First Steps

Lately Carson has developed a strong desire to be on his feet more. More than ever he is cruising along furniture to get to his destination instead of dropping to the floor to crawl there. One of his favorite activities is walking back and forth from the couch to me, or between Nate and I. Currently he uses his sticks (fore-arm crutches) to get around and he is doing very well with them. Obviously these primitive steps are just the beginning. We hope that with his determination and hard work he will be able to turn these steps into walking independently. Regardless, we are so proud of him!

Big boy bed... sort of

Last night Carson slept in his new "big boy bed." Nate and I have been meaning to transform his crib into the toddler stage for quite some time. I found a toddler guard rail online (way cheaper than the wooden version you can buy for this crib) and finally the make-over was finished :) Carson couldn't be happier! Of course, as you can see, he still has his be-loved bumper which he snuggles up to every night, and also his peep (pacifier), so clearly we are making baby steps.

Carson is very proud of his new independence.

He can climb into his bed on his own!

He can also get down on his own, an ability we will never take for granted.

In this photo he has just slid down from his bed and is beginning to take steps towards me, another new thing he is doing! It's more like hurling himself forward while moving his feet rapidly but it is very exciting to see him venturing into it. He has always been pretty cautious so it's incredible to see him trying to take steps even though it usually results in falling at the end. It's a big step for him to let go of his surrounding supports (furniture, people, or his crutches), so we are so proud of him for trying!

Happy Thanksgiving!

It's a little late for a Thanksgiving post, but I just wanted to update that last week we left Carson's Ophthalmologist with yet another new prescription because his vision keeps improving! So thankful!

The Perfect Costume

It has been pretty busy lately! It's already mid November and I'm finally posting Halloween pics! October was a crazy month for us. Carson completed another intensive therapy session at 1 Plus 1 Therapy. Many of you know the intensive session routine: wake up, go to therapy, go home and collapse, go to bed, repeat. We did this every day for 3 weeks and although it was a tiring schedule it was also amazing. Carson always makes such great progress during these sessions and it's so fun to see him gain more strength, ability, and confidence throughout this time. Anyway, it was actually quite a miracle that Carson had a costume for Halloween. We were able to squeeze in a shopping trip to Target and thankfully they had the perfect costume... Elmo, of course.

Carson was very proud of his Elmo costume. Elmo is pretty much his hero (Although Thomas the Train is gaining popularity with him again).

We even had an Elmo pumpkin.

Carson Trick or Treated around our block riding in his wagon. He even used his "sticks" to walk to some of the houses to say, "Candy!" ("Trick or Treat" never really took off, although he did say "Thank you" at least.)

At one point Carson got confused and started handing out his own candy to nearby trick or treaters. So cute:)

Here's a few photos of Carson at 1 Plus 1 Therapy. Bubble time is his absolute favorite. Here's a picture of him mastering 1 stick like a pro! At this point he is learning to stand with the support of only one stick while he uses his other hand to pop bubbles. His balance is getting so much better and he's pretty comfortable and confident standing this way.

In this photo (above) Carson is playing with a marble toy. His only support is the thin, red rope which actually moves about 4" either direction. In other words, he's learning to maintain his balance while standing. Just a few short months ago he was using his walker to stand which is very stable and now he can stand while holding onto a wobbly rope. Great progress!

Carson's walker has been sitting in his closet now for about 3 weeks. We have officially and completely transitioned to the sticks. It's still a bit awkward for him and at this point he's a little slower using the sticks compared to the walker. He also falls once in a while which is quite a dramatic scene. Yet, these are the necessary challenges in order to progress. The sticks have significantly less support than his walker which means that he has to work harder to balance and stabilize on his own which is a good thing.

Thankfully Carson has actually enjoyed all these transitions. Every morning when he woke up he was so excited to go to therapy and he has never asked for his walker back. He's a pretty easy going little guy... we'll see how long this lasts!

Stroll N Roll, the results!

Oct 15th started out as a windy, cold day. Actually, "windy" is a huge understatement. It was strong, pounding, mean, wind. And it wasn't just gusty, it was constant fan on level 3 crazy wind. Leigh and I showed up at the park to begin setting up with our volunteers (let me just say, we had the best volunteers ever! You'd think that by how great they were we we're paying them tons of money, but nope, they we're just awesome for free!) anyway, it was so windy that we pretty much had to do "plan b" for everything! None of our signs stayed up without excessive amounts of ugly duck tape which was very discouraging to have to use. And our raffle items didn't even last a second on the table before blowing half way across the park. It's the sort of situation where you just want to either cry or laugh hysterically at the craziness of everything!

