I did it!

To read from day 1 click here.

What we hoped to be the last day of the program, Carter woke up to a letter of encouragement from dad. He read it out loud and I think it helped him get ready for the day. We drove to Fargo for the 9th time in two weeks with high hopes of graduating from the program. We are ready for a break from the intensity that is eating under the microscope and timers. But more excitedly, ready to move on to eating at home, which was the end goal all along.

IMG_0404The first session of the day was hard. For breakfast he had:

  • A sausage patty
  • a bowl of cereal with milk
  • Apples slices

He ate, but not fast enough. The sessions are timed to increase the feeding speed. He eating more variety, but he over chews and takes him a really long time to eat a whole meal. Given the average school lunch is 15 minutes (too short) we need him to speed up if he’s going to gain nutrition and have a full tummy. Despite not ‘beating his timer’ as we call it, I was so very proud of him because if he wouldn’t have picked apples he would have beat his timer. Fresh apple slices take way more time to chew than mandarin oranges or peaches from a can. So even though he didn’t ‘pass’ we hopped in the elevator and I gave him the biggest high-five and hug because I still cannot believe what he is eating.

IMG_0428

Even though he did well, he couldn’t play iPad. He could read, but he opted for a nap. Lunch time was another big challenge. We grabbed his food from the cafeteria, which still had no air conditioning for the short-term. Apparently the air conditioning was still under repair. It was hot and sticky and the food choices were limited.

He had:

  • Hamburger with ketchup (no gluten free buns available)
  • French Fries
  • Mandarin Oranges
  • Corn

He didn’t make his 30 minute timer this time either. This meal was actually one of the hardest meals. After 30 minutes the rule says I need to leave the table. This was hard because he said,

‘No, Mom don’t leave me!’

I swallowed my emotions and left the room… I watched the remaining 30 minutes (sessions are capped at 60 minutes) from the viewing room. I talked with his team and how to move forward. Since Carter is eating everything, just slowly they feel he is ready to go home since they know we are dedicated to following through with the same rules the program applies. We prepared to discharge, but Carter had one more ‘snack’ session at 4 p.m. He had:

  • Peas
  • A Cheese Stick
  • Grilled Chicken

He beat this timer with no issues. Which was great to end on a successful session. He was so proud. One of his team members said he could have a popsicle if he beat his timer. Since he accomplished this, he played out his secret handshake with one of his favorite team members and remembered his reward, below:

After we left, Carter got to go to Party City to get a new collection of bouncy balls that Mom and Dad promised him after graduating. All of the packages were removed from the rack so he could choose the best one. I think he made a solid choice with his ‘Mega Value 40 Bounce Balls’ which are all mixed in to his bounce ball collection already.

Overall, I couldn’t be more pleased with the outcome of this program. While it was ‘intense’ as the program is appropriately titled, it was worth it. The crying, the gagging, the rocking, it’s less and less every time he eats. Yesterday, we visited the mall and he ate a taco for the first time. Last week we visited Zorbaz and he ate nachos. We went to a family picnic and he ate several different salads and even brisket. There are still a lot of foods he doesn’t love, but what matters is that he is now willing to try them and eats what is put in front of him. There is still some queuing, but he’s doing a great job and we are really proud of him.

This is another unique challenge that he has overcome. He’s learned to teach his sensory processing disorder who’s really in charge. The best part is when he eats something new and says,

 ‘Hey, that’s good! I’ve been missing out!’

Not anymore, little pal. Let’s eat!

xoxo

Kerri


1MinnesotaMom@gmail.com

Advertisement

First time, small fry.

Day 2 of Intensive Feeding Program (for day 1 click here)

44EBC9B8-76F0-4158-9DE8-8DD27D55AC5DTreatment begins today.

Walking in he was still happy as can be to come to his ‘class’ since so far, he hasn’t actually had to eat anything new. Easy peasy, right? Wrong.

The first session was actually the most difficult so far. He had to eat one small bite of a mandarin orange. He cried and threw a little fit. Quickly, however he learned that this behavior would not resolve his present scenario. Despite the presented emotions, he was still expected to eat his food and not cry. If he cried, his reward ended and he had to go back to the treatment room. Amazingly after 5 more sessions throughout the day, he didn’t cry again. He’s had some hesitation and once spit out his cheese, but did put a new piece back in his mouth. Overall he did very well in his sessions and quickly ate the one bite that was expected of him today. As the sessions continue, he will have to start eating larger pieces and more bites. But for now, he eats his one bite and he’s done. Baby steps!

