Baby Boy Bush

3 years ago...

2012-01-13T16:37:00.001-05:00

3 years ago my little sweetheart was born! Isn't this just such a precious picture? This was taken a few hours after he was born when we finally got to meet and spend time with him in the NICU. What an incredible day! I think I probably experienced every emotion possible.

Now here he is on his 3rd birthday! What a journey the past 3 years has been! There has been many days that have been overwhelming and hard and many sleepless nights of worrying. But there have been so many incredible days of joy, accomplishment, contentment, and pride.

On January 6, 2009, I was given a baby that honestly I never pictured for myself. And now I cannot imagine or picture my life without him. He is a blessing I do not deserve.

Happy Birthday, Carson. I love you!

First Steps

2011-12-19T19:42:00.001-05:00

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

2011-12-08T14:50:00.002-05:00

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!

2011-11-30T22:28:00.003-05:00

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

2011-11-12T21:12:00.002-05:00

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!

2011-10-21T14:44:00.003-04:00

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!

2011-10-02T22:30:00.007-04:00

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

2011-09-01T17:08:00.003-04:00

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

2011-08-15T16:45:00.006-04:00

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!

2011-07-18T22:31:00.005-04:00

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!"

2011-06-08T16:43:00.004-04:00

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

2011-05-18T22:16:00.003-04:00

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

2011-05-05T20:46:00.003-04:00

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

2011-04-26T14:47:00.003-04:00

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

2011-02-13T14:57:00.003-05:00

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

2011-01-17T23:26:00.003-05:00

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!)

JOY

2010-12-14T13:47:00.009-05:00

Isn't it true that we always want what we don't have or what we used to have. How many times have you heard a parent of a child with spina bifida say, "I'll never take my legs for granted again," or "I'll never take my health for granted," or whatever, fill in the blank. There are many things that I have never thought to be thankful for until my eyes were opened. You don't have to have a child with special needs to relate to this aspect of human nature of course. Haven't we all wanted a better car, a better cellphone a better job? Haven't we all wished for something that we once had- the "good old days," the loved one who is gone, or summertime?

This year, as challenging as it is, I am trying to be content with what I have now. Not, things I wish I had or things I used to have. I don't want my joy to be dependent on things that we're not given to me.

It is painful everytime I see Carson linger behind in his walker while other children run past, it's painful to watch him struggle through a task that would take others only seconds to do, and it's painful to worry about his future. But the greatest pain I feel comes when I find myself wishing and wanting things for him that simply are not for us. This is a dangerous rut that seems to hibernate in depths of myself somewhere and there are days when it all but consumes me. There are days when I just feel bitter and sick of Carson having to be the underdog all the time. There are days when everything just seems unfair. Those days are painful but also self-inflicted. Choosing joy means that I choose to see the gifts that have been given. And Carson is very gifted.

Carson's life has given me so much joy. It is the single most important and significant gift I have ever been given. And although his life meant new fears and new territories for me, God has also given me gifts that I could have never imagined. Choosing joy in our family means that we will never let the gifts that weren't given overshaddow the abundant ones God has given us today.

Lately...

2010-11-18T13:44:00.003-05:00

There's really not much to update, but I thought I'd share some photos. Carson was Harry Potter for Halloween and enjoyed passing out Candy. One of the photos is Carson sitting next to his Grandpa, we're still not sure what his costume was :)

Carson has been enjoying his bike. A few days ago we met Greyson and his mom, Leigh, for a bike ride at the park. It was adorable to see the boys together and as always, the playdate turned into a photo shoot. We have been doing various playdates with Carson's friends who have SB and each time I am even more grateful for these friendships.

"....After!"

2010-10-20T13:46:00.003-04:00

A few weeks ago I promised before and after photos to feature Carson's "new eyes." As many of you know, Carson had eye surgery to correct the crossing. The surgery definitely improved the crossing, but I'm not completely convinced it was 100% successful. Carson's opthomologist observed him for a few seconds and concluded that the surgery did in fact correct the crossing but I'm not sure I completely agree yet. I would agree that the surgery produced improvements, but I still see his eyes crossing daily. Hopefully in a few weeks at our next appointment, the opthomologist and I will agree on the results... whatever they are.

As you can also see, Carson received an adaptive bike. The handles and pedals move together allowing the child to mobilize the bike using their arms. Carson is able to move both his arms and legs yet even if his arms are doing most of the work it still benefits his legs getting them used to alternating movements; a skill he'll hopefully need for walking.

Carson absolutely loves his bike! It didn't start out that way. Carson's bike was very graciously donated and we received it at an event designed to show the donors how wonderful it is for kids to receive the adaptable bikes. The plan was to put Carson on the bike in front of everybody so that they could all see how much he loved it prompting further convictions to continuous donations. Unfortunately, Carson hated it and cried the entire time. Thankfully he was adorable enough to override the original plan and I reassured them that he would love it in no time. Now he proudly pedals it up and down the sidewalks in our neighborhood. It is such a wonderful thing to have another option than just a stroller. We can now go on walks outdoors with the bike!

I am so proud to share some very exciting news. Lately we have reached the milestone where Carson is using his walker in public places. This is exciting because we have ventured from practising it indoors at home to being able to use it functionally in other places. It will be a long time before he "masters" the walker, but he is confident and capable enough to use it out and about. This morning we brought it to the library to use during the toddler program. I was so proud of him. Watching him walk into the classroom on his own with the other children was a sight I will never ever forget. I had to concentrate very hard to keep from getting visibly emotional. Carson really enjoyed using his walker throughout the morning. I am so proud of him and so excited. It is amazing to be blessed with moments you thought may never happen.

Surgery Day

2010-09-30T19:48:00.003-04:00

Ever since we have endured countless stressful appointments, MRI's with sedation, and surgeries, I have discovered a new type of nausea. I feel it in the pit of my stomach usually the night before. I sleep (restlessly), wake up with it, and then feel it escalate throughout the morning and into the procedure as I wait. I try to concentrate on other things, I take deep breaths, I pray, but it sort of lingers. After the procedure or appointment it finally rushes out of my system but then leaves an exhausting haze. Yes, "surgery day" is a long day! As ridiculous as it sounds, the person keeping me strong is my 20 month old, Carson. "Surgery day" seems like the sort of situation where the parent should be calming the child but this morning it was the other way around.
Carson was quite happy showing up at the hospital. He loved the various playrooms/waiting rooms with all the different toys. And he loved flirting with the nurses. Obviously, he didn't have a clue what was going on, but it kept me strong seeing him enjoying the morning. He has been through so much. I sometimes get emotional in the waiting rooms and in part it's because of the fear, but also because of all the past memories of similar situations which God has delivered us from. The endless waiting before the surgery gave me time to remember that God has always protected Carson and has strengthened us when we felt we were at our lowest low.
After the surgery, of course, Carson's good mood was long gone. He was very upset after waking up from the anesthesia. He sobbed angrily as bloody tears trickled from his eyes (quite a scary sight!). Seeing your child like this is a helpless feeling, but it was my turn to be the strong one.
It's 12 hours later and Carson is home and resting in his bed for the night. It was a long day, but he did great. Each time we endure a challenge like today, I feel stronger for the next.

"Before, and...."

2010-09-27T12:12:00.003-04:00

Carson has been doing great lately! We recently finished another session at the Conductive Learning Center and it's amazing to watch his rapid progress in just a few short weeks. Throughout the session we continued to work with his walker (this has been the most challenging- Carson definitely has the ability to use it, but not the willpower. Why use this walker when I can crawl faster?!) He has also learned how to stand with his back against a wall and also palms against the wall when facing it. In other words, no supports to hold on to. He has also made unbelievable progress in cruising along furniture.

But the most amazing thing lately has been an answer to prayer. Several months ago one of Carson's biggest challenges was his lack of upper body strength which is unusual for Spina Bifida. Most kids with SB have pretty strong upper bodies and struggle with weakness on their lower halves. I suspected that the upper body weakness Carson was experiencing was due to his mild Cerebral Palsy. Anyway, I worried about his weakness and was afraid it would keep him from being able to support himself and that he wouldn't have the strength to be upright for a walking position. This was one of main prayer requests. When I meet with the conductors after his session they were very encouraged by the progress Carson made and said that his upper body weakness is no longer a main issue and that it shouldn't hold him back physically. Suddenly it was as if a weight was lifted from my shoulders. This is a big deal for us. Months ago I never imagined that he would be doing some of the things he is achieving now. God is good and is always blessing us. Carson has many challenges from his disability but it never keeps me from being thankful for all the abilities he does have. Carson is very blessed indeed.

