Archive of ‘video’ category

Alleluia

I have been singing as a part of the worship band at church and because I am not an expert musician, I practice a lot at home singing the harmonies. Evan has been picking up on a lot of what I have been singing without me even realizing it. Todd taught Evan to “kiss” during a song too, and I was trying to get him to do it on camera, but if you listen closely, I didn’t get the kiss- but I did hear him say “kiss from me to you” all as one word. That is what I am going to believe anyway…. 😉

Alleluia means to praise God, and in some translations it represents joy.

 Well. this video is my definition of joy- my son singing along with me.

Hanging with Hanen

Visit HERE to see the program I reference in this blog entry 
(Disclaimer-Please read this with the understanding that I did not attend an official Hanen program or become Hanen-certified. This was just a small workshop to focus on the basics for parents of children in the Early Intervention program)
Evan….is………………………..COMMUNICATING!
Many of you are probably thinking, well duh. He has been for a while, Erin.  Ok, so yes, I have been really excited about the times he has repeated “whee” and “mama” and how he has started to consistently complete parts of songs when we sing to him.   He has started to take turns when we play and will take our hand to “show” us when he needs help.  Until last night, I wasn’t really allowing myself to celebrate all the great ways that Evan communicates non-verbally.  I have been so hung up on helping him to use language spontaneously and use signs when he cannot tell us what he wants. 
But he HAS been communicating, just not in the way I thought he should be. 
Oh shoulda coulda woulda, right? Silliness. He already is!
My friend Karen signed Todd and me up for a Highlights of Hanen workshop through the Early Intervention program in our county. It is two nights, and free! Last night the speaker said we might even extend it to another night because there is so much valuable information to share. She likes for parents to be able to go away and process what they have learned and then come back after trying it out at home.  I borrowed the book by Hanen, “It Takes Two to Talk” from a WS Mama. I have read through most of it, and I had been doing a few of the things I had learned in the book but had not seen much progress with Evan. I am not sure if it was because I was not using it correctly or if Evan just wasn’t ready yet.  I knew the basic philosophy behind the program- that in order to help develop your child’s speech and language skills, you need to sloooooooooow down and really pay attention to your child. I had started to give more wait time and babble back to Evan using the sounds he was using. 
But I wasn’t really really paying attention to Evan’s attempts to communicate with me. I thought I was, but I know now that I can do a much better job.
In the first ten minutes of the in-service, I already felt myself beaming inside, while I thought of all the ways that Evan does communicate with us on a daily basis. Through eye contact, reaching, hand over hand showing us what he needs or wants, and using approximations of words, like “Ahh” for Dada and ooooo for go.  She talked of how it is possible for a child to be still developing their motor planning skills that are necessary for speech. And if that is the case, a child just might not be ready to say a word, even though you think he understands it and should be able to. I realized I have been waiting and waiting for Evan to clearly say Hi, but he has been, he just doesn’t say it in the clear way that I was waiting to hear. And in the meantime, he is using something like, “Ha!” which is just fine! It is more important to move in the direction of talking, I can’t pull a word out of him.
Here are some of the basics we learned (as interpreted by me):
  • Learn all the ways your child communicates with you already, nonverbal and verbally. Make sure to celebrate those ways.
  • Create opportunities for your child to communicate with you. Examples: put a loved toy out of reach, hide the cookie, give him or her an empty cup when he/she is expecting a full cup of milk.
  • Give choices
  • Repeat, repeat, repeat. Try to say a word 5 times before moving on if your child has not said it him or herself. “Wow, that is a funny duck. Did you see the duck? The duck quacks. Yellow duck! Squeeze Duck.”
  • Let your child lead: Observe their behavior, what are they looking at? Do they want something? 
  • Wait expectantly with wide eyes, leaning forward, showing interest. Count to ten internally. It is a loooong time, but children process at much different rates than we do. You might see the wheels turning during that wait time, and it is pretty great when you do. 
  •  Say less. This was big for me. If you haven’t noticed, I am a bit long winded. But children, especially littles- can only take in so much. You do not need to embellish. Your child drops their cup- “Uh oh! Cup on floor. Mama pick up cup.” 
  • Take breaks in between phrases and watch your child. Is he engaged? He might try to pipe in with something, do not interrupt him, let him speak!
  • Stress the important words. If you want your child to learn the word “big,” make sure to say it louder and longer than the other words being spoken. “Wow, that is a BIG ball. It is so BIG!
  • Speak using words that you want your child to use. Speak in the first person. If your child is crying, say, “I’m sad,” or “I’m drinking milk!” (this was a tough one for me to grasp but the speakers both said that children up until about age 3 or 4 hear our words as the ones that THEY want to say.)
  • Slooooooooow Doooooooown. Remember your child is hearing a lot of these words for the first time, and language is  still very new. They need time to process before they can begin to try to communicate in return.
Next week they are going to focus on book reading. One thing I started doing, which was much different from what I had done as a teacher, babysitter, and daycare provider; was to have Evan face me when we read a book. This way the reading experience is shared. He can see my facial expressions, and watch my mouth to learn positions for sounds. This way you can see what your child is interested in looking at as well. I didn’t realize how some pictures made him smile or cock his head to the side with interest. Those are opportunities to engage with him and see if he will communicate with me about the pages he likes. I still have him face out from me sometimes, because that is good snuggle time for us, and if he really likes the book read to him, he will lean against me and get really comfortable. I won’t give that up completely. 🙂 
So why was this morning so particularly amazing to me? Here are some highlights.
 I got him out of the crib, picked him up and he leaned on my shoulder, which he does most mornings. I said, “Awww, hug…..hug……I like hugs.” Then he looked at me and I said, “give mommy a hug?” and he did it again. This was not totally out of the ordinary but then when we got downstairs and sat on the couch together, he sat facing me and I said it again, and he leaned his head right against my chest. He has never done that before! I kissed him and he put his hand out and I kept saying kiss, and he would put his hand back up for another one. Then I tried the “give hug” again and he leaned his head against me again! So it wasn’t a fluke! I noticed he was staring up at the window where the light was coming in. So I watched him quietly for a bit. I said, “light?” And he got excited and looked at me and grunted. I pointed at the window and said, “light?” and he grunted with excitement again. Then (this is the exciting part) he took my hand, held it up to make me point again towards the window. I realized then, he wasn’t looking at the window. He was looking at the light switch on the swag. So I pointed, and said, “mommy turn light on?” and he started jumping in my lap in excitement. So I turned the light on and he squealed. I couldn’t believe it. I just couldn’t believe it. 
We had a whole conversation.
Without words of course, but I knew what he wanted, and he knew how to show me. 
Amazing.
I need to point more often. I think I have in my mind that children with WS talk first, point second- so I haven’t been pushing it. But it helps Evan to “show” me where he is looking. 
I apologize for the super long post, but I know a lot of my friends on the WS Support Board are looking to learn from the information we gathered at the workshop. 
Um so did I also mention that he will sing a little part of Bruno Mars, “Locked out of Heaven?” He and I danced together and he only held one of my hands. My heart was singing. I have my new friend, Kate Leong of Chasing Rainbows to thank for that. She posted a video of she and her sons dancing to the song and Evan (and I) could not get enough of it. Here is a little clip of E joining in with my Bruno jam.

