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on to the Mic-key party:
Well, we finally planned our first ever gathering of all our tube-fed kiddos for a play date. I belong to a tube feeding support group in San Francisco. 5 of us moms have become very close friends, leaning on each other for support, ideas and understanding.
Sadly, one of our moms, Sara, is leaving next month - Her husband has a job transfer to St. Louis (so any St. Louis readers out there, let me know!). It was hard to schedule but we finally arranged a play-date for our kiddos. We met at a park, but typical spring/summer San Francisco style, it was windy, foggy and basically freezing, so we impromptu went to one of our members house (Heidi) for the gathering.
Not an easy feat, but we captured a picture of all 5 of our kiddos: Mitch (3.5), Tyler (2), Jake 2.5), Kaitlyn (1.5) and Elizabeth (1.5):
Trying to get all 5 showing their mik-key g-tubes was even harder!
We at least got 4 on the couch at the same time, showing off their buttons. Can you just imagine the room, we were all sitting around, with syringes, food, burp cloths. What a party! :)Here we are, a group of women I admire very much. Judy (Jake's mom), me (Liz, Kaitlyn Elizabeth's mom), Elizabeth (Tyler's mom), Sarah (Elizabeth's mom) and Heidi (Mitch's mom). If you didn't catch on, Elizabeth is a common theme with our names. Thank you my good friends...you all mean the world to me..thank you for all of your support and understanding.... and we'll miss you terribly Sarah! You better keep in touch!
Kaitlyn has suddenly realized that she no longer likes her mom to leave. She's suddenly become very clingy to mom and cries when I leave her - even if I go to the other room and shut the door. Here's a few pictures to show you the tears. I have to say I'm not complaining, Kaitlyn never really has shown much bonding with me, so this brings joy to me (much to dad's disappointment). When Brian comes home from work now, Kaitlyn runs to me and begs to be picked up.
Look at the pouty face. Breaks my heart!
And of course tears (remember that the crying is quite silent with her vocal chord paralysis)
Taken on Thursday. We went out as a family to the Farmers Market which is on Thursday evenings. We stopped for a quick refreshment. Typical serious face for Kaitlyn.
Dad giving Kaitlyn some love.
Kaitlyn (looking at dad's lips not eyes which is typical) likes to imitate fish faces.
Best news of all, though, is that Kaitlyn likes to give kisses!!! When her little lips brush across mine with a kiss is the most wonderful experience I could have ever wanted in my life.
Happy Memorial day weekend. Please be sure to think of all those who have given their lives for our country, and for all the angel babies up in heaven with them.
4 comments:
I LOVE the pic of her pouty face, Liz. She looks so grown up.
We had our assessment with OT last week, but I won't get the results until mid July (she's on holidays til July 1, and I'm on holidays July 2-16 and out of town).
Hope K's assessment is faster!
awwww poor boo-boo face! that is precious!
love the t shirt hubs is wearing....i grew up in pgh. most locals can't stand the beer though. still it makes me a little homesick.
liz,
i'm a regular lurker of your blog. i don't have a tube fed kiddo (yet, we have some serious aversions and no weight gain in 3 months b/c of lack of intake so we'll see what the next step is...we've already tried feeding therapy, etc) but i do live in st louis and have two micro preemie twins who turned one year old yesterday (!). if your friend wants to know other micros in the area, please feel free to have her (or you) email me. AHHSTL@sbcglobal.net. i love your blog - thanks for giving me inspiration. ashley
Hi Liz,
I'm a newer fan of your blog (found it via BD list), and now follow it along with the many others I read.
I don't know anyone in St. Louis, but I do know a mom that lives 2-3 hours from there with two kiddos who are g-tube fed (both have the same genetic syndrome, one is 9 years & the other is 9 months). If your friend Sarah would be interested, email me and I'll forward her contact info to this mom.
Hugs,
Sarah E (for Elizabeth!) Key Storrs,
mom to Evan (22 months with CHARGE Syndrome, ex 32-weeker, 100% g-tube fed)
skeybunny@yahoo.com
www.babysites.com/sites/skeybunny
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