Honor Corbin and Save a Life: Guest Post from Ruth Caruthers

We are on vacation this week with very limited Internet access but not to worry… I have something very special planned. My friend Ruth Caruthers has kindly agreed to guest post today.

Since getting Bean’s Williams syndrome diagnosis, I have met many wonderful WS parents with compelling stories and compassionate hearts. I have been touched by so many of their stories but none more than Ruth and her sweet little Corbin. Corbin’s life was short but he inspired so many and Ruth is now an amazing advocate for children with congenital heart defects.

Please read this very important post from Ruth and share it with everyone you know. It may save your child’s life - or a child you know and love. Then, please go read Ruth’s story at www.thecorbinstory.blogspot.com and www.life-afterloss.blogspot.com. 

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Pulse Ox.

Many people have had this done but don’t know what it means. To me it means saving a life.

Pulse Oximetry is a simple, non-invasive procedure that measures the percentage of oxygen in the blood by placing a band around the foot or hand with a red sensor. The sensor beams light through the blood and can measure the amount of oxygen. If you have been admitted to the hospital for any reason, they have done this test on you. Remember the plastic clip they put on the end of your finger? That’s pulse ox!

What you may not know is that pulse ox can be used to detect heart defects in newborns. Congenital heart defects are the most common defect in newborns and affect about 1 in 100 babies. (https://www.facebook.com/#!/1in100 ) Although they are so common, only three states are required to test for heart defects at birth, Indiana being the most recent thanks to efforts by Kristine McCormick (www.pulseoxadvocacy.com )To see if you state is one of them, visit (http://www.cchdscreeningmap.com/ )

Heart defects range from a mild murmur to serious deformities and complications that are life threatening. Pulse ox can detect most heart defects because blood flow and oxygen percentage are affected. If the oxygen levels in a baby are less than 95%, the baby will be tested again and checked for heart defects. Hospitals run a wide variety of tests on newborns ( http://genes-r-us.uthscsa.edu/nbsdisorders.pdf) but still do not test for the most common defect out there. It is my goal, and others, to change that.

My personal reason for doing this is my son Corbin. He was born with Williams Syndrome (http://www.williams-syndrome.org/what-is-williams-syndrome ) which caused serious heart defects. He was five days old when we found out he had in interrupted aortic arch and that he needed to be put on medication to keep his aorta open or he would die. For the next 81 days, he would be in the hospital fighting for his life. He underwent three heart surgeries, the first at 9 days old, to try and fix his heart. He touched a lot of people during his stay, but in the end, God took him home. He is no longer in pain and his heart is healed but I miss him every day.(http://www.thecorbinstory.blogspot.com)

 I decided, not long after he passed, that if I was chosen to be the mother of an angel baby, that Corbin would not die in vain. I decided from that moment on I would try to make in difference in Corbin’s memory. It was then I started advocating for pulse ox screening in hospitals. My son was not screened at birth and he is not the only one. Many children go home untested and for some, it is too late. (http://www.corasstory.org/ ) I am fighting for every child out there, that they may have the chance to live. No mother should have to bury her child.

If you want to help, here (http://pulseoxadvocacy.com/efforts-by-state/ ) is a link listing the advocates for Pulse Ox by state, through Facebook. Feel free to contact them and ask if you can join the cause (we are also on Twitter! @pulseoxwv.) Another way you can help is simply by spreading the word! Also if you are pregnant, or a new mother to a little one, ask your doctor or pediatrician to run a pulse ox test on your baby. It’s cheap, painless, and takes seconds. Most importantly, it saves lives. 

Vacation!!!

This morning, the dudes were transfixed by the rain.

This afforded Husband and me the brief opportunity to get a little bit of packing done while they were distracted. We leave for vacation tomorrow morning and are known to be terrible procrastinators.

Once the rain cleared, we headed out to run some errands and spent the rest of the day occupying the kids, getting them to nap (well, Bean napped. Baby J declined.), cooking, doing laundry and of course, more packing. 

Baby J is so excited that I had no problem convincing him that he needed to go right to sleep tonight. And he did!