Take that, Brain Freeze!

Evan’s first successful experience with ice cream. Pretty much speaks for itself. 🙂

P.S. the voices you hear are Gran (my mom), GrandRich (stepdad), Aunt Shannon (stepsister), Uncle Ryan (stepbrother-in-law), Todd (husbo), and me
P.P.S. please note that he does not often eat off the table like that, but I won’t lie- I am excited that he would want to eat something that much that he would scoop it up like that!

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.

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!!!!!

Counting from Ung to Ung

We thought Evan might have had his first ear infection, so we took him to the new pediatrician’s office today.  It was a very nice coincidence that Todd took off today so we were able to go together.  Luckily the nurse practitioner cleared Evan of an ear infection, and she was able to clear out a little of the wax without making him bleed.  Apparently he just has a run of the mill virus of some sort, and it just has to run its course.  We are praying our little hearts out that he will be well when we leave for the Dr. Mervis research study trip.  It will be difficult to get accurate results when he is not himself for the experience.
This morning he was having some Daddy time in the recliner and Todd was saying the alphabet with him and Evan continuously would repeat short sounds back to him like he was saying his own version of the alphabet. He sometimes would say bee, or whee, or ma, but for the most part he said ung. And then in the doctor’s office while we waited to be seen he counted from 1-10 and here is a little snippet.

PS, I think our bug looks big in this video, too! We had him weighed and he is up to 20.4 lbs!! Go Evan!
Oh here is another video I keep meaning to post. Evan discovered that if he opened and closed the mailbox on the schoolhouse a certain amount of times, it would say “You have letters!” and then play the ABC’s song. I noticed one day that he would sit and look at me patiently like he was waiting for something. I realized then that he wanted me to sing along. So it became a little game for him for a few days. You have to listen to us sing the alphabet three times though, sorry. 🙂 Enjoy!

"I am days away from change…." (possibly less)

http://www.youtube.com/watch?v=taDqKWWPDAY
My friend Caitlin (who is also expecting her own little Baby P) sent that link to me today. It is a nice video with quotes from mothers. What would they say to their former pregnant self right before the baby is born……
The song in the background keeps repeating, “I am days away from change.” How poignant for me right now. I could be one day, or just hours away from change. Who knows?

My grandfather (on my mom’s side) would have been 100 today. Would have been really nice to share that special date with his great great grandson. I also realized that May 29th last year was the last time I spent time with my father before he passed. We went to the Turkey vs. USA game with my dad and Dave Lukens. It was such a wonderful day. I really feel blessed to have that particular memory as my last one with my father. We tailgated before the game and had great food and brews and we just laughed and talked. I had forgotten how fun it is to watch soccer with my dad and how excited he gets. I sat in between him and Todd and I was so happy. I will never forget after the game, the ramps we had to walk on to exit were so crowded and Todd and Dave were walking a bit ahead (my legs are so short) and I started to feel a little overwhelmed. My dad turned around, grabbed my arm and said, “Hey girl, are you okay back there?” and he led me out of the crowd. Even at 32 years old, he was still taking care of me.

Todd, my dad and Dave before the game

My dad and I at the game. Last picture I have with him. I was so happy.

Part of me thinks maybe God will have our baby arrive on 5-29 so I have a new memory to associate with that date. But honestly I don’t ever want to forget or replace that memory. That is why I shared it on here. I want to be able to remember it and share it with our son one day. 

PS: I did just have a contraction…….. But don’t get all excited, I have them sporadically throughout the day, they have to start coming quicker and harder for it to mean something. 🙂

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