Saturday, December 27, 2014

They Call it Square 1....

Hey......Guess where I am....The PICU!! After our Christmas dinner was cut short I ended up bringing her to the ER. And what's scarier, I was forced to call 911 & they take you to the nearest hospital. She's been here before, they kinda know her but honestly not as well as the other place. It's not their fault, no harm done. I'm subconsciously "trained" to notice things that are out of the ordinary. And while I hear quite often "you know your baby best" there's still not enough training in the world that will keep you calm while on the phone with a medic. I was cool though. Amidst the circumstances I knew I couldn't blow my top while she was in distress. With the phone balanced between my left ear & shoulder, one hand adjusting the pulse ox probe to get a SAT, ordering my niece around & the other hand shaking her for a response, the fear was setting in. All the while reporting to the EMT what had just happened. I reported her being febrile of a 105 axillary &  heartrate of 240 ish...I was screaming on the inside & keeping a level head on the outside. I mean, what was screaming ouloud gonna do?? I like productivity, getting things done, ya know, cry later on my own time. Right now, every second counted and I made a conscious effort to see that through. So it's the usual....dehydration, rhinovirus, enterovirus & a possible infection.  Looks like I'll be ringing in the New Year at a bedside. Although it's not the best place to be, as long as we're together it's all.....ALL that matters to me. I could care less about being anywhere else in the world. Right here is what matters, it's what counts.

The first 24 hours are probably the hardest to cope with. Waiting for a change or improvement in labs can seem like an eternity. The fear within you grows & taunts your dreams & thoughts. It wraps you in itself taking advantage of your vulnerability. The flutters in your stomach outweigh the hunger you should be feeling considering practically half a day has passed & you still haven't eaten. The sleepless nights & dried eyes become part of you. Sitting at a bedside watching the monitors as the bells scare the crap out of you......Being pulled away by your family begging you to go home, eat, sleep & change clothes because it's been 3 days. I can't tell you just how many of those nights I've encountered. I know there's a rainbow at the end of each tunnel. We'll be back home in no time watching Sesame Street & playing Pat-a-Cake. Cuddling with a book after a warm bath & fresh PJ's. That's my rainbow. It's bright rays of color are there, waiting for us. Just when we make great progress we end up a few steps back to square 1. The hospital stays really set her back but I'm trusting in Him that we'll get back on track....Where we left off.

Rarely do I give myself the chance to wallow in self pity, seriously what does that help??  Remember...Productivity! However that humanistic side of us kicks in the floodgates of tears, pity, anger & hostility become the forefront. Some time ago, someone told me that my baby can feel my pain. So because she's already going through it I try to find the joy in my heart when I'm in her presence. Finding a smile in the midst of pain & hurt is like riffling through a pile of laundry for that favorite blouse. I can't let this distraction dictate my faith. Day 2 is over, talk to you soon....:)

Tuesday, December 2, 2014

Defeat is Such a Dirty Word....

Greetings friends, family & strangers....It's been a month since my last post & of course when I'm away for long stretches at a time you know life has bombarded me. Haley Jean & I are doing wonderful! We've had a couple quick hospital visits within 2 weeks apart due to unexplained febrile spikes. Since trying to wean off one of many meds we had issues with withdrawls. She became agitated, sleep-less & very febrile. Labs, cultures, fluids & antibiotics drew one conclusion: Withdrawls. The week or so of these spells were rather difficult more so for myself in terms of her restless nights & my inability to sooth her. All she wanted was to lay in my arms....for hours! Whewwwwww....Working on maybe a few hours of sleep is definately leaving a mark. If one more person asks me...."Hey, are you alright? Ya look tired"..I'll probably scream..Haha!! I'm real happy we were able to resolve it. Now she's back to her vibrant & bubbly self :)