Somehow, with lots of help, we figured it out. This group was pretty hardcore and wasn't going to let a little (okay, a lot) of wind stop them. Despite the weather, we were able to do the walk, the raffle, and serve lunch at the end! We had over 20 teams signed up for the event and even though Leigh and I were so busy and only had time to say 2 words to a few people, it was awesome to see so many kids with spina bifida and their families and friends there to support them and our organization!

The families at the event just made me so proud! These families conquer so much on just a daily basis already. They worked so hard to raise money for the organization and then showed up in a wind storm to support individuals with spina bifida. I wish that I had more time to meet everyone there. These families are my new heroes!

I'm excited to announce that the Stroll N Roll event raised over $20,000! Isn't that incredible?! I'd also like to share that Carson's Crew raised just over $5,500! I am just blown away by the generosity of everyone. I can't tell you how blessed I felt every time I opened my mailbox to see another check waiting for us! Not because of the amount of money but because as the donations poured in I was reminded how many of you care about us and the things that are important to us. Many of you graciously tell me how you are inspired by Carson's life, but let me say also that it's because of your support, prayers, and encouragement that allow us and inspire us to hopefully make a difference.

At the risk of sounding like I'm giving an awards speech or something, I really do have to say:

Rollers and Strollers, you amaze me. Let me just say, that if you think kids with SB are determined and strong, you should meet their whole family.

Carson's Crew and Carson's Club, I have no idea what I would do without you. You guys have stuck with me through everything! No one has encouraged me more than you.

Carson's Crew supporters, your contributions are like fuel. Not only will they go along way within our organization, but they encourage and motivate me as an advocate for Carson. Your donations are such a blessing to my family and my community.

Leigh, did you know that you have turned me into the type of person who plans events? If it weren't for you, I would be too chicken to do this sort of thing. Your friendship has made me a better person!

The Stroll N Roll!

By now, you have probably heard of our upcoming event, the Stroll N Roll! Because of this event, my house has been in a complete state of chaos, the clutter and laundry are pilling up, and the little free time I have has been completely devoted to this event. My friend, Leigh, and I are planning the event and it has been tons of work but also tons of fun! And although my life has been extra busy because of this, more importantly, our local spina bifida association will be able to continue to serve west Michigan families.

Several years ago, I have had the privilege of meeting and connecting with other families affected by Spina Bifida. These families are strong, inspiring, and amazing. I am a better person for knowing these families and their incredible children.

The first family I connected with was during my pregnancy. Many of you know the story of how I came to know, Leigh (who was actually my neighbor!). Together, and scared to death, we somehow navigated through our complicated pregnancies and experienced the joy our miraculous little boys! Sometimes I just can't even believe how fortunate I am to be blessed with such a friend.

These past few years I have really begun to understand why "it takes a village to raise a child." The families I have befriended have become the most valuable resource when it comes to needing advice on Carson's care. It is because of these friendships that I am so proud to support the valuable work of the West Michigan Spina Bifida Association.

The event, the Stroll N Roll, is kind of like a walkathon where participants form teams to compete in raising the most money. My team is called, "Carson's Crew." And there's still time to donate!
Throughout the past few weeks I have been blown away by the generosity of my friends and family. For many of you, several years ago, you probably would have never imagined someday donating to a Spina Bifida organization, actually many of you probably would be saying "spina what?" Myself included. Then Carson was born and here we are. It has been amazing to see how God has opened my eyes to a new community that has blessed me so much and that I can hopefully contribute to. Thank you for joining me in supporting this work!

Proud Moments

Last weekend we had the amazing experience of watching Carson walk down the aisle for his uncle's wedding as the ring bearer! Leading up to the event we weren't sure what to expect. Carson is usually pretty social in big groups and parties but he also can be shy at times. The day before we practiced over and over again with toys at the end of the aisle for motivation. And once the big day came he did great! He loved it! As he walked down the aisle he paused to say "hi" to everyone and seemed to love the attention.

