Reaching

Teryn has been working very hard at reaching out for things lately. It took a long time for her to coordinate her hands to make contact with things. She is getting so good now and is so close to being able to grab.
We had a session with her interventionist this afternoon and lately she is saying constantly how amazed she is with how well Teryn is progressing. She is progressing much better than originally anticipated. We are able to check off new skills at each session. I am so proud of my amazing little girl.

Here is a video of her reaching and playing with her Vtech ball.

Welcome to Holland

When I was pregnant with Teryn I read every one of the baby books I was "supposed" to. I followed my week by week pregnancy book and made sure everything I was experiencing was in line with what I read. Every check up and ultrasound showed a healthy baby that was progressing well. The only issue during my entire pregnancy was the extra amniotic fluid during my third trimester. So, as all other expecting mothers, I assumed that the baby inside of me was going to be the main character of the story I had played over and over in my mind. Less than an hour after my delivery I realized that was going to be very far from the story that would really play out over the next few months. I remember standing at the crib in the NICU and thinking, "Where is my do-over, this is not the way it was supposed to be. This is not what I prepared myself for."

Thankfully, with God's grace, life with Teryn has been FAR and BEYOND the happiness I ever expected. I would not change a thing because she has taught us how to truly love unconditionally, what is really important, and how to be grateful and happy in every little small thing. I feel like she has won valedictorian when she finally grabs a toy, follows the sound of my voice, or tries to communicate with sounds. So, can you imagine how ecstatic I will be when she really does make valedictorian!

I came across an essay that has been shared by many parents of special needs children. It has been around for a while, but I cannot imagine any words that more correctly sum up the feelings when you are the parent of a special needs child and finally realize how much luckier you are than everyone else.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability

-to try to help people who have not shared that unique

experience to understand it, to imagine how it would feel, It's like this.....

When you are going to have a baby, it's like planning a fabulous vacation trip

-to Italy.

You buy a bunch of guidebooks and make your wonderful plans.

The colliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It is all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever go away, because the loss of that dream is a significant loss.

But if you spend your life mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Pearl Kingsley

Becoming an active girl

Time for an overall update. Health-wise Teryn has been doing very well. Other than a respiratory infection at the beginning of December she has done well. Thankfully that did not require any hospitalization. We were able to treat it at home with antibiotics and breathing treatments.

We have not seen any full on breath holding spells lately. Two nights ago we came close. Teryn got very fussy and I could tell she was headed that way buck thankfully I was able to intervene before she completely passed out.

We have seen very few apnea spells lately as well. Her monitor alarmed today but it was a connection issue because I was sitting right next to her and could hear her breathing. Her reflux is getting much better. We are rarely using the suction machine now but still keep it very close since we have had emergencies where it has been necessary to use it. A couple weeks ago she spit up and almost aspirated. She was choking and almost passed out. I yelled for James to bring the suction into the bedroom and as soon as we finally turned it on I got a couple seconds usage before the battery died. It was a frightening experience. Teryn was turning blue and unable to catch her breath. Even though the suction machine quit on us the feel of the tip in the back of her throat made her gag enough to clear her airway and begin breathing. We had been having trouble with the suction machine. It would not hold a charge unless it was plugged in. The healthcare company was waiting to get more in. After this episode I called them back and we had a brand new one within a few days. They have been really wonderful to us.

Feeding therapy is still going very slow. We have seen some progress but it is still a challenge for her to try eating by mouth. She is having issues with the way it feels in her mouth. We have to give extremely small amounts and go very slow so she doesn't gag and vomit. In one session she will eat 1/4 to 1/2 teaspoon. Not much, but hey, we are working and it WILL happen.

Teryn is very busy and mobile now. She reaches out for things all the time and will occasionally be able to grab things. She is a roller and scooter. We have to keep our eyes on her all the time. She loves sitting up and even though she still needs assistance she is getting stronger at it everyday. When she is laying down you will see her straining to pull herself up. She wants to sit up on her own so badly. We are so proud of the progress she has made. She may not be doing what your children did at 11 months, but that doesn't make us any less proud of her. In fact, we are even more proud of each and everyone of her accmplishments because she has had to overcome so much more to make them.

Here are a few examples. The other day I saw her rolling on her blanket as I walked into the kitchen. I thought to myself, "I am going to need to move her back." A few seconds later when I walked out of the kitchen I saw her halfway across the floor and dragging her feeding pump with her. Whew, we have got to keep our eyes on this one.

Being a silly girl with her feet propped up.

Taking a nap with Xavier. So sweet.

Here are a couple of recent videos. The first is just to show how amazingly sweet our girl is. On the second video she had been reaching and grabbing for the toys on her seat. As soon as she noticed me with the camera she stopped.

Grandma and Gavin's Birthday Parties

We are entering into one of our family's busy birthday seasons. We bagan the year with Grandma's birthday, which is also mine and James' anniversary. For Grandma's birthday we met up at one of our favorite bbq places for a yummy dinner.

Gavin loved the fried corn.

Trista made her rounds taking silly pictures with everyone.

Grandaddy took over the task of making silly faces.

My "little" brother Lee and his beautiful children.

Grandma and Aunt Bobbie.

Teryn doesn't let anything interfere with her nap times. Trista wanted a picture with her anyway.

Gavin was very intrigued by all of the airplanes.

Grandma and Mommy.

Teryn finally woke up to join the party. What a beautiful girl!

Cute little pouty face. I have a feeling she will use this to her advantage in the future.

James made a silly suggestion that Trista should take ALL of the balloons from the hostess stand home. Well.....guess what she convinced the hostess to give her. Uncle Lee and Aunt Cheryl had a very fun time fitting all of those in their car.

A couple weeks later it was time for Gavin's first birthday.

It was a beautiful day outside for a bbq. We had lots of yummy food and had a great time visiting.

Gavin had a great time "eating' his cake.

Up next is Trista and then Teryn's birthday in February. We are very excited about planning Teryn's first birthday party.

Christmas Day

No chimney here so our stockings hung on the wardrobe. Teryn's was too heavy for her stocking holder so we had to hang it lower.

Mommy opening her stocking.

Daddy opening his stocking.

Xavier always has to check things out.

Teryn's Christmas loot. So far her favorite seems to be to Vtech ball that rolls, lights up, and sings.

Checking out one of her new toys.

Such a precious sweet girl. She makes my heart smile all day long.

Xavier got treats in his stocking also.

Being a silly goose.

After we opened our presents we got ready to head to Grandma and Grandaddy's for our traditional Christmas morning breakfast complete with our favorite breakfast beverage...orange jubilee.

It was so wonderful to spend time with our family.

Uncle Jim and cousin Vesa.

Me with my "little" brother, Uncle Lee.

Teryn loved watching one of her new toys from Grandma and Grandaddy.

Uncle Lee and Gavin playing with the train set.

Cousin Tyler chillin in the "man room" wathing a movie.

Teryn was worn out from all of the excitement. She took a nice nap in front of the fireplace.

Arush, Sydney, Vesa, and Aunt Ilire.

Nanny drove down to visit for the holidays.

Gavin and Aunt Cheryl.

Trista taught Val how to play her new DS.

Mommy and Grandma.

Grandaddy and Grandma.

I realized too late that I had forgotten to get pictures of Uncle Chris, Aunt Camilla, Steve, Drew, and David.

We had such a wonderful day. After everyone's bellies were full we watched "Despicable Me." Teryn decided that would be a good time for another nap. After the movie we headed home for bed. It was definitely a Merry Christmas.

Christmas Eve

On Christmas Eve we made some finger foods and headed over to Grandma and Grandaddy's. We got to visit with family as well as some of their neighbors. Grandaddy Bill was in true form as he was jokingly trying to convince Trista that he was about to go on his annual reindeer hunting trip. Notice her hands on her hips as she is trying to set him in line.

Cousin Trista having some girl time with Teryn.


Teryn got her bath and got to wear her new pajamas for Christmas.