He's been talking about the beach for a month now and is just beside himself that he's going tomorrow. He's even excited for the drive with the promise of lots of games, songs and movies. Once we get there, he'll have a blast playing with his cousins and enjoying the sand and surf and we'll have a hard time getting him to leave when it's finally time to return home. He had the time of his life last year and I'm sure this year will be even better.

I'm a little more nervous about Bean's reaction to the beach. I know he'll love the sound of the ocean because he's use to waves on his white noise machine but he is not a fan of bright light (sun), wind or different textures (sand) on his hands and feet. I got a few tips from his OT to help desensitize him from the offending elements but still, I'm hoping that he'll surprise me and love the new experience.

If not, that's ok. I actually prefer to be in the air conditioning relaxing with a book. 

I'm looking forward to the seafood. Last year, I wasn't able to eat at restaurants because my diet was so restricted. This year, I have a lot of options. Bean "passed" fish and shellfish (in my diet) a while back and we are finishing up week 2 of 3 of our dairy trial right now. We're taking it easy because I'm seeing some signs that dairy may still be an issue but nothing concrete - it could easily be something else causing some issues for him so I need to continue the trial. Regardless, I get to have crab legs with butter. Yum!

I'm also looking forward to taking advantage of the plentiful (family) babysitters and heading out to see Harry Potter with Husband. I don't remember the last time I saw a movie in the theater and I'm a big HP fan so I can't wait!

While we're gone, I'll have limited internet access. I do, however, have something very special planned. Check back Monday morning for a very informative and important guest post. If possible, I will try to update during the week but if not, you can look for brief snippets on my twitter (@babyjandbean) or my facebook page. 

It all worked out in the end...

Baby J has turned in to a pretty decent sleeper. He usually even sleeps in until 8:00 or 8:30. Not yesterday.

He woke up at 6:30 in tears. He was so frantic that I had trouble making out what he was saying until I got to his room (with Bean sound asleep in my arms - he doesn't sleep anywhere else, remember?!?!).

I want to go to sleep by myself!

I want to go to sleep by myself!

I want to go to sleep by myself!

Um, ok. That's not a problem for me!

So, I (gently) told him to lay down and go back to sleep. I started to leave the room when he layed down but then he started crying again.

I need my water!

I need it now!

My water in the blue cup. I need it now!

Um, ok. That's not a problem either.

So, I gave him his water (Bean still sleeping in my arms) and told him, again, to go back to sleep and headed back to my room with Bean.

I'm guessing he must have had a bad dream. Baby J did, indeed, go back to sleep. He slept until his usual 8:30. Bean never even stirred. I even went back to sleep - and that NEVER happens once I'm up. So, it all worked out in the end...no big deal.

Bleeping Teeth

Bleep. Bleepity-bleep bleep bleep. Bean needs dental surgery. Bleep!

If you are familiar with Williams syndrome, you know that dental problems involving enamel and shape/spacing among other things are very common.

From the moment Bean's first top teeth popped through, even before his WS diagnosis, we knew that his teeth looked different. They looked marble-y, if that makes sense, and they were oddly spaced. We asked some of his doctors about going to the dentist repeatedly, even after receiving the diagnosis, and they suggested holding off since he is so young, uncooperative and he has a severe oral aversion. I went along with it. I shouldn't have. But I did.

About one or two weeks ago, I noticed that his two top incisors were beginning to crumble. They were literally falling apart. And the two top front teeth looked like they were soon to follow. So, I called and scheduled him with the pediatric dentists at Children's. They specialize in kids with special needs (though they do treat typically developing kids, too - Baby J will be going there soon!).

Bean was (really) unhappy through the (brief) exam. The dentist confirmed that he has enamel issues and his top four teeth are in bad shape - probably made worse when his reflux was uncontrolled. The two incisors need to be extracted and they are going to try to save and cap his two front teeth (with white resin caps - not metal caps, thank goodness). She felt the rest of his teeth look good but she wasn't able to get a great look.

Because he is so young and so uncooperative, they need to do the work under general anesthesia. They will do any/all repairs/extractions at that time and they will also do a cleaning and x-rays. This is a good thing, I guess.

