Monday, October 12, 2009

Leah's 8 months old!!!

Saturday was Leahs 8 month birthday!!!!!!

And I actually got a chance to get out of the house with Jeff while Leah's grandparents watched her.  I don't think we had gone out together since sometime in early August & I hadn't been out of the house period since Monday.  Generally once a week on Mondays when Jeff has off, I get my chance to escape for a bit but it's only to go food shopping, or swing by Target for baby stuff.  It's not like it's for fun or anything - so on Saturday we decided to go to the Renaissance Festival here in MD.  This was probably Jeff's 10th or so year, while I've only been there maybe 3 times.  It's the same thing every year, but it's still fun to see everything there.  Jeff goes for the beer and games and I go to see Elizabethan costumes.  Seriously, that's pretty much why I go: I wrote a 30-some page paper on the symbolism and pageantry found within portraits of Queen Elizabeth I for my art history independent study course in college - so yeah, I can be entertained by seeing someone wearing a farthingale.
Plus, Hilby was there again!  I discovered Hilby on my first visit to the Renn Fest.  I suddenly heard someone with a German accent getting massive laughs from a crowd so I had to check it out.  (German does not typically = funny).  He describes himself as the skinny german juggle boy.   He's pretty darn entertaining -here's his website. 

And here is Jeff at his favorite game there, trying to Drench the Wench:

But anyway, we spent maybe 2 1/2 hours there - which is pretty good considering it was my first time away from Leah for a long time and I had several mini panic attacks worrying about her.

Speaking of the little lady, here are some pics of Leah I just took:

Sorry for the darkness but I did take them at about 5:30 AM and she's trying to sleep.  But it does hide how bad her forehead looks right now.  It's slowly getting better with almost constant application of Aquaphor, but even so.   I don't know why her skin is getting worse right now - the change in seasons, her growth spurt that comes along with added strength so when she moves she's really moving - or just her EB getting worse.  Of course I don't want to think it's her EB worsening because then I have to think: "what's going on internally if I can see all this happening externally?"  And it just really bothers me that her face is red and blistered.  For so long her face was totally 100% free and clear of any signs of EB.  Then we had the issue with her cheek, which continues to be a problem because that skin moves so much with smiling, drinking, crying - and now it's her forehead, and a spot on her nose, and a few on her right cheek, and a line on her chin  that rubs her trach ...... ugh. 

Oh and I'm awake so early because Ann took the night off because it was her birthday yesterday!  Her kids wanted to really do something special for her because this was the first year in a long time that they were all together -- so of course we are happy to see her have a night off so she can enjoy her day and not spend it sleeping.  So Jeff and I just did our sleeping in shifts thing -- I woke up at 5 and he went off to sleep until noon or so -- which isn't bad at all for just 1 night. 

Oh and also: I've been meaning to ask in a blog here ..... since there are a couple of fundraisers being planned right now for Leah, what kind of items would people be interested in purchasing?  Aside from the fundraisers themselves, I could make the items available all the time for folks to pick up to help spread the word on EB and help our little lady.  But what do people really want: big magnets (like Jonah has that can fit on cars), smaller magnets for fridges and file cabinets, keychains, pens, all of the above?  The site I plan on using has all of those things.  So yeah, mull it over and hit me back with either a comment or an email - though all the comments go to my email anyway since I moderate them ... but you get the idea.  Ok, enough rambling!


Anonymous said...

So glad you guys got some time to yourselves. Sounds like a fun time! Hope you can enjoy doing that more often. Concerning the fund raisers, I would really like a big magnet that says WE LOVE LEAH...Help cure EB. DEBRA.ORG to put on our cars. I have the ones that say WE (heart) Jonah and then I write underneath & Leah. I've gotten a few people ask what is EB and I direct them to the web site to help explain. It's a good way to get the word out. Pens are also good. Maybe even a butterfly pin to wear that says help cure EB & a web site or something like that. These are all things I would buy. Just let us know... Love you guys, Aunt Penny

Linda said...

Hi Meg:
I agree with Aunt Penny. A magnet just like the Jonah magnet and the butterfly pin was something I was thinking about too. There are so many things that I know people would be willing to buy. We will have to get our heads together and come up with some great ideas.
I am sorry that her face is so red right now, but she is still the cutest baby in the whole wide world. Give her kiss from Nana. Love you guys!!!!!!!!!!XOXOXOXO

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