Glasses

Well, the first week with glasses has been a journey. I'm going to go ahead and label it a success because I didn't throw the glasses or myself into oncoming traffic. But when it came to getting Carter to wear the glasses, we were far from successful. He absolutely hates them. The longest we've been able to keep them on is 5 minutes. If we keep them really distracted, he'll forget he has them on and play for a few minutes. But as soon as he touches them or remembers they're there, he rips them off immediately. And then when we try to put them back on, he starts crying and pouting (he has recently perfected the pouty bottom lip and it is sooo cute). At this rate, it will be a LONG time before we can get him to wear them full-time.

But how cute is he...

we had to go back and get them adjusted because they were slipping. but still cute

the lip pout

18 Months

Carter is 18 months old today. Despite the rough first year or so, he's currently happy, healthy and thriving. It's been almost 5 months since his last surgery and we are praising the Lord since that is the longest surgery-free stretch of his life. Since there's not many developmental milestones to share (he's still pretty far behind on his gross motor skills), I'll just share the intricacies of this little man and his big personality:

• He loves to shake hands and high five with everyone. 
• His low laugh/chuckle is completely infectious.
• He squeals anytime he's in a shopping cart. It's really loud, but also so darn cute. He loves to  entertain all the ladies in Target, Costco and Sprouts.
• He now smells like"boy" no matter how much we bathe or change him
• The only thing he wants to play with are balls. He will play fetch with himself - throw them and then chase them across the room. 
• He constantly has bruises on his forehead. Mostly from running into doors and furniture - pretty sure he gets that from him mom. 
• His favorite place to play is the hallway. Not sure why, but since he's happy in there, I let him be.
• He wears 18-24 month shirts and can still fit into a couple of his 6month shorts. Super skinny little waist. Definitely didn't get that from his mom. 

Happy Halloween

The happy scream. Check out the long torso on this kid.

And since a blog about Carter wouldn't be complete without a medical update, our latest issue is his constant eye crossing. We saw a pediatric ophthalmologist and they informed us he's far sighted and he's crossing his eyes because he's having difficulty seeing. So he's getting glasses. The cutest little Nike glasses. We'll get them this week and it should correct his eye crossing and make sure he doesn't develop a lazy eye. Will post pictures real pictures soon, but for now, here's his play glasses.

Ring Bearing

Carter did great in his ring bearer gig at Rachel and Jason's wedding. He rode in a wagon with the "rings" and was pulled/pushed by his cousins. He was the star of the show. Well maybe 2nd behind the bride.

After the wedding, Gramma Lynn picked him up so mom and dad could go on their first vacation in years - Maui for a week! Carter did great with grammas and papas (they each took him for 4 days) and we had an amazingly fun and relaxing week.

Goodbye to the helmet

It's been six months. Carter has been wearing the stinky, sweaty helmet every day for six months. 23 hours a day. And now we are finally done!!!! PTL!!!

We met with the Orthotist last month and she suggested Carter keep the helmet on until he was 18 months old (end of October). However, she also said that the head shape had corrected enough that if we felt like we wanted to stop treatment earlier, she was fine with that. After talking to his his neurosurgeon and physical therapist in the past weeks, we decided that we would stop the cranial remolding process at his next appointment - which was today.

While it's not completely in the normal range, we're happy with his head shape. And the Orthotist confirmed that due to his shunt, age and other factors, it wouldn't enter "normal" measurements even if we kept it on for the recommended three more months. There would be some change, but not much. And with the helmet off, we can focus even harder on his physical therapy and getting him caught up on his gross motor skills.

Another benefit, I am writing this post at the end of Carter's first helmet-free nap in 6 months. Going on three hours!

Saying goodbye to the helmet

Happy helmet-free boy!

Not much happening here

There's not much going on here, and that's a really good thing. No surgeries, no ER trips and less therapy makes me a happy momma. Just a little teething pain here and there, but heck, that's nothing. Carter's been his normal, happy self. I've been my getting back into my SAHM routine and Brad's been working like crazy. Not the most eventful summer, but we needed some normal around here.

So in lieu of any news or events, here's a couple pics from the last few weeks.

Loving his new Matt Barkley jersey. Less than 50 days til football season.

Bath time is the best!

