Tuesday, December 8, 2009

Conductive Learning Center

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!

Wednesday, November 25, 2009

The Art of Thanksgiving

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

Tuesday, November 17, 2009

10 months old

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!

Monday, October 26, 2009

A few updates

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!

Wednesday, October 21, 2009

Support a cause, buy a hat!

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

Tuesday, October 13, 2009

9 Months Old

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!

Monday, September 28, 2009

One Crazy Week!

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!

Thursday, September 10, 2009

8 Months Old

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.

Tuesday, August 18, 2009

Thursday, August 13, 2009

MRI Results

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.

Wednesday, July 22, 2009

Looking Back and Looking Ahead

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.

Monday, June 29, 2009

Almost 6 Months Old

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!

Wednesday, May 27, 2009

5 Months Old!

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.

Monday, May 4, 2009

4 Months Old!

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.

Wednesday, April 22, 2009

Aliens and Spaceships

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!

Monday, April 13, 2009

Carson's New Boots

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!

Saturday, April 4, 2009

3 months old already!

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."

Friday, March 27, 2009

11 weeks

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!

Wednesday, March 18, 2009

Quick Update

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!

Thursday, March 12, 2009

9 weeks

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!

Saturday, February 28, 2009

No Shunt Yet...

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.

Saturday, February 21, 2009

A Visit to the Spina Bifida Clinic

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!

Thursday, February 12, 2009

Disappointing news...

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.

Tuesday, February 10, 2009

Prayer Request

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

Wednesday, February 4, 2009

Carson the Chubster

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!

Wednesday, January 28, 2009

Another positive appointment!

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!

Friday, January 23, 2009

Carson's appointments

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!

Sunday, January 18, 2009

Carson's little world

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!

Tuesday, January 13, 2009

Carson is coming home!

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.

Sunday, January 11, 2009

Another Carson Update

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

Friday, January 9, 2009

An answer to prayer...

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

Thursday, January 8, 2009

Good News to Report!

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.

Wednesday, January 7, 2009

Another Quick Update

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.