He has been under anesthesia twice before (pre-diagnosis) - once for an MRI and once for an upper endoscope - and he did fine but it still makes me nervous. 

Any time a child goes under anesthesia it is risky (and scary!) but it's even riskier for someone with Williams syndrome and associated congenital heart defects. The good thing is that we met with his diagnostic referral physician yesterday, too and she is consulting with Bean's cardiologist and she is setting up a meeting for us with the anesthesiologist to make sure we have everything covered. In the meantime, I am reading up on the risks and protocols so I can properly advocate for him.

The surgery is scheduled for early September unless he gets an infection, in which case we will bump it up. I'll be updating as the date gets closer.

At the referral doctor, we also got orders for another kidney ultrasound. The one we had in February was not done with doppler so they did not look for renal artery stenosis - another common concern for WS patients. Renal stenosis can be a contributing factor or cause of hypertension. In the past Bean's blood pressure has been high and they need to rule it out. Fortunately, his bp was reasonable yesterday. Hopefully it will stay that way. Regardless, we will be having the ultrasound done when we get back from vacation.

Bean had a rough day and he was exhausted when we got home. He's doing much better today and we are resolved to not letting us stress (too much) about his upcoming surgery.

Sleep, baby, sleep!

It is very common for people with Williams syndrome to have sleep problems. Bean is not an exception. As a matter of fact, he is an absolutely horrible sleeper.

I am quite confident that he could stay up and play all night if he didn't take melatonin, but the problem with that is that it doesn't help him stay asleep. Until very recently, he was waking up every 1-2 hours through the night and demanded to nurse at least 3-4 of those times. No, I'm not exaggerating. I wish I were. Husband and I are beyond sleep-deprived.

I've been going along with the feedings because he has so many difficulties with food and gaining weight and his doctors didn't want to deny him the calories.

Recently, though, Bean has started sleeping for a 4-5 hour stretch following his melatonin and then wakes up every 1-2 hours after that. He still needs to be held and will only sleep in bed with me but I'll take any progress I can get (he's sleeping on my lap right now). I know that part of his sleep problems are physiological in nature but there is definitely a behavioral component going on. 

Because he's been going that longer stretch and he's been eating a bit better during the day, I have decided to (finally!) attempt night weaning and I'm so excited to say that he has gone two nights now without nursing. He is still waking up and fussing a bit but I'm able to get him back to sleep without feeding. This is a huge deal for us!

I feel that this gets him (and husband and me) one step closer to independent, restful sleep. My thinking here is that if he doesn't get what he wants, he'll decide it's not worth it to wake up so frequently. 

Our next step will be to get him in his own bed. I think that will be a bit more tough but I'm setting a goal to make the transition by his 2nd birthday at the end of August. We are going on vacation in a week so I'll wait to rock that boat until we get back.

And speaking of vacation, I have teamed up with a good friend and blogger. While I'm gone, she will be featured here in a very special, important and moving guest post. Please watch for that!

Anyway, I am so proud of the progress Bean has made and I can't wait til the day that I can announce that he is sleeping through the night in his own bed. Until that time, though, I'll keep celebrating his sure but steady inchstones. And really, I must admit that I do enjoy my sweet, cherubic, sleeping child snuggled up next to me every night. Sleep, baby, sleep.

Cheese, please!

Earlier this week, I took Bean to his check up with his GI. His reflux continues to be under control, for the most part. He has flares here and there but always stabilizes. He's already on pretty healthy dosages of Nexium and Pepcid so we are going to keep an eye on it for now instead of changing his meds. Though Bean is very small in comparison to "typical" kids, Dr. C is happy with his weight.

I was looking forward to this appointment because I wanted to get his input on trialing dairy and gluten. I have held off on these two because dairy has been the hardest on his tummy historically and I have heard from another GI that people with Williams syndrome (WS) are at greater risk for Celiac disease. So, I only wanted to proceed with Dr. C's blessing. 

