Archive of ‘development’ category

Ba Ba Big Day…..

So today has been a good day.
 I was going to say “it has been a good day so far,” but I don’t want to do that. I don’t want to say that the rest of the day could possibly ruin how awesome the morning was. 

And I do believe that the awesomeness of this morning is magnified by how great last night was as well.  Because of a very dear friend coming over last minute, we were able to get out as a couple without Evan for two hours. Now, that doesn’t sound so enormous- we do try to get date nights scheduled at least once a month. But one thing that I feel is really lacking in our marriage lately is social outings with friends. We have tons of them on the calendar, but we go as individuals while one of us stays home with Evan. Realistically speaking, we just can’t and don’t really want to have sitters multiple times a week. So if our church plant is having a prayer meeting, one time I will go, and the next time, Todd will go.  If there is an adults only party, either we won’t go at all, or just one of us will.  But last night, our friends Jim and Emily (new pastor and wife of liberti Collingswood) had a Mardi Gras party. And we were able to go, wear beads and masks (well I wore a mask), and have some good food, drink, and conversation for a few hours. Even though outings like this are not intimate time for us; we typically mingle separately and then check back in a few times before departing. I think it is so great to experience a celebration, and then get to talk about it on the way home and share the experience.
We came home to a sleepy and happy Evan, who had played happily with my friend Wendy and barely noticed we were gone. I was carrying him upstairs to bed, and I actually took notice of the way my chest felt, and I felt so full, peaceful, like my soul had been fed.

So that brings us to this morning. I have been singing “Ba Ba Black Sheep” with Evan a lot the last few days, it really wasn’t one in my regular repertoire, mainly because I always would forget the words and sort of make them up. My Aunt Camille was watching Evan recently and said she sang it with him a lot and that he liked it. Thus, it is part of our regular routine. Just in the last two days or so he has started to do the “ba” sound, the ee sound for sheeep, and the ooo  sound for wool and full while I am singing. He did it over and over this morning and I managed to catch the better part of it on camera. Evan is not directly in the shot, because I didn’t want him to be distracted by the phone.

This is such a huge step for Evan. He recognizes the sounds in the song and he consistently will put them in the right place when I sing it. It will calm him down at the drop of a hat too. If he is fussy, I can simply start singing, “Ba, Ba, black sheep…” and he will say hmmmm and stare at me and wait for me to continue.  This video makes me so happy. It is reminiscent of the “whee” video for me. Click here to revisit that big moment.

Happy Park Time
Mama, I don’t want to go!

The other big moment of the morning was when I took E to the park. We walked around a bit with the stroller and it was starting to feel pretty chilly and I wanted to give him some time on the swing before heading home. So I pushed him on the swing for about 15 min while he babbled to another little boy next to him and I chatted with a grandmother. Then we tried out the slide that used to scare him, and he went down it about 5 times, reaching out to go again and again each time. As I said goodbye to the family and started walking to the stroller to leave, he started whining and crying and then fought me as I put him back in the stroller. For a second I really was confused and was wondering why he was crying. Then I realized, he is having a completely appropriate reaction! He doesn’t want to leave the park!! He is having so much fun that he is telling me he wants to stay.

Oh my goodness, my heart swelled. 
The poor kid was purple in the face, crying and writhing in frustration and I couldn’t help but smile. He was being a toddler and I couldn’t have been happier.
Then I felt myself get a little testy while I was trying to get him into his car seat and he did that awesome stiff body thing where you feel like you are going to have to snap him like a twig to make him bend to get in the car. You know the drill.  So I tried it,”Ba, ba, black sheep….”
And he immediately looked at me with those blue eyes glistening with tears and mumbled mmmm and weakly smiled. And just like that, he was calm again and waiting for his favorite song to continue.
yup….awesome day.

I Will Sweat the Small Stuff.

Two things….
First of all, I cannot believe my blog viewings is almost up to 5,000.  I remember when I first started, over two years ago, and I would just fill out little pregnancy update surveys. I think maybe 3 people were readers, if that.  Now, I have readers in Scotland and Germany and all over the US. Possibly other locations, but I am not sure if I can always believe the locator in the Blogger program.  I am so humbled that people want to spend the time to get to know me, my son, and my family.  I am truly honored.

