Tuesday, October 9, 2012

The interview

Recently, our local Spina Bifida association asked our family if we'd be willing to do an interview with a news station and help spread awareness. We were honored ofcourse as this is a personal passion of ours and has been since we first heard the diagnosis over three years ago.

With many butterflies in our stomachs, we talked with the reporter for over an hour. We think the news station did a great job! I could nit pick and tell you of all the things that we spoke about that needed to edited out due to time constraints, like when we said please don't look at our child with pity in your eyes when you see him out using his wheels; he has taught us what is important in life and it simply has nothing to do with what your legs can or can't do.

I won't tell you how we spoke about the regret of not taking Alex in to see the doctor who gave us Alex's initial diagnosis during pregnancy and encouraged us to terminate several times over. In no uncertain terms, we were given such a bleak prognosis about his life. Not that this physician is bad, just that he was uneducated about the reality of living with Spina Bifida today. We wish we could have shared with him the reality of someone living with Spina Bifida now, not what he learned from an old outdated textbook. Its not that spina bifida doesn't have its challenges but that its certainly NOT worth throwing away a life for!

I won't tell you how I wished that Alex had warmed up a little sooner and really showed his stuff by zipping around in his wheels, or how I simply wish I wouldn't have been so nervous and would have known to look at the camera and not the reporter during the taping, ha,ha.

Mostly I wish we could have said more succinctly this is the beautiful child we were told to forsake. We had no idea what Spina Bifida was and we were devastated and scared and just held on tight to each other and our faith. I wish we could have had a crystal ball back then to see Alex now. We wasted so much stress, so much worry. He (and his brother) are everything we could have ever hoped for and more, but I won't bother with any of that (he,he) so here it is:

Click on this link for better quality
The interview

If the above doesn't work, here is a taped version.

Monday, October 8, 2012

Pre-School and medical updates

This is a much easier post to write now that we are a full month in. I was soooo worried how the boys would adjust to pre-school. I know crazy right, I mean me, worry? But this was honestly the first time they'd truly be away from me. We would do story time at the libraries, playdates and we signed up for several sessions of pre school classes during the last year but that was all with their mommy still with them.

At three years old Alex would still get upset when I would leave the room in our own home so I just couldn't imagine dropping him off at school and LEAVING and having him be okay, with people he didn't know. I seriously thought he'd cry the whole time I was gone, at least in the beginning. I was only a little comforted by the fact that the boys would at least have each other. I know they are three years old, but they are little for three--really, developmentally and physically. Even more so I was REALLY hesitant about sending them to school EVERY day. Granted, its only for two and a half hours a day but going from nothing to five days seemed like a lot. Their therapists (and friends and family) assured me they would do great but ofcourse I worried.

But I'm here to say they both amaze me as always. I worry for naught, as always! 


Maybe some day I'll learn to do less worrying but probably not. I seem to be a very slow learner :)

To help prepare them, I made sure to make a big (fun) deal out of what school would be like a good month before it even started. We brought home books from the library all about "first days of school" and we talked about the teachers in the books and used their own teachers names. We talked about all the crafts they would do, the new play ground, and all the toys. We scheduled not one but two different trips to their preschool room to play a week and two weeks before school actually started. I do think all of that helped some, (although maybe more for me).

There were tears that first day of drop off, yes but I'm also pretty sure they were mostly mine. Alex did cry as I expected but as I stood outside the door out of sight just to listen, he was comforted by his new teachers within just minutes, minutes, and he was quickly encouraged to play. I knew the teachers would be good, not strangers to new school angst (children or mothers) but I had no idea HOW good. They were patient and nurturing and have that really great talent of knowing exactly what to distract little nervous hearts with.

Oddly enough that first week or two, Alex would be the one to cry with every kiss good bye but Nicholas would hold it together until I would pick them up. It was the end of the day Nicholas' emotions would come out and alternate between "can't get enough of mommy" to full out "I'm so mad at you mommy" tantrums all the way home.

 Hey, he looks familiar....

Only a month in and I can't believe how much their little minds are learning. They are coming home with an explosion of new words, that just trickle out throughout the rest of the day. I hear little hums and choruses of newly learned songs. MY guys, the ones who could only say "momma" at age 2. Its amazing how much they have changed in the last few months. Now with preschool added, they are soaking up soooo much more, forming new relationships completely separate from their momma, gaining confidence in themselves. Ofcourse when I ask them what they did for school that day, they simply say "played" because ofcourse to them that's what they do.

The school they go to is an integrated pre-school which means half the class is made up of children who have some sort of special need and the other half are considered "typical." The ratio is what really won me over. A maximum of 12 kids to one special education teacher and THREE classroom assistants PLUS the physical and occupational therapists that work with Alex and speech therapists who work with both boys. They also have a weekly pool session, music class, and gym class every week oh and an accessible playground. I really can't imagine anything better for both boys!

Other updates: The boys recently visited with their pulmonary doctor. We are preparing for the cold/flu season and upping the boys nebulizer treatments to twice a day. Their lungs have a lot of scarring due to the ventilators they needed as infants so common respiratory stuff hits them pretty hard. We are told that most children with this type of lung damage grow enough healthy lung tissue by the time they are five years old and should put them on equal grounds when dealing with respiratory illness. Here's to that!! In the mean time, we can at least enjoy some extra cuddle time brought to you by Pulmicort :)

Alex was also seen by his orthopedic doctor, he gets x-rayed every 4-6 months to monitor his scoliosis and just a general check in. We have been having concerns regarding a very tight leg that has been getting more difficult to unbend and stretch. We talked about this at length because its now affecting his posture in the wheel chair. That one leg wants to bend and rub against his wheel. Alex can't feel it but it was causing lacerations when he was wearing shorts in the summer. We have him in his stander about an hour or so a day as recommended but ultimately he spends the better part of his day in a seated position either in his wheels or sitting/scooting on the floor so those muscles and tendons are getting tighter and shorter. There's some other medical stuff I don't quite understand but ultimately there is a surgery that can and may need to be done but its more extensive than I initially thought and involves not just cutting the tendon but also into the bone. As much as Alex dislikes it, we are now trying to increase his stander time, as well as advocating to get more physical therapy and aggressive stretching to see if we can make some in roads with this. This little man has had six surgeries in his first two years of life and honestly that seems like plenty, we'd like to leave it at that!

Lastly on the medical front we are still dealing with diagnoses like "failure to thrive." We are pushers of high protein/fat soy shakes and even pop tarts and oreos in favor of GI tubes--something that has been discussed continually at check ups. We tried the good oils and lots of soy butters and protein any way we could possibly offer it but they just weren't gaining and in fact were losing weight. The high fat diet is finally putting weight on. Both boys are up almost five pounds each since the summer time which is GREAT, now its just waiting to see if growth in height will also come. At almost three and a half years old Alex is 25 pounds and just 30 inches tall, and Nicholas is 25 pounds and 33 inches. They are easily mistaken for children much younger and are overwhelmingly dwarfed by their class mates. Luckily they have a whole boat load of cuteness on their side (unbiased report ofcourse).

Because of their severe prematurity no one expects them to be giants (their parents certainly are not) but the doctors are concerned that they have strayed farther away from their own growth curves in the last year. Alex has gone through all the testing with endocrinology and nothing glaringly abnormal was found. They did recommend growth hormone treatments but due to his severe scoliosis it is not something that his orthopedic doctor or his parents are willing to risk pursuing at this time.

Regardless of that terrible sounding diagnosis, I say they are most certainly thriving in all the ways that matter!!!


Spina Bifida Awareness

Three and a half years ago I first heard the diagnosis. I was devastated and scared not having a clue what SB was or how it would impact our lives. If you've met Alex, ever seen his light up the room smile or watch him tear around in his wheels, you'll feel his impact in our lives.

Spina Bifida is not WHO he is, just something he happens to have. He is an amazing gift, just like his twin brother. We have met amazing people and had tremendous support from others these last three and a half years, blessings we wouldn't have known if it wasn't for SB. I am hoping to bring awareness so that maybe the next parent who hears those words might remember Alex or any of his amazing friends and be a little less scared!

Did you know that every year 1,500 babies will be born in the U.S. alone with Spina Bifida? Did you know that its the most COMMON permanently disabling birth defect? Did you know it literally means "split spine" and that it happens BEFORE the 28th day of pregnancy--before many women even know that they are pregnant? ***While there is no cure and there is still much to learn, taking a vitamin with folic acid is thought to decrease this birth defect up to 70%!! ***

Well before a very cute and feisty little boy came into my life three and a half years ago, I certainly didn't know any of these things. I had barely even HEARD of it and hearing the diagnosis I was terrified. I can't tell you how many times my husband and I had to hear the "option" of terminating our pregnancy because of the prediction of my son having a very poor quality of life. 

By the way, have you seen my son? 
Hardly what I would call having a poor quality of life-but I digress.

What is scarier is that many of the Perinatologists who will be reading a woman's ultrasound and giving that diagnosis often times have very outdated information about SB and give a very bleak prognosis. Expectant parents put their trust in those with an M.D. after their name, and they are quite frankly making life and death decisions with the information they are given.

While there is no cure for SB, the advances in medical treatment have come a tremendous way in recent years.The doctors who are diagnosing spina bifida ARE NOT the doctors who are involved with, care for and see first hand all those who are living with SB are accomplishing. Please note: I am not trying to bury my head in the sand or diminish that people living with SB don't have extra medical concerns or challenges to overcome. I just want awareness and education to catch up with the reality. Spina Bifida today with early medical intervention and preventative care is VASTLY different than Spina Bifida of even a decade ago.

Women: PLEASE print this out and bring to your next yearly appointment. If every one of us could do this, just think how many people we could help. PLEASE pass this on to the doctors in your lives so that hopefully the next woman who hears this diagnosis will have the information and support she needs. Together we can move mountains!!!
THANK YOU!!!!!!!!!

The medical professional's guide to spina bifida

An expectant parents guide to Spina Bifida

Saturday, October 6, 2012

Covert operation

over here.
can you see me?
this is kind of a covert operation.
obviously my mommy doesn't want you to know
how fast we are growing up,
she hasn't posted in a REALLY long time.

so shhh....don't tell her we're here. 
but we knew you'd want to see for yourselves
whats new.

there you are!

We've had a FANTASTIC summer!
Here we are hijacking a beach vacation
with our "mammie" and "papa"!
My most favorite parts were:
 spending time with my Mammie.
and playing in the pool!

 Did I mention I love my Mammie?

 oh you want to know about my brother too?
okay.....I guess. 

He really liked the sand.
He had every one help bury him
over. and over. and over. 

 every once in awhile he'd dust off,
wade in the water
but he only really wanted to go back 
for more sand. 
He convinced me to give it a try too. 

oh yeah,
mommy was there too.
 She had to wrestle me out of Mammie's arms
to get this picture. ha,ha
Summer time means.....

more camping trips!!


More pool time!
 parties and picnics
even with magic shows!
 Summer time is finding lots of neat slides

Nicholas got a toddler bed
reading, reading, reading.  

 and building forts on rainy days

visiting the animals. 
summertime means lots of lunches at the park
making pretty messes
Making yummy messes
and always on the move!!!!
pretending we are a choo choo train....
There's lots more to catch up on
We'll make sure to get Mommy moving
on more of these updates!!!