Parson Dean - Part 1

Its been about a year since I wrote a blog post. Ironically enough this particular post is the beginning of the story about why its been so long. I also really hope it gives hope to parents and children on the same journey.

This same week last year, 2016 Parson was gearing up to start Kindergarten. Three full days of school and bus ridings. It was official...he was a school aged boy.

I guess leading into this story I need to back track a few years. Fall 2016 was not Parsons first school experience. His first school experience was when he was three. That would have been the 2014/2015 school year. He was all registered with a larger private school in our town. We went to orientation and he and we were excited.

He started school and days into the school year the reports started. "Lack of self control", "Below age level", "Loud noises", "Large motor movements at inappropriate times." He was only at school two days a week for a few hours. I would walk into the school to pick him up from his classroom filled with fear. What was the report today? Did he hit someone? Was the teacher able to teach the class? Did he learn anything? Did he spend all his time in the thinking chair? Each day the report was the same. He wasn't handling school well, at all. He did okay some days but  most not.

Im not talking academics. P had no problem with academics, well any besides fine motor skills. He could recognize and name all his letters, numbers, colors, and had a good vocabulary even though he didn't speak clearly. He also had a vast knowledge of school busses. He was always our "emotional" or "dramatic child". At this point Wyatt was just a few months old so, to us, he was just him. We didn't think anything of his behavior except that he was strong willed and loud.

Parent teacher conferences roll along and I meet with his teacher. His teacher who I still to this day appreciate tremendously, looked me in the eyes and said somethings not quite right. She suggested we talk to our Pediatrician about getting him some occupational therapy and speech therapy. I called the pediatrician on the way home from conferences and left a message. She got us a referral and I called and made the appointment. This was fall 2014.

To get appointments like this take time. Lots of time, lots of phone calls and paperwork. Bonus round, health insurance does NOT like paying for anything to do with Occupational therapy, Speech therapy, Sensory Processing Disorder, Autism Spectrum Disorder, Aspergers or anything alone the lines. Not without a written diagnosis and not without a fight.

Anyway. I get the three appointments for Parson made at Mary Free Bed Hospital. A local  well equipped rehabilitation hospital. January of 2015 he will be evaluated for a multitude of things by an Occupational Therapist, Pedatric Psychologist, and Speech Therapist. Wyatt had just turned one and would be spending the 4 plus hours with my Aunt at her in home daycare just a few miles away from the hospital we would be at. Aaron was out of town traveling for work and I was newly pregnant with Hannah.

We did all of the evaluations, hours and hours of them. P was a trooper. The therapists made it lots of fun for him but it was still a lot of work. After everything was done, all of the therapists looked at me and said. "Inconclusive, Too high functioning, Too young to tell, Too much eye contact, No motor planning delay." They agreed something wasn't right, but they didn't know at this moment.

We had the option of continuing evaluations at MFB Hospital at out of pocket costs. Im not talking a few hundred bucks guys, thousands and thousands of dollars to maybe find out what was going on in his three year old self. We decided with the help of his pediatrician that continuing these inconclusive evaluations wasn't the right next step.

The summer of 2015 we tried everything under the sun to help Parson with his sensory needs and to try and minimize his meltdowns. A wrong sock, seam, noise, or change of schedule would throw him into a tail spin. I have so many pictures of him melting down close to as many of him happy. We didn't go to public places. We tried to avoid family gatherings. We left church, small groups all kinds of things early because he couldn't handle it. We didn't eat in a restaurant for years because it was always too much. We tried every supplement that every blog, article, magazine suggested. We cut everything from his diet, sycilytes, artificial dyes, sweeteners, gluten, a lot of dairy. We used essential oils, magnesium baths, vitamins, herbs, exercise, no media at all, some media, and more gross motor exercise. Somethings helped a little and some didn't help at all.

Fast forward to Fall of 2015. Im at this point hugely pregnant with Hannah. P is starting K4 at another small private school. Smaller than the last, but the school Aaron attended for 1st through senior year grade, that I attended for my senior year. We had dreams of our kids going to this school. We couldn't wait for Parson to start. To have the same teachers his Dad and Uncle did. It was nostalgic and so special. This should have been so special. I was terrified. I don't even really know how to put into words the fear that I had going into this year.