Secondly, small victories is what having a child with special needs is all about. It used to be the small victories in my classroom that would get me through the day- when a child would write their homework down without being reminded, or he would get excited to tell me about a book he read over the weekend that was actually fun and interesting.’Wow, Mrs. Putman, reading isn’t so horrible after all!’

Our little victory today was breakfast. Evan ate pieces of a waffle with peanut butter.  ATE them. Made a mess, and had some “loss” as his speech therapist calls it, but he ATE plenty of it. And reached out for more. Sticky, gooey, hard to chew, and soooo delicious- peanut butter. I stopped by my work today to drop off some things and my friend asked me how we were doing. I mentioned that this morning Evan ate peanut butter on his waffles and she laughed in delight and said, look Evan, see how happy you are making Mommy?? I didn’t even realize it, but I was grinning from ear to ear.

It truly is the little things……
New Years Eve 2012 into 2013

"Enjoy Him." -Notes from Mervis

As I said before- she started out the conversation by telling us that when comparing Evan to other children his age with WS, he is doing AT LEAST as well as those children.  She said she always starts out by looking if there are any big delays or discrepancies and we do not have to worry about that.  That was the most comforting thing to hear. That, in addition to her laughing at the thought that he might be non-verbal and also stating bluntly, he certainly does not have autism. Both of those possibilities could coexist with the diagnosis of Williams Syndrome but she does not think either is accurate with Evan.  The overall feel of the whole interview is that Evan is doing what he should be doing based on his age and diagnosis. The not talking and not walking are both typical and not worrisome at this point.  However, that does not mean she did not offer many suggestions of how we can better support Evan’s development based on her research and observations of him during the two days.

Suggestions from Dr. Mervis and her team:
  • Continue work on releasing and giving items to us- dropping into containers and understanding the terms associated with the activity.
  • Work on strengthening his core strength- this is a biggie. She emphasized that this will improve his speech, his fine motor, walking, etc. His OT has said that his low tone will always make this area tough for him. 
  • Get a PT assessment and see if the OT is doing enough cross-over work in that area, or decide to add PT as another service he receives.
  • Make a photo book of all Evan’s favorite items and go over it with him several times daily.  We have a photo book of his family members and he does love to go through that- but I am going to make him a new one with pictures of milk, ball, duck, doggie, etc. She kept saying, “Make language meaningful.” 
  • Stay away from colors and numbers and focus on concrete items when working on speech with Evan. Abstract concepts like color, size, etc. can be confusing and make his speech development more difficult.
  • Use more “old fashioned” toys with him. Stay away from the ones that he can manipulate easily and that he will sit and open and close the same thing over and over or make the same music happen over and over. She suggested blocks, books, play kitchen items, dolls- toys that encourage the use of imagination.  
  •  Label everything in his environment, and talk about things as we are playing, “Evan has the ball, now Mommy has the ball. Mommy is pushing the ball, now Zoey is running!”
  • Babble back to Evan using exactly the sounds he uses. After you go back and forth a few times, babble to him using sounds from his repertoire, don’t always use words that he has not said yet.  (this was something I learned from reading a friend’s blog, and has started to do, but not enough)
  • Work on strengthening his lower jaw, the speech therapist said his muscle tone in that area is the lowest. This is probably contributing to his issues with swallowing.  
  • Use hand over hand to show him gesturing and pointing.
  • Look into Hanen Program- “It Takes Two To Talk” Luckily a very nice WS mama is lending it to us to read. 
  • Hold objects near our eyes when identifying with Evan- and encourage him to make choices. “Do you want the ball, or the book? “Great, you chose the ball, Evan!”
And the most important nugget of knowledge we received was, 
Enjoy Each Other

” Remember, he is your son. You are a family. Enjoy him. He is not a project.” 

Seems simple, but can be so easily forgotten. 

Enjoy this guy 🙂

The Putmans Take on Kentucky! Part 1

So….I’m not quite sure why- but I’ve been avoiding blogging since we returned from Louisville. I know I wrote while we were there, and I was reeling from the news of the school shooting.  I still am.
But it just seems every time I sit down to write about our experience with Dr. Mervis and her team, I just can’t put into words what I want to share. Very rarely does that happen.

