New Stuff

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Wow...Things have gotten SO busy around here. I thought our plate was full before, but nope....apparently there was room for more, and we filled it! Things have been crazy, exhausting and so much fun. Miss Maddie is moving right along, and re-affirming her Rockstar status on a daily basis. Last week she got some new wheels...Her walker finally came in!



Now, if you're thinking "It looks exactly like her old walker," You are right! It's identical, except for one major difference...This Kaye walker has swivel wheels on the front. This is a big deal...No more dragging, and lifting to make turns. This walker turns VERY quickly, simply by shifting her weight. Our PT brought it by last Thursday, and we put her in it right away. My sweet little girl was instantly transformed into a drunken sailor. She swayed, and stumbled...She giggled and did donuts in the driveway. Then she tried to walk straight and got mad when she couldn't...It would have been hilarious, if we hadn't felt so frustrated for her. I was really concerned. I didn't want her to get frustrated and abandon it, and I didn't want to push too hard. SO, I gave it a day and tried again...and she did a little better. Then over the weekend we brought it to church, Target, and Home Depot...by Sunday night, she had it down. (Click Here for video)




I am so proud of this little girl. She is a determined, fiesty, little thing...and I love that about her! She fell so many times over the weekend, and every time she got back up and tried again. One of the falls was almost a face-plant on the driveway...and it scared both of us. With tears in her eyes, she looked up at me and said "Mama, I scared...I fall down." I picked her up and asked her if she wanted to go inside. She said "No...I want more walk." I honestly don't know if I'll ever be as strong as my little girl, but I truly hope to be one day.

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Another new development around here has been the start of Pre-T-Ball!



I'm cracking up right now at this one...He totally has the glove on the wrong hand!

We have been so excited about this! Mason has been practicing his swing for weeks...



Even Maddie has gotten in on the action...



Ever since Mason wore his first baseball cap at 6 months, I have been looking forward to t-ball! And I'm telling you, I was not disappointed! It was the funniest thing I have ever seen. The "team" is a group of boys and girls, ages 3 and 4. There are no rules, and pretty much everyone on the field has no idea what they are doing...It's hilarious. And the best part was...Mason loved it! Here's a few of my favorite moments...


The moments of anticipation...




The moments of chaos... (Click Here for video)


Mason decided he would rather field the ball then run to third.


The moments of frustration... (Click Here for video)



OK...so I know I should be teaching him not to get upset, but this little fit, had me rolling!

Even the moments when I looked up only to see my little guy is quickly becoming a big guy...



And then there was this moment... (Click Here for video)


Yep...This girl's got some moves!



SO...Lots of new things going on around here, and the bugs couldn't be happier.



It's gonna be a busy spring, but if these past few weeks are any indicator of what's to come, I think it'll be the best one yet.

D-Day: Two years Later

Tomorrow is two years since D-Day.
Two years ago, D-day meant so many things to me. Diagnoses Day...The day my doctor said words that would change everything. March 17, 2009 was the day we found out about Madison's spina bifida, and aside from the diagnoses, D-day has come to mean many different things in the past two years.

Devastation.
It was such a hopeless, frightening time for me. I remember wondering if I would ever laugh again...or if the pain in my chest was ever going to end. I felt like I was in mourning...but I couldn't quite explain what had been lost. I mourned the loss of a dream...the loss of the life I had hoped for...for Maddie, for Mason, and for me and Chris.


Disappointment.
A feeling of acceptance, but disappointment at the hand we had been dealt. Knowing my little girl would have struggles and pain that I could not take away, was more than disappointing for me. I wanted to protect her from everything, and I felt like I was failing her, because I hadn't been able to protect her from this. Life can be tough, and people can be cruel, and I knew I wouldn't be able to protect her from that either. The disappointment was overwhelming.



Decision.
After the initial shock we were faced with a decision...What to do next? Although terminating the pregnacny was an option we were given, it was never something we could have considered. I have very strong beliefs about the sanctity of life, and I knew that regardless of her condition, Madison was still a precious, little life, and worth fighting for. We decided to join the MOMS trial...a clinical study for babies diagnosed with SB.


Discovery.
During all of this, I was desperately searching for answers. I spent many sleepless nights on the computer trying to learn anything and everything I could about Spina Bifida. I don't recommend this. There is SO much bad information out there, and most of the time it left me more confused and frightened. The day I discovered Babycenter was the day I discovered hope. This group of parents saved me in every way possible. They caught me when I was falling, they lifted me when I was down, and they encouraged me to get back up when I didn't have the strength to move. I will forever be grateful to these amazing parents who continue to give me hope, comfort, and answers when I need them most.


