Family Togetherness

With the developments and renovations getting ready for the upcoming brewery opening, things are even crazier and busier than our regular daily life. Taking a little time out for a proper celebration of Hayes was definitely a much needed event! All of Brian's side of the family was able to make it and most of mine was, too! We also had some of our wonderful friends in attendance! I think Hayes knew this was a party just for him! The weather was perfect, and Yea-Yea (Brian's mom) made a wonderful birthday cake especially for our special boy! We were prepared for a huge mess with his smash cake, but he was actually not messy at all. That was a huge surprise...especially knowing our busy boy! 

Kennedy enjoyed helping get things set up and decorated for Hayes' party! She was also excited to get some Big Sister presents from Aunt Gigi & Yea-Yea brought her. She also had a field day playing with all of Hayes' new toys! Oh, the perks of being a big sister! 

After months of paperwork, denials, appeals, more paperwork, waiting, we finally received approval for Drake's new stander! However, when they called to arrange delivery, they let me know that due to the changeover to managed care taking place on November 1, they would not have enough time to get the stander we had ordered. My options were, to accept a stander that they already had in stock, or we could start the process over again. With those two options, I decided to give the stander they had in stock a try. Trying to coordinate with their delivery from Dallas and Drake's PT being here to verify that this stander would meet all of our needs was much harder than I would have thought. After 3 failed scheduled times, everything finally fell into place! Now Drake has plenty of growing room, and I think he likes his new stander! 

Wonderful cake!

Helping decorate!

Hayes loves his cousin Jacob!

Cousins

Playground fun!

Drake enjoying his grandmas!

The bar is under construction!

This boy loves hearing bubble wrap!

Just making Drakey laugh!

Playing with toys!

Loves his comfy outfit!

Big boy in his new stander!!

Appointments...Appointments...Appointments

My goodness we have been all over the map handling appointments for all 3 kiddos this past week. It all started with an ultra sound for sweet Hayes. His PCP felt an abdominal mass during his 1 year appointment and send us to get it checked out. “Hopefully it’s nothing, but we just want to make sure.” Of course! No worries…I won’t let the worst case scenario jump into my head! I’m sure no parents do that! I will say that I refused the first appointment given to us. It was scheduled for 1:30 in the afternoon and they said he couldn’t have anything to eat or drink for 6 hours before. Umm..no, sorry. My 12 month old will not understand us withholding food and drink for his entire day. A new appointment date and time were given…6:45am! Hayes was not thrilled when I got him out of his crib at 6am, but we did it. Did he corporate? Definitely not! However, he did about as well as you would guess a 12 month old would do being held down for an ultra sound. Luckily, I had a bottle in the cooler ready for him when finished along with some pumpkin bread! 

Next up was Kennedy’s appointment in Dallas with the Endocrinologist. It would have been helpful to know all of the questions on the paperwork in preparation for our visit. Luckily, Nurse Lisa was at our house and I was able to call and get her to grab Kennedy’s discharge paperwork from the file cabinet so that I could answer all of the necessary questions (Birth weight & length I knew, but head circumference and APGAR score I did not). Crisis averted! The good news is that the doctor was pleased with Kennedy’s progression on her height and weight since her referral in July. They will continue to see her about every 6 months over the next few years. Growth hormones were mentioned, but that is not the direction anyone wants to go at this time. I was pleased that the doctors also said they would rather let Mother Nature take its course and only intervene if it is absolutely necessary. 

Yesterday, was Drake’s turn at the doctor. This was the 1^st vent clinic appointment not to have Kennedy with us in the car. She had school, so she stayed with her daddy. He took her to school, picked her up, and she hung out at the brewery with her daddy while he worked for the rest of the day. Hayes was with us and Mimi met us at our usual meeting location to pick him up. This was our first vent clinic appointment with our new nurse! Everything went very smoothly and Drake got an excellent report from his doctor! His chest x-ray was beautiful! His doctor was so pleased with his progress that he even wanted more information about Kyani. Asked and received. You can’t argue with data...Improved immune system, lack of hospitalizations, lack of infections, healthier lungs, excellent blood work! They are working on scheduling him for a sleep study. The purpose will be to determine if he can wean off of his vent at night or if his sleep apnea will cause him to be unable to completely wean.   

Now we are in full party mode! All of our family will be in town on Saturday to properly celebrate our little Hayes turning 1! Time to Party Plan! 

This is his 6am waiting room look

Snuggles!

