Archive of ‘feeding’ category

Dear Mama

Colorado August 2010

Colorado August 2010

Dear Erin,

I wish I could give you a big hug.  Tell you that you are going to make it through the summer okay.  The unbearably heavy sadness will begin to lift and change into a more permanent hole in your heart.  It doesn’t sound great, but it is much better than the pain you are in now.  4 years later and I still think about him almost every day.  But it is not the first thing I think of when I wake up in the morning anymore.  When I dream about my dad now, I wake up happy that I had a chance to see him.  It is not going to make any more sense than it does now.  I wish it did.  But you will find ways to remember him.  Ways to honor him in your every day life.  You don’t realize it, but next month you are going to discover you are pregnant.  It will blow you away considering your pregnancy loss just two short months ago.  You are going to get a chance to see glimpses of your father every day, through the eyes of your son, Evan.

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Dear soon to be mama,

Tomorrow your life will change in ways I cannot make you understand right now.  You will pace around the house tonight eating waffles and stopping every now and again to wince from what you “think” are the real deal contractions.  Hold on sister, because they are just the previews.  I want to tell you to breathe. Breathe in the peace, the silence, the feeling of being one with your son before he is born.  Before he is out in the world and you have to care for him in such a different way.  Know that things are going to change and they are going to be hard. Really hard.  But I can tell you with certainty, it will not last forever.  It is okay if you don’t make it without medication during the birth. It is okay if you struggle with nursing.  As a good friend of ours says all the time, “no one gives out medals if you do those things.”  GIVE YOURSELF GRACE.

One day old Evan in the NICU

One day old Evan in the NICU

Dear Mama of a newborn in the NICU,

It’s going to be okay.  He is fine in there, he is cared for so well by those dedicated nurses.  I know you want him back in your room with you so badly because he is your little guy, you can’t believe how quickly he was swept away.  But in a few days you will be home with him and you will be wondering why you didn’t sleep a little more while he was in the NICU in such good hands.  His levels will increase, and you will take him home.  Breathe.

Evan- a few days old June 2011

Evan- a few days old June 2011

Dear very new mama with newborn at home,

This is the hardest letter to write.  I look at this picture and I know the turmoil you are feeling. I know the insanely strong love you are feeling for that little man but also the intense feelings of responsibility, fear, worry, and guilt that are swirling around in your very sleep deprived head.  I know you feel like you are physically attached to your child, and it is hard to get a chance to shower, sleep, eat, without needing to nurse, pump, or prepare for the next nursing session.  And oh the guilt…..oh the horrible, purposeless, painful guilt you feel every time you wish for a moment by yourself. And then by the grace of god, you get one of those moments and you lie there trying to nap but you can’t because you feel like you should be holding him.  Everyone is telling you how awesome it is to have a newborn and you just want that to be true. Instead you are walking around like a zombie, and worrying that you are not fit to be Evan’s mother.

Okay, so that is where I step in.  You are wrong. You are the best mommy that little guy has, and he needs you.  He needs you to take care of yourself and GIVE YOURSELF GRACE.  No one is going to judge you if you need a nap.  No one is going to judge you when you need to stop nursing because it is too much.  It is hard right now. Capital H. HARD. Not hours and hours of non stop joy. Hard.  Your hormones are plummeting, your hair is falling out, and you are getting up 4-5 times a night to care for your son.  It is okay for it to be hard. Let it be what it is and I can tell you…..he WILL sleep through the night. Not when he is three, like some very mean moms have told you……When is about 13 months he will start to consistently sleep through the night. And before then you will get blocks of 5 hours at a time which will feel like absolute heaven.  And all those doubts, those fears, those ugly nasty statements of guilt and shame you keep rolling around your head?  They will soon lift as well.  You will realize, you are doing okay.  He is in one piece. You can take showers and he will sit in the bouncy seat and be just fine.  You can make breakfast while he plays on the carpet with his toys.  The HARD will soon become your normal and you will not even realize when the change happens.

