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To catch up, part one and part two.
Thank you, everyone, for your words of comfort and support. They really mean a lot to me.
It seems that since my freakin' fire 2 years ago, I've been hit with a barrage of crap that just has no end. It sucks, and it is affecting me. To know that you all are out there helps ease the crappityness of it. So thank you.
We met with the surgeon, and apparently this is a congenital defect (because everyone needs more of that dontchaknow), and it's extremely rare. Like less than 1% of the population has this thing kickin'. And of course, it would happen to us. Anyway, as it stands now, we have to wait for the infection to clear up, and surgery for excision of urachal cyst is scheduled for May 19th. I have not told Jaysen yet, and don't plan on doing so until maybe the week of. When I tell him, he's going to flip. But he'll pull through, just like he did at the hospital. I am amazed at how far he has come. How tough he has gotten. He is now taking 3 pills 2 of which are full sized antibiotics. That is huge for my sensory defensive kid. Huge.
On a side note, I was at the Metro Parent Living With Autism seminar yesterday. It was pretty cool. You could just feel the love in some of those presentations. It really warmed my heart. I also met some cool people- Melissa Hunt-Sampey and I connected on Twitter, then she magically stopped following me later that day. Was it me? I don't know, probably. I met and had lunch with Staci Bockmann from My Great Kid, and I really enjoyed and found motivation in hearing how her son has blossomed in theater. And reconnected with behavior consultant Aubry Dodge, whom I absolutely luuuuurve. She is awesome. I've blogged about her here, but used the pseudonym "Audrey", 'cuz I'm ultra creative like that. Aside from the vendor who told me I must not like Jenny McCarthy because I'm jealous of her money and fame (yes, really), it was a good time.
So, that's the update.
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8 comments:
Ugh. I completely get the "how did we go from antibiotics to surgery" thing, although fortunately it's happening to me and not to my kid! Went to Urgent Care thinking I had pneumonia, next thing I know I'm off to see the pulmonologist who tells me I have a rare congenital defect that will require surgery and next month I'm getting half a lung removed. Lovely. Big hugs.
Yay for Jaysen with the med thing. That is huge! Good luck with the surgery. Hopefully things will start inproving. Am sorry there have been so many challenges over the past 2 years.
As for the surgery, I can emphasize with any anxiety you and Jaysen might feel. My guy will probably have one in the future sometime too, having just one kidney at stage 2 kidney disease...a transplant might be in our future.
Sigh.
Glad you felt some love at the conference despite the Jenny McCarthy thing...Ugh. NOt a big fan of her either.
extrodinary things only happen to extrodinary people.
Is love still better late than never?
Surgery. Ugh. (I had to look up that cyst.) On the positive side, he seems better prepared than he has ever been - and how can you not be prepared with the fab last 2 years?
datri - oh.no! Keeping you in mind with good thoughts!
Hope you both have restful and healing 2 weeks before cut-time.
Barbara
I'm so sorry to hear about this. We should talk. so much to say. S.J.M.
Next time, you should set up a booth next to that vendor selling some of my now-infamous "Jenny McCarthy Raises My Blood Pressure" merchandise.
Ain't life a fudge?
Sending you hugs. Pray that all goes well.
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