|
|
Prayers for Liam
Last post Fri, Nov 28 2008, 10:29 AM by wvmist. 448 replies.
-
 Tue, Mar 18 2008, 3:58 PM |
-
|
Tue, Mar 18 2008, 4:25 PM |
-
|
Tue, Mar 18 2008, 4:41 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,698
-
-
|
Bet, Kate is already a GBS fan - I took her to a show before she got pregnant. SO I am sure there may be one in his future. 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
|
|
-
|
Tue, Mar 18 2008, 6:15 PM |
-
Binny
-
-
-
Joined on 12-17-2005
-
Idaho
-
Posts 1,535
-
-
|
Yay what progress!! I am so happy for all of you :)
There's a difference between interest and commitment. When you're interested in doing something, you do it only when it's convenient. When you're committed to something, you accept no excuses; only results.”
|
|
-
|
Sat, Mar 22 2008, 2:04 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,698
-
-
|
March 22, 2008 at 08:21 AM EDT
Good Morning!
Sorry I haven't updated in awhile. So this week was a little crazy...I started not feeling like myself on Monday night. I don't now if I had a cold or a sinusitis from my NG being in too long. Anyway, had to have my NG tube taken out and Mommy put a new one in the right nostril...I actually felt better right away. But I still had a runny nose and sneezing for a few days...and when I'd first fall asleep I'd cough like crazy! I had to have an "emergency" trach change on Wednesday...because of all the extra secretions my trach got a little plugged up...I was fine though.
Thursday I had my Synagis shot (to keep the RSV away)...and then my OT came to see me. She said I need some work (obviously) with eating but at least I don't mind putting food in my mouth, I just need to learn how to move it around and swallow it.
Thursday and Friday I experienced my first March Madness...I got to watch basketball games with Daddy and Mommy. And yesterday I saw some friends I haven't seen in awhile 
Well, even though I'm not one yet...this is my 2nd Easter. It was in April last year...there's a pic on the carepage of me in my yellow Easter hat...I was so little then. This is the first year I can dye Easter eggs....I can't go to Mass though because our church doesn't have a "cry room", and it would just be a little much to sit with everyone else.
So, it's officially Spring...and Easter is tomorrow, both symbolize hope and renewal. This season brings a whole new meaning for me than last year. I'm experiencing new things everyday...good, happy things because I am now at HOME where I belong.
So, I wanted to wish you all a very Happy and Blessed Easter...and here's to wishing you Hope for this year. Many prayers to all of you, my Carepage Community, for your continued support, love and prayers for me. I also thank you for your prayers for others...and ask for you to continue to pray for Great Grandpop.
Thank you! Happy EAster
Love,
Liam
Then -  And now - 
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
|
|
-
|
Tue, Mar 25 2008, 5:54 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,698
-
-
|
A chocolate bunny bites the dust. 
March 24, 2008 at 10:03 AM EDT Good Morning!
Hope everyone had a great Easter! Mine started out a little rough...had to have a trach change again because of the extra/thicker secretions from my cold...it wasn't too much of a problem though...Daddy and Mommy took care of it.
The rest of the day was great! I had lots of visitors...Gram and Pop McGuire, Pop and Grandma Linda and Uncle Tim, Grandmom Mags, Aunt Bridget, Uncle Bernie, Uncle Jack, Aunt Serena and....I met Grandmom's doggie, Max!!! I had so much fun!!...(I didn't get to see some of my family, but I'm sure I'll be seeing them this week!)
We took lots of pictures, too many to put on the site...but they're on my picture site (www.dropshots.com/liampatrickmcguire)
I also got to eat my first chocolate bunny! Yummm!
Well, hope you all enjoyed your day as much as I did :)
Happy Monday! I get to spend the week with Mommy AND Daddy!
Thank you for your prayers...
Love,
Liam and another! March 25, 2008 at 11:55 AM EDT Good morning!
