19 months

It's a wonderful thing having family through the good and the bad. Sometimes I have to remind myself that I'm not as alone as I feel. My family loves Carson more then I ever thought possible. They suffer through the hard stuff that Spina Bifida brings, and they celebrate all the victories Carson achieves. When I feel overwhelmed my family pulls through for me. My sister-in-law, Cori, made this adorable video of Carson at the cottage. I showed it to him today and he loved it so much we had to watch it 5 times in a row :) When I aksed him, "where's Carson?" He pointed to the screen. He always loves to be the star!

Hope you enjoy it

Parks and Friends

If Carson could live at the park I'm pretty sure he would. He would sleep in the tunnels at night and then spend the day climbing the steps and going down the slide "Carson style"- headfirst, fearless. Lately we have been going to the park almost daily. Here's a photo of our recent play date with Carson's friends who have Spina Bifida. Pictured above is Emileigh, Greyson, Whitney, Carson, and Noah. I am so thankful for all the friends God has blessed Carson with. Not only does he have tons of friends in his age group, but a pretty good size group of kids with SB as well. It's amazing and inspiring seeing these kids progress. I just love them!


The highlight of the park is always snack time of course. Greyson is always willing to demonstrate his love for Carson :) Hugging, petting, and even sharing his pretzels.


Tunnel Hog


I have to admit, when we arrive at the park I always hope it's empty. It's tough watching all the other kids his age running circles around him. But then I continue to realize that Carson doesn't mind, he just enjoys himself because he is focusing on what matters: he CAN enjoy the playground. In fact, he is able to do everything he wants. At the playground he isn't limited at all he just gets around a little differently or might need some help here or there. I am so proud of my brave little guy!

17 months

It has been awhile since my last post! I am eager to share that our fundraiser last month was a big success! It was incredible to see all the support out there for Carson, Greyson, and others in West Michigan with SB. Thank you to everyone who came and contributed!
Not much is going on to update, but here's a few positive things that have been happening in our lives:

-We are attending a SB conference in Cincinnati! We're going with our friends, Leigh and Andy (Greyson's parents)
-Carson is starting to crawl with extended arms- his current record is 15 feet. We call it his "big boy crawl" and he is very excited to show it off!
-I joined the board for the West Michigan SB Assoc.
-Carson will be 18 months in July!
-Carson will have an eye corrective surgery at the end of the summer. This is a minor surgery with major results!
-Carson can cruise down furniture and chooses to travel this way even though it is slower than his crawling! (great choice, carson!)

Thanks for checking in on us!

Are you good at eating?

My relatives have always taken pride in our family's outstanding ability to eat. Not only do I have amazing cooks in my family, but also amazing eaters. In fact, one of my grandma's frequent questions includes, "Is he a good eater?" This questions applies to new cousin's boyfriends or new babies. Although my sweet tooth gets me in trouble from time to time (or like everyday) I have learned to appreciate and savor good food. Some may think it's ridiculous to have at least 3 different types of meat at a family holiday, or it may seem silly to some how my family loves to explain in great detail what they ordered at a restaurant the other night, but for my family it's a way that we appreciate the good stuff in life- or savoring the details.
So where am I going with all this? I know many others are blessed (or cursed) with the love for food. And if your looking to eat for a good cause than join us at Vitale's in Ada. It's easy- order food and a portion of your bill goes to our local Spina Bifida support group.
Throughout the past year of Carson's life I have had the privilege of meeting some pretty amazing moms who have dedicated every last ounce of energy to enriching their child's life who is challenged by spina bifida. I am so proud of all the hard work these family's endure. These women have inspired me in so many ways. They help keep me focused on what's important and keep me positive when times get tough. God has blessed me with an amazing community and I am so proud be a part of this group!
Please mark May 18 in your calanders and join us for a memorable night!