Consider the photo a "before" picture. In a few days I will post an "after" hopefully showing straight eyes! Eye surgery is scheduled for this Thursday (Sept 30). Please pray for a successful surgery and peace of mind. As the date nears I grow more anxious. Although this is a small surgery it's still always hard. Carson does not do very well with sedation and it's tough to hand your child over to surgeons. Although I'm not eager for the procedure, I am eager for the results. Not only will his eyes straighten out, but he will also be able to develop bilateral vision.

19 months

2010-08-30T15:13:00.004-04:00

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

2010-07-30T14:44:00.003-04:00

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

2010-06-14T13:07:00.003-04:00

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?

2010-05-06T20:23:00.005-04:00

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

2010-03-26T16:51:00.004-04:00

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

2010-02-10T20:51:00.005-05:00

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

2010-02-01T14:39:00.008-05:00

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!

Marathon Update!

2010-01-11T15:57:00.003-05:00

Hello everyone,
I think it's about time for an update as we have a lot to share! We have completed our first session at the conductive learning center. The class lasted 3 weeks and went rather quickly. During the course of the class Carson improved in many areas. He gained alot more strength and although he doesn't sit completely steady he is getting closer. He also has gained speed with his crawling which is exciting to see. His biggest improvement in my opinion is his ability to stand with more confidence and his ability to steady his body against a surface using his arms and hands. Today I was reminded by this new milestone when I was preparing some food for him in the kitchen. Instead of laying him on the floor, I helped him into a standing position. As I prepared his lunch he stood holding onto a drawer for the entire time! Not only did he stand without falling, but he enjoyed it as well. We have worked incredibly hard for this blessing. It sure makes you thankful in a new way for these milestones!
I wish I had only positive updates, but unfortunately we were recently discouraged to learn that it was time to catheterize Carson. We were hoping that we wouldn't have to deal with this until a few years from now, but Carson's hydronephrosis (fluid in the kidneys) has gotten worse so we're hoping that cathing will help. It was overwhelming at first, but now it is part of our routine. The hardest part, in fact, is that Carson is always full of energy and cannot lay still during the cathing. This makes it tricky, but it is always fun to see his legs kicking! One of the risks with cathing is the possibility of UTI's and today, sadly, we learned that Carson has his first infection. Since we caught it early we're not anticipating fevers so please keep him in your prayers!
Friday we had another MRI. Somehow the hospital expects you to arrive 2 hours before the procedure to sit around with a hungry, crabby baby. Nate and I were dreading the day, but Carson did surprisingly well! I know alot of you were praying for him that morning, thank you! Since the MRI was 2 hours he had to be sedated. He was upset and out of sorts when he woke up, but he quickly recovered and was his normal self again in no time.
Today I received the tentative results. We're excited to report that there has been no change in his chiari, hydrocephalus and syrnix since his initial MRI in August! This is very good news. We'll talk more in depth about it with his neurosurgeon in a few weeks. I hope he is pleased with all he finds.
Lately I have felt some new anxiety over a new specialist we will soon be adding to Carson's list. Since Carson is not progressing well with his upper body strengthening we have decided that it is time to see a neurologist. Hopefully we'll get some answers as to why he is lacking strength. I am nervous and eager, please pray that we'll solve this mystery and overcome whatever the new challenge is!
And now for the biggest news: Carson turned 1 last week! I blinked and suddenly a year went by. The day was more emotional than I thought it would be. I cannot believe all that we have been through in a years time. We are so thankful for Carson and all that he is teaching us. And we are grateful to God because he has provided EVERYTHING we have needed. A year ago the thought of not only raising a baby, but a baby with special needs was stressful and overwhelming. I felt inadequate for the task (and still do!), but I am always reminded that God provides everything that we need (and in our case even more than what we need). He has given us the resources we need for Carson's medical issues, the finances we need to afford it all, the intellect to understand and react, and an awesome and supportive community filled with people who pray for us, encourage us, and even new friends who are going through the exact same thing.
Please continue to keep us in your prayers, we have been blessed by them.

Conductive Learning Center

2009-12-08T22:25:00.000-05:00

We have survived our first week of conductive learning! As I have mentioned before, we are enrolled in the parent child program at the Conductive Learning Center- a 3 week intensive therapy session for 2 hours a day, 5 days a week.
Prior to our class we were warned that it was exhausting for both child and parent which proved to be true! By the time class ends I feel that I have spent my whole day’s worth of energy and it is only 11am. But, although exhausting, it has been productive.
Conductive Learning is hard to describe. It is based on the belief that the body can reroute messages from the central nervous system through alternate paths. In other words, if there is nerve damage they believe that an individual can learn new ways to pass messages from the brain to certain muscle groups. Conductive Learning originated in Hungary and is gaining popularity worldwide. The program is known for its success among people with cerebral palsy, but their methods have benefits for people with spina bifida as well.
Carson and I have done multiple types of therapy and there are a lot of things that are very different about the Conductive Learning Center. So far I love the approach they take. They really take into account the “whole body” and well being of the individual. There is also a lot of emphasis on the verbal aspect of the therapy. Although Carson is only 11 mo old it is not uncommon for the conductor to say something like “You do it, Carson. Come on, lift your leg, touch your toes, crawl over here…” Obviously he cannot understand every word, but the repetition of this will help him start to follow directions, and activate him physically.
There are only 4 children in the class and 3 of them have spina bifida. Among them are his friends, Greyson and Whitney. I think it freaks him out a little bit being amidst the chaos of multiple kids, but I think he enjoys the activities and the other children as long as they don’t get too close to him. Eventually the peer pressure of other kids excelling physically is a good way to motivate. As for me, I enjoy the company of the other moms. It’s awesome to cheer on the kids. One of the bonds I think we share as moms is the pride we have when we see one of the kids succeed.
The past few days have been especially exciting for our family because of Carson’s latest milestone achieved. After months of hard work he is “crawling.” I don’t mean in the traditional sense, but he is moving his body forward to travel to a toy so that counts, right? We are so proud of him!

The Art of Thanksgiving

2009-11-25T14:36:00.005-05:00

For us the holidays will be more meaningful than ever. As all of you know we have had quite a year! Although our newest family member brings us tons of joy it has been a rocky journey. Looking back on the year brings me mixed feelings. Yes, I feel joy, love, and all the good things, but also a lot of pain, doubt, and tragedy. My pregnancy was not a time full of blissful anticipation, there was a lot of pain and worry. I remember envying surrounding pregnant women at Babies R Us as I registered or watching families with young kids running and playing outside and feeling like my life would never be that carefree (which is foolish of course! Who is to say that these people never had any of their own problems!) At one of my showers I remember my Aunt Kathy telling me that you've got to pray for strength because Satan tries to rob you of your joy. She doesn't know this, but those words really resonated with me. "Robbed" was exactly how I felt. In fact, it was consuming. There were times when I felt so robbed and entitled to what I didn't have that I would forget about all the miracles that God was doing in Carson's body, all the prayers and support from my surrounding community, all the mercy God was showing us, and all the things He provided I never even knew I needed.

Even today it's easy to slip back into those familiar feelings of doubt and mistrust. I don't know what Carson's future holds, and what issues we'll need to overcome. But I do know that being thankful is not circumstantial. It's a choice. Will I decide to feel robbed of things I think I deserve? Or will I choose to be thankful? When you focus on the blessings you realize just how thankful you can be.

Through Carson, God's gift, I have new convictions and passions. He has shown me a world that Carson's story can bless. God is good. This year I am thankful for so many things.

Photos taken by photographer, Ashley Malefyt. Check out her adoption journey at savingolive.blogspot.com

10 months old

2009-11-17T13:33:00.006-05:00

I have to apologize for being late on some much needed posting. Everyone knows that the holiday season is a busy time, but with Carson on the loose it makes it even busier.

