Annual Stroll N' Roll in West Michigan

This year some of our amazing friends, Leigh and Emily have organized the first ever West Michigan Stroll N' Roll.  The goal of the Stroll N' Roll is to raise money for the West Michigan Spina Bifida Association.  We are forming a team and naming it "Grayden's Gang" and would love to have as many people as possible join us for the walk to support our amazing little man and all the other wonderful kids and adults we have met that are living with Spina Bifida. 

Whether or not you are walking if you would like to donate to our team click the link at the top of the page or Here. Those links will direct you to our WePay site where the donations will be collected for Grayden's Team.  We are also in the process of designing a T-Shirt for those of you who would like to join us for the walk and will let you know as soon as we have them complete.  We are guessing that they will be around 10 dollars each.  This is the design as of now; but we still may tweak it some.  Thanks to Brad Goff for the scooter graphic!

The walk is being held on October 15th, starting at 10:00am at Millenium Park in Grand Rapids. 

Family Vacation and Welcomed Home to Great News!

Not the best family photo,  but I can't get some of the better ones to rotate so this will have to do.

Sink baths are the best



We took a long weekend to spend some time as a family of four, (plus my dad and Karen for a few days) and headed up north to my dad and Karen's cabin to spend some quality time together.  We had such a great time relaxing by the lake, taking boat rides, hanging with the boys, and "hiking" at Pictured Rocks. 

 

We returned home late Monday night, because we had a full day of appointments scheduled.  Both boys had therapy appointments and Grayden also had an appointment with his Physiatrist (Rehab doctor) and Orthopaedic doctor.  These appointments brought me some anxiety, because as some of you may have heard me talk about before, Grayden has a pair of AFO's (ankle braces) that he is supposed to wear to "stretch" his ankles at night while he is sleeping.  Since we had the AFO's made I have questioned their purpose because the angle in which they are "stretching" his feet is an angle he can get his feet into on his own.  Also, with the Anat Method, the philosophy is more to let the child move and explore without inhibiting movement so that they are exposed to different sensations and have the ability to improve upon what strength and movement that the child may have.  This is not to say that they never suggest the use of AFO's, but it is not as widely recommended as in the more "traditional" model.  I whole heartily believe this to be true for Grayden right now, that if he were put in an AFO it would decrease the chances he has to move and develop strength; however I have also been very torn about this because my therapist mind keeps saying "but he is holding his feet in a poor position and you don't want the bones to form around that, or for range of motion to decrease, etc, etc, etc.

So, needless to say, Grayden has not worn the AFO's and as you can see from the above picture, he does not always hold his feet in the "best" position and I obsess a little about this. However, he has not lost any range of motion so I have continued to trust my instinct and have not put them on.  I really thought I was going to get an earful today and that I would have to explain my reasoning and justify why I chose this route; however, much to my surprise- I will quote the doctor today, "You went against the grain and the recommendation, however it seemed to have worked and I don't see any reason why Grayden should be in an AFO at this time. Keep doing what you have been doing. He looks great!!" 

Music to my ears. 

This does not mean that this will be the case always, but for now it is one less thing for me to have to constantly have to think about and question if we are doing the so call "right" thing. So I'll take it. 

In other news, can you believe that we are starting to plan a certain some one's ONE year party?  Crazy how time flies.

Who would have known a year ago...

It's been a year since Grayden and I were undergoing surgery to repair his lesion on his back.  Wow one year!  I can't believe it's already been a year.

A year ago as my mom, Austin, and I walked from the hotel down to The Children's Hospital of Philadelphia my mind was racing in a million different directions.  I was scared out of my mind, but also very thankful that we were allowed the opportunity to participate in a surgery that was opening the door to a possibility.  It was the most difficult decision that I have ever had to make in my lifetime thus far.  I was so worried about Zander at that time and remember him being my primary concern.  I was so concerned about what our life was going to be like and how all of this was going to impact his life.  As I was wheeled into the operating room I was so extremely sad for Zander, feeling like I was going to miss out on his life and worried his life was going to be consumed by Grayden and everything that came with him; and on the other hand I was feeling like we were doing the best thing possible for Grayden.  I was so torn.  I was so worried about being away from home, being away from my friends and family.  In a way I was being selfish because I kept thinking "this is going to ruin my summer".  I also worried about the extreme.  "What if we didn't make it through?, What if Grayden is faced with extreme prematurity and has to deal with that on top of SB?,"

