it everyday with no problems whatsoever. So that’s also amazing news.

We’re getting his crib in the mail hopefully very soon, and I’m so happy to finally be getting him a crib. it’s such a milestone for my family. I also think I see some bottom teeth! That’s definitely making me antsy because I/m nervous to see if his teeth will be normal or low mineralized. Hoping for normal teeth! :)

Anyways, it’s late and I need rest while Sean’s asleep, but I figured I’m going to be crazy busy getting ready for Sean’s first Christmas (and his 7 month birthday), so I’ll update now.

So I leave you with our Christmas pictures! Happy happy Holidays everyone!

Posted by: littlewifey05 | December 9, 2010

6 month Check up Tomorrow

Sean’s 6 month well-baby visit is tomorrow, and my poor thing is getting a bunch of shots.

He’s up for his 2nd round of RSV, his flu shot, along with all his regular 6 month vaccines. I can only imagine what’s in store for us tomorrow!

We started him on rice cereal right before Thanksgiving, and that’s been working pretty well, he seems to like it a lot. We moved him up to rice cereal with apples, and thats also going pretty well. I attempted supported sitter apples today with a spoon, and, well, let’s just say it was a messy fail. Haha! I think it’s actually the spoon he doesn’t like, not the apples. Since the only other objects (besides his fingers and blankets) that get put in his mouth are syringes (for meds) and tongue depressors (to check for redness because of a cough he’s had for awhile), I think he just doesn’t like anything put in his mouth. It’s so hard sometimes, working with a baby who’s so accustomed to the negative, that when it’s not something bad, he automatically associates the similarity and doesn’t like it.

We had this problem when we first started giving him juice. Since it’s sweet, and most of his meds are sweet, he didn’t want it. We’re finally breaking him of the habit by continuously giving him apple something (apple juice, apple rice, and attempted apple sauce) just to get him to realize that not all sweet things are medicine, and some of it is good (because that morphine is something fierce).

We also scheduled his next heart scan for December 17th. I thought I was nervous last time, and it just keeps getting worse each time. The reality is that I have no clue what’s going on in that little heart of his, but on the outside, he’s doing so well! We’ll get an updated weight on him tomorrow, but last we checked (and I believed I mentioned this already), he weighs 9lbs 11oz, so he was pushing 10lbs (which he should be over that by now, my arms sure think he is!), and he’s about 20 inches (vs 13-14 approx at birth). So he’s getting very big, doing amazingly well, and it would honestly surprise me if his heart (or at least his arteries) aren’t improving. I pray so hard that they are. This medicine is really our last hope for curing him of this GACI (or whatever the cause might be of the calcium).

I have to admit, it would be the best christmas present ever, to be told that his heart and his arteries are showing signs of calcium regression!

Speaking of Christmas presents, my aunt and grandma agreed to buy him his new crib! I’m absolutely thrilled! He’ll have a big boy crib and mommy wont have to worry about him hurting himself anymore in his tiny bassinet :)
And my mother so kindly decided she’d buy me all the materials to make his crib bedding, since I can’t find one I like online, and because I want to make it my way so I know everything is soft to the touch, and his crib bumper is very soft and padded (so if he does happen to throw an arm or kick out, he wont hurt himself). I know there’s been rumors or bumpers being bad for baby, but I really can’t see NOT having one in his case. I can only imagine the terrible feeling I’d have if he hit his arm or kicked out in a wood crib and hurt himself because there was no bumper. That’s why they’re called “bumpers” right? :)

Well, it’s super late, so I’m off for now, I’ll be back tomorrow to update everyone on how his well baby check up went!

Til next time;

Posted by: littlewifey05 | December 2, 2010

Unbreakable Spirit

Update via Unbreakable Spirit Customs…

Hey everyone, I’m still working hard on all my things for my webstore, and last month (Nov) I was able to donate $60 to the OIF! It’s not much right now, but it’s a start!

I’m promoting my site with a BUNCH of pre-holiday sales to get everyone excited for Christmas! I’m offering these specials, all through the Christmas season.

-Buy one get one free on ALL Christmas stock (up to $10 savings)
-Buy two get one free on ALL paracord stock (up to $13 savings)
-Buy a double-sided flannel receiving blanket (any style), and get a matching security blanket ($10 value) FREE!
-CLEARANCE ON ALL WOODBEAD BRACELETS, get yours 50% off at just $2.50 a bracelet (regular $5.00)

BUY ANY 5 ITEMS (OR MORE) AND RECEIVE FREE SHIPPING!

All these sales are while supplies last, and I do have a limited quantity, so get yours now before it’s too late!

CLICK HERE TO VISIT UNBREAKABLE SPIRIT!

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