We are beginning to prepare ourselves for our first "therapy" session at the Conductive Learning Center. This place is difficult to describe, but it's kind of like physical therapy with a different type of approach. In fact, it is quite controversial especially to doctors and some other therapists. Yet I've heard a lot of good things about it particularly from parents whose children are enrolled. During December Carson and I will attend a 3 week intensive program. We'll be there every morning for 2 hours, which I'm told is tiring (for both parent and child) but also productive. Since it is a group session we'll get to see Carson's friends, Greyson and Whitney, and their moms of course:) I am excited to begin and hoping I won't be disappointed!

This past weekend we also journeyed to Livonia for a Spina Bifida Conference. For the first time ever we spent the night away from Carson. I was incredibly nervous that he would freak out, but he had a great time with his Grandma and Grandpa. I was told when I returned that he loved the bakery. Hmmm, I wonder what they fed him?

Anyway, the conference was great! It gave us a chance to meet and hear from new people. Some of them were adults with SB and it was incredibly encouraging to hear about their lives and careers. We ate lunch with a woman, Katie born with SB, who was married and gave birth to a healthy child three years ago. We had a great time traveling with Andy and Leigh. It was fun experiencing our first conference with them as we have gone through so much together already!

This past week we visited a new eye doctor. We had mixed feelings about our original doctor and upon leaving our appointment we were so glad we trusted our gut! Our new doctor found that Carson's current lens prescription was not near as strong as it should be. We'll be receiving his new glasses next week and hopefully we'll finally start to see some improvement! She also concluded that the eye patching is not necessary at this point.

Halloween was tons of fun with our little guy. We hope you enjoy the photos!

A few updates

2009-10-26T20:07:00.004-04:00

This morning we went to see Carson's eye doctor again and we weren't quite sure what to expect. Carson has been wearing is glasses for several months now and we haven't noticed huge changes or improvements with his vision. He doesn't seem able to see past 5 ft and his eyes still cross. The doctor concluded that the glasses were indeed helping, but not as much as he had hoped. Our new plan is now patching in addition to the glasses. For 2 hours a day we must place a patch over one of his eyes (alternating each eye daily) until we see his eye doctor again in Jan. Now I suddenly feel back to square one- constantly putting his glasses and eye patch on again and again as he constantly removes them again and again. There is a possibility of eye surgery in Carson's future if we don't see much improvement again.

Last Friday we went to the Spina Bifida Clinic and saw a few more of Carson's doctors. His neurologist determined that Carson's chronic vomiting was not neurological. Even better, Carson hasn't thrown up in 2 weeks so we're all feeling a little more at ease!

Carson's orthopedic doctor feels that he is doing great and is ready for a "stander," or a device designed to keep him upright while he wears his AFO's to help him learn standing. We have been practicing standing without the stander (we don't have this device yet) and he does great! So our doctor agreed that he can practice standing both ways.

Currently Carson is enrolled in a swim class at East Hills with his buddy, Greyson. He loves the water and is doing great in the class. It's refreshing to have just a normal non-medical routine in our week!

We're also excited to share that we're hearing a lot of "da-da's" and "ma-ma's" from our little guy! Somehow he only says "da-da" when he's excited, and "ma-ma" when he's whinny. Hmmm, we're going to have to work on that!

Support a cause, buy a hat!

2009-10-21T22:11:00.003-04:00

My friends, Karl and Ashley Malefyt are raising money to adopt a little girl, Olive, born with Downs syndrome. They are currently selling hand made hats to help raise funds. Please take a look at their blog and send them some support! savingolive.blogspot.com

9 Months Old

2009-10-13T19:35:00.003-04:00

Big things are happening in Carson's world; his first tooth finally made it's debut! There is nothing more adorable than a baby smile with a little tooth peeking out:) I'm considering all of us quite lucky because the whole teething ordeal so far has not seemed too painful (although the biting of curious fingers is another story- those baby teeth are sharp)!

On our previous post I wrote about the sudden vomiting Carson is undergoing. Out of the blue he started throwing up almost daily (sometimes twice a day). This has been a frustrating and scary time for us. He finally stopped throwing up last Tuesday and I thought maybe somehow it was over. Just when I was starting to relax about it he threw up again today. This Friday we'll be seeing Carson's neurosurgeon; hopefully he can give us some insight into this problem.

Last week we received Carson's new AFO's, or ankle braces designed to help with standing and walking. It's exciting to be moving towards this direction, but I have to admit that it was hard seeing them on his legs for the first time. Sometimes the reality of Spina Bifida just hits me in different ways. There are days where I feel in over my head and overwhelmed with the struggles of SB. Those days are hard, but more importantly, there are many more days that I see miracles happening right before my eyes. God is good!

One Crazy Week!

2009-09-28T15:22:00.004-04:00

This past week has been a bit tough. Last Tuesday we we're instructed to take Carson the ER because of vomiting. Taking someone to the ER because they're throwing up may sound a bit overkill, but when your dealing with a person who has Spina Bifida it could be much more serious. Vomiting can indicate a neurological issue which needs urgent attention.
On our way to the hospital I thought that we were finally at the beginning of more surgery. I imagined that Carson's neurologist would have to arrive and suddenly perform a scary surgery of some sort. I was terrified! I hoped that Carson's diaper bag contained enough supplies and toys for what I thought would be a several day stay.
Thankfully we were released from the ER several hours later. The doctors believed that Carson's vomiting was most likely due to a stomach bug of some sort (Even though he had no temp. and was his normal self).
Yet, almost a week later and Carson's still throwing up almost daily. His pediatrician feels that this is probably simply Carson's new norm. As long as his wet diapers and weight gain continue, she is not concerned.
Of course I am relieved that were not looking at surgery or infections, but I still can't completely shake the fear. Please pray that Carson will cease vomiting and wisdom for myself and his doctors.
On the bright side, Carson will finally receive his standing AFO's early Oct! AFO's are plastic and velcro ankle braces designed to help with standing and walking. Carson loves standing upright with help from Nate and I. I hope he'll be eager and excited to try it in his braces!

8 Months Old

2009-09-10T22:20:00.004-04:00

It's hard to believe summer is over; time is just flying by. I also cannot believe that my little guy is already 8 months old! Sometimes I wish I could hang on longer to certain days and just savor them. Carson sure is keeping us busy!

After a few weeks of constantly yanking off his glasses, Carson finally seems to have made his peace with them. What a relief! He pretty much leaves them alone. Our next goal: Getting him to actually look through them instead of over them like an old man.

Carson is still continuing with physical therapy, but starting this fall he'll be doing a lot more of it. He'll receive therapy through Early On, Mary Free Bed, and also a group class. We're also considering taking a swim class and a session at the Conductive Learning Center.

So what's new in Carson's world? He is mesmerized by his feet. Nate and I are thrilled that he has the strength and flexibility to reach them. Carson is also sitting up; he's not completely sturdy yet, but he's getting pretty close. He's certainly progressing, but the area he has always thrived the most in is eating. Carson now eats chunks of food like meat and loves it! He'll eat anything in his path with little trouble and washes it down with sips of water from a glass with help from his mom. The other day Carson and his dad ate sizzler steaks, yum:)

Wednesday we had another head check with the Neurosurgeon and everything still looks stable. There is still concern about Carson's lack of upper body strength. We're hoping it is something we can work through with physical therapy. There is a possibility that his syrinx, tethered cord, or chiari malformation is causing it which would lead to a surgical intervention. For now all we can do is watch and wait. His next MRI will probably be January.

Glasses

2009-08-18T11:11:00.002-04:00

MRI Results

2009-08-13T20:34:00.002-04:00

Last Friday we headed to the hospital for an MRI of Carson's head and spine. The MRI was ordered by Carson's neurosurgeon who requires all of his patients with SB to get an MRI around 6 months of age.

Naturally we were very nervous for the MRI and even more nervous for the results. The MRI was hard because we pretty much had to starve Carson before the procedure because they had to administer anesthesia. During the MRI he had to have a ventilator down his throat which caused discomfort afterwards. That, mixed with the anesthesia , produced a very disoriented and unhappy baby. The whole ordeal took 6 hours.

Wednesday we meet with the neurosurgeon to discuss the results. The MRI showed the issues we knew about (stable hydrocephalus, a tethered cord, and a chiari malformation) and also a new issue. Near the top of Carson's spine the MRI showed a syrinx (a pocket of fluid). Currently it is not a threat, but if it continues to grow an operation will be needed. In 4 months Carson will have another MRI to monitor the size of the syrinx.

