Wednesday, April 27, 2016

S'more Fun!

We have really been enjoying this beautiful spring weather complete with feeding ducks, riding bikes, popping bubbles, and making s'mores! It is safe to say that Kennedy is a HUGE fan of s'mores & we will definitely be doing that again soon! It's been fun enjoying the outdoors with all 3 of our kiddos! Kennedy absolutely loved having a play-date with Harper! She has been talking all about going over to Harper's house to play! I can already tell it is going to be really fun watching these two girls grow up together! 

Today was another visit to vent clinic, so we headed to Dallas early this morning. Drake's appointment was long (3hrs) but it was also really great! The Pulmonologist was not the one that we usually see, but the nurse practitioner with him is the one we see at every vent clinic. She was amazed at how great Drake looks and is doing! She even asked for more information on the supplements he is taking! We are making some pretty big changes with him on vent settings and treatments. We are doing away with his backup rate, extending his breathing treatments from every 4hrs to every 6hrs, cutting one of his meds from twice each day to once, and adjusting his feeds! I have requesting to change his food, and they are checking with our DME company and our insurance. In his current food, the 2nd ingredient listed is corn syrup. The new food I've requested is whole food plant based. We've seen his improvements by adding supplements, and I believe this nutritious food will also make a difference. 

Hayes loves sitting on the floor playing with his toys, and really he loves just being in the mix of everything! Kennedy had dance pictures this week and they did a little dancing in their recital costumes! She LOVED it!! She may not actually do the correct dance during the recital, but at least she will look cute on stage! 

Today we were treated with a wonderful surprise on our way to vent clinic. One of our dear friends, and former nurses from Presby, was with Mimi when she met us to pick up Kennedy and Hayes! Our crazy journey has taken us down a path we could have never anticipated; however along the way our life has been impacted by some truly wonderful people we would have not known otherwise. 

Beaming with pride!


Roasting marshmallows 


Feeding the ducks!

Enjoying the outdoors!

Hands full!

Vent clinic!

All worn out!

Our happy baby!

Boy time!

Our tiny dancer!

Our little hot mess!

Tuesday, April 19, 2016

Daily Life

We have been very busy with Drake's regular schedule of daily therapies and Kennedy's dance & gymnastics. That along with Brian's activities and my stuff make for very full weeks, but also allows plenty of solid family time! It's hard to believe, but Brian and I even squeezed in a date night this week! An actual dinner out with just the two of us! It was long overdue and we will definitely have to do that again soon! 

On Friday our little Kennedy took a big spill while running in the driveway. It hurt my heart to witness. I felt like it happened in slow motion because I saw her falling but I couldn't prevent it from happening. All I could do was rush to scoop her up! Daddy jumped in with a first aid kit for bandaging boo-boos. She requested an ice pack; however, as soon as daddy had her new bicycle put together, she was instantly better! 

Drake's improved head control has been noticed by all of his therapist. They have also been commenting on his posturing, sitting, lack of drooling, and overall improvements! When in his stander, we used to have to use a Velcro wrap to hold his head in an upright position. We no longer have to use that wrap! We have been setting Drake up in his chair with his activity board during his breathing treatments. Today I witnessed Drake pick up his Oball (baby toy with holes easy for holding) and lift it up to eye level...not just once, but twice! 

Hayes is growing and changing daily! He has discovered his little voice and talks to us with sweet baby babble! Of course Brian is thrilled that dada is a favorite little babble. We missed Brian this weekend while he was on a fishing trip at the coast. He said that it was not the best fishing, and they had to cut the trip short due to the weather. Luckily, they made it home safely without any major issues. And even though they didn't limit out on fish, they still brought some home! 

Im so thankful our sweet nurse captured this moment without me even knowing it! 

Brothers hanging out!

Kennedy's self portrait!

Hayes is getting so big!

Balance bike!

Date night!

These boys!

Another precious moment captured by our sweet nurse!

Yes, Kennedy is laying on her tummy during dance class. No, that is not at all what she is supposed to be doing. Oh, there is no telling what she will do during the recital! 

Tuesday, April 12, 2016


We found out some news today; sad & happy at the same time! Drake is progressing so well with speech therapy, (swallowing, managing secretions, communicating, etc.) that he is graduating from high risk therapy and into the NOT so high risk! While this is exciting, we are sad to be losing our current speech therapist who has been with us the past 2 years! Although she has assured us that we are not losing her her completely, she'll definitely be around as a lifelong friend!! 

Kennedy got to spend some quality time with her daddy in the great outdoors. A favorite for the both of them! She even caught her first fish! Not just one fish, but FOUR!! 3 perch and a catfish! On Saturday Kennedy and I went to a makeup day for dance class that she missed back in January. On our drive home, Kennedy told me another little girl asked her if she was a baby. Kennedy replied, and I quote, " No, I'm not a baby! I'm three!" And if anyone has had a conversation with Kennedy, she definitely said it matter of factly. 

Hayes has been teething, which is not fun. He is generally so happy, seeing him upset and inconsolable makes for long days. We are looking forward to his bottom teeth breaking through! The good news is that this too shall pass. 

Kennedy loves her Drakey!

Reading books to her brothers!

Happy boy!

Look at that sweet baby! 


Nice catch! 

Her 1st fish!

Backyard Bubbles! Everything is better with bubbles! 

The boys!

Daddy's biggest fan!

Our baby is 6 months old!!!

Tuesday, April 5, 2016

6 Months

Today marks 6 months that we have been a family of 5! It's hard to believe Hayes has been with us for half a year, but our life wouldn't be complete without him! Today was a busy day of appointments with both boys! Hayes had his 6 month appointment this morning and he jumped up in weight this time! 16# 9oz which is the 30th percentile! He was in the 16th percentile for height. Today got away from me and I didn't get his 6 month picture taken, so I will have to do that tomorrow. 

This afternoon Drake had an appointment to adjust his leg braces. He hasn't outgrown them, but we did need some changes made in order to make them more comfortable. Drake is doing really well with all of this therapies and adjusting to the weather changes. I'm really looking forward to our next visit to vent clinic at the end of this month! 

Kennedy, our little entertainer, has been keeping our household full of always! Now she is even making up her own bedtime stories:
"Once upon a time, there was a baby. 
Then he tried to snuggle with a dump truck, but it was too hard.
Then he tried to snuggle with a box of crayons, but it was too messy.
Then he tried to snuggle with a warm, soft blankie, and it was JUST RIGHT!" 

I'm sure all parents feel this way, but we look forward to every new accomplishment, funny story, smile, laughter, ect...each day with Drake, Kennedy and Hayes! Witnessing their joy is definitely an indescribable feeling! Can't wait to see what tomorrow will bring! 

The sweetest 6 month old!

Snuggles with mommy!

He's all over the room! 

The bubble machine was the hit of cousin Chase's birthday party! Best news...we found out at the party that Chase will be a big brother in September! I'm getting another nephew! 

She loves playing with her cousins! 

Snuggles with Daddy!