Two years later, this day means so much more to me. My life is not the same as it was before D-Day...It's so much better. It is fuller, and more complete...and I take nothing for granted. That day, and the two years since, have changed my perspective completely. D-Day doesn't mean all the things it used to mean...Today it means more.

It means Devotion.

I am completely devoted to this girl...


It means Determination.


She shows me on a daily basis that anything is possible.











It means Delight.

How could I possibly feel anything but pure delight when I see these two faces...



Two years ago, I listened as my doctors told me how devastating this was...How my daughter would be mentally delayed, paralyzed, and possibly stillborn. What they should have told me was that she would be the most amazing little girl I have ever laid eyes on...And that my little boy would develop such a tender heart, and an appreciation for the things that make he and Maddie different...and that the bond between Chris and I would grow stronger and deeper through adversity. There's not a day that goes by that I don't wish I could take this from Maddie, but the newfound perspective, and the love and strength that continue to grow are unexpected treasures that I feel so fortunate to have found.

It's Spring Here

It's starting to feel like spring around here...The air is crisp, the cars are covered in pollen, and the Mardi Gras parades are rolling. I love this time of year. It always inspires me to clean out all the closets, dig in the garden, and start things fresh and new. I love that the kids are out playing in the driveways again, and the neighbors drop in to say hello. People around here really do hibernate when it gets below 50 degrees, so it's always nice when that first weekend of warm weather rolls around.




Spring always inspires me to be productive...and though it's not actually spring yet, it's close...so we've been busy. We got so much done last weekend, but the project I was most excited about was Maddie's new parallel bars. Awhile back I saw a video of a little girl walking while using parallel bars made of pvc pipe. We have been working on Maddie's cruising with one hand on the sofa and the other on the coffee table, and trying to maintain her balance better. So, I thought of those bars again, and we made a quick trip to home depot. It was a simple project, maybe took about an hour, and I am really happy we did it...so is she.



(If you're reading this in facebook click HERE for video)



Her derotation straps came in this week, and let me tell you, THIS is a work in progress. I was so frustrated with them the first night that I was ready to go back to the velcro get-up I had rigged for her. The thing is they are super long...waaayy longer than the velcro straps, and they are much skinnier...like half the width. SO, straps that are 5 feet long, and 1 1/2 inches wide need to wrap around lots of times to work on a 20 month old...creating Michelin Man legs.




My poor baby...It takes me a good 15 minutes to get them on her, and she's so patient. I'm getting better at it, and I'm trying to figure out the best way for them to hold the position. The trick is to get them tight enough, without it being too tight on her legs. It's not easy, but they seem to work really well once they are on. The fasteners make it tough for it to get loose as she moves around, which was the problem with the velcro. Anyways, it won't look pretty with an Easter dress, but if it helps keep her legs straight, I'm in.



So we've been spending alot of time outside lately...car washing, bike riding, picnics, sidewalk chalk, gardening...all in the first weekend! Mason was hilarious...He wanted to do it all. He even tried to fly a kite. You would have thought he'd been snowed in for months! But that's just my guy....He wants to get every ounce of fun out of his weekends, and I love it. He starts planning it around Thursday...what we'll do each day that Chris is home, and even what we'll make for breakfast. It's awesome. He just loves being with his people, and we love being with him.





His new thing is to watch videos on our little portable player. It's funny to watch him. Friday night he watched Toy Story 3 in his tent with Maddie...She's always trying to get in on whatever he's doing...copying his every move.





He introduced her to Grahm crackers. Here is she, one in each hand, chowing down...I think she likes them.




They love to play together, and most of the time they can, but lately, when Mason rides his bike outside, Maddie gets upset when she tries to follow him in her walker. She points to the bike and says "Ride!" I can tell it bums her out a little, but she's a great sport about it. Still, I've been looking forward to the day when she will be able to ride a bike with her big brother, and all the other kids in the neighborhood. So, you can imagine my excitement when I learned that the day may come sooner than I thought. This is an Amtryke.




These trykes are specially designed for kids that have trouble with mobility. Our PT got Maddie added to the wish list at Ambucs in Novemeber, but we were told there was no funding for kids in our area, so we should try to raise the money ourselves. So I've been brainstorming about different ways I could raise the money...but, when thinking about the cost of her bracing, her medical equipment, and her overall therapy needs, I realized I don't NEED a bike for Maddie...I just WANT a bike for Maddie, and if I'm going to try to raise money, it has to first cover the things she really needs. So I hoped and prayed that somehow Maddie would get her tryke. Michele called me Friday to tell me that Ambucs had just called her to let her know that Maddie had gotten a donor, and would be recieving her bike. God. is. good.




