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!! 

No comments: