What a ride....

Many of you who follow our story have been wondering how Willow is doing since her last MRI scan.  She is doing exceptionally well.  She is still developmentally where she needs to be except for her speech.  Now there were things found in her MRI that I have had to process and move on from which is why an immediate update was not found.  There is a cyst on her thalamus gland, which is in the center of her brain.  Apparently this was found on one of her scans last fall, but we were not informed of this.  So when I saw it on her report this time around, I of course panicked.  Well, the doctors have assured me that currently the cyst is stable, meaning it has not grown from the last scan.  That is great news.  The eh news that goes along with this (when there is an up there is always a down), is that it is not an 'if' but a WHEN does this begin to affect her and how.  The thalamus gland apparently controls 4 of the 5 senses, so there is a great chance of her losing the use of any of them.  Also where this cyst is located, I am being told will also affect her motor control (I don't understand all the logistics of where things are at in the brain, but I am learning as we go)... So she may also lose motor functions at one point in her life.  Now these are again not if's but when they happen, but we also know that we were originally told she had no brain.  So at this point we are trying to keep things all in context and just know that we have a running, learning to jump, bouncy toddler who is so full of joy and life. :)

So that is the Willow update, on to the rest of the ride!

Jon was horribly sick last weekend with the stomach flu and now I have some odd virus running through the children which comes with high fever.  So Jonathan got it first with fever and lethargy, disorientation, light headedness, dizzy spells... So we take him in to the ped on Tuesday and no real answer. Go to ER on Wednesday and no answer from them either (they did not even draw blood)... So back to ped. on Thursday as his symptoms are still persisting  In fact I tried to send him to school yesterday and within 1/2 an hour he is calling saying now he has blurry vision!!   Back to the ped, to see a different doctor and low and behold she looks back at his record and sees this is not our first time for these symptoms.  In fact this time of year it hits him hard for the last 2 years (plus this one makes 3).  So she said she feels he has something called POTS syndrome.  So, I get home and look that up, to try to make sense of it, and at this point I still need to read more... But he has an issue with his blood flow in his body and apparently when he stands up instead of it stabilizing right away as our's does, his is like a gravity effect and leaves his brain with not much blood flow, hence the light headedness and dizzy spells!! So she sent us out to get his blood tested and we should know for sure next week, but it all seems to make sense.

My thoughts on this though, are is he able to go to school feeling like this?  It has to suck to constantly feel dizzy or light headed.  Doesn't make concentrating all that easy.  But would the school make accomodations for him if we have to instead keep him at home... There are so many things that we will need to learn and to find this out now all within the last couple of weeks with Willow's MRI, this news, family life... uggh!!

I am exhausted.  So if I seem a bit ragged lately, or just a bit 'out of it' now you all know why! My ride through life has not been smooth lately.  Thanks for all the love and support as well.

Some info on POTS if you're interested:

http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome (wiki site though I don't always like to use them as reference)

http://www.dinet.org/pots_an_overview.htm - a good, easy to understand description of what is going on

http://www.nytimes.com/2011/10/18/health/18brody.html?_r=0 - a story about another boy who has it


Comments

Amanda: said…
I know someone with POTS and she manages just fine - in fact, she's my boss :) It's definitely something that she can keep under control, so hopefully that will be the same for you guys!!

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