Ahem. 
You didn’t have to agree quite so loudly.
Before I go into it, I want you to see what greeted me in the car at the finish of the experience with Mervis and her team:

I just adore him.

There it is, the reason for all of our worrying, all of our concern, discussions of the future- that little jack o lantern of a face that we somehow are lucky enough to see each day. And he had not a care in the world. In fact, quite the opposite. He had so much attention throughout the research process that he was in his element.  He was able to play with new toys, look at new faces, and spend ample time with his Grammy and Pappy who ADORE him and shower him with attention. What more could he ask for?

And luckily, we got a lot out of it too.  

As I mentioned before, Dr. Carolyn Mervis does research at the University of Louisville and she focuses on further understanding “cognitive, language, and social development in the context of intellectual disability and in typical development.” Several other families we have come in contact with the Facebook support page and through a list serve have also participated and most have been happy with their experience. We figured it would be a chance to talk to someone who really knows more about what makes our little guy tick. And even more importantly- we hoped to gain knowledge on how to better support him and his development.  Of course, secretly, at least for me- I hoped that we would hear that he was the ultimate rock star in the world of 18 month olds who happen to have WS.  Hey, the geneticist said he was one of the best cases she had seen when she diagnosed him back in May- so it wasn’t that much of stretch….

How can he not be a rock star with a mom like this? Jeesh.

Well, he was not referred to as a rock star, but the best news we received was that “Evan is doing at least as well as the average child his age with WS.” She made sure to emphasize that any delays he might have in comparison to a child who is typically developing- are completely within the “normal” range for WS. As much as I am growing to dislike the words “typically developing,” I was glad to hear that he was doing well considering his late diagnosis and delayed therapies. 
She was able to determine that conclusion based on several different tests and observations.  On the first day, Evan went in a room with two students who used the Mullen Scales of Early Learning to determine his current level of development. While that was going on, Todd and I went with Dr. Mervis to her office to discuss how the days were going to unfold and also to help her fill out list of questions based on Evan’s communication habits. We also filled out several releases.  She explained the whole process and as we went over the communication questions, she gave out nuggets of information while we feverishly took notes. Nothing was necessarily shocking or earth shattering but nonetheless helpful to Evan’s progress.  She explained that he was going to be used in another study that takes a look at how babies with WS process faces. He went into the “Baby Thinker” with my mother in law and she held him on her lap for the test. While we were sitting there talking to Doc Mervis (as Todd likes to call her), she received a call from one of the students saying that Evan was extra squirmy. Yep, sounds like him. But he was very good for Grammy and sat through the whole test. They showed him pictures of faces and they videotape him to see what his reaction is, and which faces hold more interest for him.  Apparently he was more interested in the female faces, and when they flipped the faces upside down, he could have cared less. I found that interesting because sometimes when playing he will flip his own body around so that he can look at something from the bottom. Not sure what it all means, but it’s not really to convey information for us anyway.

He does love his grandparents (all of them!)

Because the morning was tiring for Evan, he was exhausted and ready for a nap. So Todd and my in laws took him back to the hotel while I participated in a psych interview.  They are doing a study on the mothers only because Dr. Mervis said there are not enough men who come with the families so the sample size would not be valid. This interview was far more difficult  for me than I had expected. I thought it was just going to be questions about what it is like to be a mom of a child with special needs. That was only one small part of it- the rest of the hour was spent answering intense personal questions about my background and experiences. And of course, since I am honest to a fault, I opened up and was as truthful as possible which can be hard. I felt like I had been hit by a truck when it was over. Thank goodness for Grammy and Pappy, they took Evan for a walk in the stroller, while Todd and I napped for a short while.
Friday was another busy day. I went into a room with one of the students and Evan sat next to me while she sat across from him. They completed a CSBS which included several little activities they tried with Evan while he sat in a high chair. Todd and a speech therapist sat on the other side of the two way mirror so he could see everything.  It was hard for me, because I couldn’t really interact with Evan unless he initiated it. If he looked to me for help or interaction, I could, but otherwise I had to be really quiet and just be present if he needed me.  The funny thing was, I felt like he wasn’t accomplishing all the things they were looking for- and Todd said he felt differently on the other side of the wall. The speech therapist seemed happy with many choices he made and actions he took.  That is sort of telling of how hard I can be on myself, bc the whole time I was taking it personally that he was not looking to me for help, or using the bowl and spoon properly during the test, but in reality, he was doing far better than I thought. I need to chill. Lesson learned.

