Tuesday, October 28, 2014

Fun! Fun! Fun!

Daddy is on a hunting trip in North Dakota, but that hasn’t stopped us from having fun here at home! This beautiful October weather has been perfect for enjoying some walking in our neighborhood. Drake really seems to enjoy being outside...as long as the sun is not in his eyes. Kennedy has discovered the playground in the homeowners park down by the lake, and she loves it! She is still a little small for some of the equipment, but that doesn’t seem to bother her at all.

We also had a fun surprise visitor this weekend...Nurse Angie’s husband is a Smith County Sheriff. He brought his police vehicle over for Drake and Kennedy to check out. It was full
of electronics, gadgets, lights, ect...I know Brian wished he had been here to check it out himself. My neighbors were a little concerned about a police vehicle with lights flashing in our driveway. Not to worry...I was able to quickly ease their fears. My favorite part was when Drake grabbed his badge! I love that he is really beginning to use his hands! Nurse Angie is full of surprises...she also brought supplies for Halloween mini pizzas and cupcakes! Kennedy LOVED helping in the kitchen and Drake was right in mix watching everything in his stander. It was fun watching Kennedy enjoy her creations, and I let Drake try a little chocolate, too!

Thanks to our wonderful friends, I had a fun “Mommy’s Night Out” on Saturday! Harper’s mommy and daddy agreed to watch Kennedy at the last minute, and I was able to attend a local fundraiser. Drake was home safe and sound with his night nurse. At the event, I was asked what I do for a living...hmm...I do so many things...technically, I am a stay-at-home mom. Wow! That’s the first time I have ever said that. Drake and Kennedy are two years old and this was the first time I have ever said that. It felt strange answering that question, but I know that I am exactly where I am supposed to be in my life. The seven phone calls to the pharmacy and doctor’s office yesterday in order to get a needed prescription filled for Drake was proof positive that I am indeed needed here at home. 

Look, I can hold my head up when I want to!

Playing with his snake souvenir from the zoo!

Special visit from a community helper!

Chillin' in a cop car!

She wasn't quite brave enough to sit in the car, but she was willing to take a picture. 

Drakey grabbing his badge! 

Helping nurse Angie with the icing! 

Helping decorate and caught in an M&M trance! 

Chocolate icing!!!

Enjoying her hard work! 

Fun at the park!


Tummy time with Harper! 

Sweet babies!

This is his "Mom, she's touching me!" look! 

Girls Night!!!!

Tuesday, October 21, 2014

Out & About

Our weekend was full of errands, chores, and a little fun! We planned on cleaning the house after our errands, but we sure are glad that our friends talked us into attending a local festival...Vine Day at Kiepersol Vineyard. Kennedy was such a good girl! A two year old can be an emotional roller-coaster so I’m quite thankful we had a happy girl with us. Although, she does seem to hold the extreme mood swings in for our home viewing. 
 We were without a night nurse on Sunday night, but we made it through. Drake didn’t sleep the entire night; however, he did sleep for the majority. For some reason, Kennedy woke up during the night, too. At one point, it was pretty crowded on the couch with Kennedy, Harlee and me. I was excited to sleep back in my own bed last night! Lisa came in early on Monday morning to help out…”Thank you, Lisa!”
 Yesterday we had a HUGE adventure to the Caldwell Zoo! My friend and her precious little girl (Stacy and Grace) met us there. This was a 1st for Drake, Harper and Grace! Nurse Lisa learned pretty quickly that after our many years of teaching and field trips, Stacy and I know the zoo by heart. The weather was perfect and all of the kiddos did an amazing job! We chose a Monday strategically to avoid crowds. Schools don’t tend to have field trips on Mondays; therefore, it was a nice quiet day at the zoo with minimal other guests. 
 Speaking of getting out and about...I was invited to attend a continued education conference for therapist here in Tyler on Friday. The topic was High Risk Infants and I had already been asked if Drake could be used as a Case Study. We gladly agreed and gathered the information needed several weeks ago. I was also asked to speak as a parent about what we look for in a therapist coming into our home to work with our son. What an honor to represent the parents of special needs children! Brian and I discussed what is most important to us, and I’m sure it isn’t surprising that we look for someone to treat our child and not his diagnoses. We love when our therapists see the potential in Drake that we see in him, and when they are not afraid to push him toward meeting his full potential.
Fun at the Caldwell Zoo!
Look, mama!
Drake, Lisa & a rhino!
A walk in our neighborhood with Harper & Grace!

Drake holding Harper!

Shopping at Sam's!

Kiepersol Vine Day!

Saturday night fun at Harper's house! The Grant kitchen was full of laughter!

He loves to shake, shake, shake!!! Love his smile!

Wednesday, October 15, 2014

Not Our Norm

Just like anything new, after enough time a new normal is established. Even having nurses in our home 24hrs each day has eventually become what we are accustom to in our daily life. However, when that normalcy is interrupted, so is our routine. Over the weekend, we were without our night nurse on both Saturday night and Sunday night. Finding replacement nurses is difficult in home health, but coming up with fill-ins who are qualified to care for "high risk" patients on both a trach and vent are nearly impossible. Even though we knew it would be a long shot, we asked the nursing agency to please try. Unfortunately, they were unable to come up with a replacement and mommy/daddy became the night duty nurses. 