Bean has a number of food intolerances and we have both been on a very strict elimination diet since he was 3 weeks old so that I could continue to breastfeed him. Recently, we've been adding foods back in to our diet and Dr. C was pleased to hear that we have had success with eggs and fish in Bean's diet and almonds and shellfish in mine.

He suggested trying dairy first because we will know faster than gluten if it's a problem. Apparently, it can take months to really see the impact of gluten intolerance. 

The plan is to try dairy for 2-3 weeks. If there's a problem, we will need to allow time for Bean's tummy to heal before introducing gluten. But if it goes well, we can do gluten in 2-3 weeks and then we will do blood work to test for Celiac's two-three months after we begin the trial. The biopsy that he did during Bean's EGD last summer isn't valid because Bean was gluten free and the body needs a challenge to test positive for Celiac disease.

So, we started the dairy trial a couple of days ago. So far, we have cooked with butter and Bean and I have both had small amounts of cheddar cheese (hard cheeses and yogurts have less casein - one of the dairy proteins - than soft cheeses and milk). I also gave him a small amount of cow's milk yogurt mixed with his coconut milk yogurt yesterday and then again today. We are taking it very slow, with very small amounts. He's a little gassier than usual, but so far seems to be doing well. As a matter of fact, he seems to be doing better than me. My body is having a difficult time adjusting to dairy again. I find that kind of amusing considering I use to be addicted to cheese.

We'll continue to take it slowly but I am cautiously optimistic that we'll be eating lots of cheese again soon and we'll be able to try gluten in August! Who knows, we might even be eating pizza by September!

Whee! It's Wordless Wednesday!

Who is this kid?

Last week, when I took the kids to the grocery store, Baby J noticed the veggie trays and begged me to buy one. 

Who is he?

This is the kid that is a junk food connoisseur. He begs to go through any drive through he sees, even if he just ate a fulll meal. 

This is the kid that, early on, would not consume a vegetable to save his life. I had to hide veggies any way I could and came up with some magically healthy creations like oatmeal, applesauce, zucchini, carrot, raisin muffins and hamburgers with tons of shredded veggies mixed in. 

What I eventually came to realize was that he just doesn't care for cooked vegetables - except corn (the kid is obsessed with corn). Any time he sees me cutting veggies for meals, he asks for some. Raw. This kid likes his veggies raw. And that's great - even healthier!

So, when Baby J asked for the veggie tray, I happily obliged. The fact that it was on sale for $1.99 only sweetened the deal. Actually, if it wasn't on sale, I would have just bought the veggies and made my own tray, but I digress...

For the last few days, at each snack time, he asked for some of his "special snack" and I was thrilled to give him a snack that I thought was pretty special, too!

Eating My Words

I'll never do that.

I can't tell you how many times those words have come out of my mouth. But I can pretty much guarantee that each time they have, I've had to eat my words.

I'll never get married.


Check.


I'll never have kids.


Double check.

I'll never let my kids do that/behave that way/get away with that.


Triple check.

And those are just a few.

My most recent I'll never/eat my words moment came to fruition this week. You see, we've needed a bigger car for some time now. I've been driving a Jetta for the past six years and while I loved it (really, really loved it), it just wasn't cutting it anymore. I always said that I would never, never, never buy an SUV - or even worse, a loser cruiser mini van. But, something had to give. And yes, you guessed it. Husband and I traded in my Jetta this past Tuesday and bought a - wait for it - loser cruiser mini van.

Ultimately, we decided we wanted a third row and SUV's that we liked were just not in our budget on a single income. We ended up with a Town & Country and because of the awesome deal we got on my trade in and Husband's work/employee benefit/discount, we were able to get a model with the bells and whistles I was use to in my Jetta (Heated seats. I'm obsessed with heated seats.) Plus, we were able to get some other great features like electronic-open side doors (Can I just say I LOVE the automatic sliding doors?!?!) and lift gate (Baby J calls them robot doors - so cute!), a back up camera and a hard drive for music.

Baby J is absolutely in love with his new car (and all of the buttons and gadgets) and Bean is enjoying the space (and distance from his grabby brother). We did have a brief period of Bean fussing incessantly until we figured out that he doesn't like having his own little vent blowing air directly on him. But that was easily resolved.