It was a proud moment for us. Obviously we we're very proud to see him walking down the aisle with his walker. The ability of walking the 20 feet was milestone he has worked very hard for. Even a year ago it would be hard for me to fathom him walking that distance in his walker. A year ago he was just starting to crawl. Even after his first birthday he was not yet sitting independently. Now here he is, age 2 1/2 and he is walking very well in his walker (and progressing to forearm crutches too).

And although the walking was a proud moment it wasn't the most significant for me. My child being able to walk is not what makes me proud. If he couldn't walk, I would be proud of him. I would be proud of him no matter what.

What struck me was how proud I was of who he is. His little personality. The way he loves to perform, show off, scrunch up his face when he smiles. The way he tells his story of personal triumph just by walking across the room.

Nearly 3 years ago when I found out about Carson's diagnosis during my pregnancy I had this sudden feeling that I no longer "knew" my baby. It's strange to explain, but I felt as if the baby I knew was suddenly gone and was replaced by someone else I didn't know at all. It was terrifying. I mourned the idea of the baby I thought I once had and tried to get used to a new idea of who my baby really was. It was such a scary time. Of course it was the same baby all along and I had to cling to my faith that God had a plan for him all along.

As I watched him walk down the aisle and throughout the rest of the day those memories came rushing back. How could he have ever felt like such a stranger to me? It was Carson all along and I'm so blessed it was.

Here's Carson and the flower girl making their entrance at the reception. How adorable is he?!

Cooling off with some lemonade

Family photo

Celebrating Crutches

Recently we finished our session at 1 Plus 1 Therapy and I couldn't be happier and prouder! As many of you know, when you find the right therapist for your child there is no feeling quite like it! It's like hitting a gold mine or winning the lottery. Not only does Carson love his therapist and the type of therapy, he is becoming more confident in his abilities and is physically progressing.

A few days ago, for the first time, he walked several feet on his own with his new forearm crutches. This is incredible progress considering that he only just started using the crutches 4 weeks ago!

It's extremely exciting to see Carson on the brink of a new milestone, and lately I'm trying my best to simply focus on the accomplishments instead of those darn phases of sadness. I celebrate seeing him take his first steps with his crutches but then moments later I'm sadly reminded that, for most kids, walking a few feet is effortless.

It's both exciting and tough. Sometimes you just cant control what your mind is going to conjure up. The negative thoughts have a way of creeping up. Sometimes I'll let the thoughts flow until I'm imagining him years later being left out of a game at school, being bullied because of his disability, or frustrated at his limitations. And at that point I realize I'm out of control!

Of course there are struggles ahead for Carson, but does it help to worry right now if he will have a date for his prom someday?

Having a child with spina bifida (and simply just becoming a mother) has created more worrying for me. But at the same time it has also taught me to be thankful. You have to learn to be thankful understanding that it's a choice or a state of mind. I'll probably always struggle with negative thoughts and worry, but whether I dwell on it or whether it's just a fleeting thought depends on me. Every day I have to make that choice. Will I let my mind become preoccupied with negativity or will I celebrate all the amazing abilities Carson does have? I'm constantly reminded that there are many things that are out of my control and thankfully in God's hands.

Over the past 2 years God has blessed us with lots of celebrations and so much to be thankful for! All of Carson's capabilities are a gift from God. And although the spina bifida diagnosis will continue to be challenging, today we are celebrating Carson just as he is.

New Therapy for Carson!

It has been a busy July for us! Last week we finished our first full week of therapy at 1 Plus 1 Therapy. Our session will continue every day for four weeks. It is a big commitment and investment but it's going really well! 1 Plus 1 Therapy is different from any therapy we have ever tried. One of the unique aspects of his therapy includes a spider cage which utilizes a harness and bungees to help isolate and strengthen targeted muscles. It's a great approach for spina bifida because like others Carson has very specific weak muscles and some stronger ones too. With the spider cage he gets a very customized "work out" for his own needs. It has been quite exciting because we have switched from using his canes at therapy instead of his walker! We still have a long way to go before he's using his canes independently but it's exciting to see his progress even throughout this short time frame. I am so proud of him!

Here's Carson using his canes! (He's still wearing the harness from the spider cage) Impressively, even during the first week, he was already alternating the correct cane with the opposite foot! That's a lot of coordination for a 2 year old!

Here he is in the spider cage kicking a ball! At this point he hasn't figured out that the "fun" is actually disguised as hard work! Activities like kicking the ball helps isolate targeted muscles to help increase strength.