Successful Surgery

Monday's surgery went very well. Carter went in at 7:30 and was done by about 9:00. The longest process of the surgery was putting in the IV. He has really difficult veins. So he looks a little like a pin cushion with holes in his hands, feet, elbows. Poor baby. They almost had to do a central line since they were having so much trouble with the IV. That would have bumped our hospital stay to 2-3 days, so we're really glad that wasn't the case.


Soon after surgery Carter seemed fine. He was eating a bit and the pain was manageable with meds. By Tuesday morning, we could tell he was over it. He wanted to be back home and so did we. It was a much different hospital experience with a mobile 1-year-old than when he was 6-months and younger. He was bored in the hospital bed and hated that he was strapped to all the machines and couldn't move around. We had to work to keep him entertained and happy the entire time. I came home so exhausted and praying that we don't have to do that again anytime soon.

Now that we're home Carter is doing great. He was a little sleepy and grumpy on Tuesday, but by Wednesday he was back to normal. He jumped right back into his regular routine and was happy all day. We'll go back for a check-up with the surgeon next week and then an MRI at the end of the month to make sure everything is still good. We can't thank our friends and family enough for all the love, support and especially prayers. We are blessed.

waiting for surgery. 

a couple hours after surgery. cut up and teething but still happy.
 

happy & smiling in the hospital.

Swimming...

It's going to be a FUN summer. Carter loves the pool. We went on a long walk today and when we got back home, we went to stick our feet in the pool. It was kind of cold, so that was all we were planning to do. But he was having so much fun splashing, that we finally just took off his clothes and put him in. We thought the cold water would bother him. Not so much. He was loving life. I think this will be a regular occurrence all summer long.

Another Surgery

Dang I hate writing these updates. With a very heavy heart, I'm sharing the recent news we got from Carter's neurosurgeon. After his latest MRI, it appears Carter has a cyst in his brain. It is a build up of cerebral spinal fluid connected with his hydrocephalus. The concern is that it is right next to his optic nerve and could be stretching/damaging the nerve - which could lead to a visual impairment. So to avoid that, he wants to do an endoscopic fenestration of the cyst. He'll be drilling into Carter's brain and opening the cyst wall to allow the fluid out and keep the cyst from growing and putting pressure on the nerve. It's a quick, low risk procedure - about 8 minutes of actual surgery plus the time for anesthesia. And it will most likely be an overnight hospital stay. Surgery will be Monday, June 4.

This latest development has really hit us hard. We have been feeling really defeated and a little blind-sighted. I can't help but wonder if this is going to be our life. Is every routine check-up going to reveal another issue that needs to be treated or monitored? I try to force myself to look on the bright side - this is a much less serious/complicated procedure, there are no problems with the shunt, his heart has been healing perfectly after that surgery, etc. But optimism isn't really my forte and remaining strong is tiring.

Prayers are appreciated. 

This was an interesting and enlightening week. Carter hasn't been himself. He's been extra grumpy and sleepy. And really, really whiny. This may not sound like much to complain about, but with his shunt, any change in behavior could point to a problem. I had been noticing symptoms since Monday so I called the neurosurgeon on Wednesday afternoon to touch base. After describing the symptoms, the doctor ordered an MRI to check on the fluid levels in his head to see if the shunt is operating properly. While waiting for the MRI, we called our pediatrician just to make sure it wasn't an ear infection or other common, less-worrisome issue. When we listed his symptoms he said, "How quickly can you get here?" That didn't really do much to ease our concern. But after a full check-up, there wasn't anything going on that he could see. He did reassure us that the shunt was probably not malfunctioning or completely blocked. If that were the case, Carter would be completely miserable and vomiting. But it could be a kink or minor block in the tubing. Or the setting on the shunt may need to be adjusted. So for that, we had to wait until we could get the MRI.

In the mean time, Carter seemed to be feeling better. Still whiny and not sleeping great at night, but not nearly as bad as earlier in the week. We were definitely relieved and encouraged by his improving mood.

By Friday, we had insurance approval and an appointment for an MRI next Wednesday (one week from the time we first called). It will be a quick scan of his ventricles. No sedation needed - thank goodness. Since Carter is pretty much back to his normal self, I'm not too stressed out about the fact that it's taking a whole week to get an appointment. And I know that if he gets worse (fever or vomiting), they'll see us immediately. Also, our neurosurgeon is on call this weekend and we have his private cell # if needed.

All this to say, this whole week will probably be a reoccurring scenario whenever Carter gets sick or out of sorts. I'm sure we'll learn quickly what are "shunt symptoms" vs regular sickness. But all the doctors assured us that we can't be too cautious and there's no such thing as crying wolf when it comes to kids with Hydrocephalus.

Birthday party!

We celebrated Carter's birthday with the family on Sunday. Some food, presents and the traditional first birthday cake smash. Unfortunately, Carter did not get into the cake like most one-year-olds. So instead of the pictures of the birthday boy covered in cake, I have pics of him crying and begging to be let out of his high chair. He didn't mind the taste of the cake, he just wasn't a fan of it being all over him - especially when he started rubbing his face and getting it in his hair and eyes. After we wiped him down, he was good to go again. He had a lot of fun with his grandparents, aunts, uncles and cousins. Then he crashed for 2-1/2 hours so dad and mom could clean up and relax. Good day.

with cousins jacob, josh, and caleb

not so sure about this...

can i be done now?

enjoying his new toys

Happy 1st Birthday, Little Man

Carter is one! How did that happen so fast? We celebrated with lunch after church, a little birthday cake and swimming in the afternoon. Very fun day. But more festivities are still to come. Party this weekend with a bunch of family. Can't wait.

Our Vegetarian?

Carter has had eating issues from day one- actually day 5 when he decided that breast milk was great, but only in a bottle. We saw immediately that he didn't take a bottle properly, and it seemed to be painful when he ate. So it came as no surprise that when Carter was diagnosed with reflux at about six weeks old. Carter was given baby Zantac for his reflux, and twice a day, we forced the medicine down his throat, and twice a day it was a battle of wills combined with a lot of tears.
From then until now, Carter has associated putting anything in his mouth other than a bottle or his fingers as pain, bad, don't even think about it. Kids love their pacifiers, Carter hates them. Kids love putting toys in their mouths, Carter doesn't. The mouth was a source of pain and a couple rough intubations didn't help matters. Not to mention, Carter has cut a tooth every other week for the last couple months. The kid has 8 teeth, and it seems as though we will be getting more shortly.

When Carter was six months, we (Val) started introducing baby food into his diet. This was greeted with the saddest, don't do this to me face in the world. The spoon was the enemy. The gross carrot mash was the enemy. Anything baby food related was the enemy. This caused many frustrated days and nights for us (well, mostly Val). Was it a sign of developmental delay? Was it the reflux? Was it the constant teething? Was it remembering mouth pain? Probably yes to all.

Carter has been seeing a pediatric occupational therapist along with a pediatric physical therapist for the last three months, and we have seen great strides in many areas. Since pediatric occupational therapist is a long title, we call her the hippie lady for short. The hippie lady is not a very nice person. She is very crunchy, and you would probably see her at a Grateful Dead show on weekends. Why is she not a nice person?  Her judgmental comments frustrate Val. And to suggest that all our pictures need Photoshop because of his red, eczema covered cheeks did not endear her to us. That being said, the hippie lady has done many, many mouth exercises with Carter and suggested certain oral stimulators that we are starting to see pay off!

About six weeks ago, we (Val) put away the spoon and baby food. We went for small pieces of soft food, and used our hands. Within days, Carter started eating off our fingers, and not giving us the bitter beer face. He loved grilled cheese, bread, and any carbohydrates. Finally some victory with food! Maybe the hippie lady knew what she was doing after all.

Today Carter is back to using the spoon, eating the second stage baby foods, enjoying bananas, grilled cheese, and other foods. We may have turned a corner, and he seems to be engaged in eating! Small victories are so worth it.

little messy, but full and happy

That brings me to my topic. Carter doesn't like any type of meat. Turkey, chicken, beef, he's not into it. This is a battle we are happy to face. Be picky, but at least eat. We can work on this!

Val has been so frustrated, but never gave up. She is a blessing to have as a partner in this journey. Thanks love for all of your hard work .