A few days into the school year the reports and calls started coming in. I would pick him up, get the news about his day and walk as quickly out of the building as I could. The moment we would get in the car I would silently start to sob. Id text Aaron and say "He hates school. I hate school. Why does this have to be so hard for him. He does not have friends. He's not learning." Every school day we would leave the same way for the entire school year.

Not only is watching your son struggle, not have friends, to be labeled and seen as "the bad kid". Im not saying the school labeled him, I am not even saying his teacher said that, she didn't. I think you understand what I'm getting at here. On top of all of this, theres the other parents.  Id like to say what they think or thought didn't bother me, but of course it did. Many times when a child is acting out or the way Parson did you know adults are thinking "Dang that kids parents need to get him under control." I know I thought this same way until we had Parson.

This next moment at the end of this school year changed they way I interact with children and parents alike. A child from his class walked up to me and said "My family member said that Parson is bad. He's bad because you let him do whatever he wants and he does not have any consequences." You guys , this is a five year old child talking to me about what their adult family member said about my child. I looked at the student and said "Parson has consequences for his actions just like you and anyone else does when they make bad choices. I grabbed P and I practically ran out the door.

Though I may have responded decently to the student. I wanted to shake their family member. I wanted to shake them and say you have no idea. No idea how many things we've tried, how many books we've read. How many times I have had to hold my child until they scream themselves out so hard that they are nearly asleep. Be cautious when you are speaking around your children. They hear you. Be slow to judge when you see a child and parent having a difficult time. You never know what they are going through until you are in their shoes.

We had a nice scheduled summer. On Mondays we baked, on Tuesdays we went to the beach and library, on Wednesdays they spent time with their Grandma, on Thursdays we went to a special park and on Fridays we had pizza night. Rinse and repeat the whole summer. Constancy made our family run as smooth as possible.

I read nine books the summer of 2016 on parenting techniques, helping your child succeed in the classroom, strong willed children, and on children with high functioning special needs in the classroom. All along they way praying, God you know him. He's struggling, I know he's made perfectly, just they way you designed him but help me, help him. I am flying blind here. Just tell me what to do.

I felt equipped for the 2016/2017 school year. I put him on the bus the first day of school and we were all excited. I was pressing down the fear that was welling up in my soul and letting the optimism show. All the while begging God for a better year.

Media. The good, the bad and the crazy.

**Disclaimer** 

**By no means is this post boasting, supposed to make you feel guilt, or start a "Mom War."**

That being said...all negative comments an move along kindly.

Media. Ipads, TV, Laptops, Cell Phones, Leapsters, ect. We are surrounded by it. Our kids are surrounded by it. Personally, I love it. I mean, Aaron works in media. Our lives and lively hood revolve around media.

Media can be good. It keeps us in touch with friends and family. Aids learning. It's fun and relaxing for some. Ebooks, E-Bibles, online school, Facebook, Kids websites and game. Educational...well not Facebook really, But have you seen those Tasty videos?! Its like cooking school!

Media can be bad. It opens doors to addictions that before media were much harder to get to. Online gambling, Pornography, ideology, judgement, and cyber bullying. Not that these things didn't happen before...but it was harder.

Media can be crazy. There is no start and finish, Netflix binge anyone *raises hand*. Its a brain suck. You literally withdrawal from media, "Screens", just as you would caffeine.  It makes it hard to sleep, it makes it hard to focus, it makes my kids crazy.

That last note, "It makes our kids crazy". Guys, I'm not joking. They turn into crazy people when they have to much media. Like, screaming aliens.

Aaron and I saw this. We saw how the kids behavior changed literally drastically when they had all the media. When I say all the media I mean, about an hour of shows in the morning when they woke up, about an hour at 4pm when I was cooking dinner, and then one short show after baths before bed. So 2.5 hours of media time per day. Then, I would say to myself, "They are not even getting that much media time! They won't be affected by it!" But they were.

