Tuesday, September 30, 2014

Adventures in Dallas

BIG Day in BIG D! Our morning began bright and early at 5am. Getting everything ready, feeds given, car packed, and everyone ready takes a little time. Even with our itemized list, we are still bound to forget something...this time it was the wheelchair/stroller canopy. No worries...we improvised with an umbrella. Problem solved!

Not only did our day begin early, but so did the day for Gran aka (Mimi) and Aunt Mere. They met us at BOCH (Baylor Our Children’s House) down in Dallas to pick up Kennedy and Harper at 9am. Their car full headed to The Dallas Arboretum while we headed into Vent Clinic. Drake did awesome and received a really outstanding report! His chest x-ray looked really clear and his blood work was perfect! Our plan is to continue weaning his vent gradually over the next 6 weeks as long as he tolerates everything. He is a strong boy and I have high hopes for him! Next up...nutrition...well, our “husky” little boy is going on a bit of a diet. His daily calories are being reduced because he has gained too much weight. He was supposed to maintain from our last vent clinic and instead he gained 3 pounds! Also, we are going to start trying to wean his diuretics. YIKES! He will still have them as needed when he gets under the weather and starts to retain fluids. I pray that he is able to do well and keep his urine output up without the daily diuretics.   

After vent clinic we did a breathing treatment and a feed, then headed out to meet up with the girls at the Arboretum. It was SO much fun!!! We obviously don’t get out very much, especially all of us, and this was quite a treat! The kids had such a wonderful time and even got their faces painted. Kennedy picked out what she wanted on her face and sat calm and still for the process. I was very impressed. Drake did great, too! Although, he is always a good sport so that wasn’t a surprise.

We hit the road this morning at 7am and arrived home at 6pm. That’s a long day for anyone...especially little kids. They were all 3 super troopers! I love their flexibility and willingness to roll with the punches! Kennedy, Harper and I headed back out with Harper’s mom and a dear friend to visit some of our other friends who just became first time parents. Today was certainly an exciting little day trip, and I’m already thinking about ideas for our next adventure!

Working hard at home!
               Messy Girl!
 Drake seeing his face painted!
          Hanging out at Vent Clinic
 Kennedy & Harper with their faces painted
 Monday night I ran into these loves on my run!
         Waiting patiently at vent clinic!

   Two little darlings looking precious with their face paint!
                                                                       Our Dallas Adventure Crew today: Jacob, Harper, Drake, Elizabeth & Kennedy!
           Kennedy and Cousin Jacob!
 Arriving at the Arboretum with our umbrella canopy!
Our sweet friend let Harlee out while we were gone and he even got to take a golf cart ride around the neighborhood! Our friends are so good to us!

Tuesday, September 23, 2014

Laughter, Tears & a New Ride!

Lots and lots of laughter...that’s what our weekend was filled with to the brim...and overflowing a little bit! Brian’s sister and brother came for the weekend and we had a fun visit with Aunt Gigi and Uncle Matt! I wish they both lived closer so that we could visit more often. On Saturday night I filled in as our night nurse since our regular nurse was out for a family function. It was obvious that Drake enjoyed staying up with the adults after Kennedy went to bed. As “mommy-nurse,” I have to say that Drake was an excellent patient! I put him to bed at midnight and he slept through until 8:30 the next morning. This is HUGE for Drake!!! He does not sleep very much, so the fact that he slept for 8.5 straight hours was amazing! He slept through his 3am breathing treatments, 7am breathing treatments, meds, and 8am feeding...plus a diaper change! And...yes, I did brag about this to his regular night nurses :)

Our little Diva...aka Kennedy, has been the easiest child ever to put to bed or down for a nap. Drake’s therapists were amazed when they saw her bring her blankie and ask to go night-night for her daily nap. I guess all good things must come to an end, or we just have a strong willed 2 year old toddler on our hands. She has decided that she no longer wants to go to bed at bedtime or nap time for that matter. Does she cry? Oh, yes she cries. It is exhausting! Our night routine has not changed. She knows exactly what to expect: breathing treatment, brushing teeth, reading a story, saying our prayers, and tucking her into bed. After a full week of protesting at bedtime, last night went really smoothly...tonight, not so much. At least she only cried for 5min tonight. Hopefully, after another week or two we will have our easy bedtime baby back.