A year ago this week Haley Jean had severe dehydration & became septic. It attacked her lungs & she needed to be intubated a few days & we spent 16 days in the NICU. Got home just days before Christmas. Having her home for the holiday & my Birthday were THE BEST GIFTS I've ever received in my existence. Looking back on what's happened in the past opens up doors of fear bad thoughts of repetition. I find myself staring at her for minutes at a time. I become entranced in my thinking, in my spirit & mind in an attempt to stay a few steps ahead to avoid history repeating itself. While she's been dehydrated before, I know now what to look for & so I watch.....I hover. Keeping her lungs "dry" with diuretics & lasix are equally, if not more, important than keeping her body hydrated. It's a very....VERY thin line. When she trips, she falls & the threshold of her illness progressing is quite short. I've utilized those scary times as tools in my toolbelt. I've learned to listen with a stethascope to check for clarity in the lungs & how to measure her heart rate manually....I keep discharge papers, clinic follow-up summaries & notes of past visits filed away in hopes of knowing & understanding what's happened, how to fix it & how to avoid things happening in the future. Just when I thought I've got a handle on it, something else jumps up & catches me off guard. While defeat isn't an option, it's certainly an ugly feeling. Defeat.....That word & I have a serious love/hate relationship. Although I don't welcome it's presence, I don't cater to it either. It think that's what makes mother's [people] strong, it's that feeling that challenges you to the core & you can choose to let it beat you or rail against it. By shutting out the doubting chatters that haunt you at night, taking one day at a time & live in the now is how I chose to stand against it. You learn as life happens. You deal & move on...Don't dwell on it.

There's not a day that passes that I don't pray & ask for strength, guidance & leadership. In my own struggles I find the time & words to Thank Him in advance for vision, discernment & good health for my daughter. I must be doing something right :)

On another note...NBC's Grey's Anatomy aired their winter finale episode about a couple who's baby is suspected of having OI. Unfortuntatley many of my OI chums weren't doing a Dominique Dawes over the portrayal of it...OI is a sensitive subject for those who live with it whether it's the person themselves or a relative, it's not something people take lightly when portraying it's existence. Many felt there was no compassion from the physician regarding the diagnosis of the ultrasound, not to mention the lack of optimism of prognosis. From my personal experience with doctors, they aren't trained to be compassionate first & stern the next. I don't think it's intentional, they are trained to give you the cold hard facts... While we want them handed on a silver platter, that's just not ethical. Giving you their true medical opinion is their number one priority & think it's difficult for them at times to do that & be your friend. Hey, I've had my share of doctors who've lost their humanity along the way [not recently] absolutely no bedside manners. But that's life, everyone's not going to take your hand & gently lead the way down the Yellow Brick Road like we'd like them to, if anything you get kicked in the pants halfway down & a "Good Luck" gesture just to say hey at least I told them.....At any rate OI has gone to Hollywood!!! I'll take awareness any way I can. More exposure can lead to funding & research that may one day lead to a cure. I'm hopeful....very hopeful.

Sunday, October 26, 2014


Greetings!!! Today has been a rather quiet & relaxed day with nothing drastic to report. After a couple short PICU visits, Haley Jean is home, happy & well. It was a glorious 75 degrees out & we enjoyed as much of the warm sun as we could stand. We picked out a pumpkin, carved it out & relaxed with a fun Halloween oldie but goodie The Witches. It was a great day, a relief of being able to be free of illness, medicines & the scent of the PICU. Although we've made some progress the past month was a tough one. Haley Jean became dehydrated again & septic. She had increased work of breathing & therefore had to intubated. Aggressive antibiotics, fluids & two weeks on a vent made for sleepless nights & emotional strain on my body. I'm more than thrilled to announce that she's made a full recovery & is back to her bubbly infectiously happy self!!

Now that she's back home my life has again taken off full throttle. Caring for her never stops, there's always something to do. Whether it's packing her up,( trilogy vent and all) for docs visit or staying in, the day never stops. Now that I"m getting older it's important to stay as active as possible. I can say that I"m pretty healthy for a 33yr old with OI however lately I've been feeling the brunt of a day on my tiny frame. Taking it easy is hard becasue I can be a control-freak. It's difficult allowing others to take over because I'm so used to being active. It's a pleasure & a privilege to be her mother. I refuse to have it any other way. WEll I'll end it here for now. I'm exhausted & have to be up to administer meds in one hour so I'm gonna take a quick nap...LOL..I'll be in touch, stay tuned...By the way, check out my link below ..;)