It’s a pretty surreal experience to see him try foods he’s never been willing to try before.  Could you imagine, 10 years on this earth and never eaten a single french fry? Today was the day. He didn’t like the french fry, but he did like grilled chicken, which is great because we always have grilled chicken in our fridge.

At the end of day 2, Carter ate a bite of: 

  1. Mandarin Orange
  2. French Fry
  3. Peas (2 whole stinking peas!)
  4. Grilled Chicken
  5. Cheese Stick
  6. Pineapple

We get a lot of little breaks which is nice. There are two parks within walking distance and he has made friends at each visit to the park. I expect him to continue to progress well since he won’t be able to visit his pals at the park if he doesn’t eat in his sessions.

His love of bouncy balls has also been a great reward for him. He only gets to play with them when he excels in his class. Today, he talked with his doctors about graduating. He decided he wants to graduate soon so he can just stay at the park all day.

At the end of the day we rode the elevator to the parking garage and pushed open the door to the smell of fresh midwestern air. It was busy outside with cars and construction across the street, but I stopped in my tracks when I heard him say, “Mom, I did so good… Let’s take a selfie!” Um… have we met? YES! Clearly, I’ve trained you well, my little dude.

A04E5EBF-6A79-4CF7-9F56-7ADCC724904D

I’m thankful for the blessings in my life (my job, family, support system) that allow me the opportunity to support him through this program and experience the difference it’s making in his life.

To continue reading, Day 3 click here.


If you have any questions for me, please contact Kerri Kava at 1MinnesotaMom@gmail.com or on social media at:

Follow us on Facebook

Find us on Twitter

Inspo on Instagram

Pinning on Pinterest

Go to Google+

Nerves for something new.

1C4F6870-723E-45A1-8A36-3B470563ACB0.JPG
Singing like a Kookaburra. He’s not nervous at all. Why am I?

As I wait for the next step in my son’s feeding program to begin, I find myself in the middle of a bright room filled with a diverse group of people; doctors eating quickly, parents chasing kids, children running from parents, workers folding boxes and others preparing coffee or tea. The machine is whirling and the smell of food and coffee is all around. It’s a moment to people watch and it’s also a moment that should be fairly easy, after all we’re just waiting here for our next session, but I’ve challenged myself to write more honestly and so that’s just what I’m doing today.

I’m writing this with little intention of publishing, so if you’re reading this, I was real brave. 

The truth is, this program is meant for my son Carter to learn to eat more foods. It’s not that he can’t eat. He can chew, swallow and decide what he wants to eat. But what he really needs to learn is tolerance. Can he tolerate more than what he’s currently choosing to eat and how far can he truly go? Most of us can tolerate almost any food of our choosing, of course we don’t prefer all foods, but for the most part we are willing to try. This is where we need to do some work. Carter prefers about 5-6 different foods (total) and as I’m sure you know this is not ideal for optimal nutrition.

As I sit here, I realize that I too need to do some work. I know that I will learn from this program, just like Carter will. I know that my approach to this eating change needs to be calm, confident, and positive. So that’s what I’m working on here, as I write. Writing calms me. It reminds me of what I’m capable of. It helps me gain the confidence and strength I need to be his support system.

B7EC0DDC-73C3-406C-9214-E3FE08FCBBFB.JPGI don’t feel like I struggle with this most days, but today we are focused on something we’ve looked over for several years. A challenge I thought was permanent until now. The thought of even asking Carter to eat something other than what he prefers is daunting to me. He cries. He kindly yells, ‘No, I’m using my manners!’ This makes all those ‘feelings’ come out. That feeling when I’m asking him to do something he doesn’t want to do. He’s charming and excels at convincing most people of just about anything 99% percent of his life. So when he asks me, ‘Just, just, just give me some yogurt and my banana,’ that truly is just what I want to do. But we’ve been doing this too long. Standing still. Pretending it’s okay when it’s not. Eating the same thing day-in and day-out, does not provide him with a well-balanced diet, even if it sounds ‘bananas’ to him.

