Monday, January 13, 2014


I think about this blog often. I wish I posted as much as I thought about it.

To catch up- London went in for a sleep study to check for apnea and other things. I was SURE that it would show us something. Something that we could treat. The study was hard on her... trying to sleep in an unfamiliar environment while hooked up to to about a billion wires and machines along with having a cannula in her nose just isn't her thing. But we got through it and I guess she slept enough that night for them to get the information they needed. I waited patiently for the results... And when I read the letter from the doctor, I was completely disheartened.

The test was basically normal. Her blood is oxygenating normally, she doesn't have any sort of significant apnea, and she's reaching REM cycles fine. The only thing that was noted that I could check into was an elevated amount of leg movement (restless leg syndrome) that could be due to low iron levels. What?? That's it? I felt like an idiot. I was sure that since she was waking up so often through the nights and sounding to congested that there would be talk of something that we could do for her.

But on the other hand, I sort of knew deep down that all of this was simply a matter of her condition. Her extremely low muscle tone makes it difficult for her to do many things- hold her own head up, clear her throat, eat orally, clear her esophagus completely when she swallows... and now, apparently, breathe normally. It's not that she can't breathe, she's getting plenty of oxygen to her blood, and we're not at a point where we need to be too alarmed. I should be grateful. But I wanted something fixable.

 Her breathing is better than it had been, but she still often sounds extremely stuffy and congested. It's likely that this will always be the norm.

I had a good long talk with her neurologist and gastroenterologist about her condition and the struggles she is having lately and about what to possibly expect for her future... it was the hardest, most real, conversation we've had, but I left feeling better about the certain decisions my husband and I had made about London's future, and I felt that I had complete support from her doctors. They were both very understanding (they both know firsthand many of the things I'm going through as a special needs mom), and they took time to explain things to me and answer all my questions. They were behind me 100%, and it gave me a little bit of confidence that was missing. I really needed that!

Our future, London's future, isn't certain. Nobody can tell me what exactly to expect, because they just don't know. But having an open dialogue with her doctors and our family has been really good for me. My stress level was through the roof because I was holding so much inside... I felt like coming out and saying it would make it real. Well, guess what- it was already real... now I feel like I can at least prepare for whatever her future might be.

I have also been mentally preparing myself for London's Wish. Holy cow, what an experience that is going to be! We got to take London to the Wishing Room where she declared her Wish (to go to DisneyWorld and to swim with dolphins) and after getting approval to travel from London's doctor, we're all set to go! The travel coordinator has been in contact with me about travel dates and it's looking like in March we'll be headed to sunny Florida!

I'm so nervous I could barf.

I'm scared that I didn't make the right choice for her wish. I'm nervous about traveling with her. I'm worried that there won't be rides she can go on (even though I've been reassured countless times by those who have gone before us that there will be plenty for her to participate in)... I'm trying so hard to just sit back, relax, and enjoy this amazing gift that has been given to her and to our family, but I won't lie- it's difficult to keep the anxiety at bay about it all. What if she hates the plane? What if the weather doesn't agree with her seizures? What if she gets sick while we're there? What if, what it, what it????

(If you haven't noticed by now, I'm THE BIGGEST worrier in the world!)

But overall, things are good. We're lucky! We're blessed! We had a good holiday season (even though we all go the flu, then when things were looking better, I got hit with it again HARD. I swear I've been sick for months!) and I'm glad to see the start of a new year.

2014 is going to be an adventure! I've made a lot of goals for this year and I'm looking forward to making them a reality.

Thanks for reading! More SOON!! (if I post that, maybe I'll make it happen... I've got so much I'd love to write about!)


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