Tuesday, September 23, 2014

Why Me??...Why Not :)

Being pregnant was no easy task given my physical limitations. I have OI type 3, scoliosis, weighed 70lbs & 54 inches tall. My abdomen rapidly expanded, simultaneously gradually cutting off blood circulation in my legs & creating shortness of breath. As I mentioned in a prior post I couldn't talk without going into a 5 minute coughing spell. That was attributed to the baby pressing on my diaphragm & lack of adequate oxygen to the blood. My chest cavity is smaller than average due to the scoliosis & short-stature so anything extra will surely be compromised. I didn't feel her moving until about 16 weeks. Felt like butterflies or flutters at first & my doctor have me a heads-up that it would soon happen. I was shell-shocked when the pregnancy was confirmed for obvious reasons. It wasn't until I felt her first kick that I began to get attached & excited about it. I had this feeling of constipation or pressure in my bottom & my pelvis very early on. This resulted from my constant sitting & all I could think of after a long day at work was lying down. I also had pressure soreness near my curve & lower back which was soothed by a hot bath & Watkins salve rub down....Ahhh what a treat :) The weight gain began to make it's presence known. Transferring grow more difficult as the days & weeks progressed so I decided to continue to stay physically active as long as I could so that my strength could acclimate to the weight gain. Then one day, out of the blue I noticed the Linea Nigra; the infamous black line running down the center of my belly. The pregnancy seemed to be reassured. As If I didn't know already, it was little things like that which seemed to re-confirm it. It was an emotional rollercoaster & I was the only passenger...Sitting right up front. I began to "feel things", emotionally unstable, sensitive to everything around me all the time, taking things personally & feeling the weight of my peers' problems on my fragile frame. It was difficult separating myself from things I had no control over. It was difficult to delineate things that were associated [expected] with the pregnancy & life in general. Most days were fine & others I couldn't control my feelings. I tried my best to consider other people's feelings & desires but it was as if I was working for two people; me before the pregnancy & me during. I was adamant about my baby living in a calm & happy tummy so you can imagine the importance of me insisting on taking it easy but that was a luxury, not a necessity.

Looking back almost two years ago, I never dreamed we'd come this far. With all of Haley Jean's special needs & my own health risks I think to myself "Why her, why me?" I look around & see others not struggling the way I did. Other children her age living their life happy, healthy & whole. I see parents being able to go from A to Z in minutes without once losing their stride. I can't even blink without the help of others. But no matter what happens/nd I have not ONE regret, & I refuse to have this life any other way. If I did, it wouldn't be natural.

In the end I'm eternally grateful for the ability to experience pregnancy. It was an adventure in its own right & my physical challenge was or isn't a disadvantage but a constant reminder that in spite of circumstance to rise to the occasion & embrace it. No complaints, no fear & love unconditionally. These were mere imperfections which made it even more special. I'm thankful to be the Chosen One...;)

Monday, September 15, 2014


Man...Have I been on a hiatus. My sincerest apologies for the inconsistency of posts. Time has been slipping away from me. Now that Haley Jean has been back in the hospital, my time to write posts have become limited. I'm so exhausted after long daily visits that I get writers-block. The thoughts in my head can't seem to escape. I've always found it easier to talk about things rather than write them down.

In new news...Haley Jean has caught that respiratory virus that's going around. It's called Enterovirus No.38. Starts off as a simple cold; sneezing, runny nose & cough. But soon progresses to wheezing & shortness of breath. It's especially difficult for children with preexisting respiratory conditions such as asthma, bronchitis etc. Good thing is that it doesn't last long, it has a cycle of about 2 to 4 weeks. Treatments include some oxygen, breathing treatment like albuterol or pulmicort to open up airflow & some steroids. However, no case is typical. Like Haley Jean, who unfortunately needed the aid of an ET tube. It's difficult seeing your helpless child laying there, trying to play & laugh. Her tiny voice stifled by a breathing tube. To keep her from pulling at it, she's tied down, with only a little slack. The bed is so high up so I have to climb from my chair to lay next to her. She loves to touch my face. The tube doesn't stop her from smiling. She squeezes my hand when she needs to be suctioned. It's very uncomfortable, she cries & my heart aches each time. Eventually I have to climb down from the bed, as most times I'm half in the bed & half in my chair. I'm not 20 anymore so holding myself up, safely is tough. By the time i head home, I'm exhausted. But seeing her beautiful round face, feeling her gentle touch & slightly hearing her softly cooing through the tube makes it all worth it.