Unfortunately there is no easy path for operating on a syrinx. Eliminating the pocket of fluid could mean a shunt, a chiari surgery or a tethered cord surgery or a combination of several surgeries if the first one doesn't work.

We are also closely watching Carson's right arm as it is showing signs of weakness. It's possible that the weakness is related to a chiari problem (an area of Carson's brain affected by the SB). We are currently watching for more symptoms of a chiari and hoping, again, that it doesn't lead to surgery.

After the appointment we were wiped out. There is so much anxiety and stress leading up to these appointments. We never know if we're going to hear good news, or schedule a surgery. Carson's MRI wasn't the best case scenario, but it also wasn't the worse. We are thankful to avoid surgery for now. Please continue to keep Carson in your prayers. Pray for God's continuous mercy on Carson.

Looking Back and Looking Ahead

2009-07-22T15:47:00.007-04:00

Carson and his buddy, Greyson, who was also born with Spina Bifida

It's hard to believe that six months ago we we're still anxiously waiting to meet our baby. We had no idea if he would be born kicking his legs or experiencing paralysis. We didn't know how long we would be making trips to the NICU to visit our baby after his birth, or what types of surgeries to expect during the weeks following his birth. Will he need a shunt? Shunt revisions? Will we leave the hospital only to return shortly for UTI's or other infections? Will our lives ever return to a sense of normalcy? Will God answer our prayers?

Looking forward and anticipating the future still brings loads of questions and uncertainties but also a new sense of confidence and trust. God has shown us such mercy and compassion. I cannot even express what a blessing Carson is and how many milestones we have reached. Dealing with Carson's health issues is still the hardest thing I have ever had to go through, but I am reminded by looking back that God's plan for redemption has never failed us yet. I know that Carson's future is in God's hands and that his life is going to be a testimony of God's goodness amidst struggle.

Last week Carson had appointments with all of his specialists. Again, he is doing very well. So far he still has no need for a shunt. His urologist was pleased to see that Carson has avoided UTI's and infections and his hip X-ray lent good news from his Orthopedic doctor.

Unfortunately, Carson is showing signs of weakness in his right arm. His neurologist is concerned that it could be a symptom of a tethered cord and chiari malformation influencing his cerebellum which controls fine motor skills. Fixing this requires a tethered cord surgery. Carson's physical therapist believes that the weakness could simply be from an imbalance of muscles in his legs influencing his upper body and which arm he chooses to use. Obviously we're hoping that this can be resolved through physical therapy. Were keeping an eye on it for now. We'll also be visiting Carson's eye doctor again because his pediatrician wasn't pleased with how his eyes are doing. Also coming soon is a scheduled MRI so we can get an idea of what's going on inside our little guy.

After Carson's appointments I feel challenged in a new way. There are always going to be things to worry about but if I preoccupy my mind with worries then I will miss out on enjoying Carson's miraculous life fast-forwarding before my eyes.

Almost 6 Months Old

2009-06-29T19:30:00.002-04:00

Again I can write with more good news. Recently Carson visited the Spina Bifida Clinic for a general check up. We were pleased to learn that we can adjust the time Carson spends in his AFO's (leg braces). Up to this point he had been wearing them 18 hours a day. Last week they reduced it to only 12 hours a day. This pretty much means that the entire time Carson is awake he is AFO free! This news was a great relief and surprise. In the summer heat Carson's feet were pretty much permanently sweaty so it's great letting his legs air out all day long.

I'm also pleased to say that I don't have any other medical news because we have hardly had any appointments. It has been great getting a break from those but it almost makes it more nerve racking for the next ones. Mid July brings appointments with Neurology, Urology, and Orthopedics. Please pray for us as we prepare for these appointments.

Lately Carson has been working quite hard on all his physical therapy stretches and has also been up to eating new things. He has recently started vegetables which he doesn't seem to care for. I think he's destined to have a Cornell sweet tooth.

Carson is always endlessly entertained by his dad, the musician. Nate is constantly coming up with silly songs about Carson. No matter what music seems to always cheer him up. It's fun watching his personality emerge!

5 Months Old!

2009-05-27T22:48:00.005-04:00

It seems that I am long over due for a new post. We have been quite busy lately so we have lots to share! As you can see in our photos Carson got his first taste of solids. We weren't really sure what to expect as we prepared Carson's first bowl of oatmeal. I assumed that he would be confused and that it would end up all over his face instead of in his mouth. After feeding him a few bites I was surprised to see him eagerly eating it. Although I was still right about the oatmeal ending up all over his face as well!

Recently my mom, sister and I took Carson to the Meijer Gardens. Carson is enrolled in "Early On" and they held a function at the Gardens. Carson could care less where we went, but we had fun taking him all over in his stroller. Carson is a pretty easy-going little guy. He's perfectly content relaxing in his stroller no matter where we go. My mom likes to always remind me how fortunate I am to have a pleasant baby, she claims she wasn't so lucky with me.

Another first was taking him up North to his grandparent's cottages. He was a very good sport about his not so comfortable looking life jacket! We could hardly stop laughing at him the entire time we were on the boat!

Not much is new as far as his appointments go. Carson will start additional physical therapy at the myelomeningocele clinic at Mary Free Bed so I'm looking forward to hopefully learning more about what were dealing with.

4 Months Old!

2009-05-04T21:35:00.004-04:00

For the first time in his life, Carson finally left Grand Rapids and ventured out to Lake Michigan. On Sunday we celebrated Nate's mom's birthday in Grand Haven . Before we left I gathered all the things I could think of that Carson might need; baby things may be small, but boy do they add up! Our car was packed to the brim by the time we left. When we arrived Grand Haven was surprising warm (eliminating the blankets, hat, and sweatshirt I packed for Carson). I doubt Carson ever realized that he was anywhere significant, but we had a lot of fun taking him around to all the sights.

More familiar to Carson of course was his check up again with Dr Foody, his neurologist. We were pleased to hear that Carson's head ultrasound looked great. In fact, Carson won't be back for another head ultrasound until July!

Recently Nate and I got to hear Carson's first baby laughs! It was probably the most adorable thing I've ever seen/heard. Adorable and slightly awkward; think Goofy's laugh but in a baby's voice:) Ever since the first set of laughs we've been trying to get him to do it again. Apparently we're not funny enough; he doesn't laugh often, but he sure gives us lots of smiles so we're thankful for that!

Please keep Carson in your prayers this week. We're visiting his eye doctor again.

Aliens and Spaceships

2009-04-22T10:29:00.008-04:00

We're happy to inform that after two weeks Carson is finished with his castings. Although we we're happy that that phase ended we have now moved on to a new one. The casts are now replaced by AFO's (ankle braces). 18 hours of the day Carson wears his plastic and Velcro braces decorated with aliens and spaceships (pretty eighties looking actually!). When he's not wearing his braces we're stretching his feet still trying to increase the flexibility. Ultimately the braces will hopefully keep Carson's feet positioned at a normal angle to help prepare him for walking someday hopefully.

Carson again doesn't seem to mind his alien covered footwear, but as always these types of things are harder on me. The braces are a constant reminder to me of Carson's challenges. It's hard to believe that Carson will be wearing these types of braces for the rest of his life. It's starting to sink in that we're on the brink of a long journey.

Recently we also visited Carson's urologist. Carson was born with hydronephrosis, an enlargement of the kidneys. We discovered that at this appointment one of Carson's kidneys looked fine and the other had decreased from a level 3 to a 2 which is better. Hydronephrosis can be fatal so obviously we are monitoring his levels. We still don't have an accurate idea of Carson's bowel and bladder issues but the doctor told us to be prepared for cathing instead of potty training. It kind of makes you thankful for changing diapers for now!

Nate and I also visited the Spina Bifida support group meeting for the first time the other week. Although we weren't sure what to expect we were surprised to see only several people there. Besides Nate and I and our friends, Leigh and Andy, there were only 5 other people and 3 of them were the board members. They explained that their group was kind of in a transition phase. Since the SB National Assoc has set new guidelines, their board must grow to 8 people and raise about 4 times the amount of money they generate currently. To make matters even more challenging, the only 3 board members are burnt out and ready to pass their responsibilities on. It was discouraging to see this support group almost completely dissipated and overwhelming to hear what the group was going through! But Nate and I felt surprisingly motivated afterwards. Maybe we could help this group flourish.

Next week brings another head ultrasound to monitor hydrocephalus. Please continue to keep Carson in your prayers!

Carson's New Boots

2009-04-13T15:51:00.007-04:00

Today Carson received his second set of casts. He'll receive a variety of casts and braces designed to increase the flexibility in his ankles. Currently his foot is unable to flex to a pointed toe position. We found that the casts are doing their job quite well. When we removed the first set which was put on last Monday, he had greater flexibility. It's going so well that his doctor decide to reduce the duration from four weeks of casting to only two!

Carson handles his casts pretty well. In fact, he did a lot better than I did at the last appointment. Watching a group of doctors bind your baby's legs up into casts is hard to watch, but Carson didn't seem to mind. Throughout the week it seemed that he didn't even realize he had them on. The hard part was actually removing them. The machine used to cut the casts off is alarmingly loud especially for a baby, and after we washed his legs they became irritated from the soap or the scrubbing. As Carson sat on my lap crying in discomfort I tried to remember the last time I felt so helpless. He finally started to settle down and just stared at me with the saddest blue eyes I have ever seen. If it weren't for Nate, the reasonable one, I probably would have climbed out the window with Carson and escaped:) Regardless, this is his last week in casts so it isn't so bad.

This week we'll be visiting with Carson's urologist for the first time since Carson's birth. Most people with spina bifida lack bowel and bladder control in varying levels. Since Carson is obviously still a baby I'm not sure what we'll be able to learn.

Carson as always, is a busy boy. Not only from the endless appointments, but he's on the go a lot with his restless parents. Nate and I are so anxious for summer we have already been golfing several times. Carson's eager Grandmas are always willing to take him while Nate and I hit the golf course. We hope someday that Carson will be able to enjoy sports if he chooses to play them. For now we're just focusing on the day to day things and enjoying our little guy!

3 months old already!

2009-04-04T15:01:00.004-04:00

Good news to report again! Carson had another appointment with his neurosurgeon, Dr. Foody, on Wednesday. Dr. Foody determined that Carson's ventricles still look great and there is no need for a shunt yet. The next appointment to check his head again isn't until the end of the month so that gives us some time to relax about the matter.

Next week we'll be seeing Carson's orthopedic doctor again. Most likely he'll have to have casts put on his legs for the duration of this month and part of May. The casts are needed because Carson's feet turn upwards due to the lack of working calf muscles and tendons. The casts will gradually stretch his feet to a normal angle. The Doctor assured me that the casts do not bother babies at all. I hope she's right, they look like such a burden.
I never realized how overwhelming it is having a family member with special needs. There are some days where I feel like everything is smooth sailing and then other days when reality seems to hit me full force. But amidst it all, Carson is smiling and there is no greater blessing than helping him make day to day progress despite his challenges.

I'm always encouraged remembering what my mother-in-law said recently, "We know that God is good. He is incapable of doing anything but good. But God defines "good," not us. Our definition of good and God's may not look the same here on earth, but we can be confident that God has the best plan in store for Carson."

11 weeks

2009-03-27T17:18:00.003-04:00

As many of you know, Nate and I recently have had reason to worry about Carson's eye sight. His physical therapist and pediatrician recommended that we see an eye specialist. Carson seemed behind in his ability to focus on a face and track an object. So once again, Carson and his nervous parents headed out to another appointment. And once again we left the appointment relieved!

The eye doctor said that Carson's eyes seemed fine. He said the "cameras" are working, he's just not very interested in what he's seeing. I thought, well thanks, Carson, I can't get enough of looking at you. I guess it's not mutual! The doctor believes that it's due to some immaturities in the brain that still need to develop. As long as we keep stimulating his eyes he should begin to take interest soon.

This past week I felt that Carson was already making progress. For the first time he holds his gaze while looking at me and he seems to take more interest in his surroundings. It's finally starting to feel like he is visually aware of me instead of just reacting to the sound of my voice. It's strange to think that there is so much satisfaction in interacting with someone you've only known for 3 months who cannot even verbally communicate:)

Although Carson obviously cannot talk yet, his physical therapist thinks that someday he'll be quite the talker. She said that he's very expressive with his sounds. I would agree, expressive and loud!

The warmer weather has opened Carson up to a very new world. Like anyone who lives in Michigan, he seems very surprised to see sunshine. We have already used our stroller quite a bit and Carson seems quite content relaxing in it. I should mention that it's a jogging stroller so hopefully our walks will progress to a run:)

Wednesday is another dreaded head ultrasound. As always, please pray that the results will show a stable amount of fluid. Thanks!

Quick Update

2009-03-18T15:39:00.002-04:00

This update is a few days late, but I just wanted to let everyone know that Carson's head ultrasound went great on Monday! It is always nerve-racking sitting in the waiting room waiting to hear the results; especially when the doc is an hour late! Of course it was worth the wait to learn that Carson's head is growing proportionally.
Our next appointment is in 2 weeks so please pray for similar results!

9 weeks

2009-03-12T13:32:00.007-04:00

It's hard to believe that Carson is now already 9 weeks old (and now weighs 12 lbs)! I can't believe how quickly time is passing! Our frenzy of appointments is finally slowing down and we're starting to get a chance to just relax with our little guy, it's great!

Carson is moving along very well, literally! He has been working with a physical therapist every week and is gaining a lot of strength. Carson can already hold his head high while he's propped on his elbows. He also has learned how to roll over! This morning, like usual, we practised his exercises and he seems to love it. He rolled over again and again. He's a pretty determined little guy! The physical therapist always remarks how content and easy going he is. He is always willing to do his exercises and only quits when he is truly tired out. Carson's determination is an inspiration to me already. I think that someday he's going to be the one encouraging me on, instead of the other way around. It's already amazing witnessing Carson's ability to compensate for his weakness and conquer tasks in his own way.

Just when things we're starting to seem like smooth sailing a new concern came up. Carson seems to have difficulty seeing. Sometimes he makes eye contact but it's pretty rare. We're pretty sure he can see some things, but we're just not sure how much. Obviously we have a vague understanding so we're seeing an eye specialist at the end of April. For now, we'll keep trying to work on helping him focus on objects and tracking them.

Last Sunday Carson was baptised at Woodlawn CRC. It was a beautiful service and Carson did very well! He wore his Great Grandpa's baptism gown so it was very special (although my siblings kept calling him "Princess Carson")!

Like I said, we've been enjoying a relaxed week, but reality hits again on Monday- another head ultrasound to check Carson's ventricles for hydrocephalus. Please pray that the results show stable fluid amounts!

No Shunt Yet...

2009-02-28T15:53:00.003-05:00

Yesterday I tried to prepare myself for some hard news that I thought was heading my way. Because of our last appointment with Dr. Foody I thought that I was probably going to hear that it was time for Carson to have a shunt surgery. Miraculously we learned that there wasn't enough significant change in his ventricles to do the surgery! Isn't it interesting when your surprised God answered your prayers?

We were also surprised to hear that Carson's next appointment to measure his ventricles isn't until 3 weeks from now. So I guess that gives us a little time to relax.

Carson is of course oblivious to all the medical fuss. His primary concern is pretty much getting his food when he wants it (which is quite a lot and quite often). Carson continues to pack on the pounds; he now weighs 11 lbs and somehow becomes more and more loveable.

It's pretty crazy how different my life is now! Everything changes. The other night Nate and I visited Brenda and Brandon, friends of ours who just had twins. Instead of showing up at 9 and deciding when and where we were going to go, we arrived at 7:30 and pretty much spent the evening feeding the babies with the TV on in the background. At 10:30 we wrapped it up. Quite different from my weekends leading up to Carson's birth! It sure is an adjustment, but change is okay. Carson is my world.

A Visit to the Spina Bifida Clinic

2009-02-21T15:52:00.007-05:00

Friday was a big morning for our little family- our much anticipated meeting with the Spina Bifida Clinic. Of course the night before Carson decided he didn't want to sleep so Nate and I did our best to try and focus on what the doctors there had to say. We meet with an Orthopedic doctor, a dietitian, a Physical Therapist, an Occupational Therapist, and a pediatrician. Most of their assessments on Carson were things we had already learned, but there were a few new bits of information.