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Evan a few weeks shy of one year old May 2012

Dear Mama of an almost one year old,

This month is going to end on a very tough note for you.  You have no idea what the doctors are going to tell you about your beautiful baby boy who lights up your every day.  You have been cleaning up after hours and hours of repeated vomiting. You flinch when he coughs or gags because you know what follows.  You have been trying different foods and trying some of the same foods Evan used to eat and he won’t have any of it.  You worry because his weight has plateaued and the doctors just can’t seem to figure it out.  You are going to go through his birthday weekend telling yourself that he does not have any genetic condition. That he just has a gastrointestinal issue and medicine or surgery will fix it one day.  Mama, I say this gently, but you are wrong, and as I have said before- it is all going to be okay.  Evan’s diagnosis will not  change one bit about your relationship with him.  If anything, mama you are going to become one dedicated advocate for your son.  And Evan is going to start Early Intervention services, which will be scary, strange, and hard for you at first, but soon it will become a welcome support that you look forward to each week.  Evan is going to flourish with his therapists.  He will be eating some solids by the end of the summer. You would never believe it, but today, at almost three years old, Evan ate chicken nuggets, fries, and apple sauce for dinner. Toddler gourmet for sure, but I know how impossible that seems to you now.  But he will.  Keep at it mama, he needs you to be strong for him. That doesn’t mean you can’t cry or mourn the loss of the child and future that you had all planned in your head.  Tears do not negate strength.  They are a sign that you are being honest with yourself.  But please know, that as you learn more about Williams Syndrome , the easier it will all become.  Evan is going to do some amazing things. Just wait until you hear him say “I love you,” for the first time, ride a horse, and walk across the playground.  It’s all worth it.  He’s even going to go to school in the next few years. I know, don’t throw up.  You are going to survive it. It is going to be so wonderful for him. And for you and Todd.

This is going to happen a few years from now.

March 2014

March 2014

I’m telling you. It’s going to be okay.  xoxoxo

W is for walking- w-w-walking….T is for toddler. T-t….typical…?

If you would like to sing along with this entry’s title, please watch this. I probably sing a version of that song about 20 times a day. No, I am not exaggerating.  Music is the cure for everything when it comes to Evan.

So since posting the walking video at the park last week– we took a vacation to Vermont and are now home safe.  I expected that Evan would be toddling all over Stowe. Alas, he continued to prefer crawling and even with prompting, did not do much independent walking.

Then this happened on Monday:

Our awesome physical therapist takes us to the Children’s Discovery Museum in Cherry Hill occasionally and she works with Evan using the exhibits and equipment.  Clearly, it is highly motivating for him as you can see in the video.  Since Monday when he took off walking all over the museum, he has been attempting it more and more. He needs a reminder now and then to stand up, because I think he is just so used to immediately dropping down to crawl that he forgets.  It is so exciting to see him taking risk after risk and trying so hard to stay upright as long as he can. 

Then today rolls around and he eats almost two whole pieces of french toast, I started having him use a step stool to wash his hands, and he helped me “clean up” some of his toys.  Big boy!  He also has begun testing limits big time.  He has known the meaning of the word “no” for quite some time. He doesn’t always listen to it, but he does take a moment to process it and it gives me a second to intervene. Today he started to do things he knows he is not supposed to, for example, pulling my earring out, or grabbing remote controls.  He starts to do the forbidden activity and then looks over at me and says “ohh? ohhh?” Basically prompting me to say no.  So I do, and then he tries again.
Tonight this happened approximately five times in a row.
After he skipped his nap.
Suffice it to say, I was pretty frustrated. I tried to be “Super Nanny” and repeatedly remove him from the situation, and be as calm as I could be.  It took a lot of deep breaths.