Aaron and I made a crazy decision.  A decision that isn't right for everyone, frankly I don't think its right for us sometimes! We decided to cut out ALL media. Everything, TV, educational websites, leap pens, cell phones in waiting rooms, all of it.

Our kids don't have any media at all Sunday through Friday evening. Friday evening we do family movie night and on Saturday we let them watch a show or two when they wake up. Thats it. They are getting the amount of screen time in a whole week that they used to get per day.

Its been crazy. They withdrew. I withdrew. How the heck was I going to get ANYTHING done without a brain suck for them? It took about a week of constant "I WANT SCREEN TIME!" "Please Mama just one Daniel Tiger" YOU KNOW HOW HARD IT IS TO SAY NO TO DANIEL. It.was.rough.

Some beautiful things started to happen. They used there imaginations, they played togather and didn't need me, because their brains were thinking clearly. They do art work and listen to muisc and a few books on tape. They are making up games and doing puzzles. Not because the screens were taken away, not to earn the media time, but because they have learned that there is way more than just media for "fun". We are cooking, reading and cleaning together, and enjoying it.

They are dirty and tired at the end of the day. My house is so messy at the end of the day. I am exhausted at the end of the day. But they are happy. They are happy children, not entertained zombies.

Like I said, this isn't for everyone. Maybe your the lucky one who's children don't turn into tiny crazy people with media. Most days I am thankful we did this. Lots of mornings I wish I could just drink my coffee to the sound of PBS Kids rather than the active playing off the bat.

The benefits outweigh the odds for us every day of the week. Even when I think about throwing in the towel we make it through and we are never sorry that we did this.

- Patty

Figuring out how to fill your cup.

A few months ago I read one of those posts that says "You can't pour from and empty cup, take care of yourself first". I thought, that's right! I matter and I'm going to choose a goal and make time for me and make it happen. My family will be just fine. 

So, I decided to take up running. Training for a half marathon to be exact. I LOVE running. For 11 weeks I ran regularly 3-4 times a day. The first 8 weeks were physically challenging and not too time consuming. It was an easy way for me to get out for 30min to an hour a day. It was cleansing for my soul to. I felt so great after a run!

I got to run races with my bestie. We got to talk about all things running and connect and share a same interest on a different level than we had in a while. It was glorious! 

The training runs got longer. I kept saying it's only 9 more weeks. You need to fill your cup first, remember your better when you do this. Except I wasn't feeling better.

I mean physically yes! I lost weight, I ran ten miles without stopping, which had been a goal of mine for a long time! I was connecting with my friends and making time for me! 

Something was missing. I was missing precious time. Precious hours during the week. Dinners and bedtimes. Aaron would get home from work and I'd have dinner ready. Instead of sitting down to eat with my family, I left him at the table with the kids and I would go run. Taking care of me, right? 

Why was I feeling so awful when I was supposed to be feeing great? When I was filling my own cup? Achieving my own goals?

I realized a few things. First. I really do LOVE running. I got my body strong enough to run eleven miles. That felt so good. I had a goal and I was SO close to reaching it. Two. My family is what fills my cup right now. I was missing so much. To many it may seem like nothing. What's a few hours a week? To me, to my life right now, those hours are precious. 

It came down to priority. What were my priorities? I choose them. 

I chose my kids and my husband. Not because I felt like I had to. Not because Aaron couldn't do it. I chose them because they fill my cup.

Someday, I won't have faces to wipe. I won't have early bedtime stories to tell and bath water to be splashed by. Someday I will have time to run all the miles I want. 

Until then, I'm proud of how hard I ran and how many hours I made happen per week. 

People fill their cups there own unique ways. No one way works for each person and one way is wrong. This, this is what's right for me. 

- Patty

Quinoa Power Bowl with Cilantro Lime Drizzle

Im taking a quick break from writing about Wyatts journey to share this recipe with you guys!

A few weeks ago I jumped on the power bowl/smoothie bowl trend. I don't consider myself a "trendy" person at all, ask any of my friends they will attest to my confidence in my "uncool-ness". That being said, I do love a good food trend...mostly because I love good food.

SO, power bowls and smoothie bowls (appeared) to be easy to make and filled with all the yummy things that I eat on a regular basis anyway. As well as something I could throw together and eat quickly. I am very guilty of just eating the last two chicken nuggets left over from the kids. (There is a post coming on that too!) I was perusing Pinterest and came across a few recipes that looked great. I went to the grocery store (without a list, see fail below) and was prepared to buy all the things I would need to make some delicious meals.

I got home and unpacked all the groceries that I bought just to realize I had a ton of yummy delicious things...all of them being an ingredient for one or the other recipe but not the ingredients for a complete recipe. (should have brought that list)

Armed with confidence I tried anyway...this is what I ended up with.

It looked delicious, so naturally I posted a picture on Instagram, grabbed a diet coke and took my first bite.

Hmm I thought. Its not terrible. I could eat the cilantro lime drizzle on a spoon without anything else. Sweet potato, perfect. Tomatoes great. The quinoa and the spinach arugula mix....not good. It was bitter and had a super strange texture. ALSO. I added Tofu. Oddly enough the tofu was delicious....not delicious on a power bowl.

Lesson learned with the power bowl thing. Keep it simple with like flavors...don't just throw what you have in the bowl. Unless you like strange textures and bitter greens.

It was not a total fail...the cilantro lime dressing is to die for! Ill share that recipe with you guys below because its life changing. Eat it on everything...you won't be sorry.

Bon appetit!

Patty


Cilantro Lime Dressing

1/4 C Plain greek yogurt
1/4 C Chopped fresh cilantro
Juice of 1/2 a lime
A pinch of salt, pepper, and chili powder
A squirt or two of Sriracha (I added this, it wasn't in the original recipe from Spoonfull Of Flavor)


Blend until smooth and enjoy! 

Wyatt Stanley - Part Two

If you missed part one of Wyatts journey you can read it here.

Wyatt at 15 months 'army crawling' around the playground.

I had just gotten off the phone with our pediatrician. She said it was time to see a neurologist and to get an physical therapy consultation. She gave me the name of her first pick pedatric neurologist and a program in our area called Early On for PT.

When I hung up the phone, I didn't know what to do. I sat on the edge of our fire place for a few moments just watching the boys play. Thinking, "There is something wrong with my baby." I started to research elevated pedatric CK enzyme. Things like Muscular Dystrophy and Williams Syndrome came up. I learned more about the CK enzyme and what the possible causes could be. As a mother, I hit my knees more and cried out to Jesus more than ever. But this, this was a different kind of prayer, a prayer of desperation. Pleading with God, "Please, just let my Wyatt be okay."

I called Dr. Syodes office to get Wyatt a first consultation. I spoke with the scheduling nurse and she said that it would be a SIX week wait. I thought, hold on. Wyatt needs a consultation, theres something wrong, how am I supposed to wait SIX weeks?  We heard a lot of "well maybe its not to serious since they don't want you in tomorrow" type stuff. Which I get the good behind the comment, I get the support and love that was behind it. SO, if I seemed rude when that comment was made, I am sorry. Every single time I heard that, I thought,  "yeah maybe." Maybe my child situation isn't warranting a emergent run to the nearest neurologist. Maybe that just means the neurologist is so busy with other kids with illnesses and syndromes (insert a whole slew of angry conversations I had with Jesus) Regardless, something is wrong with my child...as a Mama (bear) it does not matter what the problem is, no matter how big or how small. You want it fixed, figured out, solved, whatever...right now. How was I supposed to wonder, and think, and research for SIX weeks before our appointment. The nurse said to call once a week to see if you can get a cancellations appointment. So, I called every other day. After about a week of me calling they found an appointment for Wyatt a few days later.

Two days before out first neurology appointment, Wyatt had his initial evaluation with our case worker from Early On. Aime, from the start was just so kind and reassuring. She did her evaluation and looked at me at the end and said "Wyatt has the gross motor skills of a 8-9 month old infant" Yep, thats right. My at this point, my 16 month old toddler had the gross motor skills of an infant. He should be learning to run and kick a ball, instead he's learning to crawl and pull up.

Let me add quickly. We told our family, close friends and life group what was going on shortly after we figured this all out. Guys, I don't think we or Wyatt will ever know the amount of people that were praying for him and us. The kindness and support we got from people was (and is) astounding, and we are forever grateful for every single one of you that dropped off treats (or wine) and came and prayed with us and for us. Really, thank you.

One person in particular went out of her way, she deserves the most beautiful angel wings and extra sparkly halo. That person is my friend Jeannie. Jeannie went above and beyond supporting me, listening to me, praying with me and for me and Wyatt. Jeannie has a daughter who has lots of needs and who is sick. Jeannie understood. Even though Wyatts situation was no where near similar to her Rivers, she was there. She understood what it felt like for a Mama to have something be wrong with their child. She just was there every single time I needed her. I don't even think she knows just how much she meant to me and our family through this.

Two days later, we dropped Parson off at Grandmas and drove to GR to meet Dr. Syode. We walked into his office and it was clean with brightly painted walls. We checked in and waited no more than a few moments before the nurse called us back.

She did the standard weigh and measure and asked us a billion questions about family history. She smiled and said that Dr. Syode would be in shortly. When he came in, he was bright and kind. He asked us questions and did a pretty good evaluation of Wyatt. Then he said its obvious that he has myopathy throughout his body, much more so in his lower half. Then he said we needed more blood work and a urine test. He also said that these results would take four to six weeks to get back because they needed to be sent to Mayo Clinic. Awesome. Apparently these neurologists like to do things in six week increments, and I didn't think calling every other day would move it any quicker this time. Im totally kidding. BUT really?! SIX weeks. So he told us where to go to get the labs done and made a a follow up appointment with him shortly after.

I dropped Aaron off at work, gave grandma an update and off to the hospital I went. I wasn't going to mess around with the other labs first this time. I got to the hospital with my only army crawling 15 month old. You know whats gross? Hospital floors. Hospital floors that your 15 month olds face is two inches from when moving. Naturally I didn't let Wyatt crawl all over the hospital, he snuggled up in the sling next to my growing belly with little sister inside.

The nurse called us back and said we needed to get Wyatt setup for the urine sample first. She said she wanted to get the collection bag on him and in his diaper first. She said she wanted it first because they needed to draw a lot of blood, that they would need to draw from both arms. That the pain from the blood draw usually made the toddlers urinate enough for the sample. Im pretty sure thats when my eyes started to fill with tears. She asked "Does blood make you queasy?" No, the thought of my child urinating in response to pain does though. I didn't say that, but I sure thought it.

Another note. I have such a respect for parents and families that have children that are ill and have to do this on a regular basis. I just don't know how they do it. How they watch their children go through things like this daily.

We got Wyatt situated and then they did the blood draws. They needed five or six viles of blood. I don't remember which because it was crazy. After the blood draw was over, I scooped Wyatt up to comfort him and get him calmed down. Then we checked his urine collection bag. You guys, there was so little urine in that bag, you would have thought he hadn't drank anything for days. The nurse was as surprised as I was.  She sent me home with a goody bad of urine collection bags, a sterile container and a whole bunch of other fun stuff. She told me the lab hours and said to try and get a collection at home and just bring it back and drop it off.

Let me just say, getting a urine sample from a little boy who drags his torso and lower half across the floor and sleeps on his tummy is damn near impossible. Well, totally impossible. I went through 14 collection bags over a few days and did not even get 1ml of urine. I even brought him to the pediatricians office to have a nurse place the bag...nothing. Fantastic.

So we met with our PT for the first time and started working very aggressively with Wyatt to get his gross motor skills up to par.

Two weeks later he started to crawl on all fours and pull up!

We waited our six weeks and packed our things and headed to our follow up with Dr. Syode. He received the blood work back from Mayo and said that Wyatts CK enzyme was still elevated higher than he'd like to see. He also said it wasn't high enough to point flags at degenerative muscular dystrophies either. Thank you Lord for that answered prayer. He said he thought it could maybe metabolic, that maybe his body wasn't processing nutrition or waste properly. But, guess what he needed to confirm that....the urine results.

