Excitement is building..

All 3 kids are getting so excited for Halloween.  As I'm typing this Jason and Dylan are at the martial arts Halloween Party....Dylan was beside himself with excitement about going all day.  I think part of it was the "halloween" part of things but he hasn't been to martial arts since August because of his leg so I think he was really excited to see his friends too!!

The girls and I stayed home tonight and had a "girls night!"  Kira picked Dominos for dinner and since Eva couldn't have that she wanted a "heart" dinner........translation, Mommy cuts all her food to look like hearts! :-)  Then we painted fingers and toes yellow and orange "like candy corn" for Halloween....and now we are watching the new Tinkerbell movie although both girls are fading fast.

Kira's had a cold......it's her 2nd one since school started but this is the first once that required up to get the nebulizer out and call for medications.  I thought she was feeling better but today she's been a little droopy again so I'm not sure what to make of that!

On Thursday Dylan has another follow-up with Dr. N and I'm hoping that it will be our last appointment for a year as far as his leg/hip go.  Hopefully he'll give us the "okay" and our next appointment with him won't be for a year.  I know that Dylan would love to get our for recess and participate in PE class at school.

Hope that everyone is having a great weekend!

Normal....

Is a word that I really should be used to hearing by now when it comes to Kira, right?

Well, I heard it again and again, it brought tears to my eyes and has just thrown me "off" a bit today. (It's probably good I had a crazy busy day of appointments that meant driving back and forth across town...I was too busy to "think" too much.)

Kira's EMG test from Friday was normal.  

There is no chance at all that she has any type of congenital myasthenia.

The nurse was so happy to be calling with such "great news."  And yes, in many ways, it is wonderful news.  I know that in my head.  My heart....well, my heart feels something very different.  Not tears because she DOESN'T have a myasthenia of any kind but tears because we just don't know.

EIGHT YEARS.  For eight years we have been looking for answers....looking for what is so very clearly a needle in the haystack to explain Kira's low muscle tone and muscle fatigue.  EIGHT YEARS.

As of right now, there is nothing left to test for....which I can assure you, would make Kira really happy to know.  But for me....it's frustrating. Very, very frustrating and honestly, scary at times.

The nurse did make me laugh a little after I hung up...she said to continue to watch for new signs of symptoms.  Um, okay?  Exactly WHAT should we be watching for???

Serious lack of communication

It's taken me a few days to write this post because I've been more than a little ticked off about the chain of events that took place on Friday when Kira went for her EMG.

If you know Kira, I don't need to tell you that she was NOT happy when she figured out she needed to go to hospital for another test....not happy at all.  We managed to make it through the evening before and the morning off okay...tears, yes but we managed.

When we got there, our nurse was very understanding and told Kira that she could hang out in the waiting room while I went back to talk with her.  Kira was happy about that.  We went through her medical history and decided that I would talk to the NP before we went any further with Kira.  She came in and we talked IN DETAIL about what medications would be needed.  She was going to be given an oral medication and another through the gas mask....twilight sedation was what the neuro had ordered.  

She got her dose of oral meds in the waiting room and once we knew it had "hit" we took her back to her room.  She did well and even willingly got on the bed.  From there, things just went downhill.  They we giving her the meds with the gas mask and she was fighting it some but it was also clear that it was working.  After about 20 minutes, the EMG dr, who had been IN THE ROOM the whole time, said this isn't going to work and this is what I need.  So we agreed to try ketamine...nasally.  AFTER we did that is when he said that he really needed her to just have Propofol...which, I might add requires an IV that we had already told her she wouldn't need.

Somewhere around this point, I had to step out of the room because I was losing it quickly.  Our nurse and the NP both felt TERRIBLE since the orders they have received said NOTHING about all of this....and the EMG dr had signed off on them as well.  He is the same dr who did Kira's EMG when she was much, much younger and I really didn't like him that time either.

When I went back in the room, Kira was beyond hysterical and I pretty much said, "Just do it....and get it done."  I was not very polite about it at that point either.  If we 1) didn't need this test done and 2) weren't so far into the procedure already when the chaos really started, I would have said forget it and walked out the door with her.  Kira was screaming at me that I lied to her when she figured out that she needed an IV...I was fighting tears and Jason was none to happy either.

Fortunately, Propofol works pretty quickly and they were able to get the test done.  Kira slept for a bit once they stopped the meds and woke up ready for something to drink.

So now we are in the waiting period again....waiting to hear from the neuro about the test!  Hopefully soon!

Tomorrow it's Kira's turn.....

To go here....

And I don't think that I have to even say how unhappy she will be.  I don't think that UNHAPPY is even a strong enough word.

Tomorrow Kira will be having an EMG done.  She will have "twilight" sedation.  We have to be at the hospital by 9:30 AM and her test is scheduled for 11:00 AM.  They are testing specifically for Congenital Myasthenic Syndrome with this test.  IF the EMG shows that she does have CMS, then I believe there would be some further blood work to determine which type she has.  Our doctors at Mayo Clinic recommended rechecking for this (she was testing 4 years ago) and our local neurologist agreed that it was a good idea.  All the doctors have stressed that this really is the last thing they can test for her.  She has had every other metabolic, mito, neuromuscular test known to man at this point done.  I would be lying if I said that didn't fill me with a little anxiety.  But we have gotten our "hopes up" so many times over the last 8 1/2 years that I'm also very much expecting them to say that everything is "normal".......again.  

Jason and I always struggle with WHEN to tell Kira about tests and such.  She doesn't know yet that she's having this done tomorrow.  If we had told her in advance, she would be obsessing about it non-stop, not sleeping well and likely having a terrible time at school.  But now, here we are, the day before and she has no clue.  We won't tell her until tomorrow morning....actually as soon as she figures out she can't eat in the morning, all bets will be off. If we told her tonight, she would be a mess, wouldn't sleep well and would likely be up several times throughout the night.   I feels "mean" to wait until the last minute to tell her but it also feels "mean" to tell her in advance and let her worry about it non-stop.  It's going to be a rough morning and I have to just hope that we can get Dylan out the door to school without him being upset too.

I talked to the nurse today and made it clear that she was going to be upset coming in.....nothing will change that.  I also requested that we limit the number of people that come in and out of the room.  If someone doesn't NEED to see Kira, we can chat in the hall.  They have always been good with this request so hopefully tomorrow will be the same.

It's a relatively short test so hopefully everything will go smoothly and we'll be home long before Dylan gets out of school at 3:15 PM.