Amazing

Someone at CHOP created a video of a lot of the kids who were participants in the MOMs trial at CHOP as a way to say thank you to the staff that have changed all of our lives.  The video is amazing and I wanted to share it for those of you interested.  I'm hoping this is okay:)

CHOP Video

the password is: cfdt

Hope you enjoy it as much as I did! 

One Year Ago

One year ago, I slipped out of work a bit early to meet Kelly at Dr. Lagrands office to find out the sex of our new baby.  There was some excitement and anxiety building around the discovery, I know Kelly was hoping for a girl and I was leaning a little that way myself, so that I could have more leverage when it came to saying 2 kids is enough!

When the ultrasound tech said, "it's a boy!", there were mixed feelings; however, none of the feelings would compare to our emotions a few long moments later, when Dr. Lagrand came into the room and said, "We need to talk, this baby has a spina bifida."  "Woah, what?  What's that?"  I had heard the name before but had no idea what it really meant.  One thing I did know however, was that life would probably never be the same again.

The next few weeks were filled with research, sadness, dispair, and very tough choices.  Should we go forward with the pregnancy, or not?  I know for me, the one big question was, will the baby have good cognitive ability? It wasn't just a choice for my own welfare, but we had to consider the baby's welfare, Zander's life, and the family's.  It seems so long ago now, but I know there were many hard days.  I kind of let myself go, started not caring about some things, gained a bit of weight, drank a lot more.  I felt like I needed to "live-up" the next few months before the baby came and our life was forever different.

In what may be one of the very few, lucky breaks, I feel I/we have ever gotten in my life, Kelly's dad passed along some information about a MOMS study.  It took several weeks of research and screenings, but we were invited to Philadelphia to have a chance at partcipating in a landmark study investigating the differences between prenatal and postnatal repair of myelomeningocele.  After Kelly went through all the tests and interviews, we were told we could participate.  Somehow, we were randomly selected to have the prenatal repair.  I knew the summer was going to be a whole lot different than planned.

An experience we never thought we would have, Philadelphia was great.  We had awesome support from our friends, family, and co-workers that allowed Kelly and for a big part, Zander to stay in Philadelphia as required by the study.  I was able to spend several weeks at a time throughout the summer in Philly to see Kelly and Zander.  We did a lot of fun things, the Art Museum, Children's Museum, Franklin Square, Delaware River, Smith Playhouse, Reading Market, Eagles Game, Phillies Game... I could go on and on.

September came and Grayden William Goff was born.  A little early, but thanks to the great staff at the Children's Hospital of Philadelphia, Grayden was well on his way to where he is now.  Grayden is awesome, always smiling, rarely crying, kicking and moving his legs all the time, rolling over, cooing/talking, and so many other things that baby's do.  I know he has a positive outlook already on life, and he will try his hardest to keep up with Big Brother Zander and do all the things our family likes to do.  It is crazy being a Dad of two boys, but I think everything we have done in the last year has been worth it.  Like any parent, I will probably always worry, but life isn't that much different than it used to be.  I am looking forward to many more years with Grayden, Zander, Kelly, (and yes, probably one more) ,jope!

Mommy Moments

These are the moments.....

As I was getting ready the other day, I overheard a familiar giggle.  I walked in just in time to catch this on video.  These are the moments that make my heart smile!!!

PS (nevermind the mess of the house in the back ground.  Lets just say I was too busy enjoying my moments being a mom to clean:) )

Torn

Ever since I was little when people would ask me what I wanted to be when I grew up I would always answer by saying that I wanted to be a mom.  Of course as I got closer to adulthood I continued to want to be a mom, but also knew that I needed to be an independent woman and that meant finding a career.  After changing my major about one million times, I finally decided to become a Child Life Specialist and then finally an Occupational Therapist.  I was lucky enough to land my dream job immediately following school and have worked in Early Intervention ever since.  I absolutely love what I do and feel that I am doing exactly what I was meant to do.  It just fits me.  However; ever since having Zander I have constantly felt torn about working full time, and now that I have Grayden I am feeling even more torn.  I want to have a career and be a successful woman who can support myself and my family; however I also have a constant desire to be home with my boys.  I don't want to miss out on all the fun stuff that is happening with their little lives.  I don't want to ever look back and regret not being there.  We are very lucky in the fact that the boys attend an amazing in home daycare center where they are receiving the very best care from one of my friends Kristy; however it is so hard for me to know that they are with her 8 hours out of the 12 hours that they are awake during the day.  So, that means if you subtract the time it takes me to drop them off in the morning and pick them up in the afternoon I get a total of 2 hours with them during each week day.  I am lucky though, because I do get many breaks during the school year and summer, where I have weeks at a time to spend with them, but during the times when I am working many weeks at a time I am finding it very difficult. 

I'm not sure if it is going from one child to two that has made it harder this year, or it is the fact that Grayden has special needs, but I am really feeling torn this year.  So my wheels are constantly ticking about how things could be different, what we could do to make life a little easier.  What makes it hard is the not knowing.  Not knowing how much "extra" stuff Grayden is going to need or how much extra time that it will take.  This year has been pretty full of doctor's appointments and lots of running to and from daycare for appointments.  I am told that the doctor's appointments will slow down as Grayden nears one year in age; however I have a feeling that the intensity of therapy may increase as he begins to get near being upright and mobile. 

I, in no way mean for this post to be a sob story or a pity party. I feel very lucky to have my career and my children and I know that we could probably arrange it as a family for me to stay home, but that is the constant dilemma when you love what you do, but also don't want to miss out on anything with your kids and constantly feel like you need to do it all.  These are just the thoughts of a mom who is trying to figure out life as a working mama to two boys, one who happens to need a little extra attention. 

Alternate Thinking

When we first found out we were having a baby with Spina Bifida we were in all honesty, devastated.  Little did I know that Grayden was going to change my life and my way of thinking in so many positive ways.  Not only have I met the most amazing people and friends, but I am also growing professionally and learning new things everyday. 

For the last few months Grayden has been going to therapy twice a week at a place in Grand Rapids, called B.R.A.I.N.S, where he works with a PT named Renae.  I met Renae about 3 years ago when I consulted with her regarding a child I was working with at the time that I was feeling "stuck" with.  She came out with me on a home visit and worked with that child, and following her session with that child we noted great progress.  So upon hearing that I had a child who has Spina Bifida I was reminded by a friend, of Renae's work in the Anat Baniel Method and it was suggested that we try it. 

I cannot tell you how glad I am to have reconnected with her and to have been reintroduced to this work.  The Anat Baniel Method is very different from what traditional therapy looks like and from much of what I learned in OT school.  The focus of this therapy is really about Brain Plasticity, which means the brains ability to constantly change and form new connections.  For Grayden this therapy has really been huge. This work focuses on connecting the body and the brain (somewhat similar to sensory integration techniques; however in a different way than what I have learned), and with that body awareness, utilizing movement and movement patterns to allow maximal function with less effort.  I feel that Grayden has benefited from this therapy in so many ways.  With this work Grayden is learning to move around his ABILITIES versus around his disabilities. This therapy looks much different than traditional therapy because it is working with the child where they are at developmentally versus placing them in positions that they are not doing and having them "work" in what is hard for them.  This has been VERY different than what I am used to.  I have always learned to work the child's muscles by placing them in the mulitple positions over, in, or on different equipment.  Instead Anat Baniel Method works with the child while in positions that they are comfortable with and by focusing on the amazing things our human brain is capable of. 

So needless to say, I am enthused and excited about this new therapy.  So much so, that I am now beginning the professional training so that I myself can learn how to do some of this work.  After attending a weekend training with my some of my new friends and some coworkers, I walked away so intrigued that I just need to learn more. 

I am learning that when raising a child who has special needs you are often advised to do so many different things.  Everyone is constantly telling you to do what they think is best.  Even with my background in therapy, I find myself second guessing a lot of what I am told by the so called professionals.  It is hard not to feel constant guilt about whether or not you are doing the right thing for your child or heaven forbid missing out on something that you should be doing or trying.  Sometimes, the information we receive is even conflicting from one professional to another.  I am learning though, to do what I feel is best for Grayden based on the information that I know at the time.  At times, this may mean doing something outside of the so called norm. 

Right now, I feel like we are at the best place for us and for Grayden.  Sometimes, being a mom means trusting that you know best for your child, and not always doing things just because that is what you are told to do. 

Little did I know, that my little guy was going to lead me down so many new paths in life.  Unexpected but unbelievable!!

Rolling, rolling, rolling

Grayden has been rolling from his stomach to his back for a few months now, and today while celebrating Easter with our family, he decided to roll from his back to his stomach multiple times.  He had a lot of encouragement from his awesome cousins this weekend and we are so happy that we were able to share this moment of "firsts" with our family!  I am such a proud mommy today!!

Happy Easter from our family to yours!!

Then and now

Then

Now

Someday he wll probably kill me for posting pictures of his adorable little behind, but for now I think it is pretty amazing!