Ups and Downs

Today was a gorgeous day to go to the park.  As most of you can imagine, its a little difficult for Abby to play at the park.  Its a little difficult for me to respond to other little girls asking her to play.  Today, however, the sweetest little girl wanted her to play.  I told her that Abby would love to play, but that I would like to join them.  The little girl, Olivia, seemed okay with that idea.  We went on to play hide-and-seek, ring around the rosie, and racing down the slides.  I was Abby's hands and legs most of the time, of course.  She had a blast.  She knows that a playground is often just therapy, but today she had fun....laughing out loud fun.  This was the first time that another kid had been so "normal" with Abby.  She held her hand, talked to her, and laughed with her.  It would have been the perfect trip if I could stop the story now.  

As I get ready to get the girls on the swings, I hear Olivia's father calling her over.  I can't hardly believe what he told her.  He reprimanded her for playing with Abby.  "There's something wrong with her.  Can't you see she't not like the other kids?"  He was actually aggravated that his daughter picked Abby to play with, a child who clearly was not a suitable playmate.  I just couldn't believe it.  Despite her fathers comments, Olivia returned to the swing set, only to be yelled at again.  Unbelievable.  I don't think Abby heard any of this, as she was completely distracted by the other kids playing. Wes definitely did not hear it, which is also a good thing, as he would most likely be behind bars right now.  

I wish I could say that I confronted the man.  But I didn't.  I may have, but the lump in my throat prevented it.  It was a good thing I wore sunglasses because I was a mess.  It was just such a shock that someone would be mad that their child was playing with Abby.  And he said there was something WRONG with her!  Who says that?  I still just can't hardly believe it.  I wish I had said something.  I don't know what it would have been, though, in front of Abby.  Maybe I'm naive, but I have never thought that any parent that would not want their kid to play with her.

I'm starting to think of a few things that I could have said to him now..... 

Under the weather

Unfortunately, Abby and Logan both have the flu.  Wes has shingles, so when they got a fever I assumed they both were getting chickenpox.  I was surprised when they tested positive for the flu.  I think we caught it early, as the only symptoms they are having are fevers and tiredness.  They are looking pretty pitiful, though.  Logan is too tired to tell Abby to stop patting his head and Abby is happy to be relaxing at home. Logan has actually used Abby as a pillow when they are watching cartoons, which she thinks is hilarious.  Hopefully, the flu will pass in a few days.  Until then, we will keep watching cartoons all day in our pajamas....which isn't a terrible way to spend the day.    

Control

I would define Abby's good days as days when she has the most control of her body.  They are not the days when she smiles or laughs the most, or days when she breaths well and moves well.  They are days when she does all these things on purpose.

Its difficult for someone not familiar with Abby to distinguish between a smile and a grimace, a "funny" laugh and a hysteric laugh.  We saw the first laugh that was not really a laugh with Abby when she was about two.  We gave her a medication for allergies that made her act crazy.  It made her laugh uncontrollably.  It was funny for a few minutes, then Wes and I realized that she wasn't having fun.  It wasn't a "funny" laugh, it was a "what the heck is going on and why can't I stop laughing" laugh.  She had a laugh like this last night, for nearly an hour.  It was funny at first, and then we went in her room and could see she wasn't in control.  Abby cried in therapy today when she had to use her stomach muscles.  She laughed so much last night her tummy is sore. Crazy.

I hate it when she's not in control of herself.

Losing control for Abby could mean that she can't swallow, bear weight, breath regularly, maintain eye contact, or do just about anything else.  Some of it is probably related to anxiety, but all of it is related in one way or another to Rett.  Isn't is always? There are times when Abby is so in control.  I ask her a question and she promptly uses her eye gaze to answer.  It's so wonderful.  At these times she can eat, walk, and communicate better. Other times, when I give her choices, I can tell she isn't able to maintain her gaze on the symbol.  She has too much going on with her breathing and grinding and patting and who knows what else.  She can't stand, let alone walk.

Its frustrating for me, not knowing what to expect from her from one minute to the next.  I can't imagine how frustrating it must be for her.

Have I said today that we really need a treatment or CURE for this?

So the last time I posted about seizures I was very frustrated about how long it was taking for Abby to respond to the increase in her seizure medicine.  Well, it took nearly 10 days, but they seem to be back under control.  In hindsight, that makes sense, but when she has a rough day of seizure activity, I get frazzled and very impatient. I'm trying to relax and enjoy the good news.  She doesn't have scoliosis and she isn't having seizures (right now).  And on top of it, she was really "with it" today with her motor planning.  We walked up the stairs, and she raised her leg about 10 times.  She didn't just do it one stair climb, but every time we went up the steps!  She also did awesome bearing weight on her arms tonight.  She stayed on all 4's for several seconds before attempting to sit.  Wow.  There's more.  When we went outside, she walked around our big circle holding my hand.  Sometimes she doesn't have the endurance to finish, but not today.  I know it takes a lot of work for Abby, and I can tell that she is happy with herself when she gets her body to do what she wants it to do.  So proud of that little girl!

No Scoliosis!

Abby went to the orthopaedist today to have an x-ray of her spine.  Doesn't it look great? For now, that is one thing that we don't have to mess with.  What a relief!

We are going to have to continue strengthening and stretching to help prevent any curve from developing.  She does lean to one side, which could become a structural problem rather than a postural problem, but for now, there's no scoliosis.  Yay!  

I should have known better than to assume that anything with Rett Syndrome would go the way that I expected.  We dropped Abby's Keppra a little to see if she could tolerate a lower dose.  She could not.  I figured that we would increase it to the original dose, and they would go back under control.  Seems reasonable, right?  Not so much.  She is having weird episodes several times a day and it has been a week on her original dose.  She stares into space for a moment and is non-responsive.  Then, her lips turn blue, she gets jittery and spastic, and then falls asleep for about an hour.  Weird.  I know that if I call the doctor, he will want to either have us admitted for a 24 hr EEG or increase her Keppra.  That was exactly the OPPOSITE thing that I wanted to happen when we tried to lower her meds.  Rett Syndrome is the exception to every rule and it's driving me crazy.  Its an unsolvable puzzle. The more I try to help, the worse things get.  How is that even possible? 

We took advantage of the unusually warm February weather today and went to the park.  Abby really enjoyed getting outside for a while.  It seems like we have been stuck inside all winter.  I'm afraid these last few days are just a tease, but I am SO ready for spring.  

Abby is still having the occasional seizure, but they are not frequent and she recovers very quickly.  When she had them last year, it was weeks before she gained her strength back.  It is such a relief that these are not having such an impact on her afterwards.  Maybe because these have not involved convulsions?  She sleeps for about an hour, and then is back to herself.  I think they will subside once her regular dose gets in her system.