Wednesday, September 23, 2015

Paying the Piper

Who made up that phrase anyway? Paying the piper?

I guess it doesn't matter. What matters is we have a child who is now paying this unknown "piper."

I mentioned before that Paisley was refusing to move all summer.  Flat out refused. Was told she had to be moving. Shown the huge example of her very own family getting healthier by moving.

Yesterday's doctor visit was time to face the music.

She has lost 8 lbs of MUSCLE.  She's barely walking. She is swollen and actively inflamed in multiple joints.

Her (lack of) action over the summer made the injections done in late May null and void because she should have been moving the joints injected to get the maximum benefit of those injections:(

It was quite painful to hear what all her stubbornness has caused. The doctor and her nurse were very kind but also very frank with Paisley. Told her she is going to have pain. She's not going to ever be totally healed. And no one knows why she has this issue of arthritis but she DOES have it.

And she's got to take care of her own health as best she can to preserve her ability to walk. Thank God for school because it's helped with forcing her walk and gain back a slight amount of mobility. 

It becomes even more difficult when you add in the attachment/ emotional issues and the fact that we will see her turn 18 in a few weeks but is functioning at a much lower mentality.  Creates all kinds of issues because she's expected to be responsible for her own health decisions/ needs when she is 18. YIKES.

She was asked if she was willing to go inpatient because her doctor wants to inject her joints, start a new med infusion ( that she can only get once 18 years old due to insurance approval) and then make her do physical therapy in a rehab type setting to get maximum benefit for her.

She did agree. And they want to work on some of the emotional baggage she's got from being in chronic pain. Depression is very clearly a factor for her. The problem has been ongoing as to getting her any help because she refuses to talk about anything. And there has to be some willingness on her part to want to work on any of her issues.

We've walked this road of stubborn/ emotional growth stunted/ attachment difficulties before (sigh) and aren't surprised to see this.
 We live with the difficulties daily and continue on with her care and loving her through God's grace.

It's sometimes the road we must walk with an older adopted child. It does not mean she's a "bad person" or that she's not a blessing. She most certainly is a very special and treasured part of this family and is given unconditional love :) 

We  want what is best for her and would love to see her get more mobile to be able to enjoy something we got to do this past weekend. UPRISE 2015.

At Shippensburg PA, multiple Christian bands over 2 days (stayed at my brother's) while grandma stayed here with the ones who didn't go. (THANKS  again, grandma) We had a blast.

It was hot, yes, but to see 15,000 people in the first day  (last year was 10,000 the whole 2 day event) worshiping God  through a favorite venue of everyone in our family ----MUSIC, was AMAZING.

It was really special. And Paisley loves music so it would be so much fun for her to be able to go to a gathering such as Uprise.  Hopefully it can be an incentive for her and we can see that happen next year.

Always we will pray for and we WILL have HOPE for the best for our precious girl:)

Will you please add her to your prayers as well for her health, mind and body and her upcoming treatment plan? 

5 comments:

mom2three said...

It is so hard to see kids in pain, and even worse when there are things that they could have done to help make it better. Praying that Paisley hears and will act on what she needs to do.

Sherri said...

Sweet Paisley. She has been through a lot in her life. You tell her if Zeke was here, he would call her and give her a pep talk...so pretty sure he is cheering her on from heaven! You've done hard things before, Paisley. You can do this too...move just a little more each day.

mom2three said...
This comment has been removed by the author.
mom2three said...

I think "paying the piper" comes from that fairy tale about the piper that got rid of the rats in England, and then when they refused to pay him what had been agreed upon, he piped and took away all their children.

Heather said...

So I have t been reading blogs lately. You know how busy we all get, but I happened to read your blog post today. I too am an adoptive momma. I have had rheumatoid since I was 17 and am now 41. It really does take a lot of time to pass after diagnosis and a new outlook of what "normal" has become as pain isn't considered normal. For me, it took 10 years to really grasp that my life of daily pain was ok and I would be ok. That's hard though when the RA isn't managed well. I don't know how I could help, but I'm happy to help in any way I can. It does get better. Sounds awful, but once joints start getting replaced over the years, you're not dealing with so many swollen joints. I hope they get her rhuematoid under control soon. Hate to hear that she is so uncomfortable. Please tell her I'm thinking of her and here to talk if she'd like.