A year later as I reflect back on what the year has brought to us.  I can tell you without a doubt that we made the best possible decision for our family.  Philadelphia and the surgery brought unexpected benefits.  We got to spend such quality one on one time with our closest friends and family.  I have always had a strong relationship with my parents; however if it is possible we became closer.  And as for Zander, he did not lack for attention and he was allowed experiences he would not have been otherwise.  He may not remember them, but we have vowed that we will travel to Philadelphia often so that he can grow to love the city that holds such a dear place in our hearts.  The summer of 2010 was one of the best summers of my life.  I can tell you that last year at this time, I would not have ever guessed I would be saying that.  Surgery was difficult, but I recovered well and fairly quickly and the bed rest that I thought would be unbearable was not as bad as I thought. 

I will always be forever grateful to all of the mothers who went before me on this journey to help me make my decision.  I can't say without a doubt that I would have made the same choice if we were #10 versus #175 in the study.  I will also always hold a dear place in my heart for the staff at CHOP and the care that we received there.  From the moment we walked through the doors until the minute we walked out with Grayden in our arms we received top notch care and always felt as if they were taking care of us as if we were their own family members.  One of the biggest differences we felt there was that they truly opened the door of possibility.  Even though, they had numerous families coming to them in the same situation with the same diagnosis we were treated as individuals and as if we were the only family they were working with at the time.  We never felt like we were placed in a box, the box of "L4 Spina Bifida diagnosis; therefore we do A, B, C." Grayden will write his own story of what he will do. This is Grayden's journey and I'm excited to travel it with him as he paves new paths. 


A little clip of Grayden "exploring". Of course, he will never show off all of his tricks when I get the camera out, but it shows you a little glimmer of how he is getting around these days.  He is rolling like crazy and starting to pull his knees up under him while he is on his tummy.

For those of you that missed this on facebook, Grayden discovers his waving hand.

Grayden truly brings us joy every minute of every day.  A year ago we wondered what our life would be like with him in it, a year later it is impossible to imagine what our life would be like without him!! 

Busy

We've been very busy this summer.  So busy that I have somehow misplaced my cord to transfer pictures from my camera.  I have been wanting to post; however I can't find the stinkin cord so I was trying to hold off, but I guess I will just have to post pics later.

At the end of June I decided to continue the training for the Anat Baniel Method and headed out to California with Grayden in tow, thanks to my moms generosity of being willing to tag along.  I had a great time, learned a lot and met some great people.  My mom and I were even able to explore San Francisco and the surrounding area.  We had a great time and I am overall very glad that I went.  Anat is brilliant and I love learning from her.  I swear I could listen to her for hours maybe days and never get bored.

Last week we had the opportunity to travel to Chicago to have Grayden work with an ABM therapist who works hand in hand with Anat and is also one of the trainers for the professional training program.  I feel like it was a great opportunity for Grayden, but I also have to say that she did very similar things with Grayden as his therapist here.  So mostly, for me it validated that we are working with an amazing therapist here who is allowing Grayden many possibilities. 

We spent the 4th of July holiday in the Upper Peninsula of Michigan at my dad and his wife Karen's cottage.  We had a great time and to top it off, Grayden began pulling himself forward while on his stomach (just a little bit, but I'm counting it!).  He is also very close to getting himself into a sitting position.  He is also constantly on the move, by rolling everywhere.  His first tooth is also poking through so it won't be long before its completely here.

Other than that, we have been busy enjoying our summer! I promise to post more pics and updates as soon as I find that cord!

If you have the time, please check out this post from another SB Mama.  It's a touching twist to a common poem in the "special needs world"

http://fourpotters.blogspot.com/2011/07/postcards-from-holland.html#comment-form

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:) )