I feel like this is something we are both quite capable of doing, and we did do this for a month and a half returning from BOCH (Baylor Our Children's House) until our current nursing staff was established. However, Saturday morning I ran in a half marathon just north of Dallas and then drove home to enjoy some exciting college football games. I was extremely tired and planning to hit the hay early on Saturday night...this did not happen. We received a phone call from the nursing agency at 7pm letting us know that our night nurse (who usually arrives at 8:30) was ill and would not be able to work. This is completely understandable, and we would never want to risk Drake being exposed to germs or illness. Despite being tired, we had a nice family evening complete with our family of 4 sitting around the dinner table. After Kennedy went to bed, Brian and I watched some football in the living room with Drake. I took the first night shift and Brian took the 2nd. After our day nurse arrived, I headed back to bed for some additional zzz's. Luckily for me...Kennedy slept pretty late on Sunday morning. 

Early Sunday afternoon my phone rang during trach care. I was busy so whoever it was would have to wait for a call back. Immediately following that call Brian's phone began ringing. Ok, this must be important. I could only hear Brian's half of the conversation, but I deciphered enough to know our other night nurse would not be in on Sunday night. She was out with a severe migraine. After trach care, I headed to our room and did my best to take a nap. I was resting up for the night shift. I'm very glad that I rested, even if it was just for a short time, because Drake did not sleep very much on Sunday night. Consequently, I did not sleep very much either. I took the entire night shift because Brian had to get up and be out the door early on Monday for his work day. However, thankfully he did get up with Kennedy when she woke up in the middle of the night due to the thunderstorms. Also, both of our day nurses helped out tremendously. One stayed late and the other came in early. 

Despite the lack of sleep on Sunday night, Kennedy, Harper and I headed out early to visit my great-aunt at a nursing home in Fort Worth. We already had this planned and I did not want to cancel. We met Gran(Mimi) in Mesquite and she rode with us for the remainder of our journey. We girls had such a fun day! We had lunch with my mom's cousin (which makes her my first cousin once removed, but that is very confusing). Then we headed to the nursing home to visit my great-aunt (Drake and Kennedy's Great-Great Aunt....I think). She is 90 years old and she looks fabulous! Kennedy was enthralled with her collection of colored stemware that she had arranged in a vibrant pattern along the windowsill. It conjured up warm memories of those same glasses in her home when we would visit as a child. It was a very special moment for me having my sweet great-aunt meet Kennedy. I only wish Drake could have joined us for our trip. 

This brings me to Tuesday, which did not feel like a Tuesday to me at all. In fact, I thought it was quite strange yesterday when I saw my neighbor's trash can at the end of their driveway. Once I realized it actually was trash day (Tuesday), I had definitely missed the trash man. Oops! Brian is thankfully home almost every single night now that he has switched to covering the East Texas market instead of the Dallas market. This is fantastic! God is good! However, having him home on a Tuesday is one more reason that my normal has been thrown off this week. Therefore, all of these mixed together are the reasons why this particular blog is being posted on Wednesday instead of Tuesday...I completely forgot.

Drake has been hard at work with his therapies and increasing the time he uses his PMV (Passy Muir Valve). He is doing great in his stander even though sometimes he refuses to lift his head. When he does this, we simply tilt him back a touch to decrease how much gravity he is working against. Kennedy still loves pushing him all over the house and has worked out her own method of steering. 

Sweet message for Papa!

Matching shirts!

Just "standing" around in the kitchen!

Bedtime story with Daddy!

Mommy's half marathon!

Uncle Aaron & me at the finish line! I couldn't smile because I was busy eating the snacks and refreshments! 

Kennedy with Cousin Sharon!

Kennedy and her Great-Great Aunt Jane Ray!

Group picture!

This is Drake's "I don't want to lift my head" look

Now, that's better! 

Taking Bubba for a ride!

Gotta love a random selfie surprise on my phone! 

Tuesday, October 7, 2014

A Little Spoiling!

Brian and I had a fun weekend get away, and we left our precious kiddos in excellent hands...Gran(Mimi) and Poppy! We are blessed to have such wonderful family willing to step in and let us have a little time off. While we were gone, one of Drake's nurses brought pumpkins for painting! We loved receiving pictures of all of their fun activities while we were out of town! It's football season...so with my parents that means Drake and Kennedy are now well versed in college football! We could tell that Kennedy had fun with her Grandparents, and I know they had a wonderful time, too! However, they looked a little tuckered out themselves so I'm sure they were ready to get back home and rest up for their next visit! 

Drake's special needs car seat arrived today!!! We began the process back in May, and have been eager for things to fall into place! He doesn't travel in the car very often these days, but when he does, it's usually for extended periods of time. This one will provide extra support for our little man, and it is rated for up to 105#. He'll be able to use this for quite some time! We'll be testing it out for the 1st time tomorrow when we head to the pediatricians office for their flu shots. 

Tummy Time swing!!!

Pumpkin painting!

Hand painting!

Drake did some painting, too!

Football time!

Playing in her room!

Love this!
Pjs, Drake's swim hat, Mimi's iPad...I have no words! 

Sweet boy!

This was her running through the maze last week in Dallas. Pure joy!