It was one of those nights where I was counting down the moments until E’s bedtime so I could have some time to myself.  Then I started our bedtime routine. I wrapped him like a burrito in his weighted blanket, we fed the fish, and sat down to sing some songs in the nursery rocker. He has been really into “You are my Sunshine,” lately so I started singing that.  He cozied up in my lap, leaned his head against my chest and looked up at me with those sparkly eyes.  It was very apparent that he was content. Content to simply be in my lap, listening to a song he loves.

I know he was displaying typical toddler behavior when he was seeking to hear “no” over and over.

I was actually kind of thrilled.  
That is one of the funny parts of being a mama to a child with special needs.
You rejoice when they throw “typical” tantrums. 
You rejoice when they eat french toast without gagging. Almost two WHOLE pieces of toast!
You rejoice when they move their fingers together at the right times during “Itsy Bitsy Spider.”
But the way I felt holding him in the rocker tonight, that wasn’t unique to special needs mamas.
That was just good old fashioned mama love. 

We have a TWO year old.

Family Shot, Evan 2 years old

Two years. Two years that have come and gone in so many ways. Painstakingly slow when we were going on two hours of sleep a night for months, And warp speed fast, when days are spent playing in the sand, watching Evan learn to walk, snuggling before and after nap time, and knowing my days at home with him full time are numbered.  But either way, we made it! We more than made it.  We have a happy, healthy, thriving two year old.
Last year at this time, we were just finding out about Evan’s diagnosis. We were just being hit with the news that would change so many things for us.  We had a huge party for Evan that was on the same day as his baptism. It was a crazy idea, to have over 50 people over our house, just an hour after we returned from church (in Philly).  But we wanted to celebrate two big occasion and we wanted to share in it with loved ones.  Two days before the party we were told that Evan might have Williams Syndrome, but we needed to go to a geneticist to make sure. Todd and I handled that weekend differently, I was convinced he was fine, he did not have the condition, the doctor had made a mistaken assumption.  Todd had done the same research I had, but his logic took over and he knew deep down that our little guy was missing some genes. Either way, we both were overcome with emotions, worry, confusion.  The party is a bit of a blur for me. I do remember that Evan was not himself. He was extremely tired from church that morning, and all the attention. He took a nap, and when he woke up, he was groggy and his reflux was acting up terribly.  He just wasn’t his chipper, social self.  We had not discovered his high calcium yet, so we were continuing to push high calcium foods and drink in him, which was exacerbating the gastrointestinal issues he was having. I remember taking pictures of him with his cake in front of him and he would gag when he looked at it, and when we tried to give him a small piece, he pushed it away and gagged again.  At that time, most gags came right before a vomit, so we didn’t push it.  I didn’t let on, but it was breaking my heart that our little guy couldn’t enjoy his birthday treat. Such a silly thing. When I thought about being a mom, I figured I would have to limit his sugar intake, try to cut down on sweets. And there I was, crying inside about the fact that my son couldn’t eat his birthday cake.

In the months to follow, as we got Evan the care he needed, the early intervention therapies, the appointments, the correct amount of calcium in his diet, etc, he began to handle food better, and keep it down with more ease.  But I never would have imagined what would occur just a year from that party where he gagged over a few crumbs.

Age 2, upon receiving cupcake

About 6-7 minutes after receiving cupcake

I watched him as he picked up the fondant tire off the top of his cupcake, and then try to put it back on the top multiple times. We took the tire away, because I don’t think he realized it was edible. He then began to touch the cupcake with curiosity.  We give him such small pieces of food typically bc the speech therapist is working on age appropriate feeding patterns with him and the bigger the piece, the sloppier he gets. Makes sense.
Well, he was puzzled with this cupcake because it was HUGE. Adult sized. I held my breath a bit, thinking he would squish the icing down, feel the texture and throw up.  Next thing you know, he is shoving it in his mouth and going to town.  Chewing, swallowing, shoving. Repeat.  It wasn’t until it was almost gone, that I realized he was REALLY eating it. He kept it down, he ate dinner later, drank all his milk mixture. No issues. Multiple times I felt my eyes sting with tears. I just felt so proud of him. And so lucky to be his mother. (and not because of a cupcake)
We have a TWO year old. A brave, hard working, sunshine-of-our-days two year old.

 Yes, this is a positive, 
upbeat, 
dripping with sugar, 
blog entry. 
Dripping with chocolate cupcake crumbs. 
But I’m okay with that. 
In fact, I’m very okay with that.

April Fools Mama!

I still have a few more lengthy and thoughtful posts I want to write. (and planned to write tonight, but Todd surprised me and came home early from a dinner with a growler of my favorite brew and I blog better when alone)
But I digress…….
So this weekend Evan did some amazing things, one of which was to plow through a plate of breaded fish nuggets and sweet potato nuggets. I was blown away. He has not eaten that quantity of solid food in one sitting….pretty much ever. We are working with the new speech therapist with his pushing the food into the side of his mouth and getting him away from chewing in the front of his mouth so much. I bragged about his plateful to everyone I came in contact with all weekend.
This brings us to today. After a full day of OT, an impromptu playdate with his pal Sean, and a good 2.5 hour nap, I baked this for dinner:

Dr. Praeger’s fishies and sweet potato tots

I sat down all excited and proud of myself for actually turning the oven on for Evan’s dinner. (no comment please) One bite in, and I already knew this wasn’t going to go like it did last time.

This face welcomed my cooking attempt.

Hmmmmm….

And…..cue food falling out of his mouth.

Oh well. I let it get to me for a few minutes. Then I realized, the food became cold relatively quickly. Who likes to eat fish cold? (besides sushi, I know, I know) And, because of his good, long, and LATE nap- I gave him a small smoothie when he woke up and I think he might have been a bit full from that too.

April Fools Mama! You thought you could take that picture and post and brag about it, 
but instead,
 I showed you, I am a toddler and I will eat what I wanna.
And a year ago this time, he was barely drinking 2 oz at a sitting and vomiting several times a day.
So I am still celebrating every meal. 
🙂

Proud Mama

Grilled “Cheese”

Signing “more”

Quick note to share that E is currently chowing down on a grilled “cheese” sandwich.  He has tried this once before over a friend’s house and had trouble with the stringy cheese. Since then we had the geneticist appointment with the dietician input about being even more careful with his calcium.  Enter the world of vegan cheese.  Not gonna lie, it’s not pretty, it smells a bit funny, and grills even funnier. BUT, the bug likes it, and is excitedly signing “more” for it over and over. It only has 2% calcium which is WAY better than regular cheese or the enriched vegan ones I kept finding.

Big Day in our house. Slow and steady wins the race. (Yup, keep reminding me of that, k? K.)

TGIF Musings

I have a few topics brewing to blog about, but for right now, I thought just sharing some random occurrences and musings would work for a Friday post.

Produce Abounds
Monkey and My Smoothie

 On the Health Front:
 So I’m definitely doing “better” overall with food choices and with being active.  But I definitely have several days in a row where I slip, and I am feeling a bit all over the place with menu choices for dinner, and my breakfasts are starting to bore me. I considered juicing. I read a few articles, liked the idea of how quickly the nutrients would enter the body, and thought it would be a good way to get more fruits and veggies into my diet.  A dear friend of mine lent me her juicer to try, since they are so expensive to purchase. She wanted me to be sure it was the right fit for me.  Well, I thought about it for a few days, asked a nutrition expert friend of mine, and mulled it over. I decided that juicing actually was not the right choice for my needs. I wanted to get more fruits and veggies into my diet, and increase energy.  Juicing requires a LOT of produce for a little output, and bc of the quick absorption, my blood sugar level would spike and then plummet, which is sort of the opposite effect of what I would like. I tend to have blood sugar issues anyway, I always have. So……………back to making green smoothies I go. This time though, I am going to vary the fruit, lessen the dairy, and try to add in some different things like ginger, lemon, etc. I bought a LARGE amount of spinach and kale and I washed and bagged a bunch. I thought freezing fresh greens would be less than appealing, but when reading about it and thinking some more, I realized if I put it right into the smoothie, it will actually work out well because it will be cold and add to the smoothie-ness of the drink. I froze a bunch of bananas for smoothie purposes too.