Chill Mommy!

To be continued….the little dude is waking up from his nap……

Monday Musings

Our Christmas Tree 🙂

I was going to be secretive about the pictures we took at the Christmas tree farm this weekend because I had grandiose plans about using some of them for the Christmas card and/or gifts. Alas, the Christmas card creation went in a different direction- so no need to hide them! Don’t you love Evan’s cute holiday sweater and Todd’s sexy professor cardigan? I love them. I think he got a little offended the first time I told him that, but I clarified that I truly meant it as a huge compliment. Can’t professors be sexy? 🙂

Up close and personal with a very docile donkey
In his glory with a large wheel

Anyway, so I just wanted to share some exciting things Evan has been up to in the past week or so, and to mention that the big Louisville trip to see the WS guru Dr. Mervis is imminent.  I probably will not blog again until we return and I will share about our trip.  It will not all be research, we have a bunch of sight seeing type things to check out too.  Todd and I had a chat about the trip yesterday. He grounded me a bit by reminding me that the research team needs this experience with Evan as much as we do, if not more.  Even if we do not get the information we are hoping for- we will have helped a larger cause- and hopefully parents of children who are diagnosed with Williams Syndrome 5, 10, 20 years from now will have a larger knowledge base to work from. At the very least, Evan will get to play with some new toys, we will eat some Kentucky BBQ and learn what it is like to travel 8+ hours in the car with 4 adults and a toddler. 🙂

Perusing The Night Before Christmas

This past week Evan surprised me by rolling his hands independently during “The Wheels on the Bus.” I was so caught off guard. I was feeding him in the high chair and absentmindedly singing and all of a sudden he started “rolling” his hands. I was so excited. Then I tested it out and sang “Pattycake” and he did the same thing during the roll it part.  It is so amazing how much babies take in when you don’t realize it.  I have always said his receptive vocabulary is stronger than his expressive and that he watches us and soaks it all in. This movement was an example of that observation because I wasn’t even doing the motions when he did it.  Little developments like that keep me motivated to keep on keeping on. 🙂 He is also starting to say “baby” as his main word. I would say that is his first official word- considering that “whee” was more repeating and he will say baby spontaneously.  We have used a few flash cards with him and when you show him the baby one, he smiles immediately and makes some sort of sound with two b’s, and most of the time it sounds very much like the word “baby.” He is definitely going through another developmental growth spurt because he is taking forever to fall asleep again and his energy level is through the roof.

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 Hopefully the next time I write, I will have interesting news to share from our Kentucky experience. Wish us luck in our travels!  Thank you again for reading, and for all your support of this blog.  It means a lot that you take time out of your day to read about our family.

Fun with cutouts, teaching him early.

E likes to Eat!

Well……..at least chew.
Orange, Evan’s favorite food group.

As you all know, our biggest struggle with Evan has been his eating, and lack thereof. When I started baby food with E, he loved it. I was making it myself, and he enjoyed the few different things that we tried. But then after about a month, he got sick with a sinus infection, and then the vomiting episodes started, and we could barely get  formula into him. He was drinking 2 oz at a time, and we had to handle him with kid gloves all the time for fear he would vomit everything and anything we had managed to get him to consume. He suddenly did not want any type of baby food as well, and he would only eat store bought Gerber sweet potatoes. This continued for a few months, which led us to the CHOP feeding team- which led to his diagnosis.  

Fun with Food
This is how I feel about frozen orange pops, Mama.
First happy experience with a cookie!
This is good for my face muscles, Mommy!

