Quality Time

Over Thanksgiving our home was filled with so much love! Almost every member of Brian's family was here to celebrate all of which we have to be thankful! For some, it was their 1st time to meet our newest addition, Hayes, and for others they were excited to see how much he has grown! While we wish we were able to spend more time together on a regular basis, jobs, distance, and our inability to travel make that difficult. Thank goodness for technology which allows us to stay plugged into each other's daily lives. 

Drake is continuing to make great strides and his therapist are currently in the midst of doing his revaluations. This is an exciting time of setting new goals because of the progress he has made! I'm very excited that we are going to work with him on his ability to interact with his siblings! Over the weekend Kennedy and nurse Lindsey played Ring-Around-The-Rosey with Drake while he was in his stander. Of course he wasn't able to do the "fall down" part, but they all seemed to enjoy the interaction. I'm looking forward to incorporating more of this modified play into our daily life! 

Sweet Hayes is growing and changing every day! It's hard to believe 8 weeks have already passed since he was born! We look forward to finding out his new weight and length at his 2 month visit! Maybe he will even flash one of his sweet smiles for his doctor! 

Brian works very hard to support our family, and we are thankful for his job, dedication and hard work...and let's not forget he is an avid hunter. Between the demands of work and hunting season, we miss having our daddy around. However, my heart swells with the tea party picnic that took place in Kennedy's room after dinner tonight! This was a very special picnic complete with REAL pie!!! Kennedy's eyes were beaming with so much excitement that I thought her eyes might actually pop right out of her head! This was followed up with a Christmas movie before bed that they picked out together! I'm thankful that Netflix has so many movie choices available at our finger tips! 

While we may not get to spend as much time with daddy as we would like, I'm pretty sure quality makes up for quantity any day of the week. At least it does in my book! 

Thanksgiving meal at Papa's house!

Precious Thanksgiving outfit from Gigi! 

Happy baby!

Yea-Yea with almost all of her grandbabies! Missing Alyssa in Oregon 

Brian, Aunt Teresa, Uncle Matt

Kennedy, Hannah, Yea-Yea, Hayes, Drake, Gigi

Catching some snuggle time with my boy!

Kennedy catches some snuggles, too!

Black Friday shopping & shenanigans with Papa & Daddy! Gander Mountain was their one-stop-shopping adventure! 

My baby girl in a ghillie suit

The alligator puppet came home with her.

Sweet baby!

Love his laugh!!!

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"

Focused!

Love! Love! Love!

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

Oh, these two!!!

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!

Snow!

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 

Perspective

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!