Have a great week...and a Happy Mardi Gras!

A Year of Lemonade

Another Birthday to celebrate! Today my little blog is a year old. One great year of highs and lows, and it's been so much fun sharing it here. I hope the picture that others see when they look at our life is a rich, happy, ever-changing mosaic of a real family living life the best way we know how. We have good days and bad days, and I hope I've shown that...It's not always easy, but it's real and it's amazing. Our lemons made the best tasting stuff I've ever had. Thank you for sharing the lemonade with us!

Happy Birthday Shunt

I can't believe it's been a year. One year since I wrote Shunt Happens. One perfectly uneventful year...in the life of a shunt. You see, while so many important things have happened this year, it's sometimes easy to overlook what has not happened. We have not made any trips to the ER. None. We have not made frantic phone calls to the pediatrician. We have not had any heartbreaking MRI results. We have not had any shunt revisions. Thank you God...

Today is a big day. One year ago today Madison had surgery to place a shunt in her brain...And here I am, a year later, feeling so completely overwhelmed with gratitude for what it meant that day, and what it continues to mean every day from now on.

Don't get me wrong....I did not want this. at. all. I fought it as hard as any Mama out there. When you find out your baby will have spina bifida, you also learn that there's a 85% chance that they will need a shunt. I held on to that 15% with everything I had. I prayed against it daily. I knew that a shunt is a very fickle thing. For some kids it works perfectly for years and years. For others it is a constant source of stress. Shunts can act up. Each time a shunt malfunctions it means more tests, more surgeries, and more hospital time. I wanted Maddie to be in the 15% that would never need one. I thought we would be. We were told that if we made it to a year without a shunt, it was 90% likely she would not need one. I held on to that. Around 7 months Maddie's head measurements took a dissapointing jog away from the normal curve. The fluid was increasing the size of her ventricles, and putting too much pressure on the brain. We knew it was a a losing battle. She had her shunt surgery at 8 months old. I was crushed. Just knowing this "thing" would be in my baby girl's head for the rest of her life was heartbreaking. And the constant worry that something might be wrong is an ever present reality to a parent dealing with a shunt. Every fever, every nap that goes too long, every upset stomach leaves you to wonder...Could it be? On this day, a year ago, I was filled with worry, fear, and anger at once again being on the wrong side of statistics. But today, all I feel is gratitude. This shunt has saved Maddie's life. It made it possible for her to continue to thrive and progress, and she would not be who she is today without it.

There are many others out there facing procedures for their little ones, that they have fought equally hard against...and my heart goes out to them. No one wants these things for their kids. But at the end of the day, if they need it, you want them to have it. You want whatever it takes to keep your baby healthy...be it a shunt, a trach, caths, braces...whatever. Once you get past the idea of this "thing" being the enemy, you will find yourself so grateful for what it means for your child. It means life. It means the ability to thrive and grow. I know I will continue to have a love/hate relationship with this shunt, but that's ok. I love when it does what it's supposed to, and I hate the idea that one day it may not. But for today, I am thankful and happy to celebrate the first of many years with a perfectly working shunt. Happy Birthday, and here's to many more!

The Good, The Bad, and The Bertha

The Good


So most of you know that we participated in the MOMS trial, which has just recently ended. For those of you who don't, here is the back story...



At 24 weeks, we found out that Madison would have SB. We were quickly sent to Philadelphia to be evaluated for a clinical trial called MOMS. It was trying to determine if SB babies did better after having their opening closed in-utero, versus the traditional approach of closure surgery shortly after birth. There were two groups, and participants were randomly selected for either group. We were accepted into the trial, and randomized into the postnatal group. This meant we returned home until 37 weeks, and then went back to Philly for the delivery and surgery. I had mixed feelings at the time. I wanted to do what was best for Maddie, but I couldn't stand the thought of being away from Mason for months on end. So I was a little relieved when we were told postnatal. I felt it was the best of both worlds...I got to go home and continue with a somewhat normal pregnancy, and I still had the benefit of the most amazing doctors and facilities on our team for the birth and care afterwards. I was at peace with the decision.