Anyhoo……since May when we found out he has Williams Syndrome, and that reflux and feeding issues go along with the territory, we relaxed a little, because we thought we were missing something that we should have been trying. Over the summer we got him on new reflux medicine that is spread out throughout the day, and we slowly started to reintroduce baby food. Any attempts with solids were promptly pushed away or caused gagging/vomiting. I took the advice of an OT friend and let him play with his food, spreading yogurt around the tray with broccoli, and getting the baby food all over his face. He did have fun, but many different textures even when just placed in front of him, made him gag. We are not sure if it was purely sensory of the memory of how sick food was making him back in the spring. We’ll never know for sure.  He slowly started to drink more ounces at a time, and eat small amount of baby food here and there. In July, we found that he would eat cookies as long as they were big enough for him to pull in and out of his mouth so he had control the whole time.  I was over the moon about this breakthrough.  He wasn’t “really” eating it in the sense that you or I eat things. But he was putting it in his mouth without gagging, and reaching for more. Slowly, over time, he increased his intake of purees, and added more and more ounces of his pediasure/duocal mixture.  Then he mastered the straw! This was huge, as we have been told by his speech therapist and others that drinking from a straw will only help strengthen his weak facial muscles and help him to “feel” his food in his mouth better.
In the past month or so he has tried: buttered waffles, cheerios, meatloaf, cheeseburger, cereal bar, hummus on crackers, kernels of corn, Thanksgiving stuffing, buttered pancakes, chicken nuggets, regular and sweet potato fries, the list goes on. 

Eating french fries at Daddy’s birthday dinner
Yummy hummus with crackers

So now we are at at the point where he wants to try everything you are eating, and then some.  For the most part, he mashes it around, until it is good and mushy and then he picks up another piece and drops out what he was mashing. Sometimes he swallows a bit here and there- especially if it a stickier substance.  I am at a bit of a loss as how to encourage his swallowing. I try modeling, keeping my mouth closed, making lots of crazy swallow noises.  I’ve included a video of how incredibly effective that is…..(sarcasm intended)
But the way I look at it, he was vomiting everything profusely no matter the circumstance, then he progressed to gagging when it sat on his tray, then to at least touching it, but gagging, then trying it in his mouth and gagging, to now, putting it in his mouth, chewing, and sometimes swallowing!  Definitely progress. We are hoping our speech and OT therapists can help out with this.

And don’t forget…..
Lou-Ville is just around the  corner!!!!!

Three months of growth for everyone…

It’s not what we eat but what we digest that makes us strong; not what we gain but what we save that makes us rich; not what we read but what we remember that makes us learned; and not what we profess but what we practice that gives us integrity.”- Francis Bacon Sr. 

At Hershey Museum

Looking like a little referee like Pop Pop

Hanging out with his pal Andrew

 It is hard to believe that over three months have gone by since I blogged about having contractions while eating waffles and cleaning the house. 🙂 I spent so many hours imagining what our little person would look like, what he would feel like in my arms, what labor would be like, what it would be like to see our child smile for the first time, and the list goes on and on. And here we are, close to 4 months later, and all of those questions have been answered.  Evan Robert entered our lives like a rocket (5 minutes of pushing, ladies and gents!) and has forever changed Todd and I for the better. He is not just beautiful to gaze at with those pools of stormy blue for eyes and his droopy cheeks that are just so easy to kiss and nibble on all day. His personality has already begun to shape and I can see little parts of him popping out while he plays, eats, and sleeps. I titled this blog “Three months of growth for everyone,” because I have gone through such a transformation in the past three months while Evan has been growing along side me. I will only speak for myself, but I think Todd would agree that he has grown as well as he took on the role as Daddy. I very naively thought I was going to walk into the role of mother and be a natural. That I was going to start every day with great gusto, and have this whole thing down pat right off the bat. How humbling to so quickly realize that was a ridiculous assumption. 🙂
I was blindsided by sleep deprivation beyond anything I had ever experienced, hormonal imbalance that you cannot prepare for, and this overwhelming feeling that I wasn’t feeling the “right” way or doing the “right” thing. All I wanted was to enjoy our precious new son and get a grasp on being a mom, which is a role I had happily anticipated for years. I spent many a day and night wondering if I would ever feel like “myself” again and if maybe I wasn’t cut out to be the mom I had always wished I would be.  Well…..luckily I have plenty of friends and family to remind me that time can do amazing things, as can the support of some wonderful individuals who I cannot begin to thank enough. And here we are, almost 4 months later and I am enjoying my new life as a stay at home mom for the year, and learning to appreciate the last few months as teaching me SO much about myself. I am so thankful to God for trusting Todd and I with our darling little guy. And I am finally feeling confident about my abilities as a mother. I truly believe that I am not alone in some of the feelings I have had and the struggles I faced in the first few months of Evan’s life.I did have some great conversations with some close friends and family members that admitted they felt some similar things and that I should not feel alone or crazy for how I was feeling. That was so helpful and reassuring. I have such amazing people in my life!  But most women would prefer to keep their feelings and fears to themselves for fear of judgement and guilt.I figured being honest on this blog might be helpful to someone else one day? You never know…

