Endocrinology & stuff

This has been the quietest week, mostly because we scheduled it for recuperation. Emily can feel the stent in her ureter and it hurts, but I don't think it is horrible. I keep telling myself that it will be out in another week, & hopefully she will feel much better. She has been refusing pain meds, so that is a plus.  Prayers would be wonderful, specifically for the ureter to be opened enough to grab all of the stones out of her kidney this time, no reaction to anesthesia, & of course to guide the surgeon's hands. 

Biofeedback is seriously one of the best things that we have ever done for her. I think that every child with chronic pain needs to try it.  Not only is she learning techniques to help her to deflate the pain but she is also learning how to take control over it. I really wish we had done this when she was five and limping everywhere, when the anxieties were so high that she seemed to be obsessive-compulsive. This would have been so life-changing then. I will have to tell our pediatricians that. And like all of that isn't cool enough, she is giving us some common-sense nutritional advice that I would not have thought of. Instead of keeping our fruits in the produce keeper, I am now washing them & placing them in a bowl on a low shelf so that everyone can see them. As Ginny says, people are more likely to eat what is already prepared. So true!

Aquatic therapy is still a challenge for her, but last time she got through it with the help of Xanax.  We try hard not to use them, but when they are needed I am happy to give her a half of one. That is the only way she did well last week. She told us at biofeedback that she is afraid that the kids in the pool will laugh at her, & the old people will pinch her cheeks. We found a time with no kids & few older people. I know she will love it once she chills out a bit. 

The big news of the day is endocrinology.  You may recall that she was seen last month. The doctor, who was absolutely one of the sweetest people I have met, ordered a bunch of lab work to be done. We had it drawn when she went in for kidney procedure #1. She already received 6 of the 8 ordered tests. So far most of it looks great. However, she also asked for copies of her growth chart from our pediatrician. I don't think I ever realized but Emily has always been in the 2nd percentile for growth. Yes- second, and she really hasn't grown this year.  Granted, I am NOT the queen of height (4' 9.5" myself!) but I think even I was taller back when I was her age. I worry about several things: A) the theory that the body holds in more pain when the cells aren't regenerating as quickly, causing her to feel amplified pain, and B) I worry about her jaw. One of the things that I have always noticed about adults who had JA as kids, and especially those that were on prednisone for long periods is that their jaws never seem to finish growing. It's like the jaw only grows to a certain point even if the rest of the body isn't finished growing. I didn't want her to be the kid with the tiny jaw. Imagine the implications of that- not having enough room for your teeth to fit (already a reality here), the need for more medical procedures to correct it. As it stands she only has a few more good years of growing. Her bone age is delayed, but not by a tremendous amount. It may be possible to catch up now- if we hurry. 

The doctor (her name sounds like Tab-ew-wad-a) said that she feels that Emily would benefit from growth hormone. She asked me to talk it over with Emily. I took that as "give her a choice". So, we discussed it last night. Her shots will be every day but she is okay with that.  She wants to try it.   I think she is getting irritated by people always thinking she is so much younger.  When they know her age they express shock. That's probably not good. I really hope that this is the beginning of a new, happy road. We will be so thrilled if this works.  All in all, things are looking up!  Thank goodness because this has been one heck of a summer that we wouldn't care to repeat.  Would anyone like to share their stories of aquatic therapy, biofeedback or growth hormones?  Please let me know!

Stone Update

She had aquatic therapy twice this week so far.  Monday's was not so great.  She promised me that she would give it a chance, but she wouldn't cooperate at all.  On Wednesday it went well!  I cannot say for sure that she enjoyed it, but she at least cooperated.  She looked like she was having fun.  Part of the reason that she did so well, I think, was Tuesday's Biofeedback session.  What a wonderful tool!  Again she was hooked up to the little EKG probes, and again we could see her tension visibly on screen.  The cool part about that was that when she was upset about something we could see it shoot up to like 18, but once she started deep breathing and listening to her relaxation exercise it dropped down to about a 4.  As Ginny pointed out, "see, Emily?  You have the power to relax yourself.  You don't need anyone else to do it for you".  How cool is that?  We discussed aquatic therapy quite a bit that day.  I was very pleased that she did so well the next day.

Yesterday was the kidney stone procedure.  Of course, it wouldn't be our bumpy road if anything worked as intended!  The doctor called me on Tuesday as we were walking into a hospital for Emily's biofeedback to tell me that we may not proceed with the lithotripsy (shockwave of the stones).  I really had no clue what was planned, but we are pretty used to this type of thing.  Things always work out for the best whether we stress or not, so I chose not to stress.  He called me the next day to say that they had a new plan, but it would likely mean two different procedures.  He had initially said that the lithotripsy would require two procedures also, so it wasn't much different to me in that respect.  He told us that he conferred with specialists all over the world to determine the best course of action for our special girl.

They put a stent inside of her urine tube to try to make it bigger.  He told me that it was likely they would not be able to get the ureter opened up enough to grab the stones today.  Sure enough, he was right.  He said that she would have to have the stent in place for 1-2 weeks.  It should dilate the tube enough to pull them out later.  Right now she hurts but not too badly.  They gave her pain medicine, an antibiotic, a medicine to help with bladder spasm, and another med that I cannot recall right now.  The first few hours were awful!  She felt so terrible, and she was in so much pain.  Right now she seems to be her normal self.  It's probably somewhat the pain meds, but it is reassuring.

The only beautiful thing about this is that aside from my working this weekend, we have no appointments planned until 2 weeks from now.  It really just depends on when we go back for the second procedure now.  Thank you so much for your prayers and love.  We felt it, it helped me to be calm and collected.  Emily was still a bit of a mess, but still much better than most kids would likely be.  Thank you for your support.  It is very appreciated!!!

The next post will be a how-not-to-die-at-the-hospital type of post, I think.  I have spent a lot of time comparing how I was ten years ago to now.  I have learned so much, become so organized which is really weird for me.  I feel like I need to share it.  That is coming!  Stay tuned!