Drake’s physical therapist went to a training on Friday. While she was there, she messaged me about some measurements for Drake: his height and head circumference. At first, I didn’t know what she needed these for during her training, but I gladly retrieved a tape measure and began collecting his information. Great News...She was able to get him a tricycle!!! His VERY own tricycle! It is a tricycle adapted for children with special needs! Apparently, companies donate money for the construction of the bikes, and then they are given to children with special needs. After a kiddo has outgrown their tricycle, it is then given to another child. That is how Drake received his! Unlike most new things (which Drake hates new things) he was completely content while his therapist made adjustments to his new ride. We even took it outside for a quick spin! It’s still a little big for him, just as Kennedy’s is for her, but they will both be able to reach the peddles in no time! Oh, the fun we are going to have with this new toy!  

Drake laughing with Aunt Gigi!

Going for a walk!

Silly daddy!

Come on, papa!

Playtime with papa!

Such a sad face! Whenever she gets into trouble, she stands still like a statue and makes such a sad face. Good news...she goes back to her smiling self quickly!

Interlocking his fingers on his own!!! Great for midline! 

Nice wheels, buddy! 

Tuesday, September 16, 2014

Celebrating Daddy!

Getting to have Daddy home on a Tuesday is a treat in and of itself, but today was even more special because we were able to celebrate his birthday with him on his actual birthday! We had fun crafting presents and anticipating his reaction when he arrived home! Considering it was a birthday on a budget, I think we did pretty darn good...minus a steak dinner (which apparently he was hoping for)! Oh well, maybe next year.

Drake is doing wonderful! We have begun increasing his time with his PMV (Passy Muir Valve) and he has been able to make a few sounds! Mostly sad little whimpers, but I’m excited to hear sounds from our little man! The dehumidifier that Brian bought for our livingroom seems to really be helping Drake during our drastic changes in humidity. He is tolerating his AFO (leg braces) more and more, and he is even able to wear them while he is in his stander. He also has really been enjoying his new tummy time swing!

Drake has had some Mickey button issues for about a week and a half. The site became irritated and painful. After consulting with his pediatrician, she referred us back to his original pediatric surgeon. We started him on some medications (both internal and topical) and attempted to change out his button. I was scared when his button showed resistance and did not want to come out. His surgeon suggested to give the mediations a few more days and then try once more with a little more force. If we ran into problems again, we would need to come in and have the surgeon perform the switch. Thankfully, it did not come to that! We were able to successfully change his button out today and he seems better already!

Kennedy is an awesome little helper! She is ready and eager to get anything that we need for Drake or baby Harper. She is also willing to share her food, snacks or drinks. I love that she wants to share...the only problem is that Drake and Harper are not ready for that yet. After asking to share with Bubba and baby, she settles for sharing with Mama, Dada, or one of Drake’s nurses. Today we practiced with her during the day so that she would be ready to greet daddy with a “Happy Birthday, Daddy” when he arrived home. Our project was a success! They were both grinning from ear to ear!

Enjoying his new swing!

He pulled his shirt up and started sucking on it while working with his Speech Therapist. This was definitely a first! :)

Freebirds lunch with mommy & daddy!

Family dinner! One of our nurses was out sick and we only had partial coverage. We love our nurses, but having a family dinner with just the 4 of us was a nice treat! 

iPad story time! 

Just hanging out together on the floor. Kennedy lasted for about 30 seconds :)

A picture from the birthday party in McKinney a few weeks ago with my dear friend Lindsey and her precious little girl Lillie! 

Tuesday, September 9, 2014

Inspiring Us!

I saw something recently that really hit home with both Brian and me.

“It takes a special kind of person to care for a child with special needs.”

A child with special needs will inspire you to be a special kind of person.

This is true! It is so very VERY true! Many people have told us that we are special to be able to care for Drake. The truth is...we aren’t any different from anyone else. We have indeed changed, and that is because we have been inspired by both of our children to be the parents that they need us to be for them.

From their very first day, our eyes were opened to a world full of things that we took for granted...healthy lungs, immune systems, full development, ect…Yes, we had heard of a NICU and even thought we knew what it was, but we didn’t have a clue! We thought it was a place with special doctors and nurses who cared for babies born a “little” early for a few days or weeks until they were ready to go home. The thought of babies being born months before their due date was foreign to us. Needless to say...June 23, 2012 was a shock to our reality!