The Physical Therapist confirmed that she believed that Carson would some day walk with ankle braces. Secretly I had always hoped that maybe he would exceed this and wouldn't need any assistance at all, but after meeting with her we know it isn't possible. Carson does not have calf muscles or the ability to build them. This means he'll need the ankle braces to help balance out his shin muscles and quads.

In the near future Carson may also need casts on his legs to help increase his flexibility in his ankles. The tendons in the front of his ankles are extremely tight forcing his feet upwards. We are currently working on exercises to help stretch that tendon so that his feet will rest at a normal angle. Hopefully if the stretches are successful he won't need the series of casting.

Overall Nate and I felt uplifted and motivated after his appointments at the Spina Bifida Clinic. It's easy to feel overwhelmed by Carson's special circumstances, but compared to what could have happened, Carson is well off. It puts it in perspective.

Also positive to report is Carson's baptism right around the corner; March 1 at 9:30 am. We'd like to extend an invitation to everyone- friends, family, and anyone else connected through our blog. We will be serving at least cake (but probably also a light lunch) following the service. The baptism will be at Woolawn CRC. This is not the church Nate and I attend (We're currently looking for a new church), but it's the church Nate grew up in and was also baptized at. Please join us!

We'd also like to remind everyone to please pray for Carson's appointment on Wed. Recently the fluid in his ventricles increased so he will be having a CT scan to take a closer look at his brain. It is likely that we will learn that he'll need a shunt surgery to relieve the fluid. Please pray that the tests will reveal a decrease in fluid.

Thanks to everyone for the prayers and support. We hope to see you all on March 1!

Disappointing news...

2009-02-12T10:30:00.004-05:00

Unfortunately we had a disappointing appointment yesterday. Carson's recent head ultrasound indicated hydrocephalus, a fluid increasement in Carson's ventricles in his head. Hydrocephalus is controlled by a surgically placed shunt in the brain. The shunt is attached to a tube which empties the excess fluid into the stomach. Because Carson had some extra fluid he now has an appointment in two weeks to get a CT scan. This will show a 3-D image of Carson's ventricles so they can better understand his situation. The CT scan will determine if Carson needs a shunt or if we still will undergo some more waiting and watching. If they decide that a shunt is necessary the surgery will be scheduled for the following week. In other words, it's a possibility that Carson will have this surgery in three weeks.
The idea of putting Carson through another surgery breaks my heart, we were hoping that when we brought him home it was for good. The surgery itself and what it could mean for Carson's life is also scary. Typically people who have shunts undergo shunt revisions throughout their lives. A shunt revision is a surgery to fix a clogged tube, or an infection. Some people need many revisions and some a few to none. We're told that if you don't notice the symptoms of shunt failure it is fatal.
We always knew that a shunt surgery was a probable possibility for Carson, but obviously we were hoping he would be one of the lucky ones who didn't need one; and of course it's possible that he still may be. Hopefully we will know in two weeks.
Nate and I always remark how fortunate we are to live in a country during a time period where these life saving measures are obtainable to us. We are so thankful that we have access to the things that Carson needs and that we can provide those things.
Please pray that in two weeks the CT will reveal less fluid and that Carson will not need a shunt.

Prayer Request

2009-02-10T17:33:00.004-05:00

Carson's recent appointments have still been going very well. Next week for the first time we'll be visiting the Spina Bifida Clinic at Mary Free Bed where we'll be meeting with an Orthopedic doctor. We're a bit nervous for this one. We obviously know that there are problems with Carson's legs, but it's a different reality hearing about the specifics. We're praying that we'll leave this appointment uplifted from good news. God has shown us such mercy with the rest of Carson's appointments and updates, please pray with us that this will continue.

Our friends, Leigh and Andy who are pregnant with a boy with SB, will have their C section on thursday! They're extremely excited! Please pray that God will be near to them at this time of anticipation and that their baby boy will amaze them with his capabilities as Carson has with us. Check out their blog: ourlittlegibblet.blogspot.com

Carson the Chubster

2009-02-04T16:02:00.002-05:00

Carson continues to surprise us. Today at his pediatrician appointment he weighed just over 9 lbs! I began to worry that he was gaining too much weight, was I contributing to the obesity epidemic? But my doctor assured me that this was wonderful news and that Carson is growing at not only an impressive level, but a healthy one too.
Carson's head size is also right where it should be, still no need for a shunt. We really hope that this continues!
This morning we visited Dr. Naum, Carson's plastic surgeon. He said that Carson's back closure looked excellent; normally the scar is a "cross shape," but Carson's is only a single line. He explained that this was due to fact that Carson's lesion was so small, and that he had great muscle and skin tissue to work with.
All these positive appointments have been pretty amazing. Since Carson's birth I have left almost every appointment in tears- the good kind.
As my grandma would say, Carson is such a trouper. He hardly cries or fusses and now sleeps in 5hr+ durations! As evident in his weight, he loves to eat and noisily chugs it down. Carson's getting chubbier especially in his face. Today I dislodged his pacifier which was stuck in his double chin, and his cheeks are perfect for constant kissing.
We're pretty sure he can't get any cuter!

Another positive appointment!

2009-01-28T16:49:00.005-05:00

Looks like we made it another week without the need for a shunt! Today Carson had another head ultrasound to monitor hydrocephalus. The doctors determined that there is still no change from birth. This is great news! It's wonderful to leave an appointment relieved, especially because we feel so much anxiety prior to these visits. We never know what we're going to learn!

Carson is doing very well these days. He is now 3 weeks old. At his last pediatrician appointment he already weighed 7 lbs 5 oz!

Recently we learned that there is an orphanage in India of 48 children who are praying for Carson. It's amazing how fast and how far his story is spreading. Carson is a testament of God's faithfulness and goodness and we are feel so blessed to be a part of it.

Keep up the prayers!

Carson's appointments

2009-01-23T15:08:00.006-05:00

I'm pleased to inform everyone that Carson's many appointments have been going well. On Monday we were back at the hospital for a head ultrasound to determine if there has been any swelling in the ventricles of Carson's brain. The radiologists and neurologists found that there has been no change so far when comparing it to Carson's original head ultrasounds taken when he was born. This is great news! We are thrilled that there hasn't been any increasments in the fluid build up. However, this is only the beginning of a long road. Carson will have to repeat these appointments on a weekly basis. After a month or two, if there is still no change, the appointments will occur once a month. After a year of ultrasounds Carson is home free for no shunt surgery if his ultrasounds continue to look good.

We are more and more encouraged with every positive appointment and we feel that we have so much to be thankful for! Even though Carson has turned our lives upside down, he is a blessing and we wouldn't have it any other way.

Coming soon: appointments with orthopedics, urologists, physical therapists and more head ultrasounds. We'll keep ya posted. Thanks for the many prayers!

Carson's little world

2009-01-18T23:03:00.003-05:00

Carson seems to be adjusting to his new home well, I'm not sure that we're adjusting quite so easily:) I'm lucky if I make it out of my bath robe by mid afternoon! Carson sure keeps us busy but he sure is a joy. In fact I'm told that I'm lucky to have his feeding schedule; he wakes up every 4 hours for food.
Eating, sleeping, and pooping, is pretty much how Carson spends his days. He's pretty peaceful until it's time for a diaper change. He squirms, cries, and frantically kicks his legs. It sure is awesome to see his legs moving so much, he is a miracle.
Tomorrow my flurry of appointments begins. Carson has an ultrasound on his head to monitor the hydrocephalus, and then a visit with the neurosurgeon. We're really hoping that the ultrasound will reveal no change in his head size. We're assuming that Carson will have weekly ultrasounds to monitor this and hopefully soon they will determine that a shunt will not be needed, we'll see...
It seems that our blog is getting a lot of traffic so hopefully that means lots of prayers for Carson! Please remember our neighbors and friends, Andy and Leigh, in your prayers as well. Leigh is having a boy with spina bifida on Jan 29!

Carson is coming home!

2009-01-13T21:52:00.004-05:00

Great news- Carson is coming home tomorrow! We can hardly believe it. He's finally ready to leave the NICU just in time for the coldest day of the year:)

It's a little scary thinking that Nate and I are completely responsible for Carson. We wish we could not only bring Carson home, but also a nurse! It's scary, but also of course exciting! No longer will we have to say goodbye to my baby; now we get to say goodnight.