Yum, tastes like Orange Julius!

At our CHOP visit earlier this week, we created a new nutrition plan for the bug, too. His calcium (well, what they were able to analyze anyway-that is another story), is okay, but we still have to be careful not to give him too much. The dietician informed me that just with his Pediasure intake, he is getting over the RDA of calcium for his age. That was news to me, and not good. So we are cutting out some of the pediasure, adding in almond milk and more purees into his “milk’ mixture. So little e had a smoothie today, too! He had 2 oz pediasure, 2 oz almond milk, half a pouch of Carrot, Sweet Potato Brown Rice, 1/4 of an avocado, and two scoops of Duocal supplement powder. PHEW! I am full just reading that!
We are also hoping that with less Pediasure, he will be more interested in eating a higher quantity of solid food. So far that hasn’t exactly been the case, but we are only on day two. Slow your roll, Erin, (as my friend Talia likes to say.)

I’m full now, Mama.

On the Random Front:
**My Mother in Law will be very proud of me, I cleaned my dining room chairs, got on my hands and knees and cleaned up part of the hard wood floor (we have it in a lot of rooms), vacuumed, and even dusted tops of pictures. It might not seem like all that extraordinary, but I did it, and we are not having company any time soon! 🙂
**Evan had himself a toddler-style epic tantrum today in Old Navy. So many bad decisions on my part led up to the tantrum but I still didn’t see it coming. I was stocking up on my favorite layering tank tops using some birthday money and Mr. e did not see it necessary for me to do so. So I had to hold him screaming, thrashing and falling out from under one of my arms while I pushed our gargantuan City Elite stroller out of the store. Not before I had to remember to put the few shirts I had gathered off to the side so they did not think I was trying to shoplift, ala After School Special 1989.Yes I garnered a few stares, but most of all, I had this odd feeling when we finally made it out. It was more of pride than horror. Pride because we made it out, and I was able to get him back into the stroller with smoothie in hand and he was placated immediately. But more so because it was completely age appropriate and expected of a 21 month old who was tired of being in a store. Prior to the meltdown he had also been eating pieces of a cereal bar and in between bites would moan a little and then sign “more” for me to give him another piece. Another HUGE accomplishment for Evan.  Believe me, I am not saying it didn’t exhaust me, and I am taking a little extra time for myself right now during his “nap” time (that is a loose term today) because of said exhaustion. But…..I have seen plenty of parents have to wrangle their kids in stores and it just sort of felt like a rite of passage. One of which there will be plenty more. 🙂
**Did a reader in Kathmandu really read my blog? Wow.

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!

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

The Mother and her Inventions

Don’t get the wrong idea, this is not a post about things I have invented. I sure wish I had! Instead I thought I would name a few things that I feel have helped us IMMENSELY in these early days with our bug.(and I imagine the husband would agree)

These are in no particular order:

1.) The Pack and Play. When Evan was a newborn up until he was about a month old- he would nap in this with the floor elevated like in this picture. I liked having him on the same level as me, especially when he was taking cat naps and I was still nursing. We also used it (and still do!) as a changing station during the day. When we travel he sleeps in it. And just in the past few months I have used it when I need to do something and I need Evan to be in a place I know is safe and confined. Our dog would not get time in the backyard, the laundry wouldn’t get switched over, stinky trash would stay in the can, and I would never use the restroom (ahem) without this puppy. I have my superfriend/Matron of Honor, Talia to thank for realizing I could put Evan in this for short periods of time and not feel guilty about it. He has a few of his favorite toys in there that he only plays with during that special Evan time and he is happy as a clam while I am able to take the dog out for her bathroom break, or get the laundry up from the basement. Thank you Graco for this awesome contraption. 🙂

