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!)