Thursday, April 6, 2017

The Knock

It’s a real and constant fear that we live with on a daily basis. Even on a good day, it is always a possibility. Once you become a mom, sleeping through sounds and noises becomes an impossible feat. Somehow parenthood just doesn’t have the same sleep altering effect on dads. How he doesn’t hear crying through the baby monitor, I will never understand. I know becoming a feather light sleeper and becoming acutely aware of every sound made is something with which all moms can relate.

 The knock comes on our bedroom door in the middle of the night from our nurse on duty. We never know when it is coming and I honestly jump out of bed so fast that I really have no idea what time it is when we are summoned. The past two nights we have received the dreaded knock. All we know at the time is that something is wrong. It’s kind of like getting a phone call in the middle of the night…it’s never good news. I’m still a little surprised as to how quickly this 7.5mo pregnant lady can leap out of bed. You would think there was a spring pushing me!

Night 1 – Drake was running a fever and heart rate elevated. We decided the best course of action would be to give extra water and begin a two week course of inhaled antibiotics. Drake showed improvements, but had a restful night.

Night 2 – Drake was having a large prolonged seizure requiring rescue medications. He was still running a fever after Tylenol. We sat with him and monitored his vitals, and we tried our best to provide comfort through his fears. I can only imagine how scary a seizure is for anyone; especially a child.

I wrote the above portion of this blog a week and a half ago. I am happy to say that today Drake is doing much, much better! He will finish up this round of his Tobi medication on Monday night. We will continue to work hard to ensure we can keep him healthy. This crazy Texas boomerang weather isn’t helping matters, but we’ll do the best that we can.

Kennedy is loving pre-K, and I learned this week that she is holding her pencil correctly at school. I guess it’s just here at home that she is refusing to do it. I can live with that. She and Hayes are playing together more, which is fun to watch. Yes, they get frustrated with one another and they argue over toys sometimes, but the majority of the time they get along. We’re pretty excited that we will soon be adding another little playmate into the mix. Although, she’s going to need a couple of years before she is going to be ready to run, play and keep up with the two of them.

Hayes is accomplishing new words on a regular basis now. One of our new favorites is “cookie.” I heard when he saw my dad this afternoon, he ran up to him saying “Poppy!” “Poppy!” I’m quite sure that made my dad’s day! Now, will he say any of those words this week at his upcoming 18mo check-up? I can pretty much guarantee that will be a no. And no will likely be the response during his appointment when asked any questions whatsoever.


We have another busy weekend and week ahead of us! I’m sure that isn’t a surprise. We will be praying for everything to go smoothly and allow for as much rest as possible. Hopefully it will be a very long time before we have another knock at our door. 

A future brewer! He loves visiting daddy at work!

All over the room!

Bubbles at the lake with friends!

He wore himself completely out...catching a nap during his breathing treatment.

Baby chicks at Tractor Supply...what a fun treat! 

They love their Riot & he is such a good sport! 

HUGS!

CHEESE!

Pizza for dinner while we visit daddy at the brewery! 

We got to have some fun with friends, too! 

Our little brew helpers! 

Sunday - Funday - Family-day! Walks in the neighborhood! 

I love these moments!

Rolling around the neighborhood with friends! I feel like this is a glimpse into our future.

Wednesday, March 15, 2017

Heartache

Hearing of the loss of a child strikes a chord and hurts my heart whether I know the child/family or not. Recently, our dear friends unexpectedly lost their infant son. The pain of that loss brings me to tears on a daily basis. Such a precious child who in his short time with us here on earth brought so much joy and taught everyone about strength, determination and a will to fight. I am one of the lucky ones. I knew him. I held him. I loved him. He suffered from a debilitating form of epilepsy. Through the pain, his mom and dad have started a fund to help raise money in his name for further research at UT Southwestern. His lifelong fight has already taught doctors how to better help children born with his same condition. With more research, future children will have a better chance of seizure control and survival. What a blessing sweet Knox was to us and will continue to be for so many future children & families. 

This recent loss reminded me of something I push to the back of my mind and try not to ever think about. Life expectancy. I live in reality and I know Drake's life expectancy isn't long. He has already beat what we were told & he continues to defy all odds! This is why that thought is pushed to the back of my mind, close up and locked away. The future for everyone is an unknown and I don't need a dark looming cloud hanging over my sweet boy. We live our life day to day and cherish each and every moment. That is my reality. Our sweet boy is already 4.5 years old! He's walking with the help of braces and equipment! He's communicating through electronics! He's learning and exploring through technology! The accomplishments we are getting to witness for our Drake make my heart swell with happiness! 

Our busy life...well, to say we are constantly on the go would be an understatement to say the least...just ask our nurses. Sadly we just lost one of our night nurses who has been with us for over a year. There is no possible way for me to explain what it's like to have nursing in your home 24/7. Unless you experience it first hand, it is simply not comprehensible. Drake and the family get used to them and they get used to us. Adjusting to change takes time for all of us. Plus, this time we are doing some nurse shuffling. We have a day nurse moving to nights, a one night/week nurse moving to one day/week. A day nurse picking up an extra day, which she will split that shift with our newly hired day nurse. See, even though this makes sense to me, I can see it sounds rather confusing written out. We are excited to have found a new nurse to join our team and she will begin with us in a couple of weeks. In the mean time, our other nurses have been picking up extra shifts and I have been working the shifts not covered. Do I sleep? When I can. 