I do miss my fun Jetta a bit, but I am now over the I'll never element and like all of my other eat my words moments, I'm ready to embrace and be excited about this new level of comfort, convenience, space, and even uncoolness of my fancy new loser cruiser mini van.

How about you? Tell me about a time you've had to eat your words...

Earmuffs in July

I took a little break from the whole blogging/facebook/twitter thing for a couple of days but I'm back!

Last weekend, we visited my family for the 4th of July. The fourth is my grandmother's birthday, so we go for a family cookout every year to celebrate.

The drive went well - with the exception that neither kid slept. That's nothing new for Baby J but Bean usually sleeps. I think he's just getting more and more interested in what his brother is doing, so naps are not a priority for him. 

We got there around four on Saturday and just took it easy until it was time to go out to dinner.

Yes! I actually got to go to a restaurant AND eat there! My mother knows the chef so she arranged for an allergy friendly meal for me. It was pretty darn good!

I was glad that we decided to feed the kids before we went to dinner because Baby J refused to even taste the pizza he begged for and Bean just nibbled on his crunchies. 

Despite being tired from missing his nap, Baby J was in a good mood. Bean was a different story. He was irritable and overstimulated. He didn't want to sit in his booster and wanted to run all around the restaurant.

Eventually, I decided to try his new noise reducing earmuffs since it was noisy and busy. I bought them last week from Amazon last week because I am noticing more and more how much noise is bothering him. (Hyperacusis is a common trait of Williams syndrome). Anyway, the second I put them on, his face transformed from a grimace to a brilliant smile. He experimented with taking them off and putting them on and he got the hugest smile each and every time he put them on. He was able to calm down and hang out with the family for the duration of the meal. These things are seriously amazing and he looks like a little rock star when he has them on.

The kids crashed as soon as we got back to my mother's and Bean slept in the next morning.

Sunday, we spent the day at my grandmother's house for the birthday/4th party. 

Baby J spent the day in the pool with his cousin and pappy. He had the best time and is still talking about it. 

I was surprised that Bean wasn't interested in the pool. I think the water was too cold, and again, it was too noisy for him. Husband held him in the pool and Bean was fine as long as he didn't actually touch the water. When we were sitting around the pool, I decided to try the earmuffs again. And again, they worked like a charm. I am absolutely in love with these things and won't go anywhere without them, now.

We drove back on Monday. Baby J was sad to leave but is now looking forward to our (extended) family beach vacation in two weeks. The whole family will be there (like 20 people!) and he will love every second of it. Bean will enjoy the crowd, too but you better believe I'll be bringing the earmuffs along!

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Also, in case you didn't notice the neat little widget thingy on the right side bar, I recently started a facebook fan page. If you like this blog, please go "like" my facebook page by clicking on the "like" on the right sidebar OR you can go to the facebook page directly and like it there: http://www.facebook.com/pages/Adventures-with-Baby-J-and-Bean/116356018455799 . Thanks for your support!

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Oh, and one more thing. My camera died. Insert sad face here. So, for now, any pics will be grainy iPhone pics. Not to worry, though. I have a new camera on the way. It shipped yesterday. Hooray! It's nothing fancy. I'm not a photographer in any shape or form. But it's nicer than my previous one and I'm excited for it to arrive. I'm sure I'll be doing lots of experimenting with it and will be posting lots of pics soon!

Empathy

Bean did the cutest thing today. Ok, well, he did a lot of cute things but one action was especially heart warming.

After his nap, Bean was climbing all over Husband playing like a cute little monkey. He (accidentally, obviously) hurt Husband. When husband vocalized the pain, Bean stopped, rubbed Husband's face and smiled at him.

We recreated the scenario to see if Bean would respond the same way or if it was just a fluke. When Husband started fake crying, Bean stopped playing and gave his daddy a hug!

I guess that amazing empathy that is characteristic to Williams syndrome is beginning to emerge.

If you are interested, I wrote about personality traits characteristic to Williams syndrome here.

Bean is such a sweet little guy and it's so exciting to watch his development and the emergence of his amazing personality!