Anyway, moving on to Evan and all the fun things he is doing!!
First of all, he has experienced some exciting things in the past month including but not limited to… a hurricane named Irene, an earthquake (that his mommy didn’t feel because she was rocking him to sleep, a trip to the Hershey Museum and Chocolate World, and walking in a charity walk. Evan is such a big boy, he is rolling over from belly to back and back to belly. He goes in a complete circle in his crib, and I have gone in to pick him up numerous times to find him on his belly. He had been sleeping 6 hours and then 3 hours after one wake up over night, which we were very happy with! Recently he started waking up twice again but then last night he slept for 8.5 hours! A record! I am trying to increase the volume of milk he drinks which can be a struggle but the past two days he has done much better. Praying for another long stretch tonight! He is grabbing at everything, his toys, the mobile on the swing, Daddy’s glasses…you name it! He can sit in his bumbo chair playing with a toy while I clean bottles or get dinner ready. He smiles and laughs, and sticks his little tongue out while doing both. Oddly enough I still think his favorite place to be is on the changing table! He just smiles and giggles the whole time. He also can sit for multiple book readings now. Which makes me VERY happy. 🙂 My two favorite things right now, are holding him and singing  while he is falling asleep, and listening to him “talk” while he is drinking his bottle. He sounds like he is having a complete conversation with me while drinking. It is so precious.
Better get to sleep, in case he is up in a couple of hours. 🙂 Thanks again for reading! 

I’m 3.5 months!!

TWO months, wow!

If one feels the need of something grand, something infinite, something that makes one feel aware of God, one need not go far to find it. I think that I see something deeper, more infinite, more eternal than the ocean in the expression of the eyes of a little baby when it wakes in the morning and coos or laughs because it sees the sun shining on its cradle.- Vincent van Gogh

Hello everyone! So sorry for the length between blogs, but it might be more like a monthly thing now that the little man is in my life. It has been such a whirlwind, these two months. Evan has permanently changed our lives for the better. He is so perfectly precious and amazing. Today he officially turns two months old. He just started to make little smiles this past week, which warms my heart.  I have spent a a lot of time with my mom this past week which also warms my heart. 🙂 She has taught me a bunch of things about being a mommy that I never would have known if I hadn’t been able to hang out with her. I feel so blessed by all of Evan’s grandmothers. They are so wonderful. My mother in law, Sara, helped out a bunch this past month and she was an invaluable influence on me and Evan. Mom Mom Debbie is going to babysit Evan this weekend for our first little outing to a Phillies game. So blessed we are to have all these ladies in our lives.
I was reading over my last blog and I mentioned getting 4 hours of sleep one night…well I am happy to report that Evan is now sleeping an average of 4 hours at a clip and then 3 or so for the second clip. 🙂 We are moving towards a full night’s sleep I think? Maybe? Last night he turned himself completely in a circle in his crib.  He is such a little squirm. My mom is always saying he is going to give us a run for our money when he gets a little bigger and I tend to agree. He is already moving so much for only two months.
We have his second month check up next Sat, so I will update with his stats then. I predict he will be approximately 12 lbs at that point. He is a good eater and he seems to be a bit longer too.
We are just feeling so lucky and smitten with our little guy.  Sorry to gush!

Taken on his Two Month birthday

Love this little man

What I want to remember….

