Our Redirected Flight

Our Redirected Flight

Friday, October 9, 2015

Why now and why New York

When Grayden was around two months old it was recommended to us by the local physiatrist to have him wear AFOs to help bring his feet into a more neutral position. At the time he was presenting with extreme Dorsi-flexion (basically, it looked like the top of his feet were touching his shins). After receiving the AFOs we put them on him one, maybe two times. They were bulky on his feet and allowed very little movement of his legs because they seemed so heavy for his little legs. My gut told me that they weren't right for him so we never used them. A little while later we were introduced to the Anat Baniel Method where I learned a new perspective regarding braces. I also learned about Dr. Jordan.  Anat highly recommends Dr. Jordan because of his attention to the function of movement and his ability to provide braces that provide support where /when needed but not to "over brace".

We began sending videos of Grayden documenting how he moved to Dr Jordan so that he could help guide us regarding when/if bracing was necessary for Grayden. Each time we sent him videos he would carefully analyze them  by breaking them down frame by frame and would call/write to us to explain his thoughts.  We had yet to experience a doctor who so thoroughly examined Grayden's true functioning. The local doctors seemed to take a quick look at his outward appearances and his intoeing and based on a 5-10 minute exam, would make quick decisions that we felt were based on what they "typically do for kids with SB who present like Gray", rather than truly looking at his function. I remember once going to the local doctor in Grand Rapids at MFB and them asking to see how Grayden was walking. At the time, Grayden was using a push toy to help him walk and I had forgotten to bring it.  The doctor gave him a stool on wheels and asked him to walk, even after I said that it would not be a good representation of what he could do, nor did I believe it would give a clear idea of his function, but the doctor preceded and then based on what was observed there were recommendations made. It was recommended that Grayden wear AFOs (ankle foot orthoses) with a twister cable to help turn his feet out. We were told that by allowing him to walk the way he was that we were causing damage to him that would need to be surgically corrected later. We were told that he had tibial torsion that would need to be surgically coreccted by breaking his bones and turning them. Yet still, my instinct told me not to listen. When I asked to see research that supported the use of the twister cables, no one could produce any for me. All that I found in my own search were 2 outdated articles done in the 70s on kids who had CP. When we asked Dr Jordan for guidance he told us that he would absolutely recommend against the use of the cables because in fact they could cause harm to Grayden at the knee joint. He also said that they pull the leg outward but it is done passively and they don't help to teach the muscle anything. So, we filled the script and got the cables and AFOS from the local orthotist (for fear I would be turned into CPS if I didn't), but never actually had Gray use them. We also switched to new doctors in Ann Arbor who were more in line with us and our thinking and agreed with what we shared regarding Dr Jordan and his recommendations. 

We continued to send Dr Jordan videos every six to eight months and made our first trip to see him when Grayden was around 30 months on our way back from Philly. Dr Jordan spent three hours with us that day, closely observing Grayden's movements while he played between the waiting room and his office. Taking time to see him move in all different ways. He spent a lot of time talking to us and describing what he was observing.  Dr Jordan did not believe that Grayden had true tibial torsion and showed us exactly why not. He described in detail the ins and outs of how/why Grayden moves the way he does. We left that appointment with a recommendation to continue to allow Grayden to grow and develop without the use of braces and to continue to send video. So, that is what we did. We continued to allow Grayden to grow and learn meanwhile continuing with ABM lessons. And that he did! He has grown and he has changed! 

This summer we began talking more to Grayden about Spina Bifida to help give him an understanding about what that means for him and to give him the language to answer questions when people get curious. During our discussions he started asking us about bracing for his feet and if there was something we could get to help his legs turn straight. I contacted Dr. Jordan to let him know that Grayden was asking and to see if he felt it was time for another in person evaluation. He agreed that it may be time to see him again so we called and scheduled.

So, here we are today with our first true set of AFOs and elastic straps. So, why now you may be wondering? What makes him "ready" now? And so here is my attempt to explain the brilliant mind that is Dr. Jordan and what he explained to us.  I should also add, another really great thing about Dr Jordan is that he does not just recommend braces and send a script to another office to fill, he works very closely with his orthotist in his very own office to design and create them and is there when you pick them up to ensure they look and fit the way that he envisioned. 

So here is my attempt at explaining and summarizing, although there is a lot more detail to it.....(you would think bc I'm an OT that I would totally grasp all of this....I'm forever a student:))

Both the hamstrings and the glutes extend the hip and bring it forward. The hamstrings extend and internally rotate and the glutes extend and externally rotate the hip. We will use the elastic straps as a sensory component to help encourage Grayden to activate his glutes instead of using his hamstrings so much. We are not trying to force the muscles out, rather the straps will put tension on the muscles that internally rotate to say "slow it down, okay, you've got this other muscle, now use it". Around the age of 5-6 the spinal cord matures and the last bit of peripheral fibers are sent to the glutes, so if we would have tried this when he was three it may have looked good but there would have been little benefit because he would not have had the nerve supply needed to that muscle. So again, the straps will help provide a Sensory feedback, they will not force, but rather create stability and resistance to slow the movement down to illicit the use of the glutes. The AFO will provide a better landing for when he steps. Kids can still work around the straps so we don't know what Grayden will do with them. Only time will tell. 

On the first trial in the office, Grayden did not like the straps and AFOs. It is a new variation of movement that he is not used to. Dr Jordan said it will be like stepping off a boat when he takes them off or puts them on. He will have to readjust to the feeling of how to move. The elastics will be used as a training tool and are not meant to be worn all of the time. Wish us luck as we figure out how and when to use them and as we encourage Grayden to explore this new variation! 

Tuesday, July 14, 2015

Five year ago....

When I was given the go ahead to eat following my fetal surgery five years ago, my mom, Austin and I ordered Chinese take out.  I still don't really believe it, but this is the fortune that I received in my fortune cookie that night.

So tomorrow I will celebrate Grayden's fifth "butt day".  But what  I will be celebrating are the incredible doctors and individuals who were willing to think outside the box and take the risk to try something unheard of. I will celebrate because there are doctors/people out there that are striving to make a difference in the lives of people like Grayden.  People and doctors who believe Grayden and the many other people living with Spina Bifida are worth it!!  Tonight as I reflect on the opportunity we were given I am incredibly thankful, but what I know now is that Grayden would be incredible fetal surgery or not.

Thank you to all of you who supported us during this time 5 years ago and those of you who continue to cheer us on as we travel this journey.  We are blessed beyond belief to have some pretty amazing people in our lives!

Sunday, September 14, 2014

Three Months

It's hard to believe that Kinsen is three months old already. He has definately been my baby that loves to be held. He is not yet on a consistent daytime schedule, but is my best night sleeper. He started sleeping for 8 hour stretches about a month ago! Kinsen is well loved by his older brothers and gets more smiley everyday! He fits our family so well and makes us feel so complete!

Thursday, June 19, 2014

Kinsen Wiley Goff

Kinsen Wiley Goff made his arrival into our family one week ago today on June 12, 2014 at 1:41pm.  He weighed 7 pounds 9 ounces.  He was born at one day shy of 38 weeks on the day of his scheduled delivery!  We were scheduled for a 3pm c-section; however the hospital called us around 11 and asked if we could arrive early because they were available sooner than expected.  I was pretty nervous about the c-section, but everything went well, and Dr. LaGrand said that my scars looked great.  We spent two nights at the hospital while my mom and Jeff took the older boys to their house.  We came home with Kinsen on Saturday and the boys joined us on Sunday.

I am loving every minute of this newborn stage and trying to soak it all in, as Kinsen will probably be our last baby.

As for the big brothers....

Zander had been looking forward to becoming a big brother for a second time since we told him we were having a baby.  He made the sweetest card for Kinsen to bring to the hospital and also one for Dr. LaGrand telling him thank you for taking such good care of us.  Zander had asked a lot of very specific questions about the birth throughout my pregnancy and the morning of, he told me at breakfast that he was worried about me.  He has such a sweet heart and is definitely the protector of both of his little brothers.  He tolerates and accommodates so much and sometimes I think even too much.  He has been so conscientious of Kinsen, trying to be super quiet if he is sleeping and letting me know as soon as he makes a peep that he needs me. 

Grayden has totally shocked me on how he has responded to Kinsen.  Prior to his birth he would tell everyone and anyone that he did not want a little brother and that I was not going to be allowed to hold Kinsen because I could only hold him.  I was very worried about how he was going to adjust to it all.  The few times we were around infants he acted horrible and didn't want me to even look at the babies.  To my surprise, Grayden has been great about Kinsen!  He was a little hesitant at the hospital to pay him too much attention and spent a lot of time by my side holding my hand and avoiding Kinsen all together, but since we have been home he has been so interested in him.  He is constantly wanting to kiss him and wanting to help with things.  He will also tell me the minute he makes a peep that I need to pick him up.  He is also full of questions about Kinsen.

I am loving our family of five!  This past week has been great.  My only wish is that both parents could take maternity leave because having Austin home this week has made the transition much easier.  I am not looking forward to him returning to work next week.

Sunday, May 11, 2014


99 percent of the time I do not even think about Spina Bifida.  It doesn't cross my mind and most days, parenting Grayden is no different than parenting Zander.  Don't get me wrong, parenting in general is hard and is definatly a learning curve, but the same things that I worry about for Zander, apply to Grayden.  But some days, out of nowhere the wind is taken out of our sails and we are forced to have to think about SB and decide how to navigate. We are forced to have to pull out our roadmaps, consult with our friends, and put on our advocate hats.  Friday was one of those days.

I have to start by saying that growing up, I was never good with things not being fair, mostly if it had to do with my sister. Maybe it was a second born thing, but I hated it when things didn't feel or seem fair.  I thought that I had gotten better with the whole idea of "sometimes life isn't fair", and that I had matured over the years, but now that something doesn't seem fair for my child, well it just plain sucks!

