Need to Vent

[apack1999]

I'm tired and need to vent for a moment. I know there are others out there that feel this way sometimes so I'll just let it out...

I feel at total peace about my daughter and whatever issues she may have. However, I'm starting to think that this myopathy possibility is barking up the wrong tree. I think there's a reason why it's come up but something doesn't feel right with it. Maybe I'm just praying that it doesn't come out to some kind of MD. My heart and head keep leaning toward OTC or OTF. However, I have to wait to find out.

Our EMG/Nerve Conduction Study is next week. Did anyone else have this done to help them get diagnosed? I was terrified about how the test would be for KK but my hubby showed me a video of how it's done and I feel much better now. I get to go to this test with my mom to help out. I already have difficulties getting along with my mom at times but I know I need help with KK and she adores my mother, and vice versa. So I'm just praying that this will tell us what we need to know. I honestly don't want to keep going to test after test after test. I know if this one doesn't show anything the genetics one should tell us completely.

Now the big thing: what happens if I go through all this trouble feeling like something's not right with my daughter and then it all comes back that she's perfectly fine? Am I dreaming all of this up? I'm just so ready to throw in the towel right now. Maybe nothing really is wrong with her and I just have an over-active imagination. Then again, why would they keep referring me to more specialists if she didn't have anything....

Thanks for letting me vent. I hope everyone else is doing okay out there. I guess I just need to get some sleep to feel better. ;)

Have a great one!

[Nettie]

I hear you, I too desperately needs a good night's rest. But I simply cannot switch off, so even the sleep I get is interrupted and fretful. Sigh.

And ya, as always, I understand perfectly how you feel. Even now like I said, I have the occult tethered cord diagnosis, I'm still worried and wondering about my daughter's "other" issues. But I'm thinking that I'm going to leave sleeping dogs lie for a while and see how my daughter do in grade 2 before stressing too much about anything else. Though, we already have an appointment for a neurologist in February, so I may still keep that and just ask her opinion again on all the little issues. Especially on my nagging suspicion that we may be dealing with Allgrove's syndrome.

If you feel strongly that everything just isn't perfect with your daughter, don't drop it. Don't throw the towel in. I've felt exactly like you do. So many, many times. But somehow I stood up again everytime I was down, and continued the search, the fight. And it was so worth it. Maybe we're "fortunate" in that our daughter had the obvious incontinence. It's not something either me nor the doctors could just ignore. Though, if I had a dollar for every time people (also specialists!) told me she'll "outgrow" it....

So hang in there. It's NOT an easy road, fighting for your daughter. But it's so worth it. And if, after ALL the tests are done, ALL the appointments are done, and you STILL don't have an answer, then you accept the fact that you got a special little girl who has something that they simply cannot pinpoint (yet). But never doubt yourself. You have 2 other children. It's not like you're a novice parent that wants to have this genius of a child and now think there's something wrong simply because she's not a genius. You know what is the normal. The average. And if you think KK isn't doing as well as an average little girl her age should've done, then you need to find the reasons.

Just keep being strong for your little girl through all the tests. And don't ever think that you're doing any of this because you want something to be wrong wih your daughter. None of us enjoy taking our children to all these tests.

That sonar of your daughter still bothers me. That wasn't "nothing". Futher investigation is needed. You need to take this futher, to help your daughter.

I hope you had a good night's rest. It's not easy, I know. I haven't slept well since we embarked on this road with my daughter 14 months ago.

[apack1999]

I finally slept last night only to have horrible dreams! Doesn't that just beat all? It's a holiday here today so we were all allowed to sleep in. My hubby's a teacher and nobody had school, therefore, nice relaxing day. However, I woke up at 7 AM because of the dream. I fell back asleep off and on. I was about to get up when I heard my son begging his daddy to make me breakfast in bed. So I stayed there and again fell back asleep. Apparently C made a point to check and make sure I was still sleeping before my husband was finished with breakfast. They brought in waffles with blackberries, syrup and whipped cream to me. Then the oldest brought my apple juice and KK brought in the napkin. It was so sweet! All just because. :)

Anyway, it made my day better even with the constant dream in my head. It was just so odd. Thanks for the encouragement though! I really did need some today. ;)

[sean]

Excuse me wonderful Mums, when you've been through the mill with test after test after test...........and nothing!, remind yourselves of all you can rule out by having the tests.
It's all valuable information.

Sending you comfy cozy zzzzzzzzzzzzzzzzzzzzzmmmmmm sleep.

[apack1999]

:goodpost:

:3a: I really appreciate the happy zzzzz's. ;)

[Nettie]

That's so true Sean! Very true. No test is a waste. And yes, thanx for the zzzmmmm...I'm sure in a few months time, after my daughter's detethering, I'll sleep like a baby again...;)

Apack, that breakfast was so sweet of your family! And sounds sooooo yummy! There's nothing like an "I love mommy"-gesture like that! It's just THE best.