Sunday, May 3

Iowa Trip

What a journey we’ve had this past week.

We are so thankful for many things—safe travel, the support of family and friends, and the ability to reconnect with Ainsley’s former doctors. 

We had a bit of a crazy first part of the trip.  Ainsley started running a temp on Monday so we took her to the doctor that night and they started antibiotics just in case since we were traveling the next day.  We left the house at 4 am on Tuesday and Ainsley did awesome during the flights! 

Later that day though her fever came back and she was one sick and tired girl. 

Wednesday morning, we got up early and she powered through her PT eval, hearing test and blood work.  I’m so thankful that Ryan’s parents were able to take Ainsley to her hearing test and blood work while I headed out to visit with our universities.

Here’s a quick recap of what we learned. 

PT eval—her physical therapist was so pleased with Ainsley’s level of energy, speed while running and overall progress.  She did a developmental motor eval that she hadn’t done in 1.5 years. 

The range is 0-20 with 9-12 being average.  Last time Ainsley was an 8—just slightly delayed.  She now is a 5.  The gap between her and her peers is widening.  That being said she is still making progress-slowly but surely so that is good.

Plan—we need to really invest in gross motor this summer.  Swimming, gymnastics, some new play equipment for home, etc.  Her PT from Iowa recommended now is the time to really engage in weekly PT for a couple of months and then move to a monitoring basis. 

Hearing—Ainsley did AWSOME.  She was in the booth for about an hour!  They got a very reliable read which is a miracle since she had just done an hour of PT and was sick.  Her left ear continues to trend down.  She had a lot of wax in one ear around her tube so that could cause some of it.  I was able to talk with the audiologist by phone later in the day and she shared we should get her retested in one month to see if her left ear improves.

Ainsley and cousin Della.  These girls have a lot of fun together!

Thyroid—about 3 weeks ago we had to increase Ainsley’s thyroid meds due to her thyroid gland growing and being very large.  Turns out she was a bit over medicated. 

On Wednesday early morning her heart was racing as she slept—135 beats per minute. I called her Iowa endo doctor that morning and she ordered a blood test at our Iowa hospital and the next morning we had the results. 

Ainsley saying goodbye to Papa Larry & Grammie Linda--we couldn't have done this trip with out them!

Her TX doctor recommended stopping the meds for two days and then adjusting her dose.  We’ll see him on Tuesday back in TX for follow-up.  Her poor body has been through a lot this past week so we are excited to get her home and let her rest and relax before Monday.

I’m typing this as we are up in the air—30,000+ feet to be exact.  It’s always good to step back and see the big picture. 

We have so much to be thankful for and so much left to advocate and seek out for our sweet girl.  Ainsley is happy and spunky as ever—which was so true today as she was giving a concert (singing and dancing) for everyone as we waited to board the plane.

She’s a charmer.  She got special treats from the flight attendants on both flight! 

Ainsley has had Dr. Pepper once (a little sip) and she loved it.  I always let her pick special treats out for the plane and she really wanted a Dr. Pepper.  We settled for splitting a Diet Dr. Pepper.  She had a few sips and thought that was the best thing ever!

Ryan and I need to get a plan moving forward for how to help her keep making good strides with gross motor. 

We need to keep praying for approval for the genetic muscle test in light of the PT eval this week.  We’ll also keep watching her hearing and thyroid. 

We’ve decided to transition most of her specialists to Texas Children’s in Houston.  Her neuromuscular doc was a little surprised we hadn’t done that since moving here and with her thyroid fluctuating and hearing mildly changing it just make us feel better knowing we are taking her to the best of the best in the state and coordinating care for her.

"I prayed for this child, and the Lord has granted me what I asked of him."
-1 Samuel 1:27

She took a BIG nap when we got home Saturday night!  She woke up at 8 pm so we went out to dinner and had a movie night!

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