Tuesday, November 29, 2016

Getting in the Spirit!

The smell of apple cider on the stove, twinkling lights adorning the tree, and bright eyed children eager to help decorate…absolute perfection! After the hustle and bustle of family and food (oh, so much food) for Thanksgiving, a quiet evening with just us getting the tree ready for Christmas was exactly what we needed. The tree was a little heavily decorated on the bottom portion, but Kennedy thought it looked perfect & it did! Although, ornaments were a little more evenly distributed after bedtime. The next morning Kennedy told me she had an idea…”Let’s take the ornaments off the tree and put them back on again!” It wasn’t easy to convince her that wasn’t a good plan, but distraction helped and we moved on to another activity. 

Thanksgiving was a huge success! We had ALL of Brian’s family in town to celebrate and we ate our delicious meal at the brewery. What a blessing to celebrate and spend time with Brian’s family on Thursday and my family on Friday! Luckily we were not completely turkey”ed” out. We had enchiladas on Thursday and traditional turkey and dressing on Friday! 

We’re getting ready to visit Santa this week! I plan to take both Kennedy and Hayes. Drake is going to stay home for several reasons: he doesn’t like loud noises/places (loud noises induce seizures), he doesn’t like unfamiliar people, and he is much happier at home. I would love to have Drake in a Santa photo with Kennedy and Hayes, but I know he would not enjoy it. That would be creating a memory for me, and I would much rather have my little man happy. He sure did look cute wearing his Santa hat around our house! 

Drake struggled with a cold/virus over the past week. Several of our nurses had the same thing. One missed over a week of work! It’s always difficult to see Drake when he is not feeling himself, but we are extremely thankful to have the nursing and equipment at home that allowed us to keep him out of the hospital. Truly a blessing! We are pleased he is completely off of oxygen support now and tolerating time off of the vent again. First and foremost our number one goal is to keep Drake healthy. Next, we want him happy and then we support him to reach his full potential. We are pleased to be back on track with everything! 
Hanging of our 1st ornament!

Daddy & Hayes helped get out decorations 

A little team work!

Little Santa!


The little climber!!

Gigi brought presents!

Everyone loves the sleeping bag!

Getting better!

Sometimes breathing treatments just wear you out!

Our little Thanksgiving Indian! 

Out like a light!

New toy!! Thank you nurse Lindsey!

Thanksgiving with the Gilstraps! 


4 Generations of Gilstrap Guys! 

Tuesday, November 15, 2016

New Wheels

New Wheels!

This morning our sweet Drake was delivered his very 1st wheelchair! His blue chair was classified as a stroller for special needs, but this is a true Big Boy chair! It seems so fancy! Custom built just to meet Drake’s needs and can grow with him for many years to come! It even has his name embroidered on the seat! As exciting as new equipment is for us and other children with special needs, it doesn’t just magically appear one day. So much time, paperwork, and phone calls go into each and every piece of equipment. Forms are filled out, turned in and the wait begins. Everything is reviewed, more information is requested, more information is sent, and we wait. Sometimes we are denied. Then we start the process over again or thankfully get to use a piece of equipment that has been donated from another family. Every piece of equipment is the accumulation of generally 4-6 months of paperwork, justification, and phone calls. To say we are thankful to finally receive a much needed piece of equipment is a bit of an understatement! I’m sure this is true for all families who go through the process. The time and effort put forth from our therapists and doctors is greatly appreciated! We are also thankful to have been able to donate our previously “loved” apparatuses to other children who may be denied something that will help them meet their full potential. 

What have our days consisted of…work, work work! That’s ok! We’re hard at work getting ready to open our family business! That requires all hands on deck, long days & some team work! Even Meredith, Aaron & their kids came in town to pitch in and help out! Kennedy has been mostly excited about painting! It’s quite possible her masterpiece has been covered up, but we loved seeing her artistic talents! Everyone is curious about our opening date, and I wish I had one to tell. Our goal is mid to late December, but we won’t have an exact date for several more weeks. There are still many variables to fall into place before we can commit to an exact date. I will keep everyone posted! 