He’s my heart. My pal. We’ve been on this Williams Syndrome extraordinary gifts and unique challenges route for over 10 years now. From understanding it, accepting it and halfway through raising this remarkable kid, there are times you want to feel ‘done’ with certain parts. Like the feeding therapy he participated in from 2-6 years of age that honestly did not work, that’s behind us now. I was glad that was behind us. Who wouldn’t be? It was stressful. Intrusive conversations that (for most families) are kept within the 4 walls of your home. This is a privilege most parents are afforded. These conversations, at times can hone in on my own parental identity. But, that’s when I remember this isn’t about me. It’s about my little boy and his need to develop his own best self as we together create our own best life.

So as we go down this journey, I will write and if you choose to follow along, I hope you too learn something along the way, even if it’s just a little awareness about the unique life challenges of others.

Today: Assessments

Tomorrow: Treatment Begins (Read about this here.)

xoxo

Kerri


1MinnesotaMom@gmail.com

 

 

 

Grief

Part 2 of My baby has Williams Syndrome?

“It could be worse…”

This is true. It definitely could be so much worse. I won’t even mention or begin to imagine the ways it could be worse. My intent in sharing this is to point out that just because it could (usually) be worse, this doesn’t mean that you aren’t entitled to that feeling.

Would you say, “You could be happier,” to someone who is real happy? Does that make sense. Just because someone else in the world is happier… does that mean you shouldn’t be happy? Of course not, but this was my internal battle with the grief of learning my perfectly special little boy had special needs.

I’m naturally a happy optimistic person. I know how to find the light, the optimistic solution, the positive in just about anything. So when we learned our son had Williams Syndrome (WS) we were sad, then pissed, then sad again. That rotation continued for awhile.

Being such new parents, (1 month into the role) we had so many hopes and dreams for our son. Some dreams that we truly did need to let go of. Should we have expectations for our children to carry out our ‘dream’ for them? Probably not. But we can have hopes and dreams and support them in their development to do whatever they dream to do… and really that is exactly what we are doing today, but 10 years ago we needed to learn to bath him properly, much less learn to accept a different parenting path.

After all, we didn’t choose this path.  We chose to be parents, but not this path in particular.

“God only gives special kids to special parents.”

I heard this so often I started to resent it. The more I think about it, the less I think it’s true. All kids are special if we choose to dig into their hearts, their personalities and the characteristics that truly make them who they are… then lift that up and celebrate it those special characteristics come to the surface and shine.

I also think when given the opportunity to be a parent, it’s a job, a duty if you will where you choose the level of effort you’re going to put into it. Will you train yourself to evolve, as needed? Will you choose to improve yourself in ways that benefit your children? Will you be open to constructive criticism or God forbid maybe even ask for help? We all have special kids. It’s up to us to cherish them and build up their confidence so they truly know and demonstrate to the world just how amazing they are.

Paul and I had dinner out before commuting home that afternoon after leaving the hospital. We needed to sit down and reflect on what we just learned. Our finally full and resting little baby Carter slept in his carseat next to us and we sat there looking at his beautiful chubby cheeks and pouty little lips. I remember the feeling of disbelief, yet the grief of knowing. We knew. We did. There were too many signs and symptoms that aligned perfectly. Literally, all signs point to yes. Yes, our little boy has Williams Syndrome.

Williams Syndrome Grief Understanding the diagnosis
Carter at 4 months old

I remember wanting to hold on to hope that maybe the results of the FISH test, which stands for (fluorescent in-situ hybridization) would possibly come back negative. I don’t know how long it takes for results to come back from genetics today, but 10 years ago it was an excruciating 2-week wait. When the results came back, I received a call from that same cardiologist that tilted our world on it’s axis just two-weeks prior. An additional casual conversation that confirmed the suspicion. I remember crying, again. The grief overtook the hope and I felt helpless.

Before hanging up the phone, I said, “Okay… so what do I do now?!” His reply was simple.

“You take care of him and give him lots of love. Make an appointment with your pediatrician and they will go over the steps with you, but don’t worry too much about that right now. Just take care of him.”

That’s it?

I wanted a manual and a planner! I wanted to stay on the phone with him for hours so he could tell me what to do next, who to call, what appointments to arrange. I wanted him to tell me what the future would look like. I wanted more, so much more.

