Wednesday, November 25, 2015

Communication is Key

Communication is key to any relationship. Kennedy can speak clearly to convey her wants/needs these days, and Hayes is just a baby but we are able to understand what each of his cries means. Despite not being able to make noise, Drake has always been able to communicate his likes and dislikes with us. Lately he has successfully learned to push a button for movement in his stander, and we are planning to build upon that skill. We all, his therapist and us, firmly believe that he is understanding quite a bit of what is going on around him. He is beginning to be able to have more control over his body and movements. It is up to us to be able to understand what each of his movements means. As with any new foreign language, you must decipher what is trying to be said. Today, I was simply playing a game of sorts with Drake when I realized that he was indeed communicating with me. I was counting to 3 each time before I moved his chair and I would ask him each time if he was ready. He very deliberately brought his right hand to his mouth each time I asked, "Are you ready?" It did not matter how much time I let pass between times, he would not move his hand to his mouth until I asked the question. This may seem small or even trivial to some, but to us this was and is a huge step forward with his ability to communicate with us! It also shows how he is able to understand what was/is going on around him! I can't wait to play with him again tomorrow!

Opening up more ways to communicate will not only enhance his quality of time, but it will allow move interaction and "play" between Drake and his siblings! I firmly believe we have opened a gateway into further and better communication for our family! Only God knows where this will take us and how long the process will take; however, this is an exciting discovery for our family! Hopefully this is just the tip of the iceberg as far as communication goes for our little man! 

Moving around in his tomato chair!

Independence is fun for all 3 year olds!

My doctor cleared me to hold my big babies again! 

Gait trainer fun!

Exploring his "little room"


Love! Love! Love!

"Mom, are you sure this is safe?!"

Oh, these two!!!

Tuesday, November 17, 2015

Gaining Mobility

Every time I witness Drake discover, learn and successfully accomplish a task, it immediately brings a smile to my face and tears to my eyes. I'm with him every day so I'm not sure how my sweet little curly haired angel is still able to surprise me, but he does. His vision teacher and OT through the school district were here today, and they used a variety of parts including empty boxes and rolled towels to "jerry-rig" a tomato chair on a wheel base for Drake. The goal was to teach Drake a new way for him to move independently. Amazingly after a little coaching and assistance, he began following the instructions and moving through the room on his own! 

Kennedy spent Thursday - Sunday at Mimi & Poppy's house. On Thursday, Aunt Meredith & Uncle Aaron took her to see ICE at the Gaylord in Grapevine with her cousin, Jacob. She had a fantastic time and the first thing she told us on FaceTime was about the ice slide. Brian and I are looking forward to going with them next year! It sounds like such a fun experience. 

On Saturday, in addition to Kennedy being out of town, we did not have a day nurse. I have to say that our house was definitely quieter; although, we sure missed our little fire cracker! All was right in the world on Sunday night when her little laughter filled the house again. 

We continue to take things one day at a time, and I try not to get ahead of myself envisioning the future. There is no way of knowing what that will look like; however seeing Drake's progress today provided so much hope into what his future holds. 

Learning to move in the tomato chair!

Kennedy loves to dive in and help with his therapy! His therapist are wonderful about including her!

Just a little crazy bed-head!

Drake's OT helped us set up this "little room" to provide Drake time to explore and discover completely on his own. The hardest thing is not getting involved and cheering him on.

Fun on ICE!

Christmas Around the World!


Kennedy & Jacob

Helping Mimi & Poppy and talking on the phone with mommy! She's a multitasker!

Sweet baby boy!

Hanging around on daddy!

Watching tv with two of my boys!

Out like a light!

Running errands with mommy!

Holding her baby brother! She always asks to hold him, and then she is ready to give him back after about 30 seconds 

Tuesday, November 10, 2015


Perspective is an interesting thing. It can change quickly like an epiphany in the blink of an eye, or it can evolve over time slowly changing the way you view the world around you. I would have to say that we have experienced a little bit of both over the past 3 years. When Drake and Kennedy were born at 25wks, our perspective took a drastic change from what we had envisioned of parenthood. As we have settled into our new normal (life with in home nursing care, trach/vent, ect...), we have slowly become accustomed to what our daily life looks like. 

