Another unplanned doctor visit

Teryn has been on a new medicine for a couple of weeks now to help with the reduction of secretions. It has been working great except for causing dry mouth and a little constipation. Okay, so here goes too much information. Today marked 5 days that she had not had a movement. We tried prune apple juice which has worked a charm in the past. This time...nothing. So I called the drs office and they said to bring her since it had been five days.

On the way I decided to stop by and place an order at a store that was on the way. As soon as we walked in the door James called and said he had locked himself out of the house. So, Teryn and I left the store and went to get him. We got to the drs office and it was PACKED. (They said they had a record number of patients today.) That always makes me so nervous with Teryn. We found a corner that was less crowded and I took Teryn of her seat to play. After a few minutes I got a little suspicious of some signals she was sending me and.....sure enough....she pooped right there in the waiting room as we were waiting to see the doctor for constipation. Talk about ironic. So then I had to take her out to the car and change her. We finally got to go back and see the dr and it wasn't a wasted visit because I had some questions for him anyway. He is such a wonderful dr. He really takes time with us and answers all of our questions and just laughs with us about the fact that we seem to need to see him 4-5 times between scheduled visits.

After our appointment we decided to grab a quick dinner at a cafe we love since we figured it would be mostly empty. While we were waiting on our food Teryn was having a blast talking to the duck that hangs from her seat. I got some great pictures of her smiling at it.

Showing off her two new teeth.

Smiling at her duck.

Heehee....such a silly girl.

After she finished talking to the duck she decided to rest for a bit. Look how great she is at connecting her thumb to her mouth now.

Teryn's Tummy Time

Here is a look at how well Teryn is doing with her tummy time. As an added bonus Xavier makes an appearance for his "close up."

Busy, Busy

I just realized that it has been a VERY long time since I have posted any updates. A lot has been going on and we have been lucky just to make it through each day without falling down with exhaustion. I am back at work teaching now and the beginning of the year is so extremely busy and taxing. However, it feels great to be back there and I couldn't be happier with the group of kids I have this year. They are definitely the "cream of the crop." My first days back were a little emotional for me. I know Teryn is in great hands staying with her grandma and grandaddy. I have such a peace knowing she is being taken care of by people who love her so much and are willing to do whatever she needs. It is still so hard for me to leave her everyday just because I wish i could be with her every second. I wish I could just take her to work with me. Yes, I want my cake and I want to eat it too.
The "Meet the Teacher" day was also a little emotional. This is kind of like an open house day where students can come in and see their classroom and meet the teacher before school starts. Well, this was the first time I had seen any of my students from last year. I never did get to visit them or say goodbye because the end of school was right as we got back from Miami. I always have previous students who like to come in and say hello. This year was no different. I was standing at the door greeting several of my new students and their families when in walked the first of my students from last year to visit. I had not expected how I would react. As soon as I saw him I grabbed him in a hug and began crying (in a good way). Luckily he and his mom understood. I was just so happy to see him and had been so sad that I was unable to say goodbye at the end of the year to my sweet students. I composed myself and it was a little easier as I was visited by more previous students. I guess I hadn't realized how much I really missed them.
So the new school year is underway and we begin our day very early at 4:30. James and I get up at this time and begin getting ready. I don't get Teryn up until the last minute and lots of time she will sleep right through me giving her meds, changing her tube dressing, and changing her clothes. By the time we get home in the afternoons we have just enough time to play for about 30 minutes, get dinner, have bath time, and then get ready for bed. Sometimes I am lucky enough to get in a little bit of school work. It is exhausting but I wouldn't trade it. I have an amazing little girl with whom I cherish every minute I get to spend and I also have a job where I get to work with the greatest teachers who also happen to be some of my best friends, and a husband who is so loving and willing to help me with anything I need. God has certainly been very good to me.
Okay, so on to Teryn updates......here are a few of the amazing strides she has made:
-She has begun smiling and "laughing" so much more lately
-Her head control and lifting up on her arms has gotten very strong. She amazes me every day with how much more of this she can do and how high she can lift.
-She has gotten quite smooth at connecting her hand to her mouth and loves to "suck" on her thumb.
-She has gotten quite active and loves to move her arms and legs around a lot. Last night as I was dressing her after her bath she kept trying to move her body to the right. I am convinced she is going to try to roll over soon.
-We received a preview reading of her EEG and there is some abnormal brain activity due to the neurological issues she has (hydrocephalus and ventriculomegaly) but there was no seizure activity noted during this time and she did not respond negatively to the light stimulations.
-She now weighs almost 17 pounds.
-She has gotten GREAT at tracking objects. The last time the interventionist tested her we noticed she was still not tracking up and down, just left to right....WELL....yesterday I was in the party supply store and saw a mylar balloon with a huge Elmo face on it so of course I had to get it knowing how much she loves her other Elmo balloon. The very first time she saw it I was able to get her to track it up and down several times. GO TERYN. She just needed the proper motivation. (And probably a larger target.)
-She has one (almost two) teeth. It is so cute. I have just felt bad because it has caused her so much pain. She is still working on awareness of her own body and therefore has bitten her finger and tongue to bleeding several times. It hasn't happened now in several days but before it was pretty bad where she even bit a chunk out of her tongue.
So much of Teryn's progress is because of all the work her grandma is doing with her. She does physical therapy and developmental exercises with her everyday. By the time I pick her up she is so tired like she is syaing "Grandma worked me so hard, can I go home and take a nap?" Thank you mom for loving Teryn enough to work so hard with her.