My pregnancy is moving right along. We are approaching 29wks this Friday. It's kind of hard to believe we are already in the 3rd trimester - 7 months. I have to admit week 25 was eerie for me. It was with Hayes, too. Getting passed the point of my emergency c-section with Drake & Kennedy, the event that forever changed our lives, is an accomplishment we quietly cheer about. Each week after that is a blessing and we internally celebrate being one week closer to full term! 

My family...I really can't say enough wonderful things about my family! Starting a business is hard. We knew it wouldn't be easy, and we knew it would be time consuming. My family's willingness to help out with the kids each and every week is what has made getting our business off the ground possible and successful. Yes, we are aware of just how lucky we are to have the supportive family that we have. If I could change anything, I would have them live much closer.  



Cherish each moment with the ones you love! Don't let the craziness of daily life take away from the precious moments with the ones you hold dear. 

Breakfast at Mimi & Poppy's!

On a Roll!

Reunited with Drakey!

Silly Boy!

Lunch date with Daddy!

Hard at work!

Morning snuggles with Daddy!

I LOVE this photo of Kennedy & Elizabeth! 

Tea Party for Two! Cousin time!

Feeding the geese! 

Our little Builder!

Uncle Aaron bought her the biggest ice cream cone ever!
He's definitely braver than I am with ice cream in the car!

This boy loves his daddy! 

He's constantly entertaining us! 

Thursday, February 23, 2017

Assistive Technology

Drake has been hard a work with TISD for evaluations for assistive technology. They brought several different types of switches and communication devises in order to see what would work best for our little man. I was excited about what they brought for him, but also hesitant to make huge changes with him. Even though his Big Mac switches take much more effort on his part, he has gained so much range of motion and abilities with his arms over the past year by using them daily. Changing him to easier switches made me fear he would lose that arm strength. My concerns were validated by his therapist. In the end, we all agreed to leave his Big Mac switches like they are (More, Please and All Done). However, we added in a 3rd switch (New Toy). Each of these switches is represented by a different color: Yellow, Red and Blue. In addition to this, TISD has provided a small laptop and two easy switches for Drake to use. Right now the right switch holds two options (Sound or Movie). Once he selects Sound or Movie with his right hand, he has to then push the switch with his left hand to play the sound or movie. It sounds complicated, but Drake has figured it out already! It seem silly because he only has two options, but the idea is to build upon this and give him more options with time. His right switch and hand are used to click through the options. Once he hears the activity he wants, he uses his left hand to choose the selection. This devise can hold up to 30+ options! Obviously that will take some time, but two is a nice starting point. I attended an ARD with TISD on Tuesday to go over the evaluation with his team of educators and put all of his new goals into writing. Even though I have been frustrated with the process along the way, I was finally able to have my voice heard, and I believe we have come up with a very good plan for Drake.

We took a trip to Dallas on Thursday of last week to see his neurologist. He was pleased with Drake’s progress and everything that he is doing on a daily basis. We are getting labs done to check his levels, and we discussed starting a 2nd seizure medication. We have been in limbo about this for the past year, and if it will prevent him from having breakthrough huge seizures, we are willing to give it a try. Everything will depend on how his labs come back. We have not gone for labs yet because both Drake and Hayes came down with fevers and congestion over the weekend. Hayes started on Friday afternoon and Drake’s nurse woke me up in the early morning hours of Sunday. I consulted with his pulmonologist and made vent changes, increased breathing treatments, increased a once daily medication to twice each day, and began inhaled antibiotics that we keep on hand. By Monday, we collectively decided to begin steroids as well. He is currently on the vent full time and requiring oxygen. It seems like everywhere I go, even at the gas pump, I hear people coughing. AHHH!!! GERMS everywhere!!! This is exactly why we like to stay in our little bubble.

All of the kids had a trip to the dentist on Friday morning (before Hayes came down with a fever). Everyone did a great job and all dental health looks great! They did warn us that several more of Drake’s teeth are loose and will be coming out in the near future. How is he already old enough to be losing teeth? I still can’t believe it!

While we were up and out super early for Dallas on Thursday morning with Drake and Hayes, Daddy was in charge of getting Kennedy ready and dropping her off at school. After we were settled in at the waiting room, I sent Brian a message checking to see how things were going. He said they had a great morning, but were “running super late due to hair issues!” I couldn’t help but laugh out loud in the waiting room. Lisa picked Kennedy up from school and I requested a picture of her hair…I think he did pretty darn good! I asked Kennedy about Daddy fixing her hair and she told me her daddy said, “Kennedy, I don’t know what I am doing. Mommy is much better at this.” Oh, I wish I could have been a fly on the wall observing the process.