142 days...that is how long we lived in the NICU with our Micro Preemies. However, preemie life doesn’t end when you walk out of the hospital doors. Here we are, two years later, still living the preemie life. It’s a good life! It’s just not the life we anticipated. Hearing about the new respiratory virus on the news (Enterovirus 68) is scary for any parents. If you are the parent of a preemie or micro-preemie, multiply that fear times 1,000. If you are the parent of a child on a trach/vent, multiply that fear times 1,000,000. So here we are...caught in a Catch 22. We have doctors appointments and vent clinics in both Tyler and Dallas over the next few months. In order to do the follow-up appointments to ensure Drake’s health, we have to go out into hospitals and clinics which will expose us to germs and jeopardize his health. We will do the very best we can to protect him for any and all germs, and we will continue our daily prayers for healthy lungs.

Drake’s new swing that we ordered over the summer finally arrived today!!! At first he wasn’t quite sure about it, but then he started getting the hang of things. It is a tummy time swing to help with development. He also tolerated wearing his AFO (leg braces) in his stander for the very first time! This is a HUGE step forward!!! I gave Drake a much needed hair trim today and then I nearly cried...I trimmed too much! Yes, I know it will grow back, but it was still hard on this mama. My little sidekick, Kennedy, is always ready to help out or ride along. She is also a wonderful encourager for her brother. “Yea, Bubba!!!” is heard in our house daily.

Our latest trip to Dallas was our meeting with Drake’s neurologist. He upped Drake’s seizure medication dosage, and thankfully that really seems to be helping decrease the amount and intensity of his seizures. My sister and a dear friend watched Kennedy and Harper while we were gone to the appointment. Thank goodness for family and friends!  

My whole heart!!!

Waiting at the doctor's office

Snuggles with Papa!

Helping Papa work.

Lunch with Papa!


Shopping with mommy for groceries.

Hanging out while getting a breathing treatment.

She loves to copy us...she put her monkey in Drake's stander and brought him toys. Also, she calls him "money" instead of monkey. 

His new "Wingbo" tummy time swing!

Doing awesome...also, I will admit that he needed a hair trim.

His new...and much shorter...hair! I keep reminding myself...it will grow back, it will grow back. 

Tuesday, September 2, 2014

Summer’s Coming to a Close

I’m happy to report that all of our nurses are healthy and back in action! It’s a good test for our skills every now and then to be short-handed, but we are quite thankful to have everyone back. This end of summer/beginning of fall weather is messing with little Drake. He even needed some oxygen support on Friday...thankfully, we were able to wean him back off by the end of the day. Any time the humidity goes up, so does the amount of times we have to suction him. Brian went out and purchased a dehumidifier for our living-room, and it seems to be helping. We are starting back at square-one with his trials off of the vent using his HME. We are beginning with 30 minutes as tolerated. While we would love to start back up where were left off (3 hrs twice each day), it’s going to take some time...but we’ll get there again.

Tolerating his AFO’s (leg braces) is another challenge on our plate. He doesn’t love them! However, we don’t need him to love them, we just need him to tolerate them. He seems to be happier wearing his braces if he is not wearing shoes. Once we add the shoes, he gets upset. I think he needs bigger shoes for a more comfortable fit. Tomorrow we will travel to Dallas for an appointment with his neurologist. Our plan is to stop by the Stride-Rite outlet to get some larger/wider shoes.

I’m thankful that we are meeting with his neurologist tomorrow! This will be our first visit since he got his trach. His seizures have become more frequent, longer lasting and more pronounced. The worst part is that his seizures are beginning to scare him. Perhaps his medications need some adjustments or his formula feeds need to be altered. Whatever the problem...putting our daily observations together with his knowledge should give us some direction.

I enjoyed a wonderful 1/2 day spa with one of my dear friends on Saturday! It was a much needed day of relaxation that my father-in-law gave me for a Christmas present! She and I have been telling our husbands that this should probably be an annual thing! 

Little Miss Personality soaked up the last days of summer with Mommy & Daddy this weekend! Seeing how excited and comfortable she is on a boat now (as long as mommy & daddy are close) is wonderful! She has come so far since the first days of summer when she was weary of the water. She is definitely a water baby now! I look forward to what next summer will look like...hopefully, Drake will be able to join in on the fun!

A little tummy time encouragement! 



Her 1st Delta Waterfowl Banquet! (The 1st of many)

She even got selected to draw the name of a winning prize! 

Silly boy!

Our little boating baby!

The tubing 2's!!! Nice and slow. 

Peace out!

Stealing some kisses and making him laugh! 

Out like a light


She's a natural!

She looks so grown up with a backpack!

Just chillin' with baby Harper!