During the first week of school we had quite a scare. Teryn was at my parents house and she had just woken up from a nap. She began spitting up secretions as she still does a lot and my mom began suctioning her. Teryn panicked from the secretions and took in a deep breath. As she did she aspirated. She immediately could not breathe. (Think about when you swallow something the wrong way and have to cough and cough to clear your airway. This is what happened to Teryn except she can't cough to clear her airway.) My mom immediately yelled for my dad to come in. As he came in the room he saw that Teryn had turned blue, was not breathing, and had gone limp. He grabbed her up and told mom to call 911. He began administering CPR and she quickly was able to regain her breathing. We took her to see her pediatrician that afternoon and to get a chest xray. She definitely had aspirated and had a tiny mucus plug so we began antibiotics and breathing treatments as a precaution to prevent any possible infection. As we were talking we figured out the culprit...Ora-jel. We had been putting a very tiny amount on Teryn's gums a couple times a day because she was in such pain. Apparently that little bit of flavor caused her to salivate too much and then because her mouth was numb she was unable to coordinate her swallow. Lesson definitely learned....no more Ora-jel. I felt so bad because I was the one that told mom to give her some if her gums were bothering her too much. Just another example of how we can't just assume the norm when it comes to Teryn. After this episode Teryn's doc also prescribed a new medicine for us to try. It is often given to trach patients to reduce secretions. After discussing the risks and benefits we decided to give it a try. After a couple of days we definitely saw a difference. We hardly have to suction her anymore. Usually only late afternoon when her dose has begun wearing off. We decided to try this med in hopes that it would reduce the risk of aspiration as well as reduce ear infections. We will be on it for a few weeks and then we will have to come off for a week so her body does not create a resistance to it. Then we can start again for another few weeks.

We also had the barium swallow and gastric emptying studies done. During the barium swallow a small amount of radioactive barium is given to her in her mouth, it is then watched as it travels from her mouth to her stomach. We are watching to see what she does with it and if it travels at the correct rate. During the gastric emptying she was again given radioactive barium but this time straight into her gtube. Then she has pictures taken at 0, 15, 30, 45, and 60 minutes to see where it is. This is to see if her stomach is emptying properly or if things just sit there and eventually cause her to reflux when it is too full. One observation I made was that she refluxed barium all night after the barium swallow but only once or twice after the gastric emptying. Not sure what it all means yet. We meet with the surgeon soon to go over the results and to see if we need to schedule any plans with him.
We have some busy days ahead as well. In the next two months we will be traveling for an MRI, meeting with the craniofacial team to discuss plans for the surgical repair of her cleft, follow ups with neurology and gastroenterolgy, and another consult and examination with opthamology. After the MRI we will probably also meet with neurosurgery to see if they want to drain any of the fluid. Teryn's neurologist thinks this may be a good idea just to reduce the risk of any seizure activity.
So there is the very much abbreviated version of our past month. Here are a few photos as well so you can see how much our sweet girl is growing.

