First Feeding Practice

So, great news. Teryn's pediatrician and speech therapist believe that she has been tolerating her food in her stomach well and has made HUGE improvements with her oral motor skills and how she handles her own secretions and reflux so we have been given the okay to begin oral feeding therapy.

Our first step was to try mixing her liquid formula with a powder called "thick-it."

The powder does not change the taste, just the consistency. This way we could scoop a little on the end of her pacifier and try to get her to want to get it off with her tongue. Here are some pretty humorous pictures of our first attempt without the therapists. (so this is Teryn's second try)

Here she is getting ready.

Bib? Check.

Why are you putting food on my face?

Ahhhh...."see"food.

She has not been too crazy about the formula and thick-it. But would you want to eat something that tastes like the stuff you reflux all day?

So we were given the okay to try mushed up bananas and now sweet potatoes. We are having better results with those.

By the way. Have you ever wondered why so many pictures look like her eyes are half closed? Well, that is because our smart girl has figured out that cameras produce a bright flashing light. So now when I put the camera in front of her she closes her eyes in anticipation. So smart.

Very Mobile Girl

Recently we decided to rearrange the living room and take out the bed we had been using for Teryn in there. We have been keeping her so close to us that we needed a bed and changing table in there since she was constantly hooked to her feeding pump as well as her apnea monitor, it is hard to take her to another room easily. But now she gets time off of her feeding pump and really enjoys her time rolling around on the floor so we decided it was time to pack that bed away and reclaim some of the living room. We had to move Teryn and all of her belongings to one corner while we made the move. Can you believe all this stuff. And this isn't even her bedroom!

Our little girl has gotten quite mobile. The other day I was changing her clothes. I laid her on her back in the middle of the blanket while I took her pajamas to the hamper and got her clothes for the day. That took maybe 30 seconds. When I came back this is what I found:

She had rolled herself all the way over there. Guess we better watch out now.

Neurology Report

We met with Teryn's neurologist to go over the results of her EEG and MRI. A few months ago we had the EEG done to see of light stimulation was one of her seizure trigger. There was no seizure activity seen during this test Praise the Lord. We can now be a little more liberal with her experiences when it comes to light. Before we didn't want her facing the TV, would shield her eyes from the flickering son, banned toys with lights, and would not use the flash on the camera.
There was however some abnormal brain activity on the EEG not related to a seizure. The neuro said this is basically just because of the neurological anomalies she has. He was very patient to answer all of our questions and even took time to show us examples of other EEG's to give us a better understanding of what we were seeing.
He then began going over the MRI. It appears that her hydrocephalus has remained stable. I made sure the radiologist had a copy of her previous test done in Miami to compare. There are still some anomalies in the way her brain developed. As he is going over everything he never mentioned the dysplastic corpus callosum. When we were in Miami this was one of the most profound findings. Basically her corpus callosum was found to be very thin. This is the part of the brain that helps both sides to communicate with each other. I was told that it would grow as she grew but never in proportion to what it should be.
So-back to our meeting with the neuro. He is going over the MRI and never mentions the dysplastic corpus callosum. So I asked him, "What about her corpus callosum?" His response was, "What about it?" I explained the previous findings and discussions. He pulled up her previous study and said, "Hmm. I wonder if this was maybe a bad slice on their image. Looking at the new picture it may be slightly thinner but nothing significantly thinner for her age. I definitely wouldn't call it dysplastic."
Did you hear that? GOD has already begun healing something that science and medicine said was impossible. What a mighty and awesome God we serve.
At our previous appt he had said he would want to change her anti seizure med at this appt because the one she is on can possible impede development. However, since she has been seizure free (PTL) he didn't want to fix something that wasn't broken, especially not knowing how she would respond to another med. So, we will leave her dose at what it is. As she gains weight the saturation of the medicine in her blood will decrease. If she has a break through seizure (she won't!) then we will change the meds at that point. Otherwise, she will basically wean herself off the med as she gets bigger.
From here we will do 6 month follow ups with the nero and we are waiting on the referral to the neurosurgeon. We will meet with her mainly to get on her patient roster in case we ever need her and also so she can determine how often we will do follow up MRI's.
Looking good!