Our first family trip

Several weeks ago we returned from our first family trip. We spent 9 marvelous days in Naples, Florida! Packing for such a trip was a nightmare. Our baggage included carson's suitcase, our suitcase, a stroller, a car seat, a walker (one we received the day before our trip that I could not part with!), and one giant diaper bag. We were quite nervous about the flight not knowing how Carson would react to the pressure changes and the long day flying brings. To our surprise he did great! His ears never bothered him, and he loved being surrounded by new people on the planes. I was incredibly grateful not having to be the annoying family with the screaming baby (which, for the record, I do not view as annoying anymore, but instead just feelings of strong sympathy)!
We had a wonderful time in Florida escaping cold Michigan weather, doctors appointments, and other distractions. It was great just being with the family and enjoying ourselves.
Upon our return it was back to reality! The next day we started another intensive session at the Conductive Learning Center (2 hours every morning thru march). It has been going very well. We get lots of attention because there's only one other kid in the class; Greyson of course. It's fun to see the boys beginning to interact even if it is hair-pulling and toy-stealing :)

Haircut blues

Another milestone achieved recently: Carson's first haircut. Everyone seemed ready and eager for his new hair do except for Carson and I! I actually kind of liked how he had the funniest hair around. It kind of went with his personality somehow. I'm trying to get used to his new hair cut, and I have to admit that he looks adorable still, but part of me still misses his funny baby hair :)
Obviously as you can see, the haircut experience did not go well. Every tool was way too loud for Carson and loud + Carson= disaster! Even the toy dispenser at the end of the appointment was incredibly loud, poor guy!
Currently Carson's miserable state has continued as he fights off his first sickness. Last Monday he caught a stomach bug and by mid week we were all pretty sick. I think we're finally starting to see the end of it. At first it was pretty scary because when your child has SB and is vomiting you immediately start considering neurological causes or UTI's. Although it was pretty miserable having the whole family sick it did help reassure us that Carson was experiencing a "normal virus." So we are quite thankful!
Also important to note are some very special birthdays this weekend: Greyson Gibbs and the Baar twins! We are so thankful for our friends and their growing families and all the continued support!

neurologists and neurosurgeons

Lately it seems that the more doctor visits we have the more confusion we gain. It's funny because you'd think that more doctors= more clarity, but unfortunately the opposite is true in our case.
Carson's lack of upper body strength and his left-arm preference has been our latest mystery for the past several months. After his MRI we visited with Carson's neurosurgeon to discuss these symptoms. He felt that although Carson has a chairi, syrinx, and tethered cord, none of these issues should be causing the problems according to the MRI. The following day we met with our newest specialist, a neurologist. We were relieved to hear that he felt Carson had no additional neurological problems to diagnosis. Instead he disagreed with our neurosurgeon; he believes that Carson's issues are a result of the chiari, syrinx, and tethered cord.
We have decided to get another perspective on the matter from another neurosurgeon but who knows how far that will get us? Is this the beginning of going in circles?
Perhaps I should translate some of this; sometimes I forget that not everyone speaks "spina bifida" :) SB typically affects more than just your legs or your ability to walk. Because of the initial lesion in the spine it can affect multiple areas of your anatomy. The chiari (which controls your fine motor skills) is located at the back of your brain and is connected to your brain stem. Carson has a chiari II malformation which I believe is caused by the spinal cord "pulling" on it. The chiari can cause problems or become "symptomatic" when theres not enough room in the skull for it. A decompression surgery is performed when a neurosurgeon determines that it is symptomatic and is suffering from lack of space.
A syrinx is hydrocephalus(increased fluid) of the spine. Carson has a syrinx near his neck. His neurosurgeon will monitor the size of the syrinx by doing routine MRI's. If the syrinx grows it means another surgery. Typically either an operation directly on the syrinx or a shunt.
A tethered cord typicaly happens at the site of the initial lesion. It is the build up of scar tissue adhering to the spine. Among the symptoms are changes in the person's physical abilities. The solution is a surgery to release the tethering. Unfortunately this can become a "maintenance" thing because more surgery= more tethering which means more surgery and so on.
Obviously the decision to operate is not taken lightly. Since Carson is not experiencing symptoms that are putting his life in danger it may not mean that surgery is the right choice. Hopefully our next doctors visit will mean more clarity and above all more peace with the decisions we are faced with.
On a happier note, Carson transitioned himself from the floor into a sitting position for the first time several days ago! He is also enjoying some of the new things were learning at therapy. Lately he has learned to climb onto higher surfaces like a step, pillow, low toy, or a lazy grandpa laying on the ground :)He has become quite ambitious with this new skill. Sometimes I catch him trying to climb onto his floor heater which is about 18" off the ground. It's funny to see him eyeing objects determining if he can conquer them! I don't think I'll ever relate to the mothers who complain that they spend their days chasing their toddler around the house trying to keep them from climbing things and getting into stuff their not supposed to. I cannot wait to chase Carson!