Tuesday, June 24, 2014

Turning 2!!!

How is it possible that we are the parents of 2 two year olds?! Wow! It seems like life must be in fast forward for Drake and Kennedy to already be two; however, at the same time it seems like a life time ago that we became parents. I'm not really sure how it is possible to feel both of those extremes at the same time, but I know that we do. 

Our weekend was jam-packed with family, friends and fun...and we wouldn't have it any other way! We had just our immediate families for their party and still that's a big crew. Brian is one of 4 children and I am one of 3. My parents are both only children so my brother, sister and I grew up without any aunts, uncles or cousins. I love that Drake and Kennedy are surrounded by aunts, uncles and cousins that adore them! 

Our sweet niece, Hannah, has been able to stay with us for the week since it is her summer vacation. She is 10yrs old and has been such a huge help having around the house! We are all going to miss her when she goes back home...especially Kennedy. Oh, how Kennedy loves having Hannah here! We will just have to schedule her next visit soon! 

I took both Kennedy & Hannah to swim at one of my friend's houses today. We had a wonderful time...unfortunately, the storm kept us from enjoying the pool on this visit. We all still had a good time, and I loved catching up with my dear friends! 

Family photo

He's got his bow-tie on & he's ready to party!

Turning 2 calls for a tutu!

Love this boy!

Hannah & Kennedy before the party!

The cake!!! It traveled all the way from New Braunfels! Thank you, Kosmic Custom Cakes & Aunt Gigi!!!

Gran & Poppy with all of their grand-kids! What a crew!

Drake's checking everything out.

She is clearly obsessed with iPhones! 

She thought the cake & ice cream was pretty cool, too!

Drake & Kennedy got a red wagon!

Kennedy LOVES it!!!

Sharing with Jacob...we can't wait to take Drake for a ride, too. Soon...very, very soon!

Enjoying his new vibrating pillow :)

We took the girls for a birthday swim!

She wasn't sure about the water until Daddy got in with her :)

Family fun & the pool! :) Missing Drakey :(

Tuesday, June 17, 2014

Another Bump in the Road

Today was definitely not what we had planned. We thought Drake was suffering from allergies, but unfortunately it's a cold. A common cold is not a big deal for most people...not even a big deal for most children, but for Drake it's a HUGE deal. The first sign of trouble began with his elevated respirations, then his increased heart-rate, and finally his need for extra oxygen support. I contacted his pediatrician 1st thing this morning and she advised us to head to Dallas...deja vu...here we go again. I had a good cry as I packed our various bags in preparations for an unknown hospital stay. Packing was a fairly quick process because I literally have hospital bags prepped in our bathroom ready to grab and go from under the sink. We called his pulmonologist in route and he gave us some adjustments to make in the vent settings. These adjustments instantly brought his breaths per minute (bpm) down from 75 to 45. This helped ease my anxiety along our drive. My sweet mom and sister-in-law met us in the parking-lot at Med City to pick up Kennedy and our dog, Harlee. Brian met us at the ER as the medical team diligently worked through their parodical: an IV was placed, blood was drawn, swabs were taken, X-rays, cultures, ect...

A shot of steroids administered through his IV quickly took effect and he looked better within minutes! His chest X-ray looked pretty good...it actually looked better than his previous X-ray taken in March just before our move to (OCH) Our Children's House Baylor. Lisa and I were allowed to continue with our daily care and regular breathing treatments using our own equipment. Everyone was very nice and checked on us regularly. With the care we have in place for him at home, the ER doctor did not see any reason that he should have to stay the night! Not being admitted...this was a 1st that we could get used to for us! Drake will continue his steroids for the next 5 days and begin another breathing treatment/antibiotic called Tobi. He has been on this before at OCH and we are very familiar with administering it to him. And of course, we will be following up with our pulmonologist. 

