until I return from NEW YORK!!! (Yay!)
It's been a REALLY hectic week - as I'm sure those of you with experience of Pain Insensitivity can imagine - because of all the things that can and do go wrong! But somehow we made it, and the trip is here with me being relatively ready for it!
I'm a bit anxious about the whole airport/flight thing, more due to "the unknowns" with Alyssa, but once tomorrow is over and I've experienced it, I'll know what to expect on future trips. The flight is just short of 8 hours so she'll definitely sleep for some of that, but we'll see how well she copes stress-wise. Have spent so long thinking about the trip being TOMORROW ... that I didn't actually focus on the fact that we're seeing Dr Axelrod on MONDAY! :-D Then the Sensory Integration specialist Melissa Kahn on Tuesday. It seems a bit surreal, that it's not actuallly this week!
Am doubly excited about this trip! Not only am I meeting arguably the worlds' most informed expert on the HSANs (Hereditary Sensory Autonomic Neuropathies) and a specialised Occupational Therapist (OT), but I'm also meeting up with some of my "HG sisters" as we call each other. These amazing women helped me through my absolutely awful pregnancy with Alyssa, and are now some of my best friends ... whom I've never met! Some of them are still battling Hyperemesis Gravidarum (HG) - see website mentioned above for details - but are still making the journey to New York, to meet Alyssa and I. It's just unbelievable, and amazing!
Alyssa's gut pain has been pretty bad this week unfortunately, but she seems to be settling down again to HER normal ... so here's hoping Dr Axelrod and team can come up with some answers. The anaesthetist did contact me through the week after receiving my latest e-mail, and advised on some procedures/medications that they are currently thinking of, and keen to know the opinion of these - as well as any other suggestions - from the States.
The current theory regarding Alyssa's gut pain is that - for whatever reason that is not yet understood - she is oversensitive to her colon contracting, prior and during defaecation. And that because she does not feel the usual "bumps and scrapes" that other children learn to distinguish between as they grow, she has nothing whatsoever to compare it to. This makes it excruciating for her.
This is certainly a workable theory, but still does not explain why she is oversensitive to colonic contraction but gives me a new area to pick Dr Axelrods' brain about! Like she doesn't have enough to deal with, in seeing Alyssa! ;-)
Ok, off to bed for early start (and the hundredth check that I've packed everything!), will post again once home and can update with what we've hopefully learned. Not expecting to have a diagnosis while we're there, but the testing Alyssa's having done will hopefully narrow down the possibilities some and make it a more likely possibility that we'll have answers in the near future. If I can find a way to help her deal with her heat/cold aversions, then I'll be happy ... for now! :-)
Welcome to Alyssa's blog ...
- Alyssa's Mum
- My name is Moira, and I hope to share with you what my daughter's life has been like so far ... so you can all truly understand and appreciate the gift of pain, which we take very much for granted! Alyssa does not feel "peripheral" pain, which means she does not feel pain anywhere other than internally. This has led to many unintentional injuries and self-mutilation. My aim is to not only find others like Alyssa, and help those who may be going through what we are, as well as raising awareness about this condition, and how feeling pain is actually a GOOD thing! I am thankfully now part of a support group run on FB which is an amazing group of people, who all have varying types of experience with pain insensitivity. I can be contacted directly via understandingalyssa@hotmail.co.uk
5 comments:
Know that you are being fervently prayed for.... because honestly, God will not lift you off of my mind!
I can't wait to read your next post that let's us know the details of your trip.
May God bless you and your Alyssa in the mightiest of ways!
I've been thinking about you all day long. I've been praying for you! Praying for your daughter! Praying for the doctors that are hopefully helping her!
I have been constantly, constantly, constantly praying for you and your girl. I so hope your trip was more than you were even hoping for. I soo hope that you are coming home today very hopeful! There's a verse in Proverbs 13:12 that says, "Hope deferred makes the heart sick, but a longing fulfilled is a tree of life." There is no worse feeling than a feeling of no hope! Therefore, I am praying that God is returning you from our states with a hope-filled heart, and that these doctors here were able to do some things and to suggest some things to help you.
May you have a peaceful flight. No doubt, you'll be exhausted when you get home. Rest well, you two. Meanwhile, I'll continue praying and asking God to cover and to help you.
Thank you for thinking of us! It did make me laugh that I had 3 messages from you though, when I still hadn't even managed to post a reply or update!
I only had limited internet access in the states, so kept that for viewing much-needed e-mails and updating folks via FB etc, to cut down on texting and calling.
HaHa. Hilarious! Sorry... it's just that you were so on my mind! And I kept praying for you the whole time you were journeying. :) I couldn't help, at times, to stop a minute to tell you.
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