Now an update on his recent tests: Carson had an ultrasound on his head in order to find out more about the fluid build up in his head. The radiologists determined that there has been little change since his birth. For now he can come home without a shunt. However, there is still a very possible chance that hydrocephalus could occur which would put in him back in the hospital for another surgery. Carson will continue to have appointments to monitor his head. Hopefully the fluid levels will not go up.

The doctors were also concerned about his kidneys and ability to empty his bladder completely. Recent tests did not tell us much. Carson will be on antibiotics and his bladder will be watched closely.

Today we met with a physical therapist who accessed Carson's leg muscles. He said that Carson had excellent muscles and seemed to use them well. His feet lack flexibility so he showed us some stretches to help. He also said that he believes that Carson will someday walk, perhaps with ankle braces, but he will walk! I couldn't help it, I just started crying. What news!

The events of today were an answer to prayer. God has shown us such mercy. Carson is a blessing; it's amazing how much we love him. Even more amazing is that God loves him even more.

Please continue your prayers for Carson.

Another Carson Update

2009-01-11T22:51:00.001-05:00

It has been a busy past few days! Carson has been getting lots of visitors and lots of love. A typical day for us at the NICU now includes diaper changing, trying to feed him while he’s on his tummy, holding him on our chests reclined, watching his many adorable facial expressions, and learning as much as we can.

Carson always finds a way to bring a smile to our faces. He seems very comfortable and content as he sleeps the day away. Our creative and awkward feeding solutions put a bewildered expression on his chubby little face.

The nurses have a checklist of things we have to learn before they will release him. The list includes simple tasks like taking his temperature, feeding him, & bathing him. There are also some more complicated items on the list, things like Infant CPR/ First aid training, and changing Carson’s Diaper.

One might think changing a diaper is a mundane task, but let me assure you, it’s not. Because he still can’t be on his back, we have to put on diapers backwards, while he is lying on his stomach. The wipes are cold so whenever one touches his cute little butt, he tries to crawl away. It takes one person to hold his ankles and one person to change his diaper. The nurses say that if we change his diapers every time for the next three days, we just may pass.

A few things to pray for:

We found out Saturday morning that Carson’s fluid levels in his head went up by ¾ of a centimeter. Today it stayed the same. They are planning on doing an ultrasound tomorrow morning to determine what is going on in his brain. If they don’t find anything major, Carson may be coming home in the next day or two. The tests may result in some disappointing news. It’s likely that Carson may need a shunt. It breaks our hearts to think that we may have to send him back into surgery after he has already spent so much time recovering.

They will also be running some tests on his kidneys. Carson has been able to pee on his own, yet some urine may be backing up into his kidneys. This test will confirm or deny that. If they do determine it is, we still don’t know what it means or what they will do about it.

Please pray that these tests will bring good results and that Carson can come home at last!

Thanks for your continued prayers,

Nate & Em

An answer to prayer...

2009-01-09T22:09:00.001-05:00

Last night we asked people to pray specifically for Carson’s head to decrease in size. This morning it had gone down ¼ of a centimeter. Praise the Lord. Emily also got to breast feed today. It was a little awkward because he still has to be flat on his stomach, but he managed okay. It was really fun!

We also had some not-so-good news. The doctors said not to get too excited yet about the lack of swelling in his brain. Often times it can take up to a month before the baby requires a shunt… More waiting.

We were really excited about Carson’s ability to pee on his own, but it appears some urine may be refluxing back into his kidneys. They are doing a VUR test to check for that tomorrow. It may be a symptom of the surgery, or it could be from the Spin bifida. Please pray specifically for this tonight.

We also realized today that his feet are clubbing some. Not in the traditional sense where the toes curl down, but his feet won’t bend down past 90 degrees. Sometime in the future they will do physical therapy to try and help it.

Emily and I are going home today. It’s sad because we won’t get to spend as much time with him. Last year a friend of mine had a baby and I asked them, “So now that you have a baby, what do you do with it?” I guess now I know. You stare at him because you can’t get enough. Carson is the best little boy we could ask and we couldn’t imagine life without him. Thanks for your continued prayers.

Love you guys,

Nate & Em

Good News to Report!

2009-01-08T23:18:00.005-05:00

Today was full of blessings! Carson is growing and doing very well. Today they removed the cath and he is urinating on his own and filling his diapers. This doesn't necessarily mean he will have adequate control over these things, but it's a step in the right direction. The doctors have also been monitoring his head for fluid build up. We're happy to report that his head size has stayed the same so far. We are continuing to pray that the fluids will not increase so that he will not need a shunt. Carson has also been impressing us, his visitors, and the staff with his strong leg movements. In fact one of the nurses said she was keeping a close eye on him because she was afraid he would scoot himself all the way to the edge of his bed area!

Carson also got to eat for the first time. We fed him while he layed on his tummy by bottle. We also got to "hold" him for the first time. This evening he was placed on a pillow and then on to our laps. We fed him and burped him this way. It was amazing.

Unlike yesterday Carson seemed comfortable and content. When baby is happy we are happy!

Although we have all of this great news to report, please continue to pray for his health. Although he is doing very well, we still don't have a clear assessment on his physical abilities, he may still lack bowel and bladder control, and a shunt surgery could be in our future.

Thanks for reading, I hope to write tomorrow with more good news! Thanks also to our many visitors and all the emails of encouragement. God has blessed us with such a caring community and a thriving baby. We are so thankful because all of these good things are a gift from God.

Another Quick Update

2009-01-07T22:49:00.003-05:00

Today Carson had an exciting day filled with visitors. We just can't get enough of his chubby little face. Today he was visited again by his family members and he also met Brenda and Brandon, Jenn and Scott.

There hasn't been a lot of significant change to note, but a few changes- some good, some not so good. On the positive side, Carson was taken off the ventilator. This device was inserted into his throat yesterday to help with his breathing. He is now breathing on his own and seems much more comfortable without the tubing. He also is constantly moving around on his tummy and likes to stick his little tush in the air. This of course requires leg movement which we have seen quite a bit of so we're are very happy to report that. He also has had a few bowel movements and is urinating well, but still no word on whether he will have adequate control over these things. Unfortunately, the ventricles in his brain have increased. He is still shunt free, but if the fluid build up continues to increase we are probably looking at another surgery to install the shunt.

Today he seemed agitated and uncomfortable. He has to constantly stay on his stomach and his hooked up to multiple devices through multiple cords. It's hard to see him squirming around in discomfort without being able to relieve him. Today he was especially stubborn about keeping his head turned to the right. In fact, after his head was turned he managed to turn it back on his own! I think he is already revealing his stubbornness:) On our last visit to say "goodnight" he finally seemed content and was resting soundly. Finally seeing him comfortable was like the ultimate achievement.

We can't wait to visit him tomorrow and hopefully learn more.

Post Surgery

2009-01-06T19:29:00.005-05:00

Carson made it through the surgery well. He will be heavily sedated for the next day or so to make sure he doesn't move around too much. After the surgery, the doctor's still can't tell us anything about bowel/bladder control, the necessity for a shunt, or the sensation in his legs.

All they know is what they found in surgery: His spinal cord was sticking out through the cyst. Two nerve endings that were supposed to go to his legs were attached to the skin on his back. The doctor needed to cut them so the spinal cord could lay into the spinal column. They can't tell the extent of the damage.

Because the cyst was smaller than they originally thought, the plastic surgeon had an easier time closing up the wound than expected. A two inch cut is all that is left of the cyst. It should heal up in the next few days.

From here we wait. Doctors don't think they will know anything about anything for at least a few days. Most likely we will not know about the leg sensation for one or two weeks.

The Lord answered a lot of prayers for us today. We slept well last night, were at peace through most of the day, Emily's surgery went great, and our baby is the cutest ever (we especially prayed for that). We move forward with faith that God is in control. We know that your prayers are helping carry us through. Thank you for your prayers and support. We will post again soon!

Love,
Nate & Em

Carson Nathaniel Bush

2009-01-06T13:17:00.003-05:00

Carson Nathaniel Bush was born at 7:56am today! At 6lb 100z he is 18 1/2 inches long. He has thick black hair. We can't decide on who he looks like, but most people say he looks like both of us combined. Everyone at the hospital thinks he is the cutest baby alive; of course we agree.

