Thursday, March 31, 2011

I'm not sorry


I took the boys for a walk yesterday morning even though it was a little (ok, a lot) chilly. It was one of those days that we just needed to get out of the house. While we were walking, I was thinking about all we have been through in the past year and a half. I started thinking about all of the responses I've had from friends, family, perfect strangers - anyone really - about Bean's circumstances. I get a variety of responses from people and I am surprised at times by my (mostly unspoken) reactions because for the most part, I would probably be saying the same things if the shoe were on the other foot. I truly appreciate everyone's care and concern and thought it might be interesting, to read what I am feeling about these things.

I don't know how you do it./I could never do that. This statement is usually in response to the diet I've been keeping for the past 19 months or to Bean's atrocious sleep problems and my resulting lack of adequate/quality sleep. But I've also heard it in relation to parenting a child with delays and/or disabilities. My reaction? Yes, you absolutely could and would do it (whatever "it" is). As a parent, you do anything and everything possible - no matter how extreme – to get or keep your child happy and healthy. I am not a martyr. I am not super-mom. I am simply a mother with a child that has some pretty intense needs and I do everything in my power to meet those needs. I do it because I have to. He is my child. Sound familiar? It should. That's what parents do.

But you are doing so well. I'd be a mess. This is usually about Bean's delays, food issues, and/or his Williams Syndrome (WS) diagnosis. I was a bundle of nerves before getting the diagnosis. I was always stressed about whether or not Bean would grow out of his issues or if they were here to stay. Getting the diagnosis was actually a relief. We finally had answers. Don’t get me wrong. The news was devastating and I was an emotional wreck for a couple of days. I still have occasional moments when I want cry, scream and yell about how unfair life is for me and more importantly, him. But you know what? This isn't the end of the world. This is not the worst thing that could ever happen. It is a blessing to have this sweet boy in my life and to have the opportunity to parent him. It won't help anyone if I can't keep it together. I need to be ok for myself and my kids. I have accepted Bean's diagnosis and everything that goes along with it and I am moving forward with every treatment, therapy, and tool available to make his life as happy, independent and fulfilling as possible.

I'm so sorry. I feel so bad for him. This was fine when I was talking about his digestive problems or lack of sleep (I feel sorry for myself over the lack or sleep and yummy foods!) or some other relatively minor symptom. But when it comes to Bean having Williams Syndrome, I really struggle with this comment. Ok, yes. I did go through a mourning period - and it will probably continue for some time in some shape or form. But that's about me and my wants. I mourned the life that I had wanted for him. You know, the life everyone wants for his/her child - straight A's, most talented athlete/artist/musician/whatever, prom king/queen, rich, famous, married or partnered with two kids - a boy and a girl, a large home and a white picket fence. Seriously though? That's not real. That doesn't happen for anyone. At least not anyone I know. He may achieve some of those things. He may not. It doesn't matter. I have accepted that fact that Bean's life is going to be different than what I had hoped for him. No one wants their child to have a disability. Still, just like any other child, he will (continue to) be happy, loved, appreciated, embraced and supported to be everything he wants to be and do everything he wants to do. His life might not be what I had wanted but it will be absolutely perfect for him. No one's life course is guaranteed and I just learned this lesson a little early in my parenting experience.  I don't ever want him to feel that there's a reason for him to pitied or considered less than anyone else. Because there's not. He’s still here. He’s relatively healthy. He's an amazing little boy that charms and surprises me every day. Please don't be sorry for him. I'm certainly not.

Tuesday, March 29, 2011

Perspective

For the most part, I do a pretty good job of keeping a positive outlook for my life and circumstances. But, but, but...I have been feeling sorry for myself lately. My kids and I have been sick, they don't sleep well, they don't eat well and Bean's delays and sensory issues get me down at times. Husband's bus got cancelled which means more money and later nights. I think about going back to work often and then I feel bad for wanting that. Nothing that bad, just whine, cry, boo, hiss...

Then, something puts my life in perspective for me. Today, a Williams Syndrome (WS) mom posted this link on facebook. The link is an article about a young family facing a very challenging time with grace and optimism. Both the mother and father were diagnosed with cancer within nine days of each other. She has stage 4 metastatic breast cancer and he has stage 3 colorectal cancer. They have an 18-month old daughter. They are chronicling their story here. To add even more perspective, the mother that posted this story has a one-month old son with WS. He has spent almost all of his life in the NICU and has already had open-heart surgery. Her story is here and her positivity and optimism is truly inspiring.

After reading these stories, I am reminded that I am no worse off than anyone else. We all face challenges and we all have bad days. I have a three-year-old that behaves live a beast sometimes. My youngest son has WS and related minor health issues as well as developmental issues. He will always have health risks and will likely have intellectual disabilities. I don't remember the last time that I slept for more than two consecutive hours and I don't remember the last time I was able to eat at a favorite restaurant or enjoy a glass of wine. I deal with the daily frustrations and challenges just like everyone else. Boo hoo, right?!?!

