Tuesday, April 12

Search for answers

 I almost didn't write this post because I didn't know what to say.  I feel like we've been here before so many times with Ainsley and her medical journey.  We find ourselves back in the thick of it and are moving ahead as best we know how--advocating for our sweet girl and taking it one day at a time.

In November we breathed a sigh of relief that Ainsley's neuro genetic test didn't show any signs of muscular dystrophy. It did confirm her hearing loss and hypothyroidism. We were so thankful these two conditions were well under control with a daily med and her hearing aids.

Shortly after we breathed a sigh of relief some of Ainsley's conditions that were well under control were not so regulated any more. 
After much thought and prayer, we've decided to take Ainsley back to Mayo in Minnesota in early May.  This isn't a decision that we made lightly.  It requires planning (getting current records sent from multiple doctors), time and money--but after we got Ainsley scheduled with multiple appointments on May 2nd we had a great sense of relief.  I can't begin to explain the type of peace that the Mayo doctors provide.  Ainsley has been unique with every situation that she has faced and they thrive on unique and complicated.  Their doctor's aren't afraid to dive into complex situations and work with the parents and child to figure things out.  Here's why we decided to make the trip back to Mayo:

 Ainsley's left ear drum is basically non-existent at this point.  The ruptured left ear drum from summer got a bad ear infection in February and after we got that cleared up her hearing test in that ear showed a greater decline.  Her right ear tube in partially out and that is what happened before the left ear was ruptured. Ainsley's current audiologist (Dr. Drew) has been amazing to re-test Ainsley's hearing and re-program her aids so they meet her current greater hearing loss.  We are so grateful for her.  We are seeking out the Mayo doctor's advice on when to repair the ear drum.  We also want to know if not closing the ear drum for some time will result in more frequent infections and thus greater loss.

We will also see a pediatric endocrinologist.  Ainsley's hypothyroidism has been well regulated with medicine over the years, but it has always jumped around a bit.  Jumped around to the point where her current doctor sat us down and explained the importance of Ainsley getting her daily medicine.  If you know us as parents at all you would know that we are very routine about giving Ainsley her daily medicine--VERY routine.  Over the past few months here neck has grown to the point one of her doctors classified her as having a "goiter".  When I asked her current pediatric endro doctor he wasn't concerned with the size of her neck--because her numbers are in range.  Ainsley continues to have hoarseness and shows some signs of slight swallowing issues. Her speech therapist talked with us about this last week. We are going to get some advice on what could be causing this increase in growth in Ainsley's neck.

Finally we are going to meet with the genetics team about carrier testing.  We found out recently the genetic test we did for MD this past year didn't include carrier testing.  Her blood is still showing slightly elevated indicators of muscle breakdown. Since she continues to show some signs of weakness after a PT eval earlier this month, we want to be very diligent about turning over every stone on this and we believe carrier testing is the last option that we haven't explored. We've had two doctors in March tell us that Ainsley's brain isn't communicating correctly with her feet so we are trying to get a complete PT real done while we are there too.

 One of her Mayo doctors two years ago recommended carrier testing as a last resort to uncovering why her CK levels were elevated.
I wish I could say we have great peace about this all.  Honestly, I'm pissed. I'm frustrated that our sweet girl continues to have multiple challenges. I'm frustrated that we are constantly having to seek out answers and be on guard. Thankfully this frustration doesn't last long because we have SO many things to be thankful for....I'm thankful that:

Ainsley is SUPER pumped about going to MN.  We showed her videos of the Mall of America rides and she tells everyone she sees that we are going to MN in ___ amount of days. 

She knows that she'll have some doctor's appointments, but she knows that the doctors will be kind and fun.

I'm thankful that God was in the details--our flights from DFW to MN were SUPER reasonable! 

We are going to keep our chins up and keep looking for the good in the midst of these new challenges.

I love this quote by John Piper as I think of the life I envisioned for Ainsley--it is not vastly different that what I had hoped for her, she just has a few more challenges that I anticipated.  I take comfort in knowing that none of Ainsley's challenges are a surprise to God. He knew each and everyone of them before she was formed.  He set her a part and continue to provide in big and small ways for our sweet girl.  

"Occasionally, weep deeply over the life you hoped would be.  Grieve the loses.  Then wash your face. Trust God.  And embrace the life you have." -John Piper

We are going to continue to embrace life!

We have a good guide for embracing life...Ainsley sees the joy in the run of the mill, everyday, ordinary things.

"For I know the plans I have for you, declares the Lord.  Plans to prosper you & not harm you." -Jeremiah 29:11

1 comment:

Pemichel said...

My prayers are with you and your little girl, Michelle. I myself have had some health challenges in the past few years and that John Piper quote just did me in. So beautiful.