She's been in the hospital over 3 weeks now & it's so hard. The separation is difficult to handle most times because when I'm home all I can think of is her. I wish I could spend every second of my life with her, but the truth is, I can't. Sometimes duty calls at home, and I have to answer. I have eat & rest. I feel so guilty when other things interfere with our visits. Sometimes I'm so tired that I can't find any energy to move forward. My heart breaks that I can't be there. This is the life that I've chosen, and I'm sticking to it no matter what. She's the reason my world exists & we are indeed meant to be...;)

Wednesday, July 16, 2014


Random thoughts....

If motherhood came with an instruction manual we'd all have a perfuct life. Why couldn't it come with a warning label...You know, like on a bottle of Tylenol...Don't take if you have xyz...?? If there was a way we could see ahead of time what to expect maybe we'd have all the answers when life  takes a harsh turn. It's amazing what I've learned since having my kid. I feel like this is  the most I've learned in my entire lifetime..Even during undergrad...And my days in undergrad were intense. I crammed for 2 1/2 years, running both general ed classes concurrent with the paralegal courses. The curriculum was nothing like anything else I've experienced. It's safe to say motherhood trumps it all.  I know things now that I didn't know a year ago. Each day I seemed to learn more, the challenges got more intense as time persisted. I've learned to speak in medical terminology, understanding procedures, operate a feeding pump, trilogy ventilator, pulse oximeter etc. My place looks like a small hospital ward!! Overall, although I've learned a lot I still have a lot to learn..;)

Monday, July 7, 2014

The Right to Choose is Mine

Under ordinary circumstance the question of my decision to keep or abort wouldn't have been an issue. However, my physical limitations trumped it all. I was sent to an OB/GYN for high risk pregnancies. At my first appointment, I was asked if I wanted to keep it. Even at my genetics counseling I was asked the same thing. If I wasn't a realist I probably would have been offended or upset but given my unique situation, it was understandable. An amniocentesis was suggested to determine if the fetus had OI or not. It's minimally invasive procedure would puncture the amnotic sack & draw fluid to determine gene status. It's risks of miscarriage were slim but possible. I opted out due to the potential of having a miscarriage & decided that if the child had OI, it wouldn't change my decision to keep her. By my 20th week, they noticed shortened femurs ...A sure sign of OI. I wasn't in denial, just trying to optimistic.

I'd made up my mind a long time ago that children wasn't an option for me. I couldn't live with myself if the kid had OI. Although I wanted it so badly, it would have been selfish of me to bring a child into the world purposely, knowing that it may have OI. Little did I know, I would be faced with this decision years later. It's different once you're in the thick-of-it rather than looking into the future.  Now, they have what is called gene selection. Where the mother's eggs can be extracted & only the "good genes" are selected & implanted. That is THE ONLY way I will ever have another kid. Some people disagree with this option..Calling it selfish, self-absorbed & insecure of a person. Saying that people that choose gene selection is a sense of self hate. It's NONE of those things. It's giving the child the opportunity to live a healthy, pain free life. In spite of my decision to keep, I wouldn't trade it for anything in the universe.