Em is recovering really well. She will be here till Friday or Saturday.

Currently Carson is in surgery. We are quite sure he won't be getting a shunt today, but that can change. The size of the defect is smaller than anticipated, which is great news. He can move his legs, but is clearly lacking some sensation there. They don't know if the surgery will improve his sensitivity and motion or hurt it. It depends on how many nerves they need to cut to get the spinal cord in place. Because Carson will be drugged up for the next several days, we actually won't know how successful the surgery is for a week or two.

We will keep you updated. Thank you all for the many prayers! We really need them right now.

We are in room 4406 if anyone wants to visit.

-Nate & Em

Only a few more days!

2008-12-31T16:42:00.003-05:00

This past Monday we had a very uplifting appointment. Our baby weighed around 5 lbs 11ounces. Next week when he is born he will probably weigh just over 6 lbs. He's still a bit small, but growing well. The fluid in his ventricles has no longer increased and remains around 13-14mm. The doctor said that these numbers are in the very mild category. We also learned that our baby has a head of hair which was evident in his ultrasound pictures!
A few days ago we also visited the NICU and Neonatal. The staff was very kind and we feel at ease knowing where we'll all be in a few days. We had a lot of questions for the Neonatal doctors, but as usual, the answers are usually, "we have to just wait and see." So in other words, we still have no new information on our baby's physical abilities, hydrocephalus, the severity of his latex allergies, or recovery time.
As many of you are aware, our C section date is Jan. 6 at 7:30 am. We feel so encouraged by everyone's excitement and eagerness to visit us and our baby, however we have made the decision to allow only family visitors on the 6th, please. After the 6th we'll be looking forward to hopefully many friends stopping by!
We will also do our best to keep everyone updated on the day of our baby's birth. We will try to post updates on our blog that very day.
Please continue to pray for us as our delivery date nears, our baby's health, and his doctors.
Thanks!

Amnio Results are in

2008-12-12T21:01:00.000-05:00

After a little over a week of anticipation, we finally recieved our amniocentisis results. We are relieved to announce that our results came back normal. In otherwords, there shouldn't be any other deformities or fatal problems with our baby. What an answer to prayer!
At our last appointment, the ultrasound showed straight legs and normal looking feet which is good news. However, the fluid in our baby's ventricles increased. Normally a baby will have ventricles measuring 10mm and under. Our baby's ventricles are measuring 14mm and 19mm. Fluid build up in the ventricles can occur from hydrocephalus which needs to be treated with a shunt. It was disappointing to receive this news, however it still does not indicate that a shunt will for sure be needed. So far they are still planning on doing the initial back surgery and then will monitor the ventricles in the brain for hydrocephalus. Please pray that the fluid will reduce and that a shunt won't be needed.
Last week we went to our C section class. It feels great gaining more and more information on what to expect on our big day. We're also going to be touring the hospital and meeting with NICU people. Our friends, Leigh and Andy, have already visited Spectrum and felt great about the people and facility. We we're glad to hear that and are eager to see it for ourselves.
Our nursery finally has a crib thanks to Nate's mom:) It's starting to come together but we still have a lot to do in preparation for our baby. This last month is going extremely fast; we hope we'll be ready for the 6th!

6 more weeks!

2008-11-26T13:01:00.003-05:00

Baby boy bush is already on his way to being spoiled! This past Saturday I had another baby shower. It was at Egypt Valley Country Club and it was thrown by Nate's mom and aunts. I had a wonderful time and received a lot of very nice gifts! Nate and I feel so blessed by every one's support and generosity.
Last week we we're back visiting with Doctors again. This time we met with a Cardiologist to make sure our baby's heart was okay. Heart defects are more common in babies with birth defects so they wanted to make sure his heart was in good shape before they performed any surgeries. We spent 3 hours at the doctor's office and finally received the news that his heart looked perfectly fine. We we're very relieved but quite shaken up from the anticipation and stress of these scary appointments!
We have another appointment next week to have an amniocentesis. During this procedure they will insert a needle into the amniotic fluid to test for certain chromosomes. In rare cases some chromosomes may indicate a failure to survive past birth, so of course this appointment is stirring up some anxieties. We just try to remember that we've been blessed during so many other appointments so we're trying to think of positive things to dwell on.
Last night we met with our friends Andy and Leigh who's son will also be born in January with Spina Bifida. It has been so great connecting with them. We always feel encouraged after meeting with them and we're so thankful that God has blessed us in ways we could never predict. Please remember Andy and Leigh in your prayers as well.

Baby Showers!

2008-11-12T20:32:00.002-05:00

The past two weekends my mom and sister threw me two showers. One was at my mom's house and included her friends and my friends, the other shower was in Indiana with my Eenigenburg family. I had such a great time and received a lot of very nice gifts. I'm starting to wonder if our nursery is big enough to accommodate all the things a baby needs. His room is quite small although he does have the biggest closet so maybe that's fair after all. We actually finally finished painting his room today! We'll try to post pictures of it soon.

There are no medical updates to report as of now. Next Wednesday we're meeting with a Cardiologist to make sure that there are no additional problems. My doctor said they're not anticipating on finding anything else wrong, but they just want to be sure about it before they perform the surgery.

Baby Boy Bush continues to move around quite a bit (he has lots of energy like his dad!). Thanks again to everyone for the cards, support, prayers, and gifts. We are certainly looking forward to meeting him in January! Anyone have any name suggestions...?

Summary of the Past 6 Weeks

2008-10-23T16:48:00.000-04:00

As many of you already know, six weeks ago we found out some great news and some not so great news. We learned the gender of our baby...boy! but also that we will be facing some unique challenges. Our baby has a birth defect called Spina Bifida.

Spina Bifida
Spina Bifida is a neural tube defect that occurs very early in the pregnancy (before 28 days). The spine is supposed to close similar to a zipper. When the "zipper" fails to connect at some of the teeth, the spinal cord is exposed usually resulting in nerve damage. The opening in the spine can occur anywhere. Generally the lower the lesion, the better. The nerve damage can cause a variety of results in people with SB as far as their mobility is concerned. Some people can walk with leg braces, and others experience paralysis and are in wheelchairs. It is rare that individuals with SB have control over their bladder and bowels so most of these individuals are catheterized.

Hydrocephalus
80-90% of babies born with SB experience Hydrocephalus in the brain; an irregular amount of fluid build-up in the ventricles of the brain. The fluid is drained through a surgically placed internal shunt, or a tube, draining the fluid from the ventricles into the stomach. Monitoring the shunt becomes an important routine. Shunts can become infected or clogged causing shunt failure. If the shunt fails, surgery is required. Some individuals live their lives only needing a few shunt revisions, while others undergo hundreds.

Our Baby's Specific Case
The lesion on our baby's spine is in the sacrum/L5 area. This is the lowest area on the spine which is usually good. We probably won't know the extent of his abilities to walk until after he is born and at the walking age, although the day he is born they will begin testing his legs for signs of sensation. The doctors have scheduled a C-section for our baby on Jan 6; about 4 weeks early. They want to remove him as soon as his lungs are ready so that they can begin operating on his back. He will be born in the morning and then his surgery is scheduled for that afternoon. During his surgery they will remove any cystic areas (caused by spinal cord leakage) and close his back using surrounding skin.
Currently there is not enough fluid build up (hydrocephalus) in the brain for a shunt, but most of the time the hydrocephalus occurs after the back surgery. They will monitor him to determine if a shunt is needed throughout his hospital stay (6-14 days).

How You Can Pray for Us...
We are always praying for healing and also that we can accept God's will whatever He has in store for us. The main areas of our prayers include three categories: We pray for his ability to walk. We pray that he will not need a shunt, and we pray that he will be in the rare category of having bladder and bowel control.
These past few weeks have been quite overwhelming, but we have felt all the prayers on our behalf and have received immense support. Recently we were connected to another couple, Leigh and Andy, facing similar challenges. Leigh and Andy are having a baby boy with SB also in January. They also happen to live right down the street from us! Our new friendship with them has been very encouraging; things seem a little less lonely.

Ultimately, we are extremely excited to finally meet our new baby and we know he will be a blessing no matter what!