In reality though, I have two beautiful, amazing and (relatively) healthy little boys. I have a wonderful, supportive husband that has worked his butt off for the past two years so that I could stay home with our kids for now. We have the best support network of family and friends and an outstanding team of doctors and therapists. When the time is right, I have the education (thanks, mom!) and experience to find a reasonably paying and satisfying job. I have my health. I have my home. I have my life.

I don't personally know the mother that posted the link above. I only know her from a facebook support group for WS families and from her blog. But I appreciate her sharing the Bond family's story and reminding me that we all face challenges, heartbreak and heartache. I am also inspired by her positivity and by they way she advocates for her sweet son. The stories helped put my life in perspective. It's perfectly normal to have rough days and get caught up in all of life's drama. But in the end, I love my family. I love my boys (husband too!). And I am grateful for all of the support from family and friends as we work through life's little quirks.

Monday, March 28, 2011

Pass!

He passed!

Bean has a number of food intolerances that result in a bad stomach ache even with very limited exposure. As a result, he and I - because of nursing - have been on a hypoallergenic diet since he was three weeks old. We are free of dairy/casein, soy, wheat, gluten, egg, fish, shellfish, nuts and tree nuts along with some of the more acidic fruits and vegetables. Any time we trialed any of these foods, Bean failed. Until today! Last week, I mentioned that I reintroduced almonds in to my diet. Exactly one week after starting the trial, we have not seen any adverse effects. I'm calling that a pass!

I have really enjoyed having one of my favorite foods back in my diet. I have enjoyed almonds in a number of ways. Raw almonds. Roasted, salted almonds. Bananas and apples with almond butter. Almond butter is absolutely wonderful. I use Maranatha Almond Butter because the only ingredient is, well, almonds. No additives. No preservatives. Very important for us because preservatives often contain soy which is still a definite "no" for Bean. I also was able to find a ginormous jar of Maranatha Almond Butter at Costco for $5.85 - one jar that is a third of the size costs $9 at Whole Foods. Anyway, I love almond butter.

Yesterday, I decided to try my hand at making my own allergy-free (excepting almonds) granola/cereal bar/cookie thingies. Husband found a recipe in the New York Times some time ago and has been making different variations every week so I adapted his recipe for me. They turned out amazing! I'll list the recipe below, but the measurements are not exact. I'll also list the ingredient brands that I used because other than the almond butter, they are allergy friendly. You can substitute any of the ingredients for any of your favorite cereals, granolas, nuts, seeds, nut butters, seed butters (sun nut butter is typically allergy friendly), fruits in similar proportions. These bars are ridiculously good and I'll be making more soon. Now I just need to figure out what to try next. This pass gives me hope that we will be able to successfully introduce more foods! Now, if only I can get Bean to actually eat something other than coconut milk yogurt... But that's another post for another day.


1/2 Cup Bob's Red Mill Gluten Free Rolled Oats
1/2 Cup Erewhon Organic Rice Twice Gluten Free Cereal
1/2 Cup Maranatha Almond Butter
1/2 Cup Honey
1/4 Cup Unsweetened Organic Coconut Flakes
    I toasted the coconut in the oven for 5 minutes
1/4 Cup Craisins
1/4 Cup Enjoy Life Allergy Free Chocolate Chips

Mix dry ingredients in bowl.

Mix nut/seed butter and honey in pan. Stir over medium heat until blended.

Pour nut/seed butter and honey over dry ingredients. Fold until blended.

Pour mixture in to a brownie pan lined with plastic wrap or wax paper. Refrigerate for one hour. Cut in to squares and store in refrigerator.

Eat them. Enjoy them. All of them. They're good for you. Really!

Sunday, March 27, 2011

Baby Steps

These teeny-tiny feet belong to a little boy, my sweet Bean, who has been putting them to good use. Bean has been wanting to be on his feet for some time now and has been taking baby steps towards reaching his next milestone - independent walking.

At around 11 months, around the same time he started crawling, Bean started pulling up to a stand. Cruising followed a couple of months later. He would take a few steps here and there if we were holding both hands and giving lots of support and guidance with our legs. He would also let go of  whatever object he was holding on to and arms would go up for 10-30 seconds as if to say, "Look at me, ma. No hands!" We would hoot and holler and make a big congratulatory scene. Because we were, after all, incredibly proud of all the progress Bean has made.  

He hung around at that stage until about three weeks ago when he started getting in to a standing position by himself in the middle of the room and would stay up for a good 30-60 seconds. He also started taking more supported steps around the house and even started walking short distances with just one hand held. We continued to talk with his physical therapist about ways to get him on his feet more and get him more support. He has low tone and pronates his feet. In addition to his therapy, we are scheduled to take him to a physiatrist to determine whether he needs ankle foot orthotics (AFOs - aka ankle braces) to give him better support.

In the meantime, he surprised and delighted us this past Thursday evening. When we were getting ready for bed time bath, Bean pulled up to a stand on the ottoman in his brother's room. I offered my hand for him to walk towards me. After two lightly supported steps, I let go fully expecting him to drop to his knees and crawl towards me. But no. Bean took his first two independent steps!!! He surprised himself, too but he was very proud of himself after receiving a tremendous round of applause. It was one of the largest, sweetest grins I have ever seen!

