Tuesday, July 21, 2015

A Blog that I started and never finished or published from June of 2014...


 

Pirates, Pacifier and Pre-school
Just when we thought things were going to begin to slow down….. they didn’t. Vaughn recently saw the eye doctor and since he has been pretty good at wearing his glasses, she told us to start patching his right eye (the good one) to teach his brain to use the left eye. Imagine how confusing it would be to have a stigmatism in only one eye. Then we are going to put a patch over the eye that one would use to see and put his glasses on top of all that. He is such a good sport. We patched for the first time yesterday while watching TV and it went ok right until I had to take it off.

We saw Dr. Mary last week (our Pediatrician) as Vaughn was struggling again to eat and his balance and equilibrium seem to be worse lately. We made an appointment to see her after our screening with Child Find for Pre-school. Yes, I said Pre-school, can you believe it? We can’t….while we were there the Audiologist tried to do a basic hearing test on Vaughn and wasn’t able to do so because she discovered some fluid in his left ear. The boys haven’t been sick for months so I was concerned but she said it wasn’t an infection so he should be fine. Later in the screening, Vaughn tripped over nothing in particular and bumped his head pretty bad, a great example of our concerns. When I am telling our OT the details of the event she mentioned that having chronic fluid in your ear can throw off your balance. Jerad and I were already wondering about his hearing because of the huge delay in his speech so I didn’t need to hear anymore, we were going to get a script for a hearing test. We are scheduled to see an ENT doctor later this month to see what can be done about the fluid and have his hearing checked. The ears, nose and throat specialty is a new department at Children’s for us. We advanced Vaughn’s dose of daily prevacid and are praying this will help his appetite.

Asher is starting to advance into a typical “full term” toddler as he spends most of his days in time out or being told no. He is exploring his independence and will and has an amazing memory. I am grateful for his progress but find it challenging most of the time as Vaughn isn’t at the same cognitive level as his identical twin brother.

Vaughn and Asher turn 3 in October and will be heading off to pre-school to continue with their therapies.  Three just seems so young to go to school but I am sure it is just my heart strings being pulled as I try to imagine them being away from me a couple days a week. With that said, it was time to wean away from the beloved pacifier. I say beloved because not only do the twins love it, so do I. There was no way I was going to send them to pre-school still using a pasi, so we have started the process. They only have them in bed or the car. They are adapting better than I thought! One of the boy’s favorite songs right now is Head, Shoulders, Knees and Toes and it really does apply to Vaughn right now. “Eyes and Ears and Mouth and Nose” well so far all is well with his nose!

Things to Remember....

This past year and a half has been unlike any time of my life.... we have struggled with deep sadness and exceeded new milestones we just prayed and hoped to achieve. Our family moved into a new house, neighborhood and town. Jerad took a leap of faith and started a new career. We have found a new church home and have begun to plant some roots here in this quaint little town called Johnstown. 

I had started a couple blogs and never finished them.... one would think that with the boys in their first year of pre-school I would have so much time on my hands and yet, the time just shifted. The time looks different, instead of grocery shopping after they lay their heads down at night, I go while they are in school so I have more time with Jerad. And if Jerad is home, it is hard for me to do my own thing (well unless a new season of Glee is just released). I started this blog as a way to communicate with our friends and family all the ups and downs of the boys preemie journey and I believe as their medical/therapy needs decreased, my time of writing did too. What a blessing to say this! Vaughn and Asher will be 4 in October and as they are growing up, I want to remember each stage and cherish the memories we are making....I want to leave a legacy for them to remember God's goodness in all things, at all times.

Vaughn is courageous! This mighty man of mine has no fear and an adventurous spirit! He is independent and strong willed and has his Mamma wrapped around his finger. Vaughn still has a little torticollis in his neck and though we are not currently working on it, I think as he gets older and can do the exercise's on his own and understands the benefits of them, we will be able to work it out. We are very slowly trying to wean him off his medication for acid reflux and his appetite has increased tremendously since going back to chiropractic care. Vaughn will always wear glasses or contacts as he gets older for his left eye as he has a stigmatism but if that is the only issue that he has from being born at 29 weeks and weighing 1 pound then I consider that a miracle. We are in our last round of dilating his right eye to help his brain focus on using his left eye and will meet with the ophthalmologist in a couple of months to decide the next coarse of action (Amblyopia in his left eye which is a decrease in vision from lack of stimulation and Exotropia which means his eye drifts out). He hasn't grown out of his sensory issues yet but there is still time and his school and teachers do an amazing job of just pushing him enough to try new textures and experiences. Vaughn loves Thomas the Train and humus. He will try and eat almost anything and this has been so rewarding as we have worked really hard to get him to eat!

Asher has lived up to his name to the fullest, he is happy and daily we are blessed by his compassionate character. He is talking so much and I am enjoying our little conversations. Asher has graduated from needing occupational services (fine motor skills) and is just beginning to experiment with walking up and down the stairs with out any assistance. Asher is really into music and Blue's Clue's. Asher isn't as open to eating new foods but we are working on having a larger variety of choices for this little tank. He is a good eater though and is on the growth chart for his age (not the corrected age) at the doctors office.

We are so proud of the boys growth and development and can't wait to see how much they will learn in their next full year of preschool. Both boys love all things cars, trucks, and tractors! We don't sit through a movie so we haven't experienced the movie theatre just yet but I see that happening soon. They also like dinosaurs, books, and swimming. Grandpa and Grandma have a "big pool" at their house and have turned the twins into fish! We spend many summer days visiting the zoo and had the joy of visiting the museum recently and that was a blast!

I am (trying) to savor these moments while they are young and say and do the cutest things! This new season has been easier in many ways and challenging me like I never thought possible. We are reading books about potty training and are starting to get the momentum going of how great it is to be big boys. Asher will be moving into a big boy bed before preschool starts in the fall and we anticipate that Vaughn will follow shortly after. Life is full of unanswered questions but for right now, Jerad and I are asking ourselves "What is it time for?"

Monday, July 6, 2015

Lily

A year ago today...an angel was born on Earth for a short time and she has forever changed me.

My Letter to Lily

Lily,

I wish we were celebrating your first birthday this weekend, with you....so instead we will celebrate your birthday with Heaven. I am thankful for your life and your parents. I miss you. I think of you often and wonder how the events and days would be different with your sweet presence with us, instead of hand in hand with Jesus. You are brave young one and beautiful! I want you to know how much you are missed and how your life has pushed me to be a better version of myself.

Because of you....I try to complain less and be grateful more often. I am working to cherish the small things and let go of what I can't control. We remember you each month in a different or unique way and it has been a privilege to bless someone in your honor.

I am so proud of your parents Lily. They have walked an impossible journey and have done so well in honoring you. They are strong and courageous. They are brave and willing to endure....selfless.

When I say that you will never be forgotten, I mean it. I hear a song, see a picture or read a children's book and think of you and your gentle soul. Your name will forever hold a place in my heart.

Happy 1st Birthday!

I love you Lily, xoxo

Aunt Kris