Merry Christmas

MERRY CHRISTMAS FROM OUR FAMILY TO YOURS!!

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

Grayden is Three

Somehow overnight my baby turned three this week.  He has turned into such an adventurous, fun loving, silly, determined toddler.  Time really does fly by. Incredible how much I have learned and grown as a person in these last three years. Who knew such a small little guy could teach me such big life lessons? So thankful for this journey we are on and all the amazing people we have met because of it!

We spent Grayden's birthday at The University of Michigan at the Spina Bifida clinic. (I know,  mom of the year for scheduling appointments on your kids bday). I had been contemplating switching Gray's specialist to the U of M in hopes that they may be a little more progressive in their treatments and in their way of thinking. I was completely impressed with everyone we met and overall it was a great experience.  Lucky for us, the Urologist that we will be seeing, travels to Kalamazoo once a month so we will be able to see him there.   I definitely walked away feeling more understood and on the same page with the specialists we met there, so I am feeling very confident about our decision to switch.

Our family all chipped in and we bought Grayden a recumbent tag along bike for his birthday! It is awesome and I would highly recommend it. This will allow him to be a more active participant in family bike rides! We also were fortunate to get to buy one of our neighbors swing sets (considering we told Zander we would get him one for his birthday back in March). The boys have been having a blast playing on it together!

In other news, I have been running for the last eight weeks and will be running my first 5k since 8th grade this upcoming Saturday! I am excited and nervous all at the same time!

Don't forget The annual Stroll n' Roll is less than a month away. We would very much appreciate any support you would like to offer. We would love to have you join us as we walk with Grayden's Gang and continue to Redefine SB, or if you can't join us, any donation would also be very much appreciated. 

We would also like to invite any of Grayden's Gang to join us at our place following the walk for some football and food! Please let us know if you plan to come, either by phone, email or Facebook!

Who wouldn't want to come and have this much fun?? 

Calling all Grayden's Gang!

It's that time of year again! This year the West Michigan Spina Bifida Organization's annual Stroll n Roll will be held at The Frederick Meijer Gardens on October 19th. We would love for you to join us and walk in support of Grayden and all of his buddies as we raise awareness and continue to redefine Spina Bifida!

This past year Grayden was a scholarship recipient and received a 1000 dollar scholarship to be used towards our Anat Baniel Method lessons with the amazing Ms. Rene! The money raised by the Stroll n Roll is what made that possible.  There were also 9 other scholarships awarded to other kiddos who have Spina Bifida this year!

If you would like to join us for the walk and would like to purchase a Grayden's Gang shirt, please let me know no later than September 30. You can email me at kellygoff06@gmail.com or comment below. We would love for you to join us for the walk, but if you are unable to walk with us and would like to show your support you can donate to our team by clicking the we pay link at the top of my blog. Any amount helps!

The following link is the official link for the walk, which contains more specific details!

http://www.wmspinabifida.org/strollnroll/Home.html

You do not need to register, because I have registered our team just let me know if you plan to walk as I will need a final count for our team since lunch is provided following the walk.

We look forward to seeing you all on October 19th!

Forth of July Week

We spent a week in the UP again for the week of the Fourth of July. We had a great time enjoying family time and spending time outside relaxing, fishing, swimming, and taking boat rides. I just love to watch the boys and all of their excitement. I wish I could capture it in a jar and have it forever. They constantly remind me to appreciate the little things!

Kayaking with Papa Jack

Practicing casting their new fishing poles

Casting with papa and Uncle Kevin

Swinging in the hammock chair

Family time

Music in the park

Pedi and Mani

We hope you are all having a great summer! 

30 Month Visit to CHOP

We returned to Philadelphia last week for Grayden's 30 month follow up as part of  the MOMS Study. It feels like just yesterday that we began this journey, yet it seems like a lifetime ago that our lives were forever changed.  What an experience it has been so far!

We left on Easter Sunday on our first family road trip outside of Michigan.  We made a stop in Pittsburg to stay for one night to break up the drive and then headed on to Philadelphia Monday.  We were so excited to be back in one of our favorite cities that we now consider our home away from home.

We spent the first night walking through the Campus at UPenn and then hit up our favorite restaurant for dinner.

Tuesday and Wednesday were busy days filled with appointments.  Tuesday, we spent the morning with a GI doctor (who we had requested to see) to discuss bowel management for the future.  I don't want to share too many details on here (for Grayden's sake when he is older), but this is our biggest area of concern/frustration for the future.  We are still exploring our options and gathering as much information as we can.  We left the appointment with a plan, but are now second guessing that plan.  We would like to try options that include as little medication to no medication first if possible, just not sure how this is all going to work.  So frustrating to say the least!

Tuesday afternoon, Grayden had an ultrasound of his kidneys and bladder and then a  physical exam and developmental testing by a pediatrician   Austin and I also had to fill out questionnaires and answers lots of questions about us and our family. During the testing for the study, the examiners don't really report much of what they are seeing or observing.  We are allowed to ask questions, but they don't give us scores.  They are also not allowed to know what part of the study we were in or where the location of Grayden's lesion. Even though we weren't told a lot during the testing it was still fun to watch Grayden interacting with all of the professionals and to hear the little comments that they did make about his movement and language!

Tuesday evening, we rode the Subway downtown and spent time at a local park that we frequented while we were there three years ago.  It was so much fun to watch the boys play. During the summer of 2010, Zander and I spent a lot of time at that park.  Much of that time for me was spent sitting in the wheelchair watching Zander play, and wondering what our lives would look like in the future.  I don't think I could have painted a better picture then watching my boys playing on that playground together. We are happy, life is for the most part "normal", and those boys bring us so much joy.  If I had only known back then...

Wednesday, Grayden and I returned to the hospital for more appointments, while Zander and Daddy had a special day in the city.  They went to Smith's Free Playplace in the morning and then walked around downtown in the afternoon.  Grayden had developmental testing all morning.  It was exhausting  but very fun to watch.  By the end, I thought he might fall asleep because he was answering questions with his head on the table.  He got a little slap happy towards the end as well, and started saying some pretty silly answers to the questions he was being asked. Just a tad frustrating for me, because he wasn't answering some of the questions that I knew he was capable of, but I couldn't really blame him after 3 hours of testing!

The afternoon, was spent with the Urologist, Dr. Carr doing Urodynamics testing. Grayden was cracking me up during the tests because while he was being cathed he told the doctor multiple times, "I don't want that decoration on my penis.".  Grayden continues to have healthy kidneys and his bladder looks good as well.  This is another area that a game plan has been started, but we will continue to work out the details as Grayden gets older.

We had the opportunity to meet another family who had fetal surgery while we were there, who had their beautiful baby girl on Monday. It is always fun to meet other people who are on this same journey.  We also had the chance to see the doctor who delivered Grayden as well as some of the other professionals that we had the opportunity to work with.  And as always, it is so nice to see Jamie, the study coordinator who is pretty much extended family!

Thusday was a day just for our family.  We started the morning at the Market for breakfast and then rode the city bus to the Please Touch Museum. The boys had a blast!

Friday, we woke up super early to travel to New York City to see an orthopedic doctor, who is highly recommended by our ABM team.  I'm going to save a whole post for our visit so stay tuned!!

The MOMS study received a second grant to follow up with the participants between the ages of 5 and 8, so we will again be traveling back to Philadelphia in the future and we can't wait!!

And lastly, check out this boy doing the stairs at the park!