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Welcome to "A New Chapter for Aly", the third installment of "Alycia's Journey" and "Alycia's Journey Continues".
A bit of background ... Alycia was born in 1999 with a GI condition known as chronic intestinal pseudo obstruction. When she was four, and as we were waiting for her small bowel transplant, we created "Alycia's Journey". On November 11, 2004 she received a small bowel transplant, her "gift of life", at Georgetown University Hospital. In early 2006, she experienced some serious obstacles in her health, and while forever changed, she made it through and continued to take on whatever life threw her way!!
In summer 2009, we were finally faced with chronic rejection and Aly's first transplant was removed. The last two years have been challenging for all of us, but Aly stayed strong and started 6th grade, Middle School, this fall.
"Alycia's Journey", "Alycia's Journey Continues" and our new chapter would not be possible without the dedication of the medical team at Georgetown or the generosity & strength of two very special families who have given us hope. Collin, continue to smile down upon Aly and welcome your new friend with a big hug from us.
We love you Aly, and we think you are quite magnificent!!
Please remember to scroll down and sign Alycia's guestbook...it means a tremendous amount to know that you have taken the time to check in on her.
Journal
Saturday, January 14, 2012 10:14 AM CST Happy, happy New Year to all of our friends and those checking Aly's website!! Aly is continuing to recover and get stronger, both physically and emotionally. I can't remember where I left off in my overdue journaling, so I'll try to recap from winter break forward ...
Our family started winter break by bidding farewell to the redhead, Emily. Now a HS freshman, she headed off to USY International Convention for a week. Wow ... what a week it was. Emily and 999 other jewish kids. She came back psyched, engaged, talking about friends, programs about tolerance, community service, and not compaining about services three times a day for the week!
While Em was away, we got a special visit from Aunt Jane, my best friend from college who came down from NY. Aly was treated to lots of fun stuff and Aunt Jane got to come to Aly's weekly ileoscopy!! Aly's scopes have been great; no signs of rejection, good signs of good function. For the last month, her scopes have been once weekly and she's about to graduate to once every two weeks. Great progress, miraculous progress ...
Aly's still getting formula into her g-tube (stomach feeds) for some calories and hydration, but she's also doing a lot on her own. She's getting about 1100 calories and 1600 cc's of fluid (about 6 1/2 cups) from the g-tube and about 700 calories and 6 cups hydration on her own. She has to drink an enormous amount of water to keep her kidneys protected from the immunosuppressant, and she's really been a trooper about doing so. At each weekly clinic visit, if her weight is steady (which it has been) and her hydration is ok (which it has been), then her g-tube calories and hydration are reduced so that she can try to make up the difference on her own. The reward for her is her "freedom", more time off of the pump. At this point, she's on the pump overnight and gets a couple of boluses, or blasts, during the day for an hour each. It is great to have her more mobile and for me not to be shlepping pumps everywhere we go.
We still have to schlep her medications, but they're not quite as heavy! Aly gets approximately 15 different medications at 8 different times during the day, for a total of about 70 pills a day. It's quite a chore to keep it all organized, but thank god Michael has taken charge of that. While I may complain that he rarely keeps anything organized or in the right place in the house, he's really risen to the occasion and I am very thankful that he's the pill counter in the house!
I got off the winter break topic .... the four Levys, and GG the cat, spent the end of 2011 and welcome 2012 at the beach, Ocean City, MD. Emily slept alot ... Michael, Aly and I played alot of Monopoly ... we visited with friends and family and we all got good rest.
Emily re-started school and Aly re-started with her home teacher provided by Montgomery County. They've been working together since mid-December and Aly is beginning to catch up with her school work. It's a lot of work for her, she's out of her element and without help from her vision teacher. There's a significant amount of homework and continued teaching when the teacher's not here, plus Aly's 6th grade science expo project, so I (and Michael) have had to step into the role of teacher. Not easy with all the other things we both have going on and not easy to be the "meanie". So, I recently hired a tutor to work with Aly a couple of hours per week to take some of the stress off of me and to help restore my relationship with Aly.
We've got a busy weekend ... lots of social stuff for the girls, so Michael and I will be busy driving them around! Specifically, Aly's arranged for a few of her friends, some from elementary and a new one from middle school to come over, so that she can start reconnecting. Really important for her to do that and it's been hard for me to wait for her to finally take this step. I am so relieved that she has done so and I hope that being with them will keep aid in her emotional recovery, for that in turn will reinforce her desire to work with her teacher, do her homework and be ready to go back to school in the coming month or so.
Will hopefully update about great playdates and more ...
Love to you all ~
Stef
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