We are beginning to plan for next school year regarding who will be going to school where, and who will be watching Kinsen and when.  My mom is retiring and has offered to watch Kinsen and Gray two days a week, which means we need to find care for them the other three days a week.  One of our neighbors has offered to watch Kinsen and I was hoping to find a three day a week, all day preschool for Grayden (which is very difficult to find, as most preschools do not design their time around two working parents' schedules).  I found out yesterday that the preschool that Zander has been going to since January has openings now in their three day program, so I was relieved to think that we had found our solution, until I found out that they were not willing to accept Grayden, because he does not meet their requirement to be potty trained.  And to this I say "It's just not fair"! It's not fair that they can not allow him access to their program over something that he has no control over, something that we are working on, but is going to take time and problem solving.

So now I sit here trying to decide, do I fight and advocate or do I decide I don't want him there if they are not even willing to consider how they could accommodate for him?

The good news is, I love the childcare program at my school, where Grayden currently attends. His teachers are amazing and Grayden LOVES it there.  He can stay there until he goes to Kindergarten, but they don't do part time care (we would pay for full time, even if he only goes three days), and the majority of the kids are between 2 and 3 years old, so I was hoping to eventually give him a preschool type experience with older kids before he goes to Kindergarten.

I am mad, sad and frustrated! I am sad for Grayden that he doesn't have the same options as Zander did for preschool! I am mad that it feels like he is being discriminated against! And I am frustrated that to even possibly get him those opportunities that I will have to advocate and fight and spend extra time. Of course, I am willing to, and I would travel to the moon and back for my kids, but sometimes it is just plain exhausting to think about! And mostly, it just doesn't seem fair, and I am just not okay with that!

Monday, March 17, 2014

Grayden's Wheels

After 8 months of going back and forth with our insurance, we finally picked up Grayden's new wheels today! We are so excited!

Austin and I decided last summer that we would start the process of getting Grayden some wheels. After many chats with my great friends who share this journey with me, we decided to go forward sooner than later.

We want Grayden to view the chair as one option or variation for how he can navigate his world. We want him to view it as a positive option that allows him choices. Basically, we just want him to know that no matter how he chooses to get around, that we are completely okay with it. We envision that he may choose to use his wheels for long distances, keeping up with friends, and maybe even sports. Ultimately, Gray will figure it out as he goes with what works best for him.

Monday, December 23, 2013

Merry Christmas

Every year I tell myself that I am going to send out Christmas cards, but I never seem to be able to get them out.  I do really love receiving Cards and Christmas letters from all of our friends and family, so I thought I would do a close second and give a little blog update.
Grayden continues to amaze us every day.  He is still attending the child care program at my school and loving all of his friends and teachers there.  He also continues to work with Ms. Rene for his ABM lessons monthly. .Grayden lights up any room that he walks into and loves to be the center of attention.  He loves music and dancing and tagging along with his big brother Zander who he loves and adores. He is also showing us his strong independence as a three year old and his ability to test our patience daily:)  Grayden has some big changes this year, as he will be starting the new year without his brother in his classroom as well as becoming a Big Brother this summer!  We are also excited to watch him as he learns to downhill ski with his Papa Jack and Gma Karen this winter. 

I can't believe that Zander is almost five years old!!  He continues to grow into a compassionate boy with the biggest heart I know.  He is such a loving big brother to Grayden and he is so excited to have another baby in the family!  Zander really enjoyed our pool this summer and playing with the neighborhood kids.  He has also really loved anything having to do with writing or art lately.  He has been really interested in learning to spell different names and words and it is so much fun to watch him as he learns. We have made the decision to switch him from my school childcare program to a preschool program in Hudsonville for the remainder of the year.  He is so excited to start school where the neighbor girls attend.  He has been going to speech therapy both at our local school as well as at a local outpatient center.  He is making great progress on some of his speech sounds and at his new school he will have the opportunity to work with the speech therapist there two times a week in addition to working with Ms. Juli (his other speech therapist).  

I had a great year in 2013.  Our new home has a pool, so Austin and I enjoyed hosting many get togethers this summer with friends and family.  It was so nice to basically vacation in our own backyard all summer!  We love our new neighborhood, but were a little sad when our closest neighbors moved at the end of the summer:( I continued with my Anat Baniel training and  will officially be done in early April of this year.  It has been an amazing learning experience these past three years, and I am looking so forward to sharing this work with other kids and their families in our area.  This January, the boys will be coming with me again to California with my mom, Robyn, and Jill.  It should be a great trip!  I am still loving my job at Ken-O-Sha and feel so very fortunate to have a career that I enjoy and where I have such great coworkers.  And lastly, I AM SO excited to meet our third little one!!  He or she will be arriving sometime in June of this year!!  

As for Austin, he continues to work for West Ottawa Public schools as the assistant food director.  He continues to learn about the job and we were lucky to go with him this summer on a family trip to Kansas City while he attended a school nutrition conference.  We had a great time exploring a new city, and going to places like Legoland, the Aquarium, and a Tigers vs. Royals baseball game.  He too, enjoyed hanging by the pool this summer and entertaining. He continues to be the chef for our family and has recently been creating and brewing his own beer. 

We wish all of you the happiest
of Holidays and a great NEW YEAR!!  
With Love,
Austin, Kelly, Zander and Grayden