It was heading out the hospital doors at 5pm that Lisa and I realized we had not eaten all day. I had to stop for gas and I loaded us up with some nice healthy convenience store snacks. I'm pretty sure that is an oxymoron. I'm not exactly sure how long they had been on the shelves at that Chevron station, but at that point they tasted pretty good to us! Lisa realized pretty quickly that I am not the best person to share Chex Mix with in the car...even while driving, I managed to pull out all of the brown crunchies and avoid the pretzels :) 

We were able to get his steroids from the pharmacy, but the Tobi has to be ordered because none of the pharmacies we contacted keep it on hand. Another problem...insurance doesn't want to cover the Tobi. This should be taken care of by tomorrow because both the pharmacy and I called the doctor and he is explaining exactly why Drake needs this medication. We are praying this will be sorted out and we will have his new meds tomorrow or by the latest on Thursday. We are staying the night in McKinney with Gran and Poppy...and daddy is here, too! We will be heading out in the morning after Drake's morning treatments and feed. Lisa and I will be taking turns tonight without our regular night nurse. 

On a brighter note, we had a fun Father's Day Weekend at home with Daddy and Papa. We FaceTimed Poppy while he opened his hand made card from Drake and Kennedy, which he loved! Daddy and Papa loved theirs, too! Aunt Gigi sent a blow-up pool for our backyard and Kennedy is a big fan! Drake even got to come out side and join us during one of his vent trials! We have been planning a family birthday party for this weekend and we are still hoping we are able to have everyone. These little babies turning 2 is definitely something worth celebrating! 

This little trooper never even cried at Med City. Not even getting his IV! 

Child Life brought in some musical toys during our stay. Drake seemed to enjoy them!

We replaced his mini button this week...it's new & improved...glows in the dark!!! We were pretty excited! 

Backyard pool fun!

Neighborhood beach club with mommy and friends!

Not quite sure who all of the other people were at the pool.

Snuggle time with daddy! 

A drumstick before bed...only because it's Father's Day and she is sharing with daddy.

Vent trial over the weekend! 

Vent trial...he was doing So, So good! He will work back up to where he was and surpass! That's just the kind of boy he is! 

Wednesday, June 11, 2014

A Good Report!

If practice makes perfect, then we are well on our way to seamless travels to and from Dallas. We are thankful that we didn't have any major hiccups this time, and managed only to leave the house without a large syringe for his bolus feed. Not to worry...they had extra ones at vent clinic, and our problem was solved! 

The doctor was pleased with Drake's progress over the past month! So...where do we go from here? That was my biggest question. BIG steps...vent trails!!! What does this mean? Drake will actually begin attempting short periods of time disconnected from the vent completely! We will still have supplemental oxygen connected to his trach as long as he needs the support, but he will get to be free from the tether of the vent (for short periods of time). I will be able to carry him from room to room, or outside, without needing assistance from anyone else! There was no hiding the beaming smile on my face as I listened to the doctor's instructions! We have a schedule for gradually increasing these trails (as long as he tolerates) over the next month until he reaches 2hrs twice each day completely off of the vent! We will begin tomorrow with two trials of 15min each. Drake as also been cleared to work with his speech therapist using flavored swabs, and we can begin giving him small amounts of brightly colored fluids. This will allow us to asses how he is tolerating swallowing and if he is aspirating. If, when we suction his trach, we see that we are getting the brightly colored liquid, that will tell us that he is aspirating (it is going into his lungs rather than his tummy). Once he is successful with this, he will be ready for a new swallow study. As you can see, we have many things to work on over the next month. 

Gran met us along our route and intercepted Kennedy. The two of them drove on to McKinney to have a fun lunch with Poppy. My dad sent me a text message while we were at vent clinic letting me know how much he enjoyed having lunch with his precious granddaughter :) I know she loved it, too! Gran met us again on our journey home so that we could retrieve Kennedy; however, I know Gran and Poppy would have been thrilled to keep for longer. 

Over this past weekend, Brian and I took Kennedy down to the water for a little bit on both Saturday and Sunday. On Saturday it was clear that she was not thrilled with our adventure. If at first you don't succeed, try, try again. So, we took her back down on Sunday, and she became a regular water baby! I think it helped that there were two other kids there on Sunday, but whatever the reason...we are just glad she enjoyed the lake! She has many more lake days to come in her future! 