2.) Baby Einstein.
The baby video industry has smiled upon our family with this one. It’s no secret that Todd and I are TV watchers. We DVR with the best of them, and even with getting rid of cable, we still have a core number of shows that we watch regularly and get excited to catch up on. We do however, try really hard to not just have mindless television on while Evan is awake and with us. We do DVR Sesame Street, Signing Time, and a few other key shows that we feel okay about having on when we are cuddling with him or he is having his bedtime cup. That brings us to our beloved Baby Einstein videos. Back when I was struggling to get Evan to eat his meals, I tried putting short toddler friendly videos on You Tube while I fed him so he would be engaged and not focus on the food. Along the way, I found Baby Einstein and the plethora of videos that exist on You Tube. Evan’s eyes and mood changed dramatically the first time he watched one of the videos. I’ll never forget when I showed him the lullaby one (on steady rotation here in the Putman house). His eyes were wide, he giggled when the babies came on the screen and he interacted with the screen when the puppets danced and did their little skits. These videos have gotten us through many difficult  doctor’s visits, nebulizer treatments, nail clippings, you name it. The really exciting part is that he has started to make noises in the right spots during songs and stories in some of the clips. At this point he doesn’t cry when we turn it off and he is just as happy to watch videos of himself.  I knew we wouldn’t be a no T.V. household but I also didn’t want it to be on constantly for fear of Evan becoming fixated on media so early. So we try to sprinkle it in, especially when needed to get through a tough situation like long doctor’s appointments or waiting areas.

3.)  The Zoli Bot Straw Cup . To the outside observer, this cup might look a little different but nothing special. In fact, this cup has been an integral part of Evan’s success with drinking a larger volume, and with further strengthening the muscles around his jaw and lips. We actually have to give him smaller amounts now because he drinks so fast, and he will only drink his “milk” from his straw cup or from an open cup. What sets this cup apart from other straw cups is that it has a weight at the bottom of the straw. So when Evan swings his cup around, which he is known to do quite often- the straw connects with the milk so he gets every last drop. It really was amazing when I realized I could give him his cup and he could sit by himself and drink every ounce on his own without prompting, encouragement or assistance.

Crumbs A Plenty

After a meal of baby food and cereal bar shoveled in by this little guy

I keep taking picture after picture of Evan trying new foods, because to me, each new type is like a mini miracle, after months of him barely keeping anything down. But I realize at this point, he will try basically anything! That does not mean he is actually swallowing or getting any nutritional value out of each food, but he is at least tasting, chewing, and mashing different foods.  WS friends and families, if you have any tips about swallowing and encouraging Evan to get the mashed up food into his belly instead of stuck in his bib, let me know! 
Other new developments, Evan is taking our hands and moving them to accomplish things he wants help with or that he wants us to repeat. He is also handing us things he might need help with, like Daddy’s cell phone, when he wants to see the same video for the 20th time. He is finally walking around with the shopping cart we received as a hand-me-down from the Post family. It is a very unstable toy so he has avoided it because of its difficulty. But just yesterday he started walking around with it showing more and more confidence. Tuesday I have my first phone interview with Dr. Mervis to update her on Evan’s communication developments since we went to KY last month. I will do one a month until we go back in June. 

Cupcakes at Emery’s birthday
Wifey Itch

I have been a little itchy lately meaning I have itches that need scratching, like my friend itch, my theater itch, and my wifey itch. I just realized this week that I have been consumed with being Evan’s mother and educator, and I have been so intent on furthering his development and supporting his therapists the best way I can. And with that focus has come some neglect of the other sides of me- the side that loves spending time with my friends, wooing my husband, and being involved with creative projects. I am working on “scratching those itches.” But it can be hard when there is only so much time in a day and days in a week.  Keeping up this blog definitely helps feed part of my creative side. Thanks for reading and helping me to do that! 🙂

Feeding the friend itch NYE 2012

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