Tuesday, March 31, 2015

Early Easter

Mimi and Poppy came to town on Sunday for a visit! It's always fun when we get to spend time with family! We only wish we were able to get together more often. Drake and Kennedy were both eating up the attention from their grandparents! Kennedy was cracking them up as she was carrying on conversations with them. She has quite a personality! She is constantly making us laugh! My dad was able to see Drake in his gait trainer for the 1st time in person! It took Drake a little bit to get into his movement groove, but once he did, he went straight to the couch where Poppy & Mimi were sitting. 

Kennedy did some Easter Egg hunting in the backyard, and she really enjoyed it! She has been asking daily to pick up eggs outside. We'll see what she thinks on Saturday when her cousins, Jacob & Elizabeth, are here adding some friendly competition. 

I'm excited that Drake has been able to begin vent trials again! It's nice to have him disconnected from the vent...even for short periods of time! He definitely enjoys exploring movement in his gait trainer when he isn't tethered to the vent. I had forgotten how much quieter it is when the vent is off, too. We had become so used to the constant hum of the machine, having complete silence caught us off guard. 

To celebrate my birthday, Brian and our friend Chris, cooked some delicious crawfish! Several friends in our neighborhood came over to enjoy our crawfish feast! The boys did an excellent job! To combat the mosquitos, I mixed up a natural repellant using my Young Living oils. I sprayed both Kennedy and myself with it, and I am happy to say that we are both mosquito bite free! However, Brian did get many bites! He asked why I didn't offer my concoction to him and I told him that I had to make sure that it worked. Plus, I figured he would make fun of my for using the oils...that is until he knew they worked! Next time we will all get sprayed down! 

Monday was my actual birthday and Brian took Kennedy grocery shopping so that they could cook a nice dinner. Kennedy loves going on outings with daddy! He said she was busy naming all of the colors that she saw in the produce section when a random lady asked how old she was. When he told her 2 and a half, she was very impressed at how well she knows her colors. We think she's a pretty smart cookie!

This Friday, Saturday and Sunday we will be our first weekend without a day nurse. Brian and I will be working together to do the best we can for both Drake and Kennedy. Brian is going to be solo on Friday evening with Drake while I meet a couple of friends for dinner with Kennedy and Harper in tow. Harper's dad will be out of town and her mom has softball games to coach that night. This will definitely be an adventure, but I think it will be fun, too!  

He just loves being outside!

Tickle time!

Little Diva!

Kisses from Daddy!

Little cutie running errands with mommy & daddy!

Mommy's 1st time to joins Daddy & Kennedy at the park!

"I got you, daddy!"


Snuggle time with Mimi!

Thank you for the Easter baskets Mimi & Poppy!

He really likes the Mickey Mouse Clubhouse song!

Egg Hunt

Thanks for the help, Mimi!

I think she is ready for a real Easter Egg Hunt! 

Shopping with Daddy!



Such a good helper!

Tuesday, March 24, 2015

Spring is Here!

We are beyond excited to be able to spend quality time outside...all of us! We have been on several walks in our neighborhood, and simply enjoyed the beautiful weather from our backyard, too! Today we even took Drake outside on a vent trial...without his vent!!! He did amazing! We definitely plan to get Drake out as much as possible during the spring, summer and fall. I'm sure he gets tired of being stuck inside of the house all of the time...I know I sure do! The sweet sunshine is good for our soul, and I'm sure the vitamin D helps, too! Drake seemed absolutely relaxed and at ease while I was pushing him in the swing. His breathing was calm and easy...he just seemed comfortable. 

Our little Kennedy has done amazing with potty training!!! She is doing great telling us when she needs to go. If we need to leave the house, we have her "try to go" (and she always goes) right before we leave. We took her out to dinner to celebrate her accomplishments! She even went potty at the restaurant! We also took her to the Brookshire's Wildlife Museum as a special treat! We also wanted to squeeze in as much out of the house fun as we could while we still have our weekend day nurse. This weekend will be her last weekend with us. After that, it will be a while before we will be able to go anywhere on the weekends. Of course daddy can take Kennedy on outings or I can take Kennedy, but the three of us will not be able to go anywhere together. Even after we find a replacement, it is going to take some time before we will feel comfortable leaving Drake with him/her while we run errands. 