First a picture of Xavier because he still likes the spotlight and wonders why it's not all about him anymore.


Teryn looking in the mirror during tummy time. I will have to post a more recent picture because she can lift MUCH higher than this now.
Uncle Lee and Gavin during a recent visit.

Teryn smiling away at Aunt Cheryl.

Cousins Gavin and Trista.

Gavin and Teryn really "meeting" each other for the first time. Even though Gavin is older, Teryn still beats him in size.

Xavier stealing a kiss. This picture was totally unplanned. Just luck in capturing it.

Trista playing with some toys she found in her drawer at our house.

Cousin Gavin.

Teryn studying her hand before she puts it in her mouth.

6 months old!!!!!

Eating her hand as an appetizer before our dinner for Poppy's birthday.

She is making so much progress. She is by far the most precious baby ever...hands down. Thank you Lord for your faithfulness and fulfilling your promises. And mostly thank you for choosing me to be Teryn's mommy. In an entire lifetime no one could accomplish worthiness of this amazing blessing. Thank you for giving it me anyway.

Camping, Doctors' Appointments, and EEG

I am going to do a little catching up on this post. It has been a while since I have had the chance to come on here. It has been so busy lately since getting out of the hospital. I have been diligently trying to get my classroom together as well as heading out to MANY appointments for Teryn.

Last week we had an appointment with the neurologist on Wednesday and the gastroenterologist on Thursday. The first appt was 2 hours away and the second was 3 hours away. My mom and Dad just happened to be camping in the area so James went to the appt on Wed then Teryn and I stayed and gma and gdaddy took us to the appt on Thursday. Unfortunately James had to head back and go to work. Teryn and I ended up staying for 3 days. She did so great. The second night she was exhausted. We gave her a bath and layed her in her bed and she went straight to sleep and slept her full 12 hours without a peep.

Here are the updates fromt he appts:

Neurology: The dr is going to keep her on her current seizure med for a while but said he won't keep her on it for many more months since it has been shown to possibly impair development. This was news to me. Also kind of frustrating since we are already working so hard to help her make good progress with her development. He ordered an EEG with light stimulation so we can see if this truly is one of her triggers. I am really praying that it isn't. Currently we are avoiding her facing the TV because of flashes, cameras with flash, toys with flashing lights, the sun flickering in the car windows, and anything else that flashes. It will be great to not have to be so careful about avoiding such things.

Gastroenterology: The dr thinks we are right on track with the current plan and tests we have in the works with our surgeon. We will go back to him in 3 months to monitor how things have progressed.

Here are some pictures from our camping time:

Teryn taking her bath in the camper sink.

Mom and I were cracking up because Teryn kept propping her feet up. She was enjoying her little spa time.

We were wondering how we were going to fit Teryn's bed in the camper without it being in the way. Grandaddy displayed his excellent craftsman skills once again and came up with a perfect solution. He was able to take out a portion of one of the bed areas and created a cubby that was the PERFECT size for Teryn's travel bed. Here is a view with my bed on the left and Teryn's on the right.

My bed.

Teryn's bed.

Teryn has been getting so much better with her head control. I decided to let her try her Bumbo seat without any supports and she did awesome.

Here she is making what grandma calls her "Elvis look." heehee

I guess all the work of holding up her head wore her out and she fell asleep.

We got up VERY early this morning and hit the road at 5am in order to be on time for her EEG at 8am. Here is Teryn getting all of her electrodes put on. She was very patient and didn't get fussy until the tech was almost finished.

Looks like colorful dreadlocks.

Losing patience and getting fussy.

Finally, her mummified finishing touches.

When it was time to begin the study she was pooped and went right to sleep and slept for almost the entire time.

Here she is once we got home. She had quite the mohawk hairdo from all of the gummy glue.

We should have results from the EEG in a few days.