|
|
Prayers for Liam
Last post 15 hours, 23 minutes ago by AnneInPhilly. 444 replies.
-
 Sun, Apr 27 2008, 5:20 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
Have fun on the recuperation side, Jo. Glad to hear it was only a cyst. Wait till you see THSI video!!!! Liam "reading" And here's the latest update: April 27, 2008 at 02:57 PM EDT Hi Everyone,
We didn't go to Penn Relays...Mommy and Daddy said it was just a little too much of an undertaking this year. They usually take the train down, and we couldn't do that with the big stroller and everything else we need. Hopefully next year I'll be able to go.
I went to Maggie O'Neill's again instead...I really like it there. Uncle Jack gave me a straw to play with and I was as happy as can be! Pop and Uncle Tom were there too. Then we went to Alyssa's softball game for a couple innings.
Yesterday we tried to get to another t-ball game but were too late...we'll get there on time one of these days.
I am really using my feet alot lately!! I like to kick the ball when someone rolls it to me...I can also use my feet to flip the ball up to my hands!! Yeah, yeah, everyone says I'm going to be a soccer player...who knows?
I am now reading to myself...Mommy attached a little video.
And one more thing...I am down to 1/4 L of oxygen...almost off!
Well, hope you enjoyed your weekend :) Please continue your prayers for my family and friends.
Thank you :)
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
|
|
-
|
Wed, Apr 30 2008, 9:30 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
April 30, 2008 at 06:28 PM EDT Hi Everyone,
I had my 12month check-up at the pediatrician's today (a month late!). I was really not happy about going...I cried from the minute they put me on the scale until we walked out of the little room to leave. But some good news...with my current weight, 22lbs 10oz, I am in the 40th percentile!!!! And that's my real age, not the adjusted age for being preemie! I am dangling on the bottom of the height chart(3rd percentile) at 28.3inches...but I have grown a whole lot since last check-up. Dr Browngoehl was very pleased. He was also asking Mommy and Daddy what sorts of things I can do, and he said it sounds like, developmentally, I am right on track...he was very excited to hear all the things I can do. A bad note...I had to get 3 shots today...immunizations...uggghh. But the nurses were so fast, Mommy and Daddy couldn't believe it!!! They were very impressed...we're going to request them again for our next appointment.
Some fun stuff...now, the next time I ride in the car, I'll be facing forward! That should be very interesting!