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Prayers for Liam
Last post 19 hours, 15 minutes ago by Robin4Song. 443 replies.
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 Fri, Aug 01 2008, 4:31 PM |
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AnneInPhilly
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Joined on 11-26-2003
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Philadelphia, PA USA
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Posts 3,659
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August 01, 2008 at 02:58 PM EDT Hi Everyone!
Just had to update to tell you all...I went on my first vacation!! We went to Pop & Grandma Linda's house in Ocean City. It was the longest I'd been in the car, it was the first time at the shore, and the first time sleeping away from home. But I did a good job...I smiled almost the entire time :)
Also...I went to the beach on Wednesday!! It was a little hazy so I couldn't open my eyes too good, but I think I liked it. I didn't like it when Mommy bent down to let me feel the water and wet sand...maybe another time. Besides seeing Pop & Grandma Linda, Pop & Gram McGuire stopped by, and several of my Aunts, Uncles and cousins. Yesterday, I played in the baby pool for an hour! Pop even walked to the beach a brought me some ocean water to play in. I really liked the pool.
I was going to go to the boardwalk but I got sort of tired last night, so Mommy & Daddy figured it probably wasn't a good idea. So, instead, I rode in my wagon and we went to the ice cream shop! I really like my new wagon...and I loved being down the shore!!
Thanks Pop & Grandma!!
Oh and I can pull myself to stand at the couch pretty good now, and am starting to crawl forward!
Have a great weekend!!
Love,
Liam  First trip to the beach atOcean City New Jersey Quacking back at the duck. Anne
And when the winds of change begin to blow, I'll whisper, "You're my lighthouse" in case you didn't know. Sons of Maxwell visit my website!: Anne's Philly Phan Site at http://www.gbsfanatic.com
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Sun, Aug 03 2008, 4:04 PM |
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BombMom
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Joined on 05-31-2005
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Alaska, USA
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Posts 1,088
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Hi Liam, I just got home from Virginia Friday night and now I'm updated on your progress - wow! You're doing great! For some reason, I can't see the pictures you're posting now though - don't know what's changed, but if anyone can help me to figure out how to get the pictures back, please let me know!! Keep improving, little man!! You continue in my prayers also!
 Jo
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Sun, Aug 03 2008, 9:28 PM |
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AnneInPhilly
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Joined on 11-26-2003
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Philadelphia, PA USA
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Posts 3,659
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Jo they changed the website and moved or renamed the photos. I went back and redid them. You should be able to see them now. Welcome home, we missed you. Anne
And when the winds of change begin to blow, I'll whisper, "You're my lighthouse" in case you didn't know. Sons of Maxwell visit my website!: Anne's Philly Phan Site at http://www.gbsfanatic.com
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Mon, Aug 04 2008, 12:54 AM |
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Tue, Aug 05 2008, 10:38 AM |
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Tue, Aug 05 2008, 11:42 AM |
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AnneInPhilly
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Joined on 11-26-2003
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Philadelphia, PA USA
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Posts 3,659
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I hope you uys don't mind. I am not going to go back and fix the URLs for all the other photos. But here's a new update with great news and another photo of Liam in his new wagon at the beach. Good Morning! Hope you all had a great weekend! We're not happy about the new look of the "Carepages" but I guess we'll have to get used to it. Hopefully they can fix ours because you can't see anything on the right side of the page, but on all of my friends' pages you can!! I guess they are still working out the kinks. Anyway, wanted to tell you about my day Saturday...we went to South Philly for Sean's SnackStand...it was a bakesale snackstand to raise money for CHOP in memory of my friend Baby Sean who grew his angel wings in June. It was a big success!! Next time they have one I will tell you all about it so you can go too! We spent a lot of time with Sean's Mommy...she's really great!! I had a really good time! And for a great cause! Next, I have some news... I had an appointment at CHOP today. First of all...I didn't cry until I got weighed...big step!! I was happy, no major melt-down...I didn't need any extra oxygen!! I gained weight, by the way...I'm now 25lbs 7oz. But that's not even the best part of my appointment. We thought that Dr Panitch would start weaning my ventilator settings today. He decided not to do that...instead, he said to start taking me off of the ventilator completely for 15minutes twice a day!! This is called "sprinting off the vent". We were so surprised!! We didn't think that would happen for another few months!! But we are cautiously excited, because that's what happens when you are in the hospital for so long. You are careful not to get TOO excited over stuff. We have to make sure I'm still "satting" well (that's the oxygen saturation in blood), and that I'm not breathing too fast, or too freaked out by it. But, all in all, this is a VERY positive step in the right direction. Thank you for your continued prayers. Love Liam 
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And when the winds of change begin to blow, I'll whisper, "You're my lighthouse" in case you didn't know. Sons of Maxwell visit my website!: Anne's Philly Phan Site at http://www.gbsfanatic.com
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Wed, Aug 06 2008, 1:02 AM |
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Wed, Aug 13 2008, 9:33 AM |
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AnneInPhilly
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Joined on 11-26-2003
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Philadelphia, PA USA
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Posts 3,659
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An update AND a video! Slow & Steady Posted 14 minutes ago Good Morning!