So, I had my first outing yesterday...I went to Maggie O'Neill's (Uncle Jack's bar)! It was my cousin Alyssa's birthday party, so I saw Alyssa, Dante, Pop and Grandma Linda, Grandmom Mags, Uncle Jack, Aunt Serena, Aunt MAre, Uncle Scott and Aunt Jen. I had a good time...I even clapped for everyone :)
I was very tired by the time I got home though. Maybe next time I'll go out a little earlier.
I just plan on relaxing today, because I will be entertaining tomorrow for my FIRST BIRTHDAY!!! Can you believe it's tomorrow? On this day last year, Mommy was opening gifts for me!!
Thank you for your prayers...and please say a few for Great Grandpop and for my Gram too.
Love,
Liam
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
|
|
-
|
Tue, Mar 25 2008, 6:01 PM |
-
|
Wed, Mar 26 2008, 6:31 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,698
-
-
|
 March 26, 2008 at 10:29 AM EDT GOOD MORNING!! So, can you believe a year ago today...Mommy was teaching at Blankenburg (Daddy at Springer). Mommy wasn't feeling like herself, so she called the doctor...Sue (our NP from Fetal Surgery) said, "You should come down to the hospital"...Mommy said, "right now??" Sue said, "Yes, but get yourself together and don't drive 95 miles an hour to get here". So, Mommy left Blankenburg, only able to stop in Dr Spink's office to tell her she had to go (wasn't even able to say Good-Bye to her lunch buddies!). As she was driving she said to me..."Give me a little kick to let me know you're ok."...and I did. She then called Grandmom Mags. Then stopped crying long enough to leave Daddy a message on his voice mail (she didn't want to scare him). She valeted her car at HUP, and had to wait in a couple different rooms before they brought her in and hooked her up to the machines...my heartrate was fine, and she wasn't contracting. So, she finally talked to Daddy (he skipped his baseball game to come to HUP) and he was on his way. So, they checked Mommy out and she was fully dilated...I wanted out!! Dr Wilson came in right as Daddy got there and said, "Well, 32 weeks is a good benchmark...we could give you meds and put you on bedrest, but since the baby isn't stressed (which is what they didn't want)I think we'll deliver." Daddy said, "Today??!?" Dr Wilson said, "Within the hour." Mommy cried harder (she had been crying the whole time she said because she was scared)...Daddy was in shock! Grandmom Mags and Daddy made some phone calls for us. They then whisked Daddy away to get him ready for the surgery, and lots of doctors came in to talk to Mommy and had her sign lots of stuff. Then, they brought us into the OR and shortly after, at 4:25pm...I was born! Daddy took lots of pictures...they heard me cry. They took me into a little room, to prepare me for my trip to CHOP. Daddy and the grandparents and aunts and uncles got to see me within 2 hours, but Mommy couldn't come until 1:30 in the morning! What a day...What a year! Thank you all so very much...you've seen us through the good and the bad. We Love you all and appreciate all the messages, thoughts, love and prayers, and gifts and food and EVERYTHING!!! THANK YOU!! Love, Liam (& Kate & Brian) We, of course, are thinking of all of our CHOP friends today as you helped all of us through an eventful 10months of Liam's life...we haven't forgotten about you!! We have an appt tomorrow at 2:30...we'll be stopping in to see you!! HAPPY BIRTHDAY LIAM!!!!  
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
|
|
-
|
Wed, Mar 26 2008, 9:54 PM |
-
|
Thu, Mar 27 2008, 3:15 AM |
-
|
Thu, Mar 27 2008, 5:21 AM |
-
maurgarita
-
-
-
Joined on 09-06-2005
-
Kingston
-
Posts 1,575
-
-
|
I can't believe it was a year ago. What a long way this special little boy has come. I hope you had a wonderful birthday Liam!!!
be safe, eb
|
|
-
|
Fri, Mar 28 2008, 9:11 AM |
-
leprrkan
-
-
-
Joined on 02-02-2008
-
An island in the stream...