What I didn’t know is that I had it all already. I had the drive to learn, the love in my heart, the commitment of my husband to walk on this parenting path with me, and our family to support us along the way.

Williams Syndrome Baby

Shortly after the diagnosis, I recall a brief encounter with an friend at a gas station, “Congratulations! How’s the baby? Healthy?”

That one word question, “Healthy?” 

My heart felt heavy. I felt ashamed that my baby wasn’t perfect and because I felt ashamed, I was disappointed in myself. Why was I ashamed of myself? Why had I added extra guilt to my plate? I had a right to grieve. I had every right in the world to be sad. And I had every right in the world to circumvent the conversation and tell them exactly what they wanted to hear. I said…

“Yes, he’s perfect.”

He was in my eyes… and the truth wasn’t any of their business, after all this person was just an acquaintance and did they really want to hear the truth during this casual assumption that everything must be perfect? This made me think…

How would we tell our family and closest friends?

My parents knew. My sister and Paul’s brother’s family knew. But extended family and close friends didn’t… I had no desire to have the conversation ever again. I didn’t want to hear one more apology, even if it was sincere.

I opted for a hand-written letter that I made copies of and mailed. I would love to have a copy of that letter today. I’m sure looking back at where I’ve came in 10 years as a person, I would have written the letter completely differently. In fact, I wouldn’t write a letter today. Today, I would wait and have the conversations when the time was right. When I was ready to talk about it.

But here’s the thing, it’s not about me or my need to have or not have the conversation back then or today. I’ve grown as a person and as a mom to know and understand that. It’s about my little boy, his needs, his health and his development.

A few months later we followed up with the cardiologist and learned that the hole in heart had closed on it’s own. I give all the glory to God for that. We prayed over him many times and feel that was an answered prayer.

Williams Syndrome Grief 2

We knew we had a lot more to learn about this parenting path we were on, but knowing his heart was in the clear for now, we felt like we were starting to accept this path and put the grieving behind us. After all, we had a beautiful little package to unfold…

Part 3… Acceptance. (Coming soon)

Please comment below with any questions you may have and consider sharing this blog with your friends.

xoxo

Kerri

If you have any questions for me, please contact Kerri Kava at 1MinnesotaMom@gmail.com or on social media at:

Follow us on Facebook

Find us on Twitter

Inspo on Instagram

Pinning on Pinterest

Go to Google+

 

 

My baby has Williams Syndrome?

It’s been 10 years, 4 surgeries, hundreds, if not thousands of therapy and doctors appointments, as well as dozens of unique challenges that turned our life in a different direction when Carter was born.

Our first born, we were excited and clueless as hell, but that’s most new parents… really. When someone asks about what Williams Syndrome is, first, I should say, this is rare. It feels like most of the people I talk to feel like they should somehow already know at this point. He’s 10 now, after-all. But really, if it’s not a part of your daily life, I don’t expect you to know or understand. So, I’m happy to tell the story. It brings awareness and helps him carryout his mission: To bring joy to the world.

Over this series, I plan to share about:

  • The story of when we learned our son has Williams Syndrome (WS)
  • How having a child with WS is different from having a child who does not
  • How to support someone you know with a special needs child
  • Stories to better understand extraordinary gifts and unique challenges of Williams Syndrome
  • Tips, tricks and items that made challenges easier along the way

Let me tell our story.

When our oldest son, Carter, was born the doctors said some scary things.  Any attempt to gently warn us that something might be wrong fell on deaf ears with me. I actually remember blocking it out. I was sitting in the hospital bed, just hours post-op from an emergency cesarean. I literally couldn’t feel my knees and it was like a movie when music starts playing and you can hear the doctors talking, but you can’t understand what they’re saying. It was exactly that. I caught enough to understand this…

“We aren’t sure what’s wrong with your son…” 

Now me, being the positive thinker I am, it pissed this new momma off. Why the hell would they come in here with this fake negativity and tell me there’s something wrong with my baby when there clearly is not?

Paul helped me fill in the blanks.

“We aren’t sure what’s wrong with your son, but… we think he may have something wrong with him. He has several abnormalities (4-5 of them). Now 1-2 can be normal and explained through family traits, but typically not 4-5 of them.

