Saturday, May 30

Mermaids, Home & A New Bed

Friday night I met A and R for dinner and a play!
Dr. Pepper-a rare treat!
A quick dress change and off to see the Little Mermaid!!

Ainsley was SO excited before the show-however about 2 minutes in she was screaming so much I had to take her outside. She was scared of Ariel's dad....after 10 minutes we went back in and she did great!
She planned her outfit for this fun night out down to the socks!

Pictures after the play with Ariel!
And the girl who played Sully! She was Ainsley's favorite!
Saturday Ains and I went to see Home. She had already seen it twice...but loved it so much she wanted me to see it too!
We were planning to get A a bunk bed for her 5th birthday...and we went looking tonight and fell in love with this one :) will be delivered this week!

Friday, May 29

Keeping our chin up

"Keep your chin up"....have you heard of this saying before?  I had a physician's assistant and family friend say this to me this last year when I was sick right before we moved to TX.  I was so overwhelmed at the time, I literally thought he wanted me to put my chin up during the quick care mother-in-law who was there with me at the time of the doctor's visit and I got a good laugh out of that one.  He was trying to be positive and say "keep your chin up" and I was so overwhelmed I just did what he recommended...literally :).

I have to say a year after we made the move to TX, Ryan and I are saying this this phrase to encourage one another.  Last June (2014) we got the all clear on one of Ainsley's muscular dystrophy tests and we breathed a HUGE sigh of relief!  In the months that followed challenges that were once well regulated (thyroid, hearing loss was stable, etc) begin to unravel again. 

We are extremely grateful that Ainsley's genetic test is underway and that we will have answers at the end of September from that.  We both thought we'd feel more relief after that was ordered. This lack of relief was evident to me this week when I was talking with a friend earlier this week.  I shared we are so relieved that the genetic test was order and then I casually said--hear hearing continues to decline in her left ear, thyroid hasn't been well regulated, we are doing regular PT to build strength in multiple areas and we are trying to learn how to support Ainsley through her speech artc concerns....and then it hit me.  Ainsley is going through a LOT still...she has always had a full plate of balancing multiple appointments, but when Ryan and I counted 15 doctors apts, therapy apts, blood draws, etc in April alone our stress around this became more grounded. 

I think it is important to share this because I blog for our family/friends to update them and for our Ainsley.  I print our blog books each year as Ainsley's baby book.  Although we want to be positive and keep our chins up, it is also important that we are being genuine.  This also helps us to make decisions that are best for Ainsley.  For instance, we decided to take a pause from speech therapy this summer.  We just can't do it all and Ainsley needs sleep...the speech summer program was right in the middle of her nap time.  Although it was difficult to turn down a great opportunity for her, she needs her sleep to be strong and healthy for PT and all of the motor development we are trying to work on this summer.

We are also getting more comfortable advocating for Ainsley.  Her thyroid disorder has always been well much so I often times forget she has it.  We give her a daily pill and up until this past year didn't have to give it much energy.  In late March her thyroid went into over drive and began to grow and was greatly enlarged--to the point I thought it was going to impede her airway.  We checked her levels and she was under medicated--fast forward to late April and she was overmedicated.  This morning we started a new dose--this will be the 3rd new dose over the past two months.  There are some clear signs of overmedication--inability to fall asleep, irritability, warm/hot hands and feet, etc.  Ains has been falling asleep around 10-11:30 pm nightly, her hands/feet are very warm. 

When I emailed her doctor yesterday to say I think she has too much meds still in her system he gave me two options--step down the meds again or do another blood test.  We trusted our gut with stepping down the meds because she's had 4 blood draws since early April.  We do have to check her blood levels again in 4 weeks to make sure this is the correct dose, but we've also reached out for a second opinion with an endocrinologist at Texas Children's because we don't know why we are having these levels that are jumping around so much.  We suspect it has to do with her more rare version of hypothyroidism--a present, but not functioning thyroid...but we think it may be functioning at points since we are returning to her same dose she had at the end of March...

In an effort to keep our chins up we are going to keep being thankful for all that God has provided.  Ainsley is happy beyond words.  She is growing and learning everyday and for that we are thankful.  She is full of spunk and equally full of kindness.

During this season of busy medical things we will keep taking time out to have fun and enjoy summer and rest! 

Today is a new day and one that we are looking forward to--this weekend we are taking Ainsley to a play of the Little Mermaid she is over the moon excited about this!! 

Wednesday, May 27

Weekend fun

This past weekend we went to the Dr. Pepper museum for the first time!  Ainsley loved "working the concession stand"! 

We visited the soda shop before we left.  Ainsley got her own Dr. Pepper and felt like such a big girl!

The life size Elsa doll....this is what Ainsley is saving for this summer!  We started a chore chart and she gets stickers every night based on that day and once she fills up a sticker sheet she gets $2.  She was SO excited when she earned her first $2 a couple of days ago.  She thought that was plenty to buy Elsa....we have some work to do on explaining the whole money concept.  We shared that she will likely have to work all summer to get Elsa.  We did stop by to "see" Elsa when we were at Target this weekend :)!

Ryan and I went to a wedding of two Baylor grads on Sunday.  It was a beautiful wedding--such a sweet, sweet couple!

We had several tornado warnings in our area on Monday so we took shelter in Ryan's walk-in closet since we don't have basements in TX.  Ainsley did great when we explained we needed her to get shoes on and long pants and her helmet.  She didn't question it she just wanted to watch her Netflix shows and said a quick prayer for God to take the tornados back to heaven.

Thankfully we had the all clear a few hours later--doesn't she look SO big here?!? 

She is growing up!

I drove Ains to school this morning and I looked back at her when I was at the stop light and she was making a butterfly in the shadow in the car!

Our sweet, spunky girl!  You'll notice Ainsley has the same dress over several days--we let her pick out her clothes and she always wants to wear this one...maybe I shouldn't wash it as often so she wears something else :)!

Saturday, May 23

Summer fun!

We have been trying to get out and about to enjoy the start of summer!!
We went downtown for dinner Thursday night. Ainsley loves the ALICO building! She went there last summer on a field trip and she got to go to the top floor!!
Loving on her daddy!

Curls for Friday!!

My sweet girl!
Friday night Ainsley and I stopped by campus to see Ryan's new office!

Ains visiting Ryan at work!
Happy Weekend!

Wednesday, May 20

Working hard!

Ains worked SO hard at gymnastics (PT) today! Her physical therapist gave her this necklace for all of her hard work!
Ains was pretty pumped about this!

She was also pretty pumped about the dessert she got for eating a great dinner!
Ains and I stopped at BBW after PT...they have amazing summer scents! Here are a few of the ones we got. I wanted to try them all!

Tuesday, May 19

Now we wait...

We jumped in the car and headed to Austin last night for an early morning appointment at the lab for A's genetic test.
I can't tell you how freeing it is to have a hope for some answers with this test. This was A walking into the hotel last night.
As I was checking us in, A took off her shoes and began jumping on the lobby couches...she made herself right at home!
Ains had a camp out on the couch in our room.
She had her own TV and stayed up until super late watching cartoons! She felt like we were on vacation!
We were up bright and early!
Look at those smiles!
Our genetic counselor dropped off the kit to us this morning. She has been amazing during this process.

Go time!
Ryan gave blood first, then me and then Ains. She was not happy when it was her turn but she recovered quickly.
On the road home! Ains picked out a BIG sticker book as her prize. She had fun with that all the way home. Now we are in a waiting period for 4 months as they work on our blood work. We have an appointment with Ainsley's neuromuscular doctor in late September and he'll go over the results with us. Thankful we got this done today!!