This weekend was the second annual Stroll N' Roll for the West Michigan Spina Bifida Organization. Grayden's Gang was represented by 33 members! Can you believe that? We are constantly amazed at the outpouring of support for our family. WE are forever thankful that Grayden is surrounded by so many amazing people who never cease to show their support for him! Thanks again for all of you who walked and/or donated to our team! The organization as a whole raised over $18,000!! Just INCREDIBLE!! Thanks Leigh and Emily for putting on another great event!!
I gave Grayden the option of riding in his stroller or walking with his push toy and he was pretty insistent that he was going to walk. He had so much fun walking with all of his friends and supporters!
Grayden's cousin Chase is one of his biggest fans!!
It is that time of year again and we are gearing up for the 2nd annual Stroll N' Roll to support the West Michigan Spina Bifida Organization. We are excited that this year the walk falls on the weekend following Grayden's birthday. So this means, not only will we be celebrating Grayden and all the ways that he continues to redefine Spina Bifida, but we also get to celebrate with all of his buddies and the amazing community that we have become a part of. We would like to invite you to help support us by walking with us on September 22nd or by making a donation to support our team, "Grayden's Gang". You can make a donation by clicking on the link at the top of the blog under "we pay" that will go directly to support Grayden and our team. The money that is raised during this event is used locally to support individuals and their families living with Spina Bifida. It provides opportunities for kids to attend camps, helps pay for therapy expenses, as well as conference experiences for families. I was able to attend the National Spina Bifida Conference this year with the help of a scholarship from the organization, thanks to many of you who donated during our walk last year.
I just returned tonight from the National SBA conference in Indianapolis, Indiana. To all of you who donated money to Grayden's Stroll n Roll, I want to thank you again because my trip to this conference was covered by our local SB organization thanks to your generous donations!!
It was a great opportunity to learn more about the issues related to Spina Bifida and ways that we can prepare and help. I must say, some of the information is hard to hear. I just don't want to go there yet. I tried to only go to the sessions that may impact Grayden's care right now or only 1 to 2 years out, but even that was a little overwhelming. My biggest struggle is all of the information regarding bowel and bladder function. I know that no matter what the case we will deal with it and carry on, but it is just the most difficult information for me to take in and digest.
Luckily, I have some great Mamas on my team. I seriously do not know what I would do without these ladies. They have become some of my dearest friends. I know it sounds like I am writing a love note, but I can't imagine traveling this journey without them. Thank you mamas for being there for me and just "getting" it. I look forward to our kiddos growing old together!!
Grayden loves books and he loves to be read to. Lately his favorite book is, If You See a Kitten, and anytime he sees it he will ask to read it by saying "cat". I love to listen to him participate and I'm pretty sure I could read it 100 times in a row to him just so I can hear his little voice!
I hope it is always this way. I have to admit, when we first found out that Gray was a boy, I was a little bummed that I wasn't having a little girl, but I can't tell you how grateful I am for my two boys now. My biggest wish and hope is that they will always look out for each other and be buddies!
I love these little moments!
Grayden has a constant desire to head for the street every time we are outside, and Zander has taken it upon himself to make sure he doesn't go in the road, "because it's not safe".
We enjoyed our Easter weekend with our traditional trip to Kinde, to visit The Wileys! We always look so forward to spending the weekend with my Grandma, Aunt Helen, Uncle Kevin, and their daughters, Emily, Trudy, Grace, and Lucy. My mom and Jeff also came, as well as my sister and family.
This year we started a new tradition and attended an Easter Egg hunt in Port Austin.
We also always go bowling while we are there and this time Zander was able to join us as he is officially three and old enough. I think he's hooked on our traditional bowling outing!
We had a great weekend with the family! We are so lucky to have them all in our lives!!!
This is what I am reading right now!! I have not completed it yet, but I just wanted to share my excitement with all of you about this book and about Anat Baniel's work in general. Have I shared yet, that I am so, so, thankful that my life collided me with Anat's work and that we were given the opportunity to work with an amazing and caring individual who practices her work.
If you know someone with special needs or if you are someone who works with individuals with special needs I highly recommend this book (and this work)!
I feel like I could write a whole chapter myself on the ways this work has changed my life, but I thought I would share some other amazing blog posts about ABM instead. Go check them out and see what other parents are saying.
I have so much to update you on, but I wanted to share pictures and videos from our afternoon at the beach. It has been CRAZY warm here in Michigan for March. We went to the beach in Holland as soon as we got out of work. We had such a great time. Both boys love the beach, but they could not be more opposite in the way that they play. Zander loves to stay clean. He is a "neat" sand player (if that is possible). Grayden is the COMPLETE opposite, the MESSIER the better. Tonight at the beach he was cracking us up. He kept crawling backwards, like he was going down the steps, to get himself into the water. He loved it!! He even showed off his bear crawling skills for the camera. What a great day at the beach!!
Lastly, I will leave you with a little sneak peak of what Grayden has been up to lately! Blog post to follow!!
This boy is determined! Today we were playing and I looked over and Grayden was standing next to one of his ride on toys pushing it! He was taking little side steps out of the bedroom! I very quickly went and got my phone so I could capture it on video and share it with all of you! What a great way to end a long and busy week!
One year! To say that I have not thought about the shunt in the last year would be a HUGE lie. In fact I have thought about it a TON in the last year. It is probably one of the biggest things that I have beaten myself up about. Throughout the last year, I thought about that darn thing so often. I wished that we would have taken Grayden to Boston to have a different procedure performed (ETV), which has a decreased chance of failing at some time in the future. It has been very hard for me to get over the fact that I did not push harder and explore further and ask more questions. As a mom over the past year I have had feelings as though I somehow failed Grayden, and that I didn't do enough. I trusted what I was told by our "small" town Grand Rapids neurosurgeon.
But you know what, with the help of my good friends in my mommy group who I have vented to over and over again (thanks ladies) I have come to realize many things recently. I did what I thought was best at the time based on the information I was given. That little tube saved my little guys life. I think that I can finally say, after a year that I have finally come to terms with it. I am not going to focus my attention on it anymore. Who knows, maybe Grayden will be one of the lucky ones and have few issues with it. You just never know. And what I can say is that I am thankful that the shunt was placed without incidence and that it was an available option for treatment of Grayden's hydrocephalus. 50 years ago we would not have had that option. My great Aunt did not have that option when her child was born with Spina Bifida. So I will forever be appreciative that there are medical options available and that the medical community is ever evolving.
Today we celebrated! We celebrated because with the help of the shunt, Grayden is doing amazingly well and for that we will forever be thankfull!!!
A year ago today we were being sent home from the hospital after preparing for shunt surgery because Grayden had a fever. Today we were back at the hospital for Grayden's third surgery; a hydrocele repair. We had originally noticed that he had a hydrocele in October and were scheduled for surgery then; however Austin and I decided to cancel that surgery because he had been symptom free since we initially had taken him in. Starting in December his symptoms began to reappear and we knew that the surgery would need to be done. I took him in to see his urologist in early January and we scheduled surgery for March 12th, but were placed on the cancellation list. Last Monday, his symptoms seemed to be getting worse so I called to see if there had been any cancellations and to basically beg for them to bump us up, and just our luck there happened to be a cancellation for today.
Grayden tolerated the surgery well and everything went as planned. He was very tired all day today, but very tolerant of all the poking and prodding. He is now home sleeping soundly in his bed! I enjoyed all the cuddle time I got to have today, however I'm hoping this is not an annual occasion for us!!
So Grayden has officially been crawling on his hands and knees since December 10th, 2011!! I guess I am a little late on blogging it, but I figured I would share some of the details. Better late than never.
As you may know Grayden has been receiving his intervention from a PT who practices the Anat Baniel Method. During a therapy session on December 10th, Renae, Grayden's therapist had Grayden in a semi-hands/knee position and she was "rocking" his hips (pelvis) from side to side (simplistic explanation). She then took her hands away and Grayden briefly paused and then it became really clear to me at that moment that Grayden's "learning switch" was on. He got really still and his eyes started looking back and forth and then he started "playing" with the movement that Renae had just introduced. I know this may not make sense to those of you who may not be familiar with this work, but I just wanted to share. In that moment I could tell that Grayden was making connections. I actually almost started crying because it was such a neat experience to witness. To see his little wheels spinning and to see him connecting his movement with his brain. This work is amazing, incredible, etc, etc.... I cannot describe to you in words how grateful that I am that we were lead to this work! Anyways, that night when we got home, he briefly crawled forward. From then on he has been unstoppable!!
So now that I have rambled and probably made no sense at all I will leave you with some footage of the "new moves". So TAKE THAT spina bifida!!!!!
PS-don't mind the onesie, we were in the process of getting Jammies on:)
I am a mom to an amazing little guy who brightens my day and a wife to the best husband I could have ever asked for. We are expecting another baby boy, Grayden in the fall of 2010 and recently found out that he has Spina Bifida. Since that time we decided to participate in the MOMS trial and undergo prenatal surgery to repair the lesion on his back. This is our journey as we experience the joys of becoming and being parents to two little boys.