Once, I saw a program called "I"m Pregnant And...Married to a Dwarf"....The couple (guy a dwarf; woman average) was expecting their first child & would find out after birth if the child was a dwarf just as the father. He had achondroplasia, a form of dwarfism & actually said he was hoping the child was too so they'd have something to relate to, that he wanted them to share a common ground. Sure enough, he did. In the delivery room, docs told them the child showed signs; webbed fingers. He was ecstatic as if he was the 200th customer at Costco & received all his items for free!!!! My thought was disbelief. Now I understand that disability pride is very important to the disabled community but it's quite another when you wish a lifetime of uncertainty on a child for your own selfish reasons. If relating to my kid is that important to me, we could wear matching outfits & take up pottery classes!!!! I was infuriated...Screamed at the tv actually...I prayed each day that my child was healthy & free of OI. But statistics  & DNA had other plans. I wanted my child to experience life pain free...No fractures once a month for no apparent reason..No corrective rodding surgeries..Hospital stays for a long stretch... OI & achondroplasia are two different disorders yet have some similarities in terms of skeletal deformations & a series of corrective procedures..Not to mention the emotional strains it takes on self esteem, body image & self-awareness. For a long time, I thought my prayers went unanswered because I wasn't the esteemed woman of God that I should have been. Kinda thought He was punishing me for my sins. But I know now that God doesn't punish anyone. Her disorder isn't a curse, but instead it's a blessing. I didn't want her to have OI but although she does, I accept her for the magnificent creature that she is. People have the right to feel whatever they want. I just think if those feelings have the potential to infringe on the wellbeing of others one should rethink their priorities.

Thursday, June 26, 2014

Land of the Misfit Toys

All my life I've had the privilege of being one the most intriguing types of people on this earth...Physically disabled! Now, as you can see I didn't say that with any inkling of narcissism, but rather a smidge of sarcasm. It's no secret that I'm in a wheelchair I make no effort to hide it. How can I...Right? For as long as I can recall, my wheelchair was a part of me. My parents made it clear that I wasn't an invalid, the chair wasn't a contagious contraption but that it just an accessory. Though it was necessary, it wasn't there to define me in a negative or degenerative way. Unfortunately these were the ideals & beliefs of my family...Not those of society. I found out the hard way that I was "different". It wasn't until college that I truly was forced to look in the mirror & see what others saw: A wheelchair. I wasn't the first to be asked to join a discussion group when the instructor gave group assignments. In fact, I was never asked. The teacher almost always had to ask for me by making suggestions of how I'd be a wonderful asset to the group...How it would be a return of an investment. Kinda like bargaining on my behalf. I felt small, invalid & unimportant. Didn't at all feel a part of something extraordinary. I've experienced this in the workforce as well. You know....A trouble-shooting dilema comes up & everyone in the office asks each other but me...Can you imagine sitting there trying to make suggestions & someone talks over you, puts their hand up & says.."No, no it's not that".. Though I'm the only one that notices this segregation. I don't blame anyone..In fact it's just the way the world is designed...We all are guilty of associating with what's relatable to us. For instance, Typically we all have a tendency to have a "type" in terms of being in a relationship. Most times, we don't date outside this "type" because it's what is relevant & attractive to our preference. It's the same thing....When it comes to the moral values of society in this generation, we're not as progressive as we thought. So, to the able-bodied community, welcome to the Land of the Misfit Toys...:))))

After I'd gotten pregnant & I started to inflate in some very delicate areas of my body,I had realized it was the "Glow." It wasn't long before my mind started to tell me that EVERYONE knew I was with child & the looks began to pierce.  I wasn't married nor in a steady relationship so my antennas were already on edge. Half were actually staring & the other half was just my extreme paranoia. For instance my first appointment almost ended in disaster, only because I was certain the patients waiting to be seen were wondering .."Is she pregnant, but she's in a wheelchair, she couldn't be, she's just a child." Call it what you want, they were. As time persisted & my belly expanded, the looks were even more obvious. So, I'd politely say "Hello, how are you?" It was nicer than "Wtf are you staring at you asshole?!!" I figured you get more flies with honey than vinegar so I knew that from now on it was best to break down the walls of anxiety as much as possible. People were more reluctant [interested] in talking to me. Afterall, I didn't look like the average pregnant woman. I was pregnant, 3" 9', in a wheelchair & to others looked like a 12 year old...When I'm not wearing make-up :)..There was mystery, intrigue..I think a certain intensity about me that welcomed attention. I didn't want to be perceived as a freak of nature, I wanted to be viewed as a woman. Pregnancy is a blessing from God & meant to replenish the earth. It isn't a curse or abomination but a magnificent gift that I'm thankful for each day...:)

Monday, June 23, 2014

A New Life

Forgive me...My goodness it's been a hectic week. So it looks like my schedule won't allow me the time to blog a few times per day as I hoped. Since becoming a mom, my life has taken a dramatic turn. It's really been a life-altering experience, one that I wouldn't trade for nothing in this world. I do what I can to be as flexible as possible, such as being more conscious of time, proactive, organized & productive.