Today I experienced yet another drastic shift in my point of view. Over my 10 years in education, I have been a part of countless ARD's (Admission, Review & Dismissal). These are meetings required through Special Education for the state of Texas. The point of these meetings are for a team of educators along with the parents to determine an IEP (Individualized Education Plan) that best meets the students needs. Today I was escorted down the colorful hallways of our local elementary school filled with students and classes walking to and from daily activities. The hushed chatter as students snuck in quiet conversations with their friends conjured up memories from my classroom days. As familiar as I am with this environment, I walked through the doorway into the conference room as a parent this time. And as a parent, I was filled with feelings of anxiety and nervousness. The room was filled, and I mean FILLED, with educators...13 to be exact...14, if you include me. I know how I felt walking in with my years of experience and knowledge of the process. My heart immediately went out to all of the parents who have entered that room before me and to those who will come after me. It's overwhelming. If you are entering an ARD, for whatever the reason, you already know that your child doesn't meet the cookie cutter version of "normal." Whether it is big decisions that need to be made or small ones, anything discussed and decided upon isn't easy to hear as a parent. Just hearing the report of Drake's medical history was enough to bring back a flood of emotions (don't worry...I didn't cry). I'm used to being the one who has the regurgitate the facts at every appointment, with every new therapist, ect...I've learned to disconnect with my replay of events and robotically state the timeline and facts. Having someone else recite it to the group, caught me (and my emotions) off guard. 

We came to an agreement of what we believe will be the best plan for Drake. He will continue with his Vision Therapy, and begin receiving homebound services with consults from OT, PT and ST. Even though this sounds like a lot, these services from the school district will consist of one hour per week. He can receive more, but we would like to start with a smaller amount to see how he tolerates everything. We will be adding this to his weekly OT, PT and ST that he receives twice a week for each discipline  through Therapy 2000. 

Kennedy made her dancing debut this weekend at Mistletoe and Magic! Our little shining star was not scared on the stage one bit! She even tried to go back out on stage and perform again with the next group. Luckily, one of her teachers spotted her and escorted her off of the stage. Gotta love her fearless spirit! 

I have no doubt that our life perspectives will continue to evolve. Our plan is to take things one day at a time, and do our best to meet the needs of all 3 of our kiddos. Mistakes are bound to be made, but we will take those as lessons learned and move forward. 

This little guy brings so much joy!

It is impossible not to smile with this boy!

Hayes turned 1 month old!

Waiting to perform! 

Unfortunately it was very crowded and she was on the opposite side of the stage. We were not able to get very good pictures or any video :(

Bedtime snuggles!

She loves being a big sister! 

Daddy has his little hunter in training! I told Drake that when Daddy starts taking Kennedy & Hayes hunting we will have some nice quiet mornings :)

Going with mommy to check the mail! Looks like the dead of winter, but it's just the bright sun.

Love these snuggles!

There is absolutely nothing sweeter!

Mimi snuggling with her boys! 

Wednesday, November 4, 2015

A Happy Halloween

SLast week flew by fast with daddy out of town. Mimi came for part of the time and Yea-Yea was here for the rest. I think it is safe to say that our kiddos hit the jackpot when it comes to grandparents! Aunt Teresa came with Yea-Yea, too, so we were able to have lots of family fun! We are glad to hear that daddy had a fun and successful hunting trip in North Dakota, but we are over the moon to have him back home! Kennedy prefers to be carried to bed upside down, and that is a travel arrangement that daddy does best! Of course daddy will still be hunting every weekend, but at least he will be close to home and just put on our lake.

Yea-Yea brought lots of fun activities for us to enjoy during her stay! We made a Haunted House silhouette complete with footprint ghosts, ghost sugar cookies, painted pumpkins, and made Jack-o-Lantern pizzas! Kennedy had such a wonderful time participating in all of these fun activities! On Halloween night, Drake was home with his nurse (Lindsey) and Hayes stayed home with Yea-Yea allowing me to experience Trick-or-Treating with Kennedy! We went around our neighborhood with our little friends, Harper & Cooper. I think all of the adults had as much fun going around as the kiddos did! Kennedy did a great job of saying, "Trick-or-Treat" at every house and "Thank You" after receiving candy. She even followed it up with a "Happy Halloween" when we were leaving.

It's hard to believe that 4 weeks have already passed since Hayes joined our family! He will officially be one month old on Thursday, and he is already growing up too fast! By next Halloween, he will be a year old and ready to tag along on our Trick-or-Treating adventures! Next Halloween is going to be lots of fun with all three of our little munchkins! 

Our little minion!

Our little pirate!

Fun little Halloween crew!

Telling Drake she was heading to Trick-or-Treat!

Is it time to go Trick-or-Treating yet?

So much fun!

Two little cutie pies!

Halloween hugs!

Sibling fun!

Haunted House!

Look at this little guys head control! Please slow down with your growing up.

Happy little Jack-o-lantern!

Singing fun with Harper!

Building with Yea-Yea!

Pumpkin painting!

Her masterpiece 

Time for a bath!

Cookie time!


And this is what bedtime looks like after sugar :)

Sweet dreams!

Our future little duck hunter