Testing it out! We had 3 men from the DMV company and 2 therapists here to insure Drake as set up for success!

Kennedy tested it out, too!

Just a little cartoon time!

Excellent job!

A few special little handprints!


The brew-house has been matchbox car approved!

These two!!!

Morning vitamins!!

Just lounging around!

Riot is such a sweet boy!!

A little play time at our little friend's birthday party!

Tuesday, November 8, 2016


First, I would like to apologize for not posting last week. Things have been…crazy! Not that things are ever calm, cool & collected around our house, but I would categorize it as organized, lively, and structured. Having a routine is good for all kids, and especially good for Drake! Lately, his routine has changed. I’m here with him every morning for his 1st therapy of the day, and then we pack up and head to the brewery to work. What breaks my heart is that Drake’s sweet nurse told me that for the first 30min after I say goodbye to him, he cries. Talk about pulling at my heartstrings! I make sure to cover him with hugs and kisses when we return (after a good hand washing, of course!). Even Hayes was full of hugs for his big brother this evening!
All smiles with my boy!

Being inventive with his button! Learning new ways to press the button.

Love his determination!
Just walking around!

Our days are long and our nights are short…even with the recent time change. All of our hard work will pay off very soon! It’s really fun seeing things start to come together! Kennedy and Hayes have been troopers hanging out and helping at the brewery. These have been long days for our little ones, too! Family and teamwork have been the key to our progress so far! Brian’s mom, Yea-yea, is in town putting her amazing artistic skills to work on our brick wall! I can’t wait to see the finished product! My brother-in-law, Aaron, was here for a couple of days last week helping out, and he plans to come back to help again this week. We are extremely grateful for him using his PTO days to help us get our building ready for opening! Brian’s dad, Papa, has been instrumental in creating the bar, tables, and overall carpentry of everything! 
Helping Yea-yea paint!

Our little helpers!

Daddy & Uncle Matt busy, busy!

Great work, Papa!

Thank you for helping, Uncle Aaron!

In the midst of our busy full days we did make time to celebrate Halloween with our neighborhood friends! What a fun evening!! The houses in our neighborhood are pretty spread out, so a Halloween Hayride complete with lights, spider webs and decorations was perfect! A fun night with our kiddos surrounded by friends is exactly what we needed after a long day!
Neighborhood crew!

Our Pirate family & monkey!

One where our little monkey isn't upset


The Dude!! Fun to trick or treat at Uncle Matt's!

We’ve been little short handed…it’s that time of year…we’ve had some nurses out sick or out with sick kids. Some shifts have been picked up by our other regular nurses, but others have been open. We were actually without a nurse this past weekend. Originally we didn’t have coverage on Friday (day shift), Saturday (day shift), Saturday (night shift), Sunday (night shift), and Monday (day shift). Luckily, we had one of our regular nurses pick up Friday (day) and Monday (day), we also had a regular night nurse pick up part of our Saturday (night shift). He asked if it would be ok to come in late. Absolutely! Brian was busy at the building all day on Saturday. We were all thankful to have him home with us on Sunday! My Sunday went much smoother with him here to help out. Saturday I felt like I was in the middle of a game of musical chairs and I was definitely never winning. 

My Monday morning conversation with Kennedy:
K- Are you going to be Drakey’s nurse today?
Me – No, Misty will be here today.
K – So you’re going to be my mommy today?
Me – Sweetie, even when I’m Drake’s nurse, I’m always your mommy!  

Trying to help my sweet girl understand that mommy can wear multiple hats at the same time and it doesn’t change the one constant of being mommy to her, Drake & Hayes. 

Love this guy! No night nurse. I got Drake to sleep & went to shower. When I got back, Drake was awake and Brian was settling him back to sleep.

Nighttime snuggles with mommy as night nurse!