So, a typical day consists of (when she's home) round the clock feeds via g-tube, administering meds, a couple baths, laundry, playtime, naptime, OT/PT, chores, dinner, lunch, errands...All within a 24hr day!!!...Whewwww...Most times I force myself to let others take over because I tend to go at it full speed ahead..My days start around 6 am. Before I know it, it's 2pm when I realize that I haven't eaten breakfast. Traveling is especially a chore. I have my wheelchair, my purse, diaper bag, O2 D tank, stroller....And we're usually on a tight schedule, which is important for us to get to & from a Dr's appt asap due to the time frame of the tanks. It's an event in it's own right. That while, at one point taking on contracting projects full time is a lot on this 65lb frame. I'm not sure how I get through a day. Pain management [me] has been included in our daily regimen. With bone pain becoming more frequent as I get older, I'm forced to be more health conscious. For OI'ers, watching our weight is imperative. I'm lucky to have a high metabolism but some aren't so fortunate. Carrying too much weight on the an already stressed skeletal frame compromises the bones as well as the lungs. It becomes harder to breathe & bones are more likely to fracture easier. Don't quote me...Haha!! Since having my baby I've picked up about 5lbs. That's a lot for me. I'm thinking of writing our elected officials to request squeezing into a pair of jeans be added as an Olympic event!!!! Overall, for an OI'er my age I'm actually in pretty good health. I use my self-propelled chair as much as possible, that keeps me pumped & energized, it also is a method of exercise. Well I'm tired, it's been a long one...Talk to ya hopefully sooner than later..;)

Monday, June 16, 2014

A New Beginning

Hello all!! It's my 3rd post & I'm kinda excited about  sharing today. As I look back during the first weeks of my pregnancy, I can't believe how far we've come. Though I've always been positive & optimistic about life, I couldn't help wonder how life would turn out. Days had passed after finding out the good news & still a lot of people didn't know. I was cautious about telling others because I had a bad case of the jitters. Didn't want to jinx anything, especially due to my own health issues. And I wasn't ready for the strange looks. Overall, I my excitement was met with anxiety & fears which ultimately made my telling people much harder. My first OB/GYN appointment was an awkward one. I'd decided to take a short day at work so I can mentally digest everything. I was about 8 weeks by then & my body was indeed going through a major overhaul. I looked somewhat the same but on the inside I felt like someone else. I thought I knew all there was to know about pregnancy & childbirth. Until I experienced it firsthand, all that "knowledge" disintegrated. I've been physically challenged my whole life & it's had it's ups & downs...So many, I can't tell which outweighed the other. I've had some days where I felt self-conscious all the time & others were more confidant. Upon entering the Women's clinic I was greeted at the door by self-conscious. It's funny how life reintroduces you to those old feelings that were repressed.

Thursday, June 12, 2014


Hi friends!! How are things?? I'm very new at this, only a few hours new so please bear with me as the goal here is to catch up from when I found out I was expecting up until today. I'll start off with two posts a day. It's a lot but I'll do my best not to ramble & share what I think is most important & relevant.

