Friday, June 24, 2011

Recent Videos



Teryn loves to look out the window by her changing table. Every time I set her up there she gets so excited and starts talking.





Sweet girl being sweet.





Teryn's OT and I have been working so hard to help her realize she can scoot if she would untuck her left arm. Each time we tried to help her get it out she would just roll all the way over. Well....after much trying and guidance she has started doing it all on her own. Way to go Teryn!!!!!


She has been making great progress over the past few weeks. She is also grasping objects for a few seconds and trying to get toys in her mouth. She brings her mouth to the toys instead of vice versa, but it is still progress.


We have also started using a small toothbrush with her and she LOVES it. This is a great sign for when we begin intensive feeding therapy. It is great to know she is not being so averse to things in/around her mouth. So many miracles in one little girl

Elmo, Elmo

Look at this sweet baby I found sleeping with her Elmo.



I cannot believe how much our girl is growing. She is getting so loooooooong. Even though I see her everyday I still notice. I recently put on a pair of her Elmo jommies she hasn't worn in about a month or so. It was hilarious to see how they have become highwaters and a midriff. Guess these pajamas will have to be officially retired for Teryn.
















16 Months and Therapy Evaluation

On June 16 Teryn turned 16 (months that is). We also had a meeting with her early intervention coordinator to evaluate her progress over the past year and set the new goals for the coming year. Her coordinator has not seen her in a year so she was astonished at the progress she has made. Her therapists tell us every week how she continues to progress even more than their original predictions. We have ourselves a little girl who knows all about perseverance and persistence. She will try and try until she figures things out. She will fuss and grumble when she can't figure something out but will keep on trying. It is absolutely amazing how God continues to work through Teryn and prove His faithfulness.
We are so blessed to have therapists who love Teryn and believe she can meet every goal we have for her. Watch out because there is no stopping this girl.
















































































































Another Pool Visit

We made another pool trip recently. Aunt Lisa was home from her summer job for a few days and invited us over. One of the pools at her condo has a shaded area and since Teryn hates the sun in her eyes I thought this one would be perfect. She fussed at first because the water was pretty chilly. As soon as she adjusted she enjoyed relaxing in her float and even fell asleep. We were very happy to spend some time with Aunt Lisa. We are ready for her to come home again soon.



















Family Day and the Big Girl Seat

It has been a long time since we have been able to take an entire day to just have a family day. No housework, no yard work or errands. We decided to take a little road trip to Destin. I was really craving some chicken salad from a restaurant there and I wanted James to try it. We headed over and both locations of the restaurant had a loooong wait. So, we decided to go to the new Bubba Gump that had just opened. James is always wanting seafood so it was a nice treat. This was James' first BG experience and since he is such a movie buff he loved the memorabilia and trivia from the staff.
We looked at some of the special effect tricks as we waited for our table.





Teryn LOVES looking out the window, especially when she can see foliage. She was so happy sitting on the cooler looking out the window while we waited.


Teryn and Daddy trying out the Forest bench.


After lunch we did some window shopping and went to the commons for some ice cream. Teryn was such a sweet girl. She has been enjoying car rides much more lately since getting her big girl car seat. She loves being able to see out the windows and especially seeing mommy in the rear view mirror. She loves to smile and talk to me while she is riding.



























First Trip to the Beach

Our sweet cousins Rick and Kristy were recently vacationing for a week near us. They invited us to come and see them. We were hoping for more than just a day trip but with Teryn's therapy schedule that was a little tricky. James had to work so Grandma made the trip with Teryn and me. Once we arrived and visited for a few minutes we headed down to the beach. We set up a little beach tent for Teryn to sit under. She wanted to roll around after having sat in her car seat so long. However, she was not pleased with the lumpiness of the sand. She was also very sleepy and finally took a little nap.
We were watching a storm approaching and as soon as we saw the first flash of lightening Grandma took Teryn and bolted for shelter. We headed back to the condo and enjoyed a yummy grilled lunch and some more time visiting.

Teryn loved rolling around on the floor and peeking out the glass door. She watched Rick grill and laughed at him as he walked by. After lunch we decided to give the pool a try. Teryn did a wardrobe change and we headed for the pool. The sky was looking pretty dark again in the distance but we figured we would try the water for a few minutes. Teryn seemed to like the pool much better was was still tired and unsure of what was going on.



Within just a few minutes we saw lightening again. Grandma once again grabbed Teryn and then ran for shelter.


Can you tell she was ready for a long nap?


Even though the weather did not cooperate as well as we would have liked, we still loved getting to visit with Rick, Kristy, and Nathan. We wish they lived closer so we could see them more.









Thursday, June 23, 2011

We have a surgery date!!!!!