Hope all is well with all of you. Have you been watching the Olympics?? They've been so exciting!!
I've been doing a pretty good job with the sprinting...some days I do better than others. We have to check in with Pulmonary every Monday...they said all of my numbers(sats, ETCO2, HR, RR) are perfect, but we'll just stay at the 15minutes twice a day for a little while until I'm really comfortable with it. That's ok by us! They ordered the new Passy Muir valve for me, so that should be coming today...we'll see how that goes.
So, now I'm signing "eat" and "milk" (at the appropriate times without Mommy or Daddy doing it first!) And also "off" when the tv or fan is shut off.
I've been getting outside because the weather has been so nice!! We went for a walk in my wagon the other day...love that wagon!! Mommy & me are trying to get in as much time with Daddy as we can...he starts back to school next week :(
Here's a little video of me crawling, dancing, and cruising! Here's the video
And when the winds of change begin to blow, I'll whisper, "You're my lighthouse" in case you didn't know. Sons of Maxwell visit my website!: Anne's Philly Phan Site at http://www.gbsfanatic.com
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Wed, Aug 13 2008, 11:08 AM |
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Wed, Aug 13 2008, 4:56 PM |
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Wed, Aug 20 2008, 1:36 PM |
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AnneInPhilly
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Joined on 11-26-2003
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Philadelphia, PA USA
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Posts 3,659
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Another update today! New Baby Posted August 18,2008 Good Morning,
So, the new baby is here!! A baby girl, Ryan Addison, 8lbs 4oz. Both Ryan and Aunt Bridget doing well...Uncle Dan's doing pretty good too :)
I can't wait to meet her! I love babies! I went for a walk in my wagon with Mommy outside the hospital while Daddy visited, then Mommy went in and Daddy and me walked. We ran into Dr Sehdev. He was the Dr that Mommy and Daddy saw when I was just a tiny little fetus. He was the one who comfirmed that I had a giant omphalocele and after a few visits with him, he sent us to CHOP. So, Mommy and Daddy were really excited to see him...and he was pretty overwelmed when he saw me!
So, I won't get to meet Baby Ryan until she comes home from the hospital...but when I do, we'll be sure to post some pictures!! Oh and Aunt Bridget's doctor was Mommy's doctor too before she transferred her care to CHOP. So, he asked for a picture of both of us together. Do you think I'll be able to hold her?? Haha!! That would be funny! I think I'll just sit next to her and stare.
Thanks for all the prayers for Ryan's safe delivery, and for all the well-wishes for me to get better :)
Love,
Liam
And if could you please continue to pray for Mr Palma, Mrs Burgess and Mommy's friend Emily's Uncle, we'd appreciate it!!
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And when the winds of change begin to blow, I'll whisper, "You're my lighthouse" in case you didn't know. Sons of Maxwell visit my website!: Anne's Philly Phan Site at http://www.gbsfanatic.com
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Wed, Aug 27 2008, 3:51 PM |
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AnneInPhilly
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Joined on 11-26-2003
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Philadelphia, PA USA
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Posts 3,659
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Better Days Posted 6 hours ago Hi, everyone. I just wanted to let you all know that I had a little setback the other day. Unfortunately, I am back in the hospital. I was admitted at CHOP on Sunday. It appears that I have a bacterial infection called "c-diff." It is an infection of the gut and intestines. I have been put on antibiotics and have started to feel a little better each day. I literally cried the entire day on Sunday and my belly grew to about twice its normal size. Yesterday, however, I started to feel a bit more like myself. I even signed that I wanted to hear some music and talked to Mommy and Daddy for awhile. Hopefully I will not be here very long, but I know they are going to keep me until my bowel starts moving again. Anyway, I need to keep this one short. They are going to draw up some more labs on me soon. I will keep you all posted. If you could pray for my belly I would really appreciate it. Talk to you soon.
Love,
Liam Liam and baby Ryan: 
jQuery(document).ready(function(){
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And when the winds of change begin to blow, I'll whisper, "You're my lighthouse" in case you didn't know. Sons of Maxwell visit my website!: Anne's Philly Phan Site at http://www.gbsfanatic.com
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Wed, Aug 27 2008, 4:29 PM |
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Thu, Aug 28 2008, 5:19 AM |
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maurgarita
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Joined on 09-06-2005
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Kingston
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Posts 1,571
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Prayers from Kingston too. What a strong family. Such an inspiration to us all.
be safe, eb
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