-
Posts 56
-
-
|
H a p p y B i r t h d a y K i d d o! ! ! your pictures always make me smile. Cheers 
"In this beautiful life there's always some sorrow... It's a double-edged knife but there's always tomorrow... It's up to you now if you sink or swim... Just keep the faith that your ship will come in..." Wanna be my friend? C'mon over: www.myspace.com/leprrkan
|
|
-
|
Fri, Mar 28 2008, 6:04 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,698
-
-
|
March 28, 2008 at 04:24 PM EDT Hey Everyone,
Just wanted to let you know how my day at CHOP went.
Well, we left our house around 1:15...got to CHOP, parked the car, got my stroller packed with me and all my equipment and headed to the NICU to visit our friends. It was a nice visit..I was flirting with my girlfriends...smiling, showing them how I can sit up by myself and even "fake coughing" for some extra attention. I was having so much fun there, that we were a little late for my appointment with Dr Flake. But that was ok, because when we got there, they said we were right on time (CHOP time, that is...we were 15min late). So, I saw Dr Flake and he thinks I look great! Said my belly looks good, and it feels nice and soft which apparently is a good thing. My liver is not taking up the whole omphalocele, which I guess is good when it comes time to repair. He said he only needs to see me every 6 months, and is figuring on a time frame of 1 -2 years until I can be repaired (I know, I'm not broken, so "repair" is a funny term, but that's what they use). Dr Flake also taught Mommy a new way to wrap my belly so that we put a little pressure on the omphalocele...and as I grow my body will start to accomodate my organs. It was a good visit, but we forgot the camera...Mommy wanted to take a pic of me and Dr Flake so you could all see what he looks like...next time.
We also saw Dr Panitch. He is thrilled with how I look! He said I'm really gaining weight and developing well...that's the goal...GROW GROW GROW...before we can start weaning my settings. As long as I'm growing, it means my lungs are getting bigger and stronger. He actually went up on the sensitivity, which is sort of like a wean. I was on the highest sensitivity of 1 and now I'm a 3 when sleeping, and a 2 when awake. Sensitivity means how sensitive the vent has to be to recognize when I'm taking a breath so that it can support me. Because I'm getting stronger, I don't need as high a sensitivity anymore. Oh, I now weigh 21lbs, 4oz!
As we were getting in the car, my NG tube slid out! So, when we got home (at 6:30...long day)...Mommy had to put in a new one. Then I had a bath to help me relax and went to bed at 8:15...I slept soundly as you can imagine.
While we were visiting with Dr PAnitch, we asked them to write a letter of medical necessity to our insurance company to provide speech therapy. This is great for me because the county only provides physical and occupational therapy for kids under 3. Now I'll be getting speech too.
On a side note...we received a "Stop notice" on Monday that we were getting dropped from Medicaid!! Daddy had to go to Darby to the county office to find out what was going on...apparently we received it in error. They are dropping us from the one program but enrolling us in another called the Waiver Program...this actually is more comprehensive and helps fund my therapies. Wheewwww...that was a relief!! (Thanks, Scott for checking on things for us).
This morning I had PT, and I've progressed each time she's seen me. I can reach farther to pick up toys and am starting to be able to move myself in a half circle (I learned this in the tub). And Guess what? I rolled myself over again today!!!
Wow, long update.
Have a great weekend...enjoy the games.
Please continue to pray for GreatGrandpop and Gram (and me too)!
Love,
Liam
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
|
|
-
|
Fri, Mar 28 2008, 6:45 PM |
-
Binny
-
-
-
Joined on 12-17-2005
-
Idaho
-
Posts 1,535
-
-
|
HAPPY BIRTHDAY LIAM!!! We are all so proud of you!!
There's a difference between interest and commitment. When you're interested in doing something, you do it only when it's convenient. When you're committed to something, you accept no excuses; only results.”
|
|
-
|
Fri, Mar 28 2008, 8:18 PM |
|