Yup, treadmills come this size!

Carson's favorite activity: jumping! I actually had to control my emotions the first time I saw him able to jump. The look on his face was sheer joy!

Carson is working on strengthening his ankles by standing on a wobbly surface while trying to "center" his body.

"Yum, pop!"

Every time Carson enters a new age range, I find myself saying, "I love this age!" And although I sometimes miss the newborn and baby months, it seems that each stage is even more fun than the last!

Currently, Carson seems to have entered a very chatty stage. He loves to talk and express himself! Each day I am amazed at how much he has progressed verbally. It's so fun to hear actual sentences start to form! Every meal time we let Carson pray and it has been quite funny. Here's his typical prayer:

me: "Dear God, thank you for..."

Carson: "Nana!" (grandma)

me: "and..."

Carson: "Yay-you (thank you) for Topham hatt's piggy-toes!

Yay-you for Nana's piggy toes!

Yay-you for my outside!"

me: "and..." (pointing to his plate)

Carson: "Yay-you for my food!"

me: "for Jesus' sake..."

Carson: "Amen!"

Here's our conversation today at lunch after I gave him a sip of my sparkling water:

Carson: "Yum, pop!"

me: "What!? Pop!?"

Carson: "Yeah, yum, pop!"

me: "Who gave you pop!?"

Carson: "Nana!" (laughs)

me: "Nana gave you pop!?"

Carson: "Nana gave you pop!" (laughs)

me: "No, Nana gave me pop.

Carson: "Nana gave me pop! Nana gave me pop! Nana gave me pop!" (more laughing)

At least he's honest! Watch out, Nanas! Carson tells me everything :)

watch & wait & worry

A few days ago it was finally time to discuss the MRI results and go over Carson's symptoms with his neurosurgeon. I was extremely anxious for this appointment. I had no idea if his doctor would recommend scheduling a surgery, or if he would want to just watch and wait.

Thankfully his neurosurgeon is very conservative when it comes to operations and he was content to watch and wait. While we are relieved that we don't have to schedule a surgery, it's hard watching and waiting for things to get worse. Carson's bladder/bowel issues have resumed back to normal but if they change again we need to do more testing. And of course tonight we saw a minor change again (many of you know the inner dialogue: is this the start of a UTI or is this something else?) I'm guess I'm struggling a little bit. I want to celebrate the fact that we have no surgeries on the calendar but at the same time I'm too anxious because I'm watching for symptoms to happen that could mean surgery. Symptoms that are important to catch early on.

These anxious feelings are reminding me of Carson's first year of life where everything felt uncertain and there was a lot of watching and waiting. I have been frustrated many times thinking about the first year because looking back I feel like I "worried away" his baby years. Months later here I am again worrying!

So here I am learning the same lesson again. Worrying does not make it better, I'm not in control, God knows what we need, He is in control, His love never fails. Carson is a blessing and his life was meant to be enjoyed and I cannot let fear hold me back.

The MRI and the details

This morning my phone rang at 7:15 am and even though I was still half asleep (okay, completely asleep) I knew exactly who it would be. Ever since we scheduled our MRI several weeks ago I have been praying that there would be a cancellation so that we could do the MRI sooner. Who else would call me at 7:15? Sure enough, there was a 90 min time slot open, perfect!

Unfortunately the MRI had to be scheduled in the first place because of some new problems that have popped up with Carson. 6 weeks ago we have discovered some sudden bowel/bladder changes. This can be a concern because it can indicate that there's a tethered cord. Carson's neurosurgeon decided to issue an MRI to take a closer look at his spine to check on the tethering among some other things.

Coincidently we also recently had an appointment with Carson's orthopedic surgeon who detected minor scoliosis in the thoracic portion of his spine. It may not be serious but it may be a symptom of some changes going on in his central nervous system. The scoliosis could be a symptom of a tethered cord, his syrinx (hydrocephalus, or fluid, in his spine), or his chiari (a malformation of the cerebellum in his brain). So as you can see it's quite complicated. The new problems we're seeing in Carson could be symptoms of several issues.

Hopefully the MRI will give us a good direction if there needs to be some sort of surgical intervention, but most of the time the results are used as "one piece of the puzzle." I'm hoping and praying however, that with the help of the MRI we will have a simple, clear direction in terms of how we should proceed with his current issues.