Eczema - the bane of my existence

It may sound crazy, but of all the stuff we've been through with Carter surgeries and delays, I have to say, the most difficult thing to deal with has been his eczema. He's almost a year old, and we've been dealing with it almost his whole life. It's mostly on his cheeks, although he does sometimes have flare ups on his knees and elbows. We've tried every lotion, cream, soap, oil, etc. We've changed detergents and shampoos. We put gloves/socks on his hands to keep him from scratching his face and drawing blood. I cut and file his fingernails a couple times a week. And with all that, he still looks like this.



and this isn't even that bad. we don't take pictures on the bad days

Honestly, I think he would be the world's easiest kid if we weren't constantly dealing with the eczema. While falling asleep or if he wakes up in the middle of the night, he scratches his face raw. So while I could just let him self soothe, instead I have to stand near the crib and keep his arms tucked under the blankets or keep the socks off his hands (he's recently learned to get them off with his teeth). During play time and eating time, we have to constantly keep him entertained so he doesn't scratch. Anytime he's bored, tired, or grumpy, the first instinct is to scratch. And while trying to keep his hands away from his face, I regularly lose my patience and occasionally lose my mind.

Helmet, Month 1

We've got a little over a month of cranial remolding (helmet) under our belts. And let me tell you, that thing is starting to STINK. And I thought my old catcher's helmet was gnarly. We get to give it a alcohol bath every night to kill the bacteria and we can wash it to help the smell, but there's really no way around it - anything you wear for 23 hours a day, every day is going to stink.

Good news is, Carter seems completely adjusted. He sleeps through the night and is getting better at managing the extra 1/2 pound of weight on his head. He's moving pretty good - thanks to our awesome PT, Ami and lots of hard work at home.

We had a check up last week and the Orthotist is happy with the head remolding that's happening under the helmet. But he'll still probably have to wear it for 5-6 months total. So we're looking at having it all summer long. So we apologize if you smell us coming. At least he looks cute in it though...

Happy Easter

We celebrated Easter with the Jorritsma family today. Also, it was the Maestro's birthday. Happy bday, Dad. And to top of the festivities, we celebrated all the April birthdays - including Carter.

Happy Easter

Opening some early birthday presents

 Happy 1st Birthday (he got to try a little cake)

Having fun with the cousins

Who's that cute kid in the helmet?

Carter has been wearing his cranial orthotic full time (23 hours a day) for the last week. He adjusted to it pretty easily (not surprising since he's such a good tempered kid). He doesn't mind it at all during the day. I think it's a little uncomfortable for him at night. He'll wake up once or twice a night and just needs to move around and get comfortable. It is making it more difficult to roll around and hold his head up. It's taking a little longer to adjust than I was hoping, but we're back in PT tomorrow, so we'll keep working on it.

For the most part, he's recovered from the surgery. He's off all meds and doesn't seem to be in any pain. We'll have a check up with the surgeon in a couple weeks, but all looks good at this point.

He must be feeling better because we had quite a growth spurt this week. He was hungry all the time and was taking good long naps. At 10 months old, he loves bananas, strawberries, bread, cheese, and whatever we're eating for dinner that I put in the grinder. He's still not a great eater, but he likes his finger foods. If only he would feed himself. He'll pick up all the food and play with it, but won't put it in his mouth. That's what we're working on in OT. Hopefully we'll have some of this stuff handled before he turns 1.

Surgery Update

Surgery was successful! Praise the Lord! Carter did great, surgeons did great and everything went as expected. They were even able to get us in right away for his MRI so we got to go home that afternoon. Carter is in a decent amount of pain. They gave us a perscription for Tylenol with codeine, but it tastes horrible. Man I hate giving kids medicine.

Surgery, Round 3

This week we head back to CHOC for another surgery for Carter. He has a couple minor issues we've been watching for a few months and it's time to fix him up. He has an undescended testicle and a hydrocele that they will be correcting. Surgery is scheduled for 7:30 and will be approximately 90 minutes. It's normally an outpatient procedure, but because of his other conditions, we'll have to stay the night so they can monitor him a little closer. While we're there, our neurosurgeon is ordering an MRI for a 6-month post-op look at how the shunt is working.

We appreciate your prayers for Carter (and us) during his surgery. Specific things you can pray for are:

• Please pray for our surgeon, Dr. MacAlear for her mental and physical sharpness.
• Please for strength and peace for us as parents during the procedure as well as the hours before while we try to keep Carter calm despite 12 hours of no food or drink.
• Please pray that the surgery will be smooth with no complications.