The idea of me having children was a figment of my imagination. Due to my own health issues, it was strongly recommended by many medical physicians that peopl with OI should consider other alternatives in having children. Surrogacy was most recommended yet expensive for the average person. I had read stories of cases such as these in the past so it gave me a little hope that having a family was a possibility. My finances were nowhere near comfortable & my love life wasn't consistent so that option was out. Some women with type III have safely carried full term, others have not. I wanted to try but the harsh realities of carrying a child began to grow. Finally I had made up my mind that it was best to give up that dream. Once I actually got pregnant, things changed. For me, abortion wasn't an option but to some, it was the best thing. I've always been a risk taker, never allowing circumstance to dictate my life. If something arise, I address it. Done. I've always felt that "disabled" feeling in the back of my mind. When I got pregnant, I felt like a full fledged woman. I think many people saw that in me as well, just didn't realize it until now. These are feelings of any woman, disabled or not.  I believe women with a disability that effects growth body image can relate to these feelings. We've been dependent majority of our lives so when something drastic & grown up happens, people scramble to make sense of things. I didn't think I was pregnant until I realized my body was changing. I didn't feel like myself. I thought I was getting my cycle; cramps, bloating, tender breasts. The results made me euphoric & felt surreal. This experience showed me how inexperienced I really was, as I had no idea that the first signs of pregnancy were similar to menstruation. My body was in for a wild ride, and I was the only passenger...:)))

Ultimately I had found myself in that gray area of my life; that uncertain part that forced you to make decisions with not much time to think. It wasn't long before I was hammered with opinionated pessimists...It made my decision clearer & concise....;)


Greetings my friends, old & new! My name is Christine, I'm a 33 year old single mom of an adorable little girl name Haley' Jean. She & I were born with a rare bone disorder called Osteogenesis Imperfecta Type III, otherwise known as brittle bones disease. It is characterized with broken bones with little or often times no trauma at all. Approximately 25,000 to 50,000 people in the United States live with this debilitating disease. The reason the numbers are so broad is due to misdiagnosis. There are about 8 known types [type III being the most fatal] with each differing in symptoms. When I was born, each of my extremities were broken beyond disbelief. Since then, technology has vastly grown providing children the chances of walking & an improved quality of life. Treatments such as Bisphosphenates to increase bone density while decreasing fracture rates by more than half, corrective surgeries of the upper & lower extremities; rodding, physical therapy & swimming have made the dreams of longevity a possibility. My daughter Haley Jean was born February 28, 2013 at 30 wks gestation via c-section. I was placed on strict bedrest for 6 wks prior to delivery due to compressed lungs from my expanding abdomen. There was a 50/50 chance that she'd inherit the same mutation as I have. After my genetic testing was complete, it showed just that: The potential of the child having OI was 100%. It didn't change my decision to have her, which is part of why I opted out of an amniocentesis. Because I had her premature, she'd developed a lung disorder called Broncho Pulmonary Dysplasia or BPD...This is caused by a huge lack of surfactant , a liquid in the lungs that help them expand as the baby inhales. Without adequate amounts, it can cause the lungs to collapse making it harder for the baby to breathe. Since then, she's been on si-pap, bi-pap, endotracheal tube, high flow nasal canulla....Whewwwww!!!! I can go on & on. For the most part, the OI has been the least of her troubles. With only a few fractures since birth, a significantly low amount, it's rejuvenated my faith that she'll be just fine. Spending 6 months in the NICU & on & off hospital stays since then life has been one huge journey. I've had to learn to adapt to taking care of an infant with special needs with my own physical limitations. My semi-chic bachelorette pad soon turned into a nursery/hospital ward. She came home continuous o2, meds every 12 hrs, a feeding pump hanging on an IV pole, pulse oximeter to track heart rate & respiratory status & an apnea monitor. Life never stopped for us. As I went back to work, things seemed even more hectic. I was working 10 hour shifts 5 days/wk. With home nursing not yet set up family stepped in to take over. People ask me all the time "How do you do it?" And my answer is always the same..."I just do it" There's not a day that passes when I don't think about how did I get this far. I'm always baffled that the answer is still unfounded. I've never been known to quit anything that I do. With the Grace of the Most High, it is only with Him that I can make it through one day. I hope this blog will bring encouragement, strength to those that are struggling with health issues, or life in general. My goal is to bring awareness about OI, awareness to those unaware of disabled parenting & the hardships of acceptance. A lesson motherhood has taught me is that sitting down doesn't mean you're less than a parent. It doesn't validate your competence, but it solidifies your innate ability to love....<3

`HJ's Momma...

About 20 weeks here, just before I was placed on hospitalized 24 hr bed rest

Two days before showtime :)