Some of the things they noticed were:

  • a low hair line;
  • shorter forearms;
  • shorter thighs;
  • a bridge in his inner eye; and
  • a long space between his nose and his lips

williams syndrome 2 diagnosis

I wouldn’t have noticed any of the above characteristics without literally measuring him the way they do in hospitals, so at the time, it made no sense to me.

So to say that I didn’t accept this news well, was an understatement. Absolutely no class, let me tell you. I gave them best RBF and brushed them off. I cried and used my optimistic attitude to pretend like they have no idea what the hell they are talking about. Even though they are doctors… Yes, I realize how ridiculous that sounds.

We got home and our little man really struggled to eat. At first I thought, well nursing is hard so of course we are having troubles. Eventually, we tried a bottle. When that too was a struggle and we could tell that Carter was in pain, we brought him to the doctor. It was determined that he needed some acid reflux medication, but while listening to his heart, his pediatrician also heard a slight heart murmur.

Luckily, the next day we were able to get in to see the cardiologist. It may have been over 10 years ago, but I remember this day like it was yesterday. I brought my squeaky wiggly 4-week-old baby boy and laid him down on the crinkly paper to be examined in a dark room. I was able to lay down next to him while they lathered his baby chest with petroleum jelly. Upset that it was cold, I comforted him and his sweet little lips protruded. Praying that all was well, the 30 minutes it actually took felt like 4 hours… and unfortunately the technician cannot tell you anything. The results have to be read by the cardiologist.

It wasn’t much later, I met with the cardiologist to hear the results. Carter did have a small hole in his heart. One that we would continue to watch closely. What we were not expecting to find out that cool fall day, was that this doctor knew what the pediatricians prior to him did not. He knew my son has Williams Syndrome.

Minimizing it still, like I did the day he was born, I casually asked for a brochure. You know, like this is something that will go away, like lice or something.

Yes, I actually thought it was going away. See… clueless!

He eased into it a bit and said, ‘No, this isn’t something we see often. This is a very rare condition.’ He shared with me that my son would most likely have learning delays, experience feeding and texture problems and typically have extensive health concerns, including problems with his heart.

After this brief, casual, life-altering momentous conversation, we were directed to the lab for a blood draw. The first of many blood draws Carter would experience in his life. This was the hardest part of the day. The moment I knew what was likely wrong with my son, but I had to keep it together (at least until I left the hospital).

Or so I thought, but this is for another blog post altogether.

My husbands work didn’t allow him to attend this appointment, so in the short walk from cardiology to the lab, I called to update him. That, and I wanted him to Google the syndrome.

Seriously, what is this?

That day I learned that 1 month old babies have teeny tiny little veins. Their veins are so small that you need the tiniest needle and laser accuracy. The first attempt caused Carter’s blood vessel to burst. A screaming tired, hungry baby who is now in pain from a bruised arm and I needed to pump in the worst way because at this point, I was well past my normal schedule. I had nowhere to warm up a bottle and I started to grow frustrated.

My expressions said it all, so the nurses kindly offered to give us a few minutes. It was a moment of stress, but also a moment of solidarity. One of the very few times he was actually willing to latch on and eat was right at that crucial moment. He didn’t eat long. The low tone in his muscles made him too tired to keep going, but he was no longer hungry and that’s what mattered at that moment.

Eventually a phlebotomist did find his little vein. They made a call to a gal from another area of the hospital who came and found his baby vein on the first try. She must be the expert they call in when necessary. That day, it didn’t matter who she was. I wanted to hug her. Then cry on her, but I didn’t. I left. I packed my 1 month old perfect beautiful little boy in our car and I called my husband to get an update on his Google research.

The short story…

“It’s not good, honey. Williams Syndrome encompasses developmental delays and medical problems. Usually people with WS live with their parents for the rest of their lives.”

williams syndrome 1 diagnosis

Part 2 – click here.

Please comment, share and ask any questions that you are curious about so I can include it in the next post.

xoxo

Kerri

If you have any questions for me, please contact Kerri Kava at 1MinnesotaMom@gmail.com or on social media at:

Follow us on Facebook

Find us on Twitter

Inspo on Instagram

Pinning on Pinterest

Go to Google+

 

%d bloggers like this: