Tuesday, December 30, 2014

Celebrate!

What a Very Merry Christmas indeed to be all together with my entire family! Traveling is hard and exhausting; however, it was well worth the effort! I loved seeing the pure joy in my parents' eyes having all of us under the same roof! Our car was literally packed to the gills and Brian wasn't even in my car! I don't know where he would have fit...he and Harlee would have to have shared a seat! We are fortunate that Lisa's parents live in Dallas, too. She was able to travel with us and spend time helping us and catching up with her family. I took night nurse duty and planned to snuggle with Drake on the couch in between treatments, but Harlee beat me to that spot. I settled for catching a little sleep in a chair, and I loved watching Harlee sleep next to Drake all night long...both nights! 

The difference between Christmas with a one year old (last year) and a two year old (this year) is profound! The excitement has transferred from boxes, bags, and wrapping paper to the actual presents. The front runners as far as favorite toys seem to be her Doc McStuffin's medical kit and Vtech game pad. Drake received an Ocean Drum from a friend, and he loves it! He also likes his activity table, which he used while he was sitting with his therapist yesterday. Santa did good! 

Daddy left on Christmas Day for a hunting trip in Arkansas. We are eagerly awaiting his return tomorrow evening to celebrate New Year's with us. Kennedy has selected the book "Because Your Daddy Loves You" for a bedtime story the last 4 nights in a row. She also pretends to talk on her play phone with daddy and insists that bubba talk on the phone, too. I think it is safe to say that daddy is definitely loved and missed around here! 

Papa (Brian's dad) came to visit today and delivered more presents for the kiddos! He also brought some older costumes made by Brian's mom (Yea-Yea) for our nieces (Alyssa & Hannah) when they were little. We had fun playing dress-up this afternoon! Of course, our happy little ham makes everything fun! 

Drake is doing ok, but this messy wet weather has been hard on his lungs. I spoke with our pulmonologist over the weekend and we have increased the frequency of his breathing treatments to every 3hrs, which seems to be helping. Our IPV machine began not working properly on Christmas Day and we made do by using his nebulizer to administer his medications. Our machine has since been replaced, but we are still having malfunction issues; therefore, we are using his IPV machine for 30min each treatment and then using his nebulizer to finish administering his medications for another 30min. Our DME company has ordered new component parts for our IPV machine, and they believe this will correct the issues we are having. We are still looking for a night nurse 3 nights each week, but right now we are just thankful to have our regular night nurse back! She is with us 4 nights each week, but last week she was sick with bronchitis and was unable to work. I was beyond thankful to have her back on Friday night! My body still woke up at Drake's treatment times, but having her here provided my best nights sleep in a while! Having nurses I can trust makes all the difference in the world! 

My entire family! The Childress side :)

Proud grandparents! Looking forward to adding my brother and sister-in-laws little boy to this crew around Easter! 

Christmas cutie!

So many silly faces!



Opening presents! 

Little Santa!

My sweet boys snuggling!

They must have been very good this year b/c Santa was very generous! 

So much excitement! 

Showing daddy her new toys!

He is looking right at me while I'm opening his present!!!

Sweet boy!

She loves art supplies!

And she loves sliders! Thanks, Paul Grant!

Happy to be home!!!

Princess Kennedy!

Dress-up fun!!!



Tuesday, December 23, 2014

The "Non"Plan

We have learned to accept that planning is a moot point for our family because nothing ever seems to go according to our plan. Of course we have ideas in our head of what we hope will happen, but it remains an illusive dream. That way, if it happens...fantastic, and if it doesn't...we are ok with that, too. Christmas is almost here, and we have a hope of being with family to celebrate. However, so many different variables have to fall into place: Drake will have to be up to traveling and all family members will need to be healthy (on our end and extended family). We have had to supplement oxygen support for Drake over the past few days. He isn't showing any other signs of distress, but he is requiring oxygen. I think this fluctuating weather is playing a big part in his respiratory issues. 

We have been a little shorthanded for the past week. Our one and only night nurse (we still have a night nurse position available) is out sick with bronchitis. After learning about this, we received a call that our Fri, Sat, Sun day nurse would be out sick as well. Lisa filled in on Saturday and Sunday. She has been working 16hr days to help us out during this time of limited staff...because she is awesome! She's even doing his last evening breathing treatment, and then I take his middle of the night and early morning times. Luckily, Brian, Lisa and I all seem to function quite well on minimal sleep, but it is still challenging!

Twice Angels of Care has found us a substitute nurse for the night shift; however, I have found that I get more sleep/rest when I'm on the couch taking care of him myself. Having someone new in our home who doesn't know Drake gives me anxiety. I just can't sleep because I am too worried that they will do something wrong. I know I have to trust our nurses, but trust takes time to build. I know when our regular night nurse is healthy and back with us, I will have a wonderful nights sleep! 

We have been enjoying the Christmas season at our house...complete with reindeer cookies! We had fun baking and decorating together! Drake took part in the fun, too! Daddy helped him place his decorations on his very own cookie! He may not be able to enjoy his completed masterpiece, but we did let him try the frosting! Kennedy LOVES to help with everything; therefore, she was eager to join our kitchen project! 

Family Christmas photo by our house! (Thank you, Eleni!)

Having some fun with Daddy!

Love these two peanuts to pieces!!!

Sitting with minimal assistance...way to go!!!

Eating while we work!




Decorating!

Thanks for the help, daddy!

Drake & his cookie!

Kennedy & her cookie!

Not having a night nurse is manageable when we get to snuggle with this smiling face!!!

Loving her present from Harper!

Happy boy!!!

Immediately turned to daddy's voice when he came in from work!

Sweet dreams baby boy!


Tuesday, December 16, 2014

Santa Claus is Coming to Town...

Father Christmas actually did visit our house over the weekend! This was kind of a big deal for two special little kiddos who are quickly approaching their 3rd Christmas, and who had never met Jolly Old Saint Nick. Just the thought of the vast number of children who sit upon Santa's knee daily with sniffles, coughs, slobber and drool, is enough to make me turn the car around in the mall parking lot...that is assuming we ever actually made it to the parking lot; which we did not. When one of nurses suggested having her husband come to our house dressed as Santa, we were elated! We invited a couple of friends over to join in on the fun (Harper & Grace), and our dear friend (Eleni) captured precious pictures! 

At first, Kennedy was not so sure about the big guy in a red suite with a fluffy white beard, but she soon agreed when we told her Drake would sit with her. Soon she was joining Harper and Grace for pictures, too! We couldn't let Harlee (Mr. Photogenic) miss out on the action! Daddy gets an award for being able to coax the best smiles out of the girls! It was a great team effort, and a fun Saturday morning! 

Saturday night Brian and I attended a fun surprise birthday party for one of our best friends! Live music, good food and excellent company! The best part is that the party was in our neighborhood so that we were close by if the night nurse (for Drake) or babysitter (for Kennedy) were to need us for anything. Uncle Aaron drove in and attended the party with us, too. He and I did not stay out late because we had an early morning drive to Dallas for my very 1st FULL Marathon (26.2 miles)!!! 

My 4am alarm came a little sooner than expected; especially since we went to sleep at midnight. None the less, we got ready and headed to Dallas! We made it there and were situated in excellent time! We were even able to catch a quick nap in the car before it was time to line up in our corrals. My goal was just to finish and hopefully with a time under 5 hours...my time was 04:22:27!!! This time last year I was running my 1st Half Marathon and now I have completed a Full! Two years ago I never would have imagined this would be a goal of mine...much less an attainable one! Aaron and I were surrounded by family support along the way...Mimi, Poppy, Mere, Jacob and Elizabeth at mile 12 and 22...and Brian and Kennedy at mile 19 and 26.2!!! Drake's nurse made a poster with Drake and Kennedy for me that Kennedy held along the way! We were treated to a family lunch with everyone including Mike and Jamie after the race! It was a pretty amazing day!

Meeting Santa!


Kennedy & Harper!

Grace & Kennedy!

Harlee's turn!

I just love these two shots!!!


Sweet Girls! 

Opening presents! 


Delivering bubba his book that she opened for him!

Surprise!!! Happy Birthday, Chris!

Photo booth fun at the party!


Mile 19!

Almost there!

We did it!!!


The ride home! :)


The best part of coming home!!!! :)