I am well on my way to recovering from my snake bite. My foot is still extremely sore and my toe is still swollen, but I am getting better every day. I was told to expect 6 weeks before I am fully recovered. At least I'm almost 2 weeks into my recovery which means only 4 left to go. So far I have only been able to wear one pair of flip-flops without too much pain. I am ready to get my running shoes back on, but my foot isn't quite up to that just yet. 

I am thrilled with how well our day went, but vent clinic days are always long days for all of us. Drake and Kennedy are little troopers and it was obvious this evening just how tired they both were from today. They both crashed out, and I am ready to doze off, too. I'm looking forward to sharing all of our good news with Drake's therapist tomorrow...and getting started with his 1st vent trail! 

Sweet boy!

Hanging out at vent clinic with mommy! 

1st golf lesson with daddy! 

Stander time! Nice head control! #bedhead 

Sweet moments!!! Love these two! 

Dressing things up a bit :)

Our little lake diva!

Sassy face!

"I do" insisted on putting sunglasses on herself. 

She saw me cleaning and started using a dryer sheet to clean her house :)

I love hanging out with these two! 

Tuesday, June 3, 2014

A Bite & A Cut!

We would have much preferred an uneventful week, but things are always exciting around our house! On Thursday night after the kids were asleep, I went out to check on Brian in his workshop. This is something that I have done numerous times over the past 9years that we have lived here. Unfortunately, this time I was bitten by a copperhead snake! Luckily, it was dark and I was moving quickly so I never saw the snake. I thought I had been stung very badly when I made it into the workshop. Brian quickly got out the 1st aid kit and knew something was wrong when he spotted the blood. He headed out with a flashlight, found and killed the snake. When he came back into the workshop, he calmly said, "Don't freak out. You've been bitten by a copperhead, and everything is going to be ok." ...I kinda freaked out!!!!!!!!!!! He notified our night nurse and we headed to the ER! This is a drive we have made 2 times now...once on the night my water broke and the twins were born and now for my snake bite. I can't explain how extremely long that drive seems to take during a panic situation. We arrived at the TMF ER around 10pm and they administered pain medication and kept me for observation. They do not like to give anti-venom because it can be worse than the bite. Also, if you have been given the anti-venom and need it later in life for a rattle snake bite, it would no longer be effective. Let's hope and pray this is the one and only snake bite I will ever receive! I was extremely sick (constantly) vomiting for the 1st day. Daddy was amazing taking care of both Kennedy and me! This was one of those moments that we thank our lucky stars to have nursing care to help with Drake. Brian was pushed head first into all of the things that I do every day. He did amazing and he is now even more grateful...if that's possible, for my daily duties. 

It's hard not being there for my babies the way that I am used to being daily. Kennedy knows that mommy is hurt but she still wants me to pick her up and play with her. I want to do those things, too, and I am working on getting stronger every day. This has definitely made me slow down more than I would like, and I know my recovery time is going to take longer than I have been anticipating. On a brighter note, Brian and I went out to dinner on Saturday night (crutches and all) to celebrate our 12year wedding anniversary! Brian said we could wait until I was feeling better, but I knew that meant we would never go...so we went anyway. 

Drake has been doing outstanding with all of his therapies (PT, OT, ST)! He is scheduled for his next vent clinic (where changes will be made to his vent) on June 10th. We are also scheduled to be fitted for leg braces at Pediatric Orthotics Associates on June 18th. Brian left for Chicago with work on Monday and we are thankful that Gran is here helping out. I did something today that I have been putting off...I cut Drake's hair! Don't worry...he still has plenty of curly locks. I am no professional, but he seems happy with his new due! 

Enjoying his 1st hair cut!

Mom is not a professional :)

Trimming curls!

After pic...still has plenty of curls :)

Working hard!

Just playing in my stander :)

Tummy time!!! He is seriously getting SO strong!

Wild thing!


Sassy face!

Clearly Gran had high hopes of grand-kids back when Brian and I graduated from college. #vintage #swt

Playtime with daddy!

Mommy's snake bite!

Gran & Lisa doing trach care!