Evan turned a month on Monday and I can hardly believe it! I was going by weeks, and thought he turned a month the previous Friday but Daddy T set me straight. We have his one month check up tomorrow and I cannot wait to hear how well he has grown.
Things I want to remember about Evan’s first month here with us:
-The first moment I saw him all blue and wrinkled and I heard his little cry. I have never felt such relief and joy in my life. The day I married Todd and the day I delivered Evan are definitely the two happiest days of my life.
-When he was given to me on my belly for the first time and I held him. I just couldn’t believe that he was the same little guy that was in my belly all those months.
-When we found out that he was coming back up to our room in the hospital after he had been in the ICN for 24 hours. That feeling was amazing. We were jumping up and down so much that the nurses had to laugh. They were happy for us too. Evan was a fighter from day one.
-Watching Zoey interact with Evan for the first time and how adorable she was with him. She loves her little brother.
-The little squeaks and creaks that Evan makes when he is waking up or when is sleeping- especially in the car seat when we take walks or drives. I always think he is starting to get up but it is just him moving about in his sleep.
– The one time he slept for 4 hours straight!! Can’t wait for that again!
– Just looking at Evan’s perfect face. I can’t believe how perfectly created he is by God. His little button nose, his bottom lip that sticks out in a pout, his gorgeous stormy blue eyes. How blessed we are by him.
-When he shakes his bottom lip and says iyiyiyiyiyiyi when he is starting to crank (that is our word for when he gets fussy)
-When he suctions my face or arm when he is looking for food. It sort of looks like he is kissing me, but I know better, he is hungry!
-the 4+ weeks I spent nursing him- those were precious moments of bonding that I will never forget. Such a good little eater.
-Watching Todd hold him on the couch when he has Daddy time. Todd is the best swaddler!
-Our daily walks together, I love getting out first thing in the morning with Evan. Sometimes he is awake and alert but most of the time he takes a little nap while we walk. Thank you to Wendy, Kate, Caitlin, and Sara Jane for joining me on different occasions. It is so nice to have company!
-Watching how he grows every day- his little belly pushes his diapers to the limit!
-When he napped in the bassinet for the first time, I was so proud that he was able to do that, I hope he does just as well in the crib!
-Reading our first books together. I know he doesn’t really know what he is looking at, but the one time he did watch me talk the whole time and I just loved seeing his little eyes focusing on my face.
-The time after he eats in the morning when he is the most alert and he just looks all around with those big eyes completely content. He makes little guppy faces and sighs. 🙂
-His “debonair face” Todd named for him. He scrunches his forehead into little wrinkles and Todd always says, “Oh I need to go get my monocle and ivory tipped cane….” He does this face in his sleep most of the time. 

Things I am looking forward to:

-Making eye contact with him and knowing he can see me and maybe even recognize me as his mommy
-His first real smile (not just gas in his sleep 🙂 )
-Reading a book to him and knowing he is following along
-Going to pick him up from his nap and seeing him smile at me. (I remember Talia saying that about Eliana doing that and how awesome it is)
-When he can hold his head up so we can do more fun stuff at home during his awake time!

I keep saying that I do not want to wish away this newborn time, but Todd and I both are excited to watch Evan grow and do more things every day. I have had a few people say, oh you will find yourself wishing for the days when he just laid around and you could take him everywhere, etc. Maybe, I hope we can find things to enjoy at each point.

Sleeping peacefully at one month old 🙂

Ok I think the little guy is getting up from his nap and will be wanting his meal I am sure 🙂 I’ll leave you with the picture I took today of him with his one month sticker. It is not the “official” one. Todd and I will take that one together.

Our Bug’s Story

Written on August 29th, 2012 for a feature on the awesome Pickled Bean.