Pretending to paint Drake's nails. Such a good sport!

Riot knows right where to be when Hayes has a snack cup!

Sharing!! It doesn't always happen with a smile, but it sure is nice when it does!

Silly boy!

Happiness!

Playing at the brewery!

Helping, too!

Running the show!

Cousins!

I love these boys!

Celebrating the NEW

Our past week has been filled with "NEW": 

>Hayes has entered a NEW year in his life

>Our Brewery was delivered NEW equipment 

>We officially began with our NEW day nurse

While change and NEW are usually met with opposition, each of these were met with open arms for our family. Hayes has decided since he is the BIG 1 that he is ready to take a few steps! He's not running across any rooms yet, but it definitely won't be long! 

Our brewery is really starting to come along! We've had 2 shipments in the past week and our final equipment will arrive on Friday! We've had fun being with Daddy and Uncle Matt for each of the deliveries! Fun Fact...We've learned that Daddy has some pretty amazing forklift skills! Not that it really surprises me! Seeing the building really begin to take shape is building excitement and anticipation! 

Our new nurse began last week. She is a very fast learner and has a wonderful demeanor working with Drake, and interacting with Kennedy and Hayes, too! Drake seems to be responding well to her! There are a lot of variables with finding the right nurse: competency level as a nurse, compassion with Drake, and fit with our family (including Harlee & Riot). Our new nurse is a really good fit for our family! 

Grocery shopping with these two was pretty fun and definitely entertaining!

B/c every birthday boy needs cake!

Yum!

Happy Birthday!!

Bedtime!

He's getting a little big for her!

Standing it the middle of the room!!

Celebrating Papa's Birthday!

Watching Daddy & Uncle Matt unload equipment!

Helping Daddy!

Having a little picnic lunch at the brewery!

Breathing treatment! 

She got to add her handprint to the concrete slab for our Glical Chiller!

She loves our neighbor's Halloween decoration! 

More deliveries!

Overseeing everything!

Teamwork!

Kennedy and I attended a wonderful musical put on by Robert E Lee High School with our friend, Eleni. It was wonderful seeing many of my former students on stage! What was Kennedy's favorite part...

The candy!!

1 Year!

I'm not even sure how it is possible that we will wake up tomorrow morning to the sweetest smiling face of a 1 year old!! Hayes' 1st year of life has literally flown by! Our baby boy will be a One Year Old! I'm still trying to wrap my brain around that. Plus, I believe this will transition him from being my baby into the Toddler category...(sad face for mommy). But..it is time to celebrate our joyful little boy who has completed our little family! Tomorrow we will bake a cake (b/c according to Kennedy that is the most important part) and celebrate with our little family, and later this month we will celebrate with grandparents, aunts, uncles & cousins! A true celebration for a special little boy! 

Our sweet friend, Harper, spent the day with us last week. She was a trooper! Daddy took care of Hayes so that Kennedy, Harper & I could go to gymnastics and get a little shopping done at Hobby Lobby. Both of which could have been accomplished with Hayes in tow, but it was much easier with just the girls! Hayes had fun with daddy, too! Kennedy had been wanting to play with Harper for a while, so it was wonderful watching them interact throughout the day. Everyone did an excellent job of sharing, helping and being kind to one another.

Drake's Speech Therapist had a mobile swallow study team come out to our house. Things did not start out well. Drake does not do well with new people, new settings, warm temperatures, ect... The lead in the team wanted to give up, but Lisa and I stepped in and kind of took over. Once the AC was cranked up, his personal chair was brought in, and Lisa and I were the only two people working with him, everything changed! He passed! We have been cleared to continue working on tasting trials!   

Our kiddos had a fun weekend with Mimi while Brian and I were visiting his family down in New Braunfels! It would not be possible for us to go out of town at all without the support of family...especially, Mimi! Not only does Mimi enjoy spending time with her grand-kids, but they get excited to have her in town, too! This makes the transition of us leaving very smooth. Kennedy is really good at talking Mimi into special treats...like sleeping in mommy and daddy's room. I guess a grandparents job is really to spoil the kids...lucky for Drake, Kennedy & Hayes! 

Happy Birthday to Hayes!!

Everyone is excited about Hayes' bday!

Harper watching Kennedy at gymnastics!

Hobby Lobby!

Play-dough fun!

Kitchen time!

Kennedy is really enjoying school!

I love when he is tired and snuggly!