Good News, Bad News

We saw both Carter's neurosurgeon and cardiologist this week. The good news is, we had great check ups at both. His heart looks great and we don't need to go back for 6 months. Dr. Muhonen (neurosurgeon) said his shunt is working perfectly. However, the bad news is, Dr. M. recommends Carter wears a cranial orthotic (helmet) to reshape his head. Because of the extra time he had to spend on his back recovering from heart surgery and his delays in sitting and rolling, his head has gotten too flat in the back and he's worried it'll put too much pressure on the shunt. So on Thursday we went to get fitted for the orthotic. He'll have to wear it 23 hours a day for 4-6 months. And to top things off, we found out that insurance won't cover it because it's considered "cosmetic." Awesome. Exactly what I wanted to spend our tax return on.

So it was a little bit of a frustrating week. But I'll focus on the fact that the check-ups were positive. We'll take a helmet if it means no more brain surgery for a while.

Therapy time

After seeing the pediatrician for Carter's 9-month check-up, we got a prescription for physical and occupational therapy. We've been going for two weeks and already seeing some improvement.

Our Physical Therapist is working on sitting and crawling. He has the strength and head control he needs to sit up, but is still can't brace himself when he starts to fall. Crawling is a ways off yet, but he'll get there.

In Occupational Therapy, we're working on eating solids. He currently hates it - possibly due to his reflux, but we're not really sure. We're also working on his range of motion along with other tasks like grabbing small objects, playing with two toys at once, clapping, etc.

Stay tuned as he learns all kinds of new tricks in the weeks to come.

The Back Story

On April 29, 2011, Brad and I became parents to the best little guy in the world. Carter changed our lives and made every day so much better. He was a happy, healthy and completely lovable boy. 

 

Life was "normal" for all of about 3 weeks. After that, lots of little things started coming up and we went back and forth to the pediatrician as Carter developed suck-swallow issues, reflux, excema, blocked tear duct, etc. Nothing too series, but enough to keep us on our toes (and sleep deprived).

3 months old

Then around three months of age, we noticed Carter's head seemed to be growing too large too fast. So it was back to the pediatrician to figure out what was going on. He sent us to a pediatric neurosurgeon who diagnosed Carter with Hydrocephalus (read more about this condition here). The very next day Carter was in surgery at CHOC to have a shunt placed in his head to drain the excess fluid off his brain. We were in the hospital for four days and during this time we learned A LOT about what this diagnosis means for Carter and us. Carter will have a shunt in place for the rest of his life and will probably have numerous surgeries over time to replace or repair the shunt as needed. We will have to constantly monitor his health to make sure the shunt continues to work properly - a fever spike, headaches or vomiting could mean there's a blockage or infection and we're back in surgery immediately.

Carter before his surgery. 4 months old

Carter recovered remarkably well after the surgery. With the excess fluid and pressure relieved from his brain, he was as happy and active as we had ever seen him. He was all smiles and laughs. It was so incredible to see.

5 months old

While in the hospital for his shunt surgery, the doctors discovered Carter had a fairly large VSD (hole in the heart). This is a somewhat common heart defect. Many kids are born with this and the holes sometimes close on their own. Two months later, when Carter was six months old, the cardiologist determined that the VSD was not closing on its own and Carter was quickly heading to the point where he could have difficulty growing and gaining weight due to the strain on his heart. So another surgery was scheduled. In November, we were back at CHOC for open heart surgery. Everything went very well and once again, the surgery was successful and the recovery exceeded all doctors' expectation. Such an amazing answer to prayers.

In the hospital after heart surgery. 6 months old

The recovery after heart surgery was four weeks of limited movement with Carter mainly laying on his back, but it was so encouraging to see him slowly gain back his strength and mobility. In the months since surgery, his cardiologist has given him a clean bill of health. The heart has healed completely and he will be able to have a normal, active life.

9 months old

Due to the surgeries and recovery time, Carter is a little behind on some of his major physical milestones. He's having difficulty sitting and holding his head up, so he's currently in Physical Therapy and Occupational Therapy once a week to try and get caught up. Therapy and doctors appointments are definitely keeping us busy these days but it's worth it. We are so blessed and amazed by this strong little fighter. And by the love and support we've received from all our friends and family.