We had spent about 4 months of dealing with up and down digestive issues with Evan that had affected his growth and concerned our pediatrician. He displayed aversion to food with any type of texture other than watery puree and could vomit up to 5 times a day, without any real pattern. Three days after Evan’s first birthday (May 30th) we went to a geneticist at the Children’s Hospital of Philadelphia and were told that our son has Williams Syndrome.
 In a word, we were blindsided. We had no idea that the issues we had been facing for the past 4 or 5 months of our little guy’s life were due to a genetic condition. I had been assuming all along that he had issues in his esophageal tract or that he might have some slight sensory issue but nothing major. He did not have the typical early detection of serious heart issues, in fact when it came up that we “might want look into genetic testing” as the pediatrician on the feeding team said in late May- the doctor even said she was 90% sure nothing would come of looking into it. Probably not the best thing to tell a parent. But she changed our lives that day in that little, cramped, stark white office. She questioned whether it had ever occurred to us that our son does not share our facial features. I literally felt like the wind had been knocked out of me. My father passed away a few months before we found out I was pregnant with Evan, and our son is a mini Bobby G, my Dad. He has the same droopy cheeks and big huge smile and personality. And I have clung to that fact very tightly. So hearing the doctor suggest that he does not look like us hurt more than she could know. A day later- she gave us the term, Williams Syndrome- which neither of us had heard of. I have been in special education for over 11 years and I have never encountered a student with this condition, nor had I read about it. So of course, after shakily entering the term into my keyboard and coming to the WSA page, my heart just sank. I remember not being able to focus on the information as a whole, I only could see certain words popping out at me, like, “low IQ, 75% have mental retardation, have successful jobs as greeters at grocery stores, need one-on-one aides, etc.”
 I remember collapsing into the recliner and calling my husband crying. Somehow he had already found the term online when typing in some of the issues we had run into and things that came up at the feeding clinic appointment. Both of us had trouble having the conversation and I just said that I thought his life expectancy was not different than a typically developing child. I hung up the phone and went up to Evan’s nursery and picked him up out of the crib where he had been fighting a nap for a little while. I held him and rocked him the recliner, which I had not done in quite some time because he doesn’t wake up over night much anymore. 
 And I lost my s***. 
I am not one to curse unnecessarily and I apologize for that, but I did. Plain and simple. I started wailing and could not stop. And the funniest thing happened (which now is so incredibly symbolic), Evan picked his head up off my shoulder and looked at me and started giggling uncontrollably. He thought my wailing like a banshee was laughter. And he thought it was was the perfect time to laugh right back! So he kept laughing and sucking in air and squealing. Of course I immediately smiled and felt my heart start to lift.

15 months in OBX

and that infectious laughter –
is really at the heart of our new story with our son. He is fine. He has a few less genes than the average child his age which makes him less likely to walk before 2, or be in a regular education class without assistance, or love to eat chicken nuggets and grilled cheese right now like his little toddler friends. But those missing genes have done nothing to his HUGE personality. He is
vibrant,
 curious, 
 funny,
 beautiful,
 empathetic, 
and just so very loving.
He has already taught us so much in 15 months, and I know he will continue to for as long as we are blessed to walk this earth alongside him. If I am being honest,  (which I know I appreciate)smile, of course I am still scared. Yes, I get angry sometimes when I think of how his future might be affected by WS. But the thing both my husband and I keep trying to remember is that we are far more worried about how his future looks to US. We are concerned over how his life is going to be different from what WE want for him. He is pretty darn happy with how things are going for him right now. Eating his sweet potatoes, chasing our choc lab mix around the house, climbing up the steps over and over no matter how winded it is making Mommy. I do wish people would stop saying they were sorry to hear about Evan’s diagnosis. This isn’t a sympathy card worthy circumstance in my book. I know when there is difficulty finding the right words to say, “I’m sorry,” might pop out. 
But please know, it’s really okay. We know there aren’t any magic words you can say that is going to make it all better. Because we don’t need it to be all better- Evan is our son, he is our reality, and although we didn’t expect it to include a genetic syndrome, it is okay that it does.
 So many very deserving, amazing people cannot have children or lose their children at a a young age. I had a miscarriage before Evan, I know how devastating that is.
Evan is here, in our lives,and as I keep repeating, he is more than okay, he is a rock star.
 And that is not me just blowing sunshine. That is me being a proud mama.
 I am so thankful for the community of parents I have “met” online and I truly wish I lived closer to everyone so we could all hang out and celebrate our awesome kids.
I also want to say thank you to our family and friends who are truly amazing. They lift us up with words, laughter, glasses of wine and beer, tears shed, and just by loving us.  Thank you to all of you.
xoxoxo

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