The very next day after her MRI we had to travel to Gainesville to meet with the entire craniofacial team to be evaluated for cleft surgery. Since James had to work, GG made the looooooong trip with us. We saw a total of somewhere between 10 and 12 people. I lost count after a while. We met with a social worker, clinic director, ENT, dentist, pediatrician, speech therapist, geneticist, plastic surgeon, as well as a couple of others thrown in there too.
Teryn was cleared by everyone as being ready for surgery. Her surgery date is JULY 13. Please remember Teryn in your prayers during this time. The surgeon is expecting only a couple days hospital stay. Please pray for guidance for the surgery team, quick healing for Teryn, safe travels, and calm nerves for Mommy.
Once her surgery is complete we will give everything a couple months to heal then we will do a detailed swallow study and based on those results we will begin more intensive feeding therapy.

Tubes, MRI, Camping, and Caterpillars

Between December and April Teryn had consistent fluid and ear infections. Over a 2 month period we went through a total of 7 different antibiotics with no change. The fluid did not get worse, but it did not get any better either. The original plan was to place tubes for Teryn when she has her cleft surgery. When she was hospitalized last in March I spoke with her pediatrician about my concerns with waiting. He agreed that it would be better to go ahead and take action. We met with a great local ENT and Teryn had tubes placed in April The procedure went fabulous and she has had no fluid since then. It has been amazing to see the difference in her response to noise and even the increase in her attempts at vocalization. She is "talking" so much more. (in her own way)

The end of May was very busy. After my last day of school we headed out of town that afternoon for a night of camping with Grandma and Grandaddy. They were going to camp in Pensacola and Teryn had an MRI there the following morning.
The MRI went well and after speaking with the anesthesiologist we agreed to not even attempt an IV. I received a call from the neurosurgeon a couple weeks later and there has been no change since her last 2 MRI's. This is GREAT news. This means that there is no increase in the fluid or evident pressure around her brain so there is no need for brain surgery!!!!

We had a nice sleepover with Grandma and Grandaddy but had to rise very early for the MRI and then head home right after.

Teryn and Grandaddy having some chill time in the camper.

Attempting a bath in the camper bath tub. She is much to big for the sink now. Since she doesn't sit completely independently, this was quite a challenge but we got it done.




Before leaving for our trip she needed a snooze. She cuddled up to her caterpillar on her own. She was so cute we hated to wake her to put her in the car.
















Tuesday, June 21, 2011

The Fight

Teryn continues to sleep in her small/travel pack n play in our bedroom at night. her bedroom is completely on the other side of the house and I am still not comfortable with her being more than a few feet away at night. It is so convenient to lean over and peek in her bed to make sure she is okay and hasn't completely wrapped herself in her apnea cords or feeding tube (yep it happens a lot). She still has a genuine apnea now and then and it is much easier to keep an eye on her when she is closer. So, enough of my excuses and on to the explanation of the pictures below.
During our Easter trip to visit Granny we stayed in a hotel and took Teryn's bed with us. We noticed how she has gotten so long and can't completely stretcher herself out in it anymore. When we returned home I kept the small bed packed and unpacked the larger one. The next morning when Teryn woke up I noticed that her nose was red. She rubs her face on blankets and the floor a lot so I figured that is what she did. Then the next day when I got her up it was even worse. There was blood on her blanket, clothes, and even her glow worm. As I investigated I noticed blood all over the mesh on the side of her bed. She had scooted herself over to the side of the bed and was rubbing her face like she does when she is mad. She rubbed it over and over on the mesh which rubbed her nose raw and made it bleed which made her mad and probably made her rub her head more. Needless to say I made some modifications with the bend bumpers we got from the hospital and now it is harder for her to get to the mesh. Not impossible, because our problem solver of a girl has now figured out how to get them out of her way. Luckily, not more fights with the mesh though.
Here is a look at her poor little nose:




















Saturday, June 11, 2011

Easter















I know this post is coming quite a bit late, but I am finally having time to catch up on postings since spring break. I realized I never got to post pictures from Easter. We spent Easter visiting my grandmother who was in the hospital in critical condition. We were very worried and wanted to see her. As soon as we got in town a family member called and said Granny was not doing well and it would be best for us to come straight to the hospital. We went on up there even though it was almost 9:00. Well, the visit started out very exciting for a reason of my own. When we got into Granny's room I went to pick Teryn up out of her stroller. We were using a stroller that belongs to my parents so I am not as familiar with it. As I was getting Teryn out I noticed knobs on the side so as I picked her up I made sure to swing her feeding tube around it. What I didn't realize was that I swung it around the knob on the opposite side. I pulled Teryn up into my arms and that is when she let out a pitiful, painful cry. I looked over and my unlce was holding the balloon of her feeding tube. This is the part that shoud be IN her stomach...I had pulled it out on the knob of the stroller. I layed on the bed with Granny and sent dad out for a syringe and sterile gauge. With some assistance from dad we were able to get the tube back in successfully and Teryn calmed down. I am happy to say that I have successfully changed her tube (purposefully) since then.


We visited the next 2 days with Granny and she was able to regain some of her strength and is doing somewhat better now.



On Easter day we had lunch with family and then headed back home.