Hayes is growing by leaps and bounds! He has finally switched from calling me “MAW” to calling me “Mommy” and “Momma.” He is very good at it and calls me ALL of the time. Although, “Daddy” is still a favorite. If Daddy is here, he is the preferred parent. It may have something to do with the roughhousing and wrestling! Daddy’s are just better at that…well, at least better at that than a 6 month pregnant mommy. Hayes has never run a fever before so this past weekend was rough on all of us. So glad that both boys seem to be on the mend now.


This past Sunday both Hayes and his cousin were baptized at my home church in McKinney by pastor Tommy Brumett. This was very meaningful for our family. Not just because the boys were able to share this special occasion, but also because pastor Brumett baptized both Drake & Kennedy back when they were in the NICU. 

Hard at work with his new technology experiencing some independence! 


Love this boy!

You can't help but smile around this little guy! 

Cutie Pie!

Riot is such a good buddy for our sweet kiddos. Especially when they are under the weather. 

Morning snuggles! 

Mr. Independent! 

Watching sister do gymnastics! 

Nice job on her hair daddy! 

Our little Valentine Cutie! 

We're ON TAP around TOWN!!!! Next week I will post a pic with our new Tap Handles! 

My sweet baby boy! 

Hayes' baptism! 

I absolutely LOVE this picture captured by daddy! He is pure joy!! 



Tuesday, January 24, 2017

Stuck in Fast Forward

While our life is always a bit of a fast pace, this past month has felt like we are stuck in fast forward. Don’t get me wrong, I’m not complaining and I know this goes with the territory of opening a new business. Although, I will do a little (or maybe a great big) cheer when we are able to start distributing which will allow us to hire a few employees. Right now, it’s a 7 day/week gig for the three of us (Brian, Matt & me). My family is helping out tremendously with the kids and thankfully we have excellent nursing in place for Drake that we can trust implicitly. God is Good! Without our family and nurses, I would not be able to be hands on at our brewery to help things run smoothly on our busiest nights. Technology helps, too, allowing me to work remotely from home on various aspects needed to run our business. Sometimes you gotta love how far we have come with technology (although, I am by no means a techy). Google is my best friend when I need to quickly teach myself how to do something on the computer. Seriously, what did we do before Google?

Drake gave us a bit of a scare on Friday night. We were very busy at the brewery and arrived home after mid-night to check in with his night nurse, shower and crash in bed. A few hours later we were startled awake to a knock on our door. I sat straight up, but I was confused as to what had just awoken me. Brian called out, “yes” and through the door his nurse said, “Drake is having a seizure!” I leapt straight out of bed and rushed to his room. She had already pulled out his emergency meds, but had not yet administered them. She had not ever had to give him his emergency meds before, but for me this was not unfamiliar territory. I asked how long he had been seizing (5min) and we administered his meds. Then we began a timer to see if this would stop them in time or if we would need to move to plan B, 911. Thankfully, with the assistance of his emergency medication, he was finally able to pull out of his seizure circuit. He was, as you would imagine, exhausted from both the extended seizure and the medication. I sat with him in his bed while his nurse closely monitored his vitals until he was fast asleep and seizure free. Then, I headed back to my room to try and catch a little more sleep as the morning sunlight began to peek through the blinds. While I was still trying to calm my body and fall asleep, Brian’s alarm began alerting us that morning had arrived and it was time to get up. Brian quietly got up and ready for the day and instructed me to try and get some rest.

I ended up getting a little more sleep (thankfully) and I waited around the house for Drake to wake up and ensure he was acting like himself before heading up to the brewery. His nurse took things easy on him that day, but she did allow him to do a little time in his gait trainer, which he seemed to enjoy. I had my phone on me at all times waiting for any news good or bad. Luckily, every update was good and included some pictures! Definitely what I needed!

Kennedy and Hayes are about as easy going as kids can be traveling back and forth from being at home, to Mimi & Poppy’s and also Meredith & Aaron’s. As long as they have their security items, Facetime with us, and stay on their routine, our sweet kids are pretty much go with the flow. Plus, who doesn’t like to get a little spoiled by grandparents! Hayes has discovered that he thinks he is quite the Big Boy these days and can do Big Kid things all on his own. His favorite new obsession is brushing his teeth! He still needs our help, but I love that he is all about doing it himself. My phone conversation with Kennedy:
Me – Kennedy you are a good girl!
K – You are a good mommy, too!

Melts my heart! I’m currently 21 weeks with our new little princess and so far things are going really well. Brian is making sure if there is any down time at the tap room, he pulls up a chair and has me sit. Even though I am really good at finding things to do, he is making me rest (which I know I need to be doing).


Our current lifestyle is not a forever thing. This is just a little bump in the road that is all part of starting a new business. Through our hard work, teamwork and family help, we will have a new normal in place within a few short months.    

A little play time!

Such a happy boy!

Gotta love Free Play & Exploring! 

Beautiful weather for our local business!

Hard to believe this guy was struggling with seizures during the night. 

Back in action! 

Loves to brush his teeth! #HealthyHabits 

Missing my sweet baby! 

Silly Cousins! 

Looking sharp with their new hair cuts!