So we got good news of it probably not being a degenerative muscular dystrophy. We also were still in the dark because we still had no idea what was causing this for our Wyatt. We also still had to try and get that urine sample.

We made our next appointment and had a plan. Keep on working with PT aggressively and get that stinking sample.

xo

Patty

Wyatt Stanley Part 1

Our sweet and spunky Wyatt. He is kind, soft spoken, and such a typical sweet little boy. He loves trains, his brother and is such a Daddys boy.

Wyatt had a rough year. He had more blood drawn that I have had my whole life. He's seen nurologists, had a year of PT, and has worked so so hard to over come muscle myopathy.

When Wyatt hit six months old we went to his well check. He was a healthy big boy just like his big brother. He wasn't crawling yet, but no one was worried. After all, Parson didn't crawl till he was nearly one!

Fastforward to his one year appointment. Still a healthy, happy, talkative big guy! He still wasn't crawling. He would army crawl and pull himself around with his arms on his belly. He didn't pull up and didn't know how to get from laying to sitting. We thought, he is just a late bloomer. No one was worried. We would give it a few more months.

We went to his 15 month appointment. He was still healthy. He was starting to string words together, he had more words than Parson ever did at this age. He was so happy all the time! He still wasn't crawling, he still was not pulling up, or getting to sitting on his own. His pediatrician told us it was time to look into it. To find out why he was just so far behind...not just a little delayed.

We got X-rays first. At this point I was a few months pregnant with Hannah. You know what ill never forget. Ill never forget my 15 month old screaming behind a door while a nurse talks sweetly to him so they can X-ray his hips, legs, and feet. Wishing I could be in there with him. We waited a few days. The X-rays came back normal....thats good right?

Then we got blood work. The first lab couldn't find his tiny veins. So we packed up and went to the hospital. Parson was so nervous. He didn't like watching his little brother get poked anymore than I did. Thankfully, the nurse was able to get the blood draw on the first poke. They said you'll know the results in a few days.

A few days past and I missed a call from Wyatts pediatrician. A message that said "Hi Patty, this is Dr. Locke. I got Wyatts blood work back, can you please call me." First I thought, well we have a great relationship with our pediatrician, maybe she was calling to tell me good news! I returned her call. She was and is so kind and explains things so well to us. She said that Wyatts CK (Creatine Kinase) enzyme level was elevated. Not just a little elevated. Elevated enough that we needed to go see a neurologist.

xo

Patty

Influenster - Super Mom Vox Box!

A few months ago I heard about the Influenster Vox Box from a friend. Its a way to fill out brief surveys and get sent a box of new products to try and review for the companies. Its pretty fun! I always look forward to my next box!

The last Vox Box I got was a Super Mom Box. I was pleasently surprised with the products I received since they were brands I don't generally grab for.

One of the products I got in my box was Suave Kids Purely Fun 3-1 Shampoo, Conditioner, and Body Wash.

I won't lie, I NEVER grab Suave products. At first glance, I was a little disappointed when I opened by box and saw this item. My Wyatt has super fine hair and sensitive skin, so I figured it would be best to try this on him. At first I was so surprised about how good it smelled! Usually things with labels like "Pure" and "Simple" don't have any scent...and I am a sucker for a nice smelling product! Besides that it washed really well and was ACTUALLY tear free (which isn't always true). It left Wyatts hair clean, not greasy, and not weighed down. It worked well on Parsons thick curly hair to! Over all this product was a win in our book! 

There was another Suave product in my box. It was a coconut oil hair mask. NOT good for my thin Mama hair. Not something I would recommend for anyone with thin hair that is easily weighed down. 

The third item in the box that I wouldn't usually grab for was Palmolive Fusion Clean Dish Soap.  I won't lie. I am a blue Dawn or Method girl when it comes to dish soap. Again, I was pleasantly surprised by the Palmolive! It got my dishes clean without scrubbing, took care of toddler gunk and didn't leave soap scum behind on my dishes or on my sink! Another win in this box! 

There were a few other products in my Super Mom Vox box, squeezable Daisy Sour Cream, kids dental flossers, pens and deodorant. Ill save those reviews for another post!

xo

Patty