Overall, the day went pretty well. The challenging part was denying him food until his MRI at 2pm. By the time we entered the hospital that was pretty much the only thing on his mind. Other than that, everything went well and I'm glad to have it all behind us.

For the past few years we have certainly had our share of "the unexpected," yet it is always hard to get used to. These past few weeks have been stressful dealing with the new symptoms and changes with Carson. And although I try to be proactive and meticulous with his care I am reminded that there are many aspects of his condition that are simply out of my control. It's a hard lesson every time and I'm trying to trust God that He is in control.

Now we are eagerly anticipating the follow-up appointment with Carson's neurosurgeon. Please keep us in your prayers.

Easter Eggs

Kisses from aunt Dana and aunt Cori



Dana and Sen-pu obey directions from
Carson, "open!"

Carson is the only grandchild on both sides of the family. Basically that means that Carson thinks every holiday is about him or planned for him. But who can blame him? It's fun to watch a toddler experience all the festivities a holiday brings. Watching Carson anticipate a first time experience is just as much fun for us as it is for him. And although Nate's mom was gracious enough to create an egg hunt for all the "kids" (who are pretty much in their 20's) It was more fun to watch Carson do his own "special" egg hunt!

Snow Storm Pics

Recently we experienced one of the largest snow storms Grand Rapids, MI has ever had. 16 inches of snow fell during the storms 24 hour period. Many businesses and stores were closed the following day and schools were closed for several days. During the storm Carson and I were staying with my parents as Nate remodeled our entire kitchen!

Here's a few photos from the storm. If you think the sled Carson is riding looks homemade then your right. Carson's grandpa (my dad) is a little odd, in a good way, and created a wooden sled 2 years ago with ski's on the bottom. Carson enjoyed being pulled through the neighborhood on it.

All of this snow has us eager for the summer! We are very much looking forward to August when Nate's Uncle Rob will marry his lovely fiance, Beka! And guess who was asked to be the ring bearer?! Our little Carson! It will be a proud moment for us as we watch our little boy walk (probably with a walker) down the aisle. 2 years ago we would have never known if this would even be possible. We were thrilled and thankful to be able to answer, "yes!"

Number 2

As you can see the title of this entry is called, "Number 2;" a significant number in our household these days for several reasons. First of all, Carson turned 2 years old on Jan. 6th! To celebrate we had our immediate families over (a very large group of 14) for one of Carson's favorite meals, lasagna. We have come to realize especially with all the holiday parties lately, that Carson LOVES parties. He is energized by groups of people and loves to charm anyone who looks his way. His birthday party was no different, he was with his favorite people eating his favorite meal and enjoyed it thoroughly! I was caught off guard by how emotional his birthday was for me. It's strange seeing your baby grow into an actual child with a personality! I found myself wondering where 2 years went? The memories from Carson's birth came rushing back, the NICU, the anxiety, the fear, but also all the milestones and achievements Carson has made. While looking back I have realized that I can look forward with hope.

Number 2, Part 2:

Admittedly, sometimes it irritates me when parents complain about potty-training and things like that. I try not to let it annoy me, but it's just one of those things. I think it would be amazing to have the consolation that although potty-training is hard it will work. The child will achieve it and it will be fine. (sorry to be harsh) With spina bifida you certainly do not have this assurance. You try to potty-train without really knowing what can be achieved. You practice walking without really knowing if your child will ever be able to take steps without your help, the list goes on. Well, tonight we had a break through with the potty! Ever since Carson was 10 months old he has been sitting on the potty. I know this sounds silly, but it's part of what he does while attending the Conductive Learning Center. It's hard to know exactly what this has helped and in what way, but it definitely raises the child's awareness of this activity. So for 14 months now Carson has been sitting on the potty doing breathing exercises and other things that we make enjoyable. Sometimes he would go sometimes not, I never knew what we were going to get. But we always tried to bring his attention to what we were doing and we always celebrated whenever he produced something in the potty. Tonight for the first time as I was reading Carson a book he pointed between his legs and said, "poo poo." So we went upstairs to sit on his potty and minutes later there it was! What a break through for us. It is an amazing sense of accomplishment when your 2 year old child with spina bifida tells you that he has to go number 2! (It's also pretty amazing that I can devote a blog entry to poo and be excited about it, but hey, it's progress!)