This week the results of the trial were made public. There has been lots of press on it, and it has caused alot of mixed emotions among the SB community, and for me, personally. It's hard to watch a clip of a kid playing basketball, showing no signs of SB, and hear them attribute it all to the fetal surgery. It causes people to assume he's been "fixed". And that is not true. On the other hand, it's also not safe to assume that kids who did not have the surgery, will automatically fare worse than the others. Each child is unique, in every way imaginable...And I hope all this new attention doesn't try to define each child, and determine their abilities and inabilities just based on which group they are in. Maddie is doing some pretty remarkable things while representing the postnatal group, and I am still at peace with our decision. (for those reading this on facebook click here)









I know that we were meant to be in the postnatal group. I know that I did all I could to give Madison the best possible chance. I know that I walked through every door that was opened to me, and I know that the doors that remained closed, were closed for a reason. I have no regrets about joining the trial, and I feel incredibly fortunate to have been given the opportunity. It is so exciting to think of the developments that will come from this trial...the possibilities are endless. And even if the media coverage is a little off base, only good can come from all the publicity and awareness that the press brings. An SB diagnoses today, is not what is was yesterday...and that is a good thing.







The Bad


Quarantined. That's how I feel. We are all sick, and it's been almost a month since we were all healthy. It started with Mason. He came home with a cough one day in January. I decided to keep him home because he looked terrible, and the cough and congestion were pretty nasty. The principal called to let me know half of his class was home as well, and some had tested positive for RSV. Great. So he stayed in, got better, and finally went back. A day later he was sick again. SO he stayed home for another week...He's finally on the mend, but now Chris and I are sick...which of course is a bad thing. A 4-yr old who's been couped up, and finally feeling better is no match for 2 parents just coming down with it. And then last night, Maddie started coughing. Ugh. She has sounded ok today, but still coughing a little more than I'd like...so we will see. Chris is passed out on the sofa, I'm chugging cough syrup, and we are rationing out the last of the chicken soup...Should be an awesome Valentines weekend.







The Bertha



While bathing Maddie on Wednesday night, I noticed an area on her right tush, just below the hips that appeared to be swollen, and jutting out. I'm not gonna lie...I was freaked out. Enough to call Chris in to examine it with me...Enough to take pics and email them to our PT...Enough to post those pics on an online SB support forum. Yikes. So the pics went out, and the answers started rolling in. Possible CSF leak, fluid-filled cyst, shunt malfunction, scar tissue. I was a nervous wreck. So the next morning we had PT. Michele looked at the spot, and determined it wasn't anything with her hips or an injury, but she thought it would be good for our neuro to take a look at it as well. Luckily, we had a neuro follow up later that day. So we prepared ourselves for the possibility of an MRI, and further examination. Neuro took one look at it, felt it, and announced, "Looks like she's a chunker!" HUH?! Official diagnoses: "funky fat deposit." I named it Bertha. So here I was, just a few days after saying I would be exhaling more, holding my breath over a "funky fat deposit"....Sheesh. Live and learn...and when I feel the need to overreact again, I'll just check in with Bertha.

Exhale

Do you ever get so caught up in a task that you forget to breathe? Something that requires complete focus and concentration, and the slightest distraction could be disaster. I do this all the time. From decorating a cake and parallel parking, to a serious game of jenga...I could easily pass out if I give it too much thought.

Yesterday I read another blog, one of my favorites, and the post asked readers to find a single word that best describes how you plan to approach this new year. Taking all that you learned from 2010, and using it to redefine 2011...In one word. I love this kind of stuff because it really makes you think. And I did. I took stock of all that happened last year, and re-evaluated where I am today... All the growth, all the setbacks, the frustrations, the highs, the lows, the laughter, the tears...all of it...and my word was "exhale."

I realize that I spent most of last year holding my breath, in fear of what the future would bring. I worried about everything..from milestones and shunts, to preschool and everything in between. And the one thing that I learned from 2010 is that my worry doesn't change a thing. Life is gonna happen whether I stress about it or not. So why not breathe, already? If I could tell new Moms, going through that first year, one thing it would be " just breathe." And that's good advice for anyone. We spend so much energy worrying about jobs, finances, relationships, and health issues. We let ourselves get so caught up in things that are out of our control, that we suddenly realize we've been holding our breath for a year, just waiting for our fears to become reality. I heard a quote once that said it best..."Don't let your fears of tomorrow steal your joys of today."

This year I plan to exhale more. I want to breathe in all of the beauty and wonder that life holds, and release all of the fear and uncertainty. I don't want to be so completely focused on the details that I miss the big picture.




Will I still stress? Of course. Will I still get a knot in my stomach when something doesn't feel right. Yep. But I hope that I can recognize those moments for what they are, and move past them. I hope that I can continue to move forward, instead of becoming paralyzed with fear. And I hope that I always remember that with the rain comes new life, and the ability to grow.