Although, we have come up with a fun outing for our entire family...we are planning to take both Drake and Kennedy to the Cherokee Trace Wildlife Park in Jacksonville soon. It's not that far from here and we will be able to drive though at our own pace. Drake loves to ride in the car and look out the window so this seems like a perfect family outing! Hopefully we will be able to go sometime in April. 

So here's to spring, to blooming flowers and brighter days. 

Lol...she went inside her playhouse to get her phone and pretend to take pictures like mommy.

I love how he is holding on with both hands!

Just chillin' 

A fun lawnmower ride with daddy!

Gait trainer time outside!

She asked to hold her bubba...the sweetest thing!

Sharing her love of books with Drake!

A special treat at our dinner out with friends!

The Brookshire's Wildlife Museum! 

Sharing a little ice cream with daddy before bed!

Helping mommy make pancakes! 

Tuesday, March 17, 2015

Sunny Days

After what seems like forever of dreary rain, we have enjoyed two beautiful days of sunshine! We took the opportunity to soak in as much outside time as possible! Drake even got to go for a nice long walk with us yesterday! He absolutely LOVED being outside. He was in his wheelchair/stroller which he has been fussing lately if we put him in it inside the house; however, outside he didn't fuss one time. He was calm and happy! I was afraid of him getting too hot (he's hot natured & his vent makes him even hotter) but even a little sweat didn't bother our boy. We sat in the shade on the patio after our walk and he watched & listened to Kennedy play. I felt bad when we finally took everyone inside, but it was time for Drake's breathing treatment & dinner.

Kennedy has been a little rock star with her potty training! We are extremely proud of her! Today she even told me she needed to go pee-pee while we were playing in the backyard. I quickly took her inside & sure enough she went potty. Then she was ready to come back outside and resume playing. This is a huge step! She had an accident playing outside the other day because she didn't want to stop to potty. 

We do have some bad news this week...we are losing one of our new nurses. She has been working for us 3 days each week and working at a clinic (where she has worked for a while) 2 days each week. Well, the clinic offered a big promotion and increase in her pay. We are happy for her, but sad for us. We can definitely see why they are snagging her back...she's great! Now the search is on for a replacement. We will be praying for someone who will be a good fit for our family. It's hard on all of us adjusting to new nurses. Our current nurse will be with us for the next two weeks, which will give our nursing agency some time to look for a replacement. 

The good news is that our week has been filled with more positives than negatives. We will continue to focus on the positive, and pray for a new amazing nurse to join our care team! 

Soaking in our sunshine! 

I absolutely LOVE getting this little guy outside!!!

The crew watching Kennedy slide down the slide. 

The girls are always ready for a walk!

As you can see, our lake is still a little high. 

Enjoying his time in the gait trainer!

That SMiLE!!!!!

All worn out!

Little goofball!

Photo of Drake captured by Kennedy.

Apparently Daddy gives better treats for using the potty! Kind of makes my single M&M not look like such a great treat. 

Tuesday, March 10, 2015

Rain, Rain Go Away!

We have been bombarded with rain, and plenty of it! Rain is good, needed and appreciated when it's not overflowing our lake. We've definitely had more of a flood since we've lived here, but it is starting to get too close for comfort. Hoping for some much needed sunlight to start drying out our yard. 

The rain brings with it an elevated humidity level which is hard on Drake's lungs. Poor little Drakey needed additional oxygen support starting on Saturday night. We also had to back off of his ventilator wean settings ordered by his Pulmonologist. The wean schedule was a step down schedule as tolorated by Drake. Since he was not able to tolerate, we have been forced to take a pause. We will try resuming things in the next few days. He's still done very well with his therapies, and his stamina is almost built back up to his norm.

Kennedy and I are working on potty training. She has so much patience sitting on the potty. She doesn't complain or try to get up. She "reads" books, has me read books to her, and watches her new show of choice "Paw Patrol." We have had some successful pee-pees in the potty, which she is quite proud of, and only a couple of accidents. She loves getting treats for using the potty! I've looked up many strategies on the Internet, but gladly accept any helpful techniques from parents who have already mastered the art of potty training.

Following his last stint in the hospital, we have kept his therapy schedule more spread out and gradually worked him back up to his usual activity level. We are thankful this has made a differences, and we pray for continued seizure free days. 

His happy smile is back!!!

Best friends!

Daddy put her "new to her" playset together!

Ready to tackle the slide! 

Started out great!

Got a little fast! It must not have scared her too badly because she wanted to go over and over and over and over again! 

Our sweet happy girl!