He woke up with a nasty cold on Friday so I expected a halt in the progress. But no. He surprised me again. Every day through the weekend, despite feeling icky in general and getting very little/poor sleep, Bean continued to work on his new trick. He is up to about four steps now. It has taken a long time and a lot of therapy to get to this point, it may still be a little while before he is truly walking, he will continue to need PT and may need a little more structural support than some other kids but he WILL walk on his own. He will do it in his own time and in his own way and his baby steps will become big strides. I am so proud of his effort and achievement and excited for him to reach this next stage of independence.

Friday, March 25, 2011

Seriously???

I had grandiose plans for a post today about my parenting philosophy, specifically my approach to parenting a child with special needs. Alas, it was not meant to be. I woke to two sick little boys. Actually, I was up with one of them all night. And it certainly doesn't help that I seem to have contracted the same virus. Sigh. I mean, seriously... I thought cold/flu season was ending. Can you hear the tiny violins? Yep. That's the kind of post I'm writing today.

Baby J gets a lot out of his weekly preschool class. He has learned to take turns better, play nicely with others, and to sit at circle time among countless other things. Bean and I get some one-on-one time and I get a few things done with just one of the dudes in tow. But that's not all. We are also blessed weekly with icky toddler germs that often ends in at least one of us getting sick. This one hit the three of us and husband thinks he's getting it, too. Nice. It's not horrible. Just a sore throat, congestion, cough, low-grade fever and headache. But that is enough to make my sweet Bean miserable.

He is rarely still. Today is an exception. Bean had a great night last night. As a matter of fact, he took his first two independent steps last night. Then, he was up all night because he couldn't breathe and he couldn't seem to figure out how to breathe through his mouth. That's also causing feeding problems. He is not interested in solids at all. Well, he never is but today is worse. He wants to nurse so bad but can't manage the whole breathing thing. We do the whole saline/nose plunger thing but it only seems to help for a few minutes.

He's also cutting four (Yes, four!) teeth and it doesn't help that every time he gets sick, his reflux flares. Seriously. This kid never gets a break.

He didn't have a fever yet this morning and seemed relatively happy, so we went ahead with his developmental therapy session. He did ok. Played. Stood. Bounced. Vocalized. But by thirty minutes in to the hour-long session, he was ready to be done. So, the therapist and I talked a bit and called it a day. When she left, we attempted a quick lunch and then settled in for a nap. He was beyond ready for sleep and actually slept pretty well. It was the happiest he's been all day. See?


Baby J has the same cold but he's handling it much better. I was worried that he would be a monster during therapy but he just chilled on the couch and watched videos and played games on my phone. He even ate a decent lunch and took a nap. It helps that he understands how to blow his nose and he's able to communicate what hurts and what I can do to help him. He was even in a good enough mood to bully his brother out of his lounge spot on the chair and pose for a few pictures, imitating Bean - only much happier.


As for me? I'm fine. Taking Motrin around the clock and taking it easy. I didn't bother cooking dinner tonight. We can make-do with leftovers. Husband called. Just now. Like 3 minutes ago. And told me that he will be late getting home from work tonight That means a delayed break for me. Oh well, my break, just like my parenting post, will have to wait. Off to cuddle the kids. Seriously. 

Thursday, March 24, 2011

What is Williams Syndrome and Things You Can Do

I have mentioned several times that Bean was recently diagnosed with Williams Syndrome (WS) but I haven't done a great job of defining WS. The best description can be found at the Williams Syndrome Association (WSA) Web site. But in short, it is a sporadic (spontaneous, random, not inherited) deletion of about 20 genes on the 7th chromosome. Individuals affected by WS are blessed with a unique set of strengths as well as several challenges. WS symptoms include heart conditions, kidney abnormalities, difficulties absorbing calcium, developmental delays, characteristic facial features, small stature, and intellectual disabilities. After acquiring speech, it becomes a relative strength and people with WS are incredibly friendly and empathetic. Many also have a strong affinity for music and musical talents. Other challenges Bean has faced can also be attributed to WS. For example, his sleep difficulties and feeding/textural issues are very common issues. There's so much more but the WSA does a much better job describing it than I do.

After learning that Bean has WS, a lot of my friends and family have asked what they can do to help. Here's a few thoughts. And for the most part, these are applicable to anyone with a disability.


  • Get informed. Get involved.
    • Visit Williams Syndrome Association to learn more.
    • Get involved with WS Awareness week or other events. Our family is participating in the Pittsburgh Walk for Williams on May 21 at 10am in North Park. Registration for this walk and information about other walks and events can be found at: www.walk4williams.com.
    • If you can't attend an event, you can make a contribution at the www.walk4williams.com site. If you feel so inclined, you may make your contribution in honor of our sweet Bean. Please note that contributions are used to enhance the lives of individuals and families affected by WS and not to an individual family or person.
  • Be empathetic. Sympathy and pity are not necessary for our family. We prefer to approach Bean's health, development and growth with positivity and optimism. We have accepted, embraced and are moving forward with Bean's dx. However, we appreciate your empathy when he (or Baby J, for that matter) is having a meltdown or just needs some rest and also when we are dealing with countless dr appointments and therapy sessions. I am working on an entire post about this, but it's important to get out there now...
  • STOP using the r-word or engaging in activities that could be considered disparaging to individuals with intellectual and developmental disabilities and insist that others do the same. In any context at any time - even out of my range of hearing. I don't care if you are joking. I don't care if you didn't mean it "like that." It is not funny. It is not cute. It is not just a figure of speech. It is not just a joke. It is not just about being politically correct. The r-word is rooted in history as a negative reference to wonderful, beautiful people that may not be able to stand up for themselves. The word is hurtful and hateful. Plain and simple.
  • Don't be afraid to hang out with our family or ask questions. We are still the same people we were before we got the diagnosis and WS is not a taboo topic. We love and cherish our relationships with our friends and family and value the time we spend with you and we want you to embrace Bean, and everything about him, just as we have.

Tuesday, March 22, 2011

Almonds and Opinions

Bean has a number of food intolerances - not true allergies - rather intolerances that affect his gi tract and give him horrible stomach pains. He is on a hypoallergenic diet which means that we have eliminated the top 8 allergens (dairy, soy, wheat, eggs, peanuts, tree nuts, fish, shellfish) and gluten.  His stomach is so sensitive that even trace amounts in my breastmilk caused him great discomfort. Because I am still nursing, I avoid the same foods. We've been on this diet since he was 4 weeks old. Every time I have trialed one of these foods in my diet, he failed miserably.

Needless to say, it's been a long eighteen months and I am afraid to try new foods because the diet has worked so well for him. I fully believe that continuing to nurse him on a hypoallergenic diet is the reason that we have avoided a feeding tube. His doctor at the diagnostic referral group agreed today. She is also of the opinion (as am I), however, that he is not gaining adequate weight. Bean is not on the growth chart and hasn't been for some time. He continues to gain. Slowly. But it's not enough. I did remind her that there is a separate chart for Williams kids so she is going to look that up and plot him. We are going to look in to some more intensive feeding therapy options to see if we can help him move past his severe textural and oral aversions and continue to avoid a feeding tube.

As I suspected, she also wants us to seek the opinions of an opthamologist, audiologist (follow-up) and dentist in addition to his upcoming appointments with cardiology, gi, physiatry and genetics follow-up and follow-up lab work. We'll be seeking lots of opinions and ideas and she will help us coordinate and manage his (complex) care.

As far as his feeding is concerned though, he is currently in occupational therapy twice per week and sees a nutritionist every other week. We are constantly trying new textures and flavors and also looking for ideas to add fats, protein and calories back in to my diet. Just yesterday, the nutritionist convinced me to try almonds as they are the least allergenic nut. So, we are on day 2 and I haven't seen any adverse reactions from Bean. I will be so excited if I can add almonds back in for good. They are one of my all time favorite foods. There's so many possibilities - (allergy free) chocolate covered almonds, almond milk, homemade granola/almond bars, almond butter - all yum!!! I need to give it another day or two before I consider it a "pass," but we are off to a good start. Maybe if he passes almonds, I'll be more comfortable adding other foods back in. And if he can handle them in my diet, he might be able to tolerate them directly. That would be an amazing source of calories, fat and protein for him and would help us to continue to avoid a tube. So, I'm going to push through this almond trial with continued hopes of avoiding the dreaded tube. Care to join me?

Monday, March 21, 2011

Perfectly Imperfect


Bean has the most beautiful blue eyes. Every time we are out, we get comments on those eyes. They are beautiful, blue, sparkly and full of emotion. They are also a feature of his diagnosis - Williams Syndrome. Every time I look in to his perfect eyes, I am reminded of his imperfections. But isn't that how everything in life is? Perfectly imperfect?

Tomorrow, we head to the diagnostic referral group at Children's. They will review his entire medical record and determine whether we need to visit any additional specialists. We are currently scheduled for follow ups with his gi and cardiologist. We also have an appointment scheduled with a physiatrist to determine whether Bean will need ankle foot orthotics (AFO's - or ankle braces). I am expecting to hear that we will need to visit an endocrinologist, opthamologist and an audiologist and possibly an ENT. But we'll see. All of these doctors will be looking for more imperfections. 

And while they may find imperfections caused by his genetic "errors," I will do my best to remember how perfect he actually is. He faces many challenges but the "error" in his genetic makeup has resulted in the most loving, sweet little boy that makes everyone around him smile - even on a bad day. He looks at the world with wonder and delight. To me, nature got something right with him. He truly defines "perfectly imperfect."


--------------------------------------------

On another note, I wanted to mention that our family is participating in the annual Pittsburgh Walk for Williams on May 21 at 10am in North Park. Please consider joining us or making a contribution to the Williams Syndrome Association in honor of our sweet Bean at www.walk4williams.com. Online registrations in advance of the event receive a discount and are guaranteed a sized tshirt. Hope to see you there!

Sunday, March 20, 2011

Say What?!?!


All kids have a silly streak and Baby J is no exception. Actually, he's silly more often than not and he's been saying some crazy things lately. Here's just a few of his recent "say what" moments:

Baby J: Daddy sleeps in the potatoes.

Baby J: This is a blueberry. Is it like a garbage truck?

Baby J: Can i have blueberries? Please? 
Me: Sure. Hold on a second. Gives him a handful of blueberries.
Baby J: Oooh yummy. Are they magic? Like hocus pocus?
Me: What?

Baby J: What's in your eyes, Mommy?
Me: Um, eyes? 

Bean takes an accidental swim in the bath tub. Gets a mouthful of water. Cries. Hard. For a second. He's fine. Baby J cried even harder.
Baby J: Oh, my baby. My poor baby.

Me to Husband: I need to clean Baby J's ears tonight. I noticed some ick in there today.
Husband: Baby J, do you have potatoes growing in your ears?
Baby J: No. I don't like potatoes anymore!

Friday, March 18, 2011

Sleep... or not...


I take a lot of (poor quality, low light, phone camera) pictures of Bean while he is sleeping. Mostly because he doesn't sleep well. Or often. And I want to capture those fleeting moments. But also because I can't resist that innocent, sweet, cherubic face.

Have I mentioned that Bean is a terrible sleeper? He always has been. The longest he has ever slept is five hours and that has happened twice in his life. Most nights, he sleeps in one - two hour stretches. He also insists that he sleeps snuggled up with me. If I put him down, he screams and cries so bad that he makes himself sick. It makes his reflux 100 times worse than usual and I'm not a huge fan of the whole cry-it-out thing anyway. That and we think it's his reflux that's waking him up anyway. So, I've given in. I hold him when he sleeps. Even for naps. Needless to say, I don't get much done. Nor do I get much/adequate sleep.

We've tried many approaches. Melatonin. Deep pressure. Massages. Music. White noise. Co-sleeper. Tent over bed (he likes the whole closed-in thing). Pillows. Heat. You name it. None of it works. He does snore and startle and gurgle a lot so we did a sleep study. No sleep apnea. Just a lot of unexplained wakings. Well, not really unexplained. The doctors and I agree that it's the reflux – and of course there’s a behavioral element. He doesn't eat enough during the day so he's always hungry, too. He is soothed back to sleep pretty quickly with some hugs, pats and rubs – and if that doesn’t work, nursing does.
We started him on another reflux med at bed time and it has helped a wee bit. He has had a couple of three-hour stretches of sleep since starting the additional med.

As much as I don't want to think about "sleep training," I think that's the direction we are headed. He needs sleep and so do I. I know that. And as much as I understand the benefits of co-sleeping, I want my bed back. I haven't slept for longer than 2-3 hours in I don't know how long and I’m tired of all the back/neck/arm/leg aches because I have to sleep just so to keep him happy. And sleep will only help Bean progress in his development. It sounds like I’m trying to justify it to myself, but I know it’s the right thing to do.

Once I am convinced his reflux is mostly controlled, I'm willing to try a modified cry-it-out strategy for a couple of days. If there's improvement, then we'll go from there. If not, then we are back to square one and we’ll try something else..

Until then, I'm going continue watching that beautiful sleeping face when he actually does sleep and I'm going to keep taking pictures of those peaceful, fleeting moments because one day, he will grow up and sleep on his own. He won’t need or want me and I will miss these moments.

Wednesday, March 16, 2011

This Doesn't Change Anything

I always knew there something was different about Bean. The second night after his birth, I sent him to the nursery in the hospital so I could get some rest. The nurse brought him back to me an hour later because she couldn't soothe him. Two or three weeks later, the reflux, food intolerances and other digestive issues started. Not long after that, we learned he had (and continues to have) pulmonic artery stenosis (narrowing in the arteries leading away from the heart). By four months of age, it was evident that he was behind his peers because he was just starting to smile. At seven months, he still wasn't laughing, picking up toys or sitting independently. He started early intervention services at 8-months of age. We started to notice words in his medical records - some that the doctors never mentioned to us - like dysmorphic features, possible aortic stenosis, global developmental delay and hypotonia. He has more specialists than I ever knew existed and he has made tons of progress since starting therapy 10 months ago but still faces many challenges each day. We went to genetics to see if they could put the puzzle pieces together. Five weeks ago, on February 10, 2011, we got the call - and diagnosis - that would change our lives forever. Or would it?

Bean has Williams Syndrome. I have spent a lot of time processing what it will mean for our family to have a child with disabilities. I started processing it long before we ever had the diagnosis. What it will mean for Bean. What it will mean for Baby J. What it will mean for husband and me. How this diagnosis will change our lives. I have come to the conclusion that this doesn't change anything.

Bean has digestive problems. This doesn't change anything.

Bean has a mild heart condition. This doesn't change anything.

Bean has low tone, sensory issues and developmental delays. This doesn't change anything.

Bean needs a team of specialists and therapists. This doesn't change anything.

Baby J, at 3 years old, is still just a little boy and needs our love, affection and attention just as much as his baby brother. This doesn't change anything.


Husband and I need to love and support each other through this amazing and crazy parenting adventure. This doesn't change anything.

Husband and I need to be strong, relentless advocates for our children. This doesn't change anything.

Bean is a loving, charismatic little boy that lights up a room with his smile. This doesn't change anything.

Bean lives for attention and you better greet him with a hug and a smile the second he sees you. This doesn't change anything.

Bean and Baby J will go to school one day - typical or not - and will learn to the best of their abilities with all of the appropriate resources available to them. This doesn't change anything.

Bean and Baby J will be supported to reach their fullest potential and be as independent as possible. This doesn't change anything.

Bean and Baby J may face teasing and ridicule but they will know they are loved. This doesn't change anything.



Some days, I feel like this isn't the life that I wanted. It isn't what I signed on for. This doesn't change anything.

Most days, I'm able to take it one day/hour/minute at a time and know that everything is going to be ok. This doesn't change anything.

Everyday, I look at Bean and Baby J and am filled with love – true honest-to-goodness unconditional love - acceptance and amazement at the joy they bring to my life. This doesn't change anything.

And most importantly, Bean is still the same sweet, amazing, unique, mysterious, sometimes frustrating and endearing little boy he was before we got that call on February 10, 2011. This, Bean's Williams Syndrome diagnosis, doesn't change anything.



Brotherly Love

Monday, March 14, 2011

A Tale of Children's Neurology and Bloody Murder

Today was Bean's neurology follow up. It went great! We don't need to go back. Ever. That is unless he starts doing "funny stuff," as his neurologist put it. We'll keep our fingers crossed and hope that he never have a reason to go back. The only thing the Dr. stressed is that we need to follow up with cardiology. We know that. He's scheduled for April 1. No joke.

Bean is having a lot of trouble adjusting to the time change. That combined with his usual sleep problems resulted in a very sleepy little boy this morning. I was barely able to wake him enough to get dressed to leave. Then, when we got there, he was his usual little showman. He was clicking and trilling and smiling and hi-five'ing the doctor. If we didn't know better, we would have never known that this was the same child that couldn't go anywhere a year ago without screaming for the duration. 

Baby J was still asleep when it was time to leave so he stayed home with his Nani (my mother). Usually, he has a blast with her. Not today, though. When Bean and I got home, we heard Baby J screaming bloody murder as we approached the door. I couldn't get in the door fast enough. I thought for sure he was hurt and needed his mommy. Nope. When I got inside, I saw that my mother was mid-haircut. Baby J HATES getting his hair cut. He was trying to get all the hair off his face and out of his mouth by rubbing his hair-covered hands all over his face and mouth. It wasn't a pretty sight. But the finished product was. Gone is Baby J's mop of hair and he's now sporting a big boy cut. I can't get over how grown up he looks. See?


This is him enjoying a plum after his trauma.You can see that he still has a puffy nose and eyes after all the crying. But he's over it now and enjoying spending time and playing with Nani.

In other news, I'm excited to be doing some new volunteer work and getting more involved with the Williams Syndrome Association. I've been really craving some intellectual and social stimulation and I am looking forward to getting to know more families affected by Williams Syndrome.

Anyway, I'm glad to have the neurology appointment over and even happier that we don't need to go back. No offense to Bean's doctor. He's fantastic. Up next is the diagnostic referral group next week to make sure that we're seeing everyone that we need to be seeing and make sure that they are all communicating and coordinating with each other. Sounds like exactly what we need!

Sunday, March 13, 2011

Weekend Snippits

We had a pretty laid-back weekend. Yesterday, I had mommy time - yoga and Whole Foods by myself. Thank you, dear husband! Then, spent the afternoon snuggled in bed with Bean while he napped. <3

After nap and dinner, we went out to run some errands and for the first time ever, we allowed Baby J to wear big boy underpants out of the house. We were so proud, just as he was, that he managed to avoid any accidents - even while he was super distracted and overstimulated playing at the indoor mall playground.

We decided to try it again today on our Costco run and had success again! He seems to have #1 under control - now we just need to work on the other...

Tomorrow is the start of a long string of specialist appointments for Bean since receiving his diagnosis.

Side note: I'm working on a post about what it was like getting the dx, what it means for him and also for our family but it still needs some work.

Anyway, we have a follow up with the neurologist tomorrow. It should be a pretty straight forward appointment. Hypotonia- yep! Developmental delays - yep! Seizures - nope! I'll be curious to see the frequency of future follow ups and also if he'll want a repeat MRI down the road. I'm hoping that we won't have to do that for a while, though because Bean requires general anesthesia for the procedure and anesthesia is pretty risky for people affected by Williams Syndrome.

I'm also expecting a call back from his GI. His night reflux is flaring pretty badly. His meds are pretty much maxed out so I think he'll want to see Bean this week to figure out what's going on and talk next steps.

My mom came for a visit today and will stay until Monday or Tuesday. The kids were so excited and showed off all their new tricks. She'll stay with Baby J tomorrow morning while Bean and I are at Children's.

See? Pretty laid-back weekend. Pretty good weekend.

Oh, and I have to say... Yay for the #1 seed! Let's go Pitt!

Friday, March 11, 2011

Smile

Bean smiles. A lot. And he has a way of making everyone around him smile, too. Today, he had his third session with his new developmental therapist and he has already charmed her socks off.

One of our family's main goals for her is to help teach him to communicate and ultimately be verbal. Children with Williams Syndrome are often delayed in speech but once they start talking, it becomes a relative strength. She is working with him (and me) on sign and other communication tools and she is just so good with him. I left the room for three minutes to take a call from one of his doctors - another post for another day - and when I came back, she was all smiles and squealed that she got him to do the sign for "more" AND clap his hands. In three minutes. I've been trying for 18 months but hey, I'll take it. He hasn't repeated yet but she gave me some tips on how to get him to do it again. I am all smiles because of the possibilities this presents. His life, and mine, will be so much better and less frustrating when he's able to communicate his wants and needs.

Bean's developmentalist and I talked about many tools to enhance development including an iPad. I have also discussed the iPad as a communication tool and also a tool to improve fine motor skills with his occupational therapist. The possibilities are endless but it's not in the budget right now. I was so excited when I found a blog hosting an iPad giveaway for 20 children with special needs: www.marissasbunny.com. Marissa is an adorable little girl affected by Infantile Spasms and she is about to undergo surgery. Her father is starting a foundation to supply iPads and other assistive devices for children with special needs. He tells her story so much better than me, so you should go check out.

After spending a lot of time reading that blog, I applied for the giveaway for Reed. I would love for him to have a device that would help him overcome his speech and fine motor delays and eventually encourage building speech as an area of strength for him. That would make us both smile.

Thursday, March 10, 2011

My big, little boy

Baby J is a pretty mild-mannered toddler. Don't get me wrong. He has his tantrums every now and then but they are few and far between and are short-lived. He listens reasonably well and follows direction as well as can be expected for a three-year-old. This all goes out the window though every time a therapist shows up at our door for Bean. And that happens four times a week, at minimum. Baby J runs to the door, unlocks and opens it because he really likes all of Bean's therapist and he gets terribly excited when he knows they are coming. He spends the hour that they are here doing everything he can imagine to get attention. Sometimes with positive behavior and sometimes not so much.

Yesterday was one of those days that he behaved like a beast. From the minute Bean's nutritionist arrived, Baby J was all over the place acting like a maniac. I got the Thomas the Train play tent out to occupy him because he can usually spend hours in there. Both kids typically play in there very nicely so I thought it would keep them both happy while I talked with the therapist. Good idea, right? Wrong! Baby J screamed and yelled and cried for Bean to, "GET OUT!" That never happens except when someone is here. Thanks, kiddo, for making me look like mom of the year.

The tent was promptly put away and he occupied himself with my iPhone. He is a genius. Without my help, he selected the netflix app and found and watched a Backyardigans episode. Hey, at least I got to talk to the nutritionist and he was finally appeased.

Having a sibling with special needs has been a blessing and a challenge for Baby J. He is typically very patient with his brother and so loving and affectionate. He shares mommy very well. But at times, usually when someone fun shows up with fun toys for his brother or when we have a doctor appointment, he acts out and demands as much attention as his brother is receiving. And like I said, that happens at least four times a week.  Most of the therapists are happy to oblige and have crowned him super-duper big boy helper. But it's still tough for him because Bean is getting tons of special attention. Husband and I are constantly  trying to find ways to spend special time doing special things with Baby J, even though his brother is very demanding of my time and attention. We also send Baby J to preschool one morning per week so that he can get play time and exposure to other typically developing kids that are his age. He loves it and he's very motivated by being a "big boy."

Today was a preschool day. While he was there, Bean and I made a Target run. I found a Fisher Price frog potty on clearance for $3! I bought two. Potty Training has been slow going, so I thought I'd switch things up a bit and rotate out the seat on the big toilets.. After picking Baby J up and heading home, he was emphatically telling me about his day - the toys, snack (goldfish crackers today) and showing me his art projects when he noticed the potties. He was so excited that he immediately took his pants off sat down. He spent A LOT of time on the potties today. Yay! And he was beside himself when he learned that one would reside in his room so that he can go first thing upon waking.

He is so excited about being a "big boy." We extended that strategy to bed time. After many months of him insisting that his daddy stay with him until he falls asleep - and husband caving - the big boy thing finally clicked and he was actually looking forward to going to bed by himself for the third night in a row!

Baby J is growing up so fast and doing so many things that I need to remind myself on days like yesterday that he's still a little boy that very much wants, needs and deserves all the attention and affection we can give.

Tuesday, March 8, 2011

Inchstones



I took this picture of Baby J and Bean yesterday before their afternoon nap. Still in their jammies. We obviously didn’t achieve the “getting dressed for the day” milestone. But that’s nothing new for us.

Bean reaches milestones at a rate slower than typically developing children. Because of that, we have learned to celebrate each and every achievement, whether it’s an inchstone, milestone, or something in between the two.

Bean has been making a lot of progress in the last couple of weeks. For the last five months or so, he had been “stuck” at pulling up and cruising. He would practice walking with both hands held and tons of support. About two weeks ago, he started walking with just one hand held and minimal support and just this weekend, he started standing up in the middle of the room without pulling up on another object. To some, these are small steps towards walking, but to our family, they are giant leaps forward. When Bean does take those first independent steps – at 18 months, 20 months, or two years – he will have put in so much effort and we hope he will be as proud of himself as we are of him.

Bean is not the only one working on milestones. Baby J is inching closer and closer to being potty-trained – at least during the day. We started with training about 6 months ago but he showed some signs of stress an regression so we backed off and have just recently picked up the pace again. He stays dry for the most part during the day as long as he is wearing cotton underpants. As soon as he gets a pull-up though, it’s all over. So, I ordered some cloth trainers with hidden waterproofing inside to try when we need to run out since he’s no quite ready to go out without some sort of protection yet. He’s doing great and we will continue to jump up and down with joy at each potty break.

And I will reward myself with lots of chocolate on days that I get around to dressing the kids before afternoon nap. And on those days that I don't, I'll relish the fact that my kids are happy, healthy and fed.

But in the meantime, as we move towards our milestones, we’re going to celebrate each and every inchstone and everything in between.



Oh, and here's another picture of Bean because he's so darn cute.

Re-introduction




I have slacked on this blog but have decided to get it up and running again and chronicle our family's life.

I am passionate about my experience as a mother and more importantly, a mother to a child with special needs. I guess I could be considered a relatively crunchy mama. I practice most aspects of attachment parenting including extended breastfeeding, cloth diapering, baby wearing, cosleeping (to a point) and I make my own baby food.

My husband and I began planning our family before we married. Our plan was to wait five years before trying but my clock started ticking after about three years. This was interesting because as a teen and young woman, I had always said that I never wanted kids. That changed when I met my husband. I knew I wanted children with him. He also wanted children but wanted to stick to the agreement – at least for another year. After four years of marriage, we started trying for our first. I became very interested in learning about conception and had myself convinced that it would take us a long time to conceive. We were surprised that I was pregnant after only two cycles.

My first pregnancy was difficult. I started contracting at around 24 weeks but did not show physical signs of pre-term labor until around 32 weeks. I spent a few weeks on bed rest and delivered a healthy baby boy, Baby J – as he was lovingly nicknamed in utero, at 37 weeks. Baby J is an absolute joy to be around. He just turned three and is loving, affectionate and has a wild independent streak. He absolutely adores and is very protective of his baby brother.

Being exceptionally fertile, I became pregnant again when Baby J was just 10 months old. My second pregnancy was much like the first. Lots of contractions but they started earlier and I started showing signs of labor earlier as well. To add some stress, Bean – our nickname for #2, began measuring about two weeks small at 32 weeks and continued to do so when I delivered him also at 37 weeks. Bean was born relatively small – 5 lbs 15 oz – and needed oxygen to help him breathe immediately after delivery but other than that, he was seemingly healthy.

We learned very quickly that he was a high needs child. The second night in the hospital, I sent him to the nursery because I really needed an hour or two of sleep and the nurses brought him back to me because they were unable to soothe him. He had difficulty latching, but we mastered that by day two. At about three weeks old, he was diagnosed with severe silent reflux and multiple food protein intolerances. I drastically limited my diet so that we could continue breastfeeding. To this day, I am free of the top 8 (dairy, soy, wheat, eggs, fish, shellfish, peanuts, tree nuts) and gluten. He was an exceptionally irritable child until he was about a year old but he was, and continues to be, a little sweetheart that is beyond attached to his mama.

Bean is now 18 months old and in his short life, he has faced many challenges. Over time, he has accumulated many diagnosis: pulmonic artery stenosis, hypotonia, global developmental delay and extreme sleep issues – he sleeps one to two hours at a time – all in addition to his ongoing digestive troubles. He is followed by many specialists including a gi, neurologist and cardiologist.
Recently, we took him to a geneticist to see if they could help put the puzzle pieces together. We expected her to be noncommittal and offer to do some tests but were surprised in the first appointment that she was very confident that Bean had a condition called Williams Syndrome (WS) and that she was going to do a microarray analysis to confirm diagnosis. Husband and I left the appointment and immediately googled WS and felt like we had the wind knocked out of us. It explained everything we had been dealing with. Everything. Including Bean’s utter lack of stranger danger and intense need for human contact and interaction. Three and a half weeks later, we had our answer. Reed was indeed diagnosed with WS.

WS is a rare genetic condition caused by a microdeletion on the 7th chromosome and is characterized by congenital heart defects, dysmorphic facial features including puffy eyes – we were constantly asking his pediatrician about his puffy eyes – and blue eyes with a white starburst pattern on the iris, kidney abnormalities, hypercalcemia, hypotonia, developmental delays and intellectual disabilities. People living with WS are incredibly social and often have great affection for music. Bean is a wonderful, loving, charismatic little boy who melts my heart with every smile.

Right now, we are busy with almost daily therapy sessions and preschool for Baby J and also follow-up appointments with all of Bean’s specialists given his new diagnosis.

I plan to use this space to chronicle my experience raising two boys, one with special needs, and all of our joys and perhaps some challenges. I would like for this to be a place where I can keep friends and families up to date and also share my experience with anyone else that might be interested and I promise that my next post won’t be this long.