Crystal's Birthday

For my birthday we met with our parents at a local favorite restaurant for dinner. Getting a good picture of James and I was a little challenging since my Dad kept goosing him.

I really didn't want the restaurant to sing to me becuase we had seen them do it at another table and it was a very loud ordeal. Somehow, they got word anyway and came a singin'. I quickly put my hands over Teryn's ears since she is so sensitive about sounds. i think they picked up on it because they got a little quieter.
She is wondering what is that crazy thing on Mommy's head.

For the weekend we decided to go to the outdoor mall on the beach and walk around since it would most likely be empty....and it was. It was such a beautiful day we really wanted to be outdoors.

This picture makes me laugh every single time I see it. We were taking pictures of Teryn in her cute Halloween clothes. Her expression says.."Enough with the pictures already!"

Some pics of us on the boardwalk.

What a beautiful day the Lord has made for us to spend together.

Rolling Over

WOW what an amazing girl we have. Recently, every one of her therapists has commented on how she is doing much more than they expected from her at this point. She has decided she wants to be able to get around on her own terms and has learned to roll over. She learned to roll from her back to stomach first which I am told is the opposite of what babies usually do. Here she is getting ready........(love the smile0

Taking a break halfway to smile at Mommy.


She points her toes as momentum. Maybe she will be a ballerina.

Oh, another break to suck on her arm.

Yay! She did it. She has actually gotten VERY fast at rolling over.

Now she can roll tummy to back and back to tummy and occasionally rolls in the opposite direction. Just another testament on how God has created an amazing little girl. She is going to be such a light and hope for others. She continues to defy so many odds. We serve a mighty God.

Halloween Festivities

Here is Teryn in her cute Halloween pajamas that her GG got her. They were soft and warm for our recent chilly nights. And of course most importantly, she looked adorable in them.

The weekend before Halloween we attended the fall festivies at our local children's museum. I worked there many summers and holidays as a beginning teacher and have been one of the judges for the costume contests for many years now. This year I took a break from my title and decided to take Teryn. We went very early before the crowds got there. We met some friends there as well as Aunt Cheryl, Trista, and Gavin. They were so cute in their costumes.

Me with Trista and Teryn.

Mommy and the sweetest Ladybug.

Gavin, Aunt Cheryl, Trista, Mommy, and Teryn.

Aunt Lisa and Teryn.

Gavin the Octopus trying to figure out how in the world he is supposed to hold his bottle.

Silly Grin.

Meeting with Craniofacial

We recently met with the plastic surgeon we have chosen to do Teryn's cleft repair. Since this particular hospital and his office is 4 hours away we left the night before and spent the night in a hotel. We just thought that much travel in one day was too much to demand of Teryn.

Here she is dressed and ready to go.

Lounging on the bed while Mommy and Daddy packed up everything.

Talking to Daddy as she is getting dressed.

She has recently started reaching out for people's faces. So sweet. Look at her smiling at her Daddy.

Ok....so the meeting with the surgeon. He said that her cleft is not very wide which is a good thing. Another good thing is that it doesn't appear to affect her gumline at all. Because of the other health issues she has he is not in a major hurry to do the surgery. He said we could wait as long as 2 years but he would prefer to do it around 12-18 months of age. He is referring us to meet with the entire cleft team at the hospital. This was the reason we chose this particular surgeon and hospital. They will assign Teryn a cleft team consisting of the surgeon, ENT, neurologist, PT, OT, speech, gastroenterologist, and basically anyone else who would need to be consulted to make decisions about her as a whole. We will probably meet with them after Christmas and based on how she is doing in all areas we will schedule the surgery. We are thinking probably the beginning of the summer. That way I can stay with her the entire time in the hospital without missing work and also be at home with her for the further recovery.

It is very exciting to think that we are getting so close to being able to resolve yet another medical issue for our precious girl.