September Updates

It has been an entire month since I have been able to take enough time to post new pictures and updates. I apologize that it has been that long. I know several people have been asking me to update so here we go. Here is a very brief review of what September has held for us.



First of all, every single day is a huge blessing. Teryn brings so much joy to every minute. She is by far the most amazing little girl. I know I am biased, but I truly believe that she is. She is growing and getting stronger every day.



Here is the September medical review:



Gastro: The number one question people always ask is..."Is she still feeding through the tube?" Yes, she is. She still receives 24 hour a day feeds through her g/j tube. Everything still goes straight to her intestines. We completed a barium swallow study as well as a gastric emptying study. This was a 2 day testing process. Our hope was to find out why she still refluxes anything in her stomach and why she still has episodes of refluxing swallowed saliva even. We were very discouraged to find out 2 weeks later that the results were inconclusive. The barium swallow was inconclusive because some barium came out around her mouth and also went up into her nasal cavity because of her cleft. The gastric emptying was inconclusive because of a few things 1)Teryn's stomach is very small from the fundoplication wrap to reduce reflux 2)the large tube takes up a lot of space in her stomach 3)the j portion of her feeding tube goes through her pylorus which makes it more difficult to see what is emptying. So, we go back to see the surgeon this week and talk about the possibility of redoing the study. We will also travel to see the gastroenterologist at the end of the month.
We will continue to monitor things. When the gastroenterologist and her pediatrician think that she may be able to attempt something in her stomach then we will do a trial feed of pedialyte into her stomach. This will be the first step to transitioning back to stomach feeds. We aren't sure on a time frame for that yet.

Neuro: NO SEIZURES this month. That in and of itself is a huge blessing. Any seizure activity can set progress in development backwards. We are still on the same does of antiseizure meds. We have an MRI toward the middle of the month. This is to monitor the hydrocephalus and the size of her ventricles. The neurologist has mentioned he may want us to consult with a neurosurgeon again to talk about the possibility of inserting a shunt to drain the fluid. This will reduce the possibility of future seizures. We meet with the neuro at the end of the month. We will also be discussing with him an observation we have made from watching Teryn. She tends to "zone out" quite a bit. I call it sleeping with her eyes open. We want to check with him and make sure they aren't a type of seizure called absence seizures. We will be praying for a good report on that.

Opthamolgy: We saw the opthamologist this week and structurally everything with her eyes looks good. Another point of good news is that there is no fluid pressure behind her eyes. An ongoing concern is the strabismus (eyes turning inward). This has certainly improved since birth and she can coordinate both eyes when she really focuses on someone. The doctor believes it is more of a neurological concern as opposed to weak eye muscles. (Remember the part of her brain that is thin is the corpus callosum which helps both sides of the brain communicate. This would make it difficult to coordinate both eyes on one subject. I believe the progress she has shown just proves how strong she is at making accommodations.) If it is still a problem when she is 2 years then we will discuss plans for correction.

Physical Therapy: She is getting so strong and learning to use both sides of her body equally. She can now bring her hands together at midline. She has much more torso and head control and I believe she will be ready to sit independently soon. She is SOOOO close to rolling from her back to her tummy. She can pretty much roll from her back to her right side. She will get half way and get aggravated. It is pretty funny. She is excellent at tummy time now which you will see in the photos below. She is learning to put weight on her legs. She does it much more when she is mad. So we tell her if she is going to get mad then she has to exercise during her mad time. She has also begun pushing on her feet now when she is excited as well.

Speech Therapy: Most of her speech therapy is in a holding pattern until we can begin oral feeds. In the meantime we are working with other types of oral stimulation. She loves putting her fingers in her mouth. We are practicing with a paci in her mouth just for her to practice making a seal and knowing how to move her tongue around. She does very well with it.

Development Therapy: She has not reached out to grab anything purposefully yet but for the first time this weekend she did make a purposeful connection with her hand and toy this weekend. (Pic below) Mommy was very excited of course! She will stare for so long at the toy and work on moving her hand. It seems to be the depth perception that it holding her back. Along with a little bit of smooth muscle control. I am so proud of the progress she has made though. She can now track VERY well. She tracks up and down, left to right, and even sometimes in circles. She is increasingly able to focus on smaller objects. She is turning more to sounds and voices.

Craniofacial: We go to Shands this month to meet with the craniofacial team about Teryn's cleft repair. I will update after the visit.

General: She continues to gain weight and grow at an appropriate rate. She has received her flu vaccine since she is at high risk of complications from any illness. She continues to have constant fluid behind her ears so we know that tubes are going to happen an some point.

Here are some non-medical things that have been going on:

Becoming a PRO at tummy time. She has gotten so good at pulling her head up and back that now we have to help her keep from overextending backwards when she is sitting up. Here she is looking at who else but Elmo.

Close up of that adorable face.


Aunt Lee-Anne came to visit all the way from Seattle.

Teryn got to meet Nanny for the first time. Teryn was spoiled for a whole week as Nanny would sit next to her at nap time at pat her bottom until she fell asleep.

Teryn was snug as a bug with a blanket made for her by a special friend from Panama.

(She truly has prayer warriors all over the world.)

Teryn's favorite spot at Grandma's house. Sitting on Grandma's shoulder and staring at the lamp.

Teryn and Aunt Bobbie laughing together. Aunt Bobbie declares it only takes one smile for her to steal your heart.

Here is my amazing little girl reaching to touch a toy.

Hand is almost there.......

She did it!!!!!!!

Just thought she looked precious and funny as she was sleeping this morning. Love the hiney in the air.

We are getting some beautiful weather so we decided to get a few photos outside today.

Love this one of Teryn and Daddy.

With the recent cool mornings, Teryn was able to wear a sweater for the first time. SO cute!

Laughing at one of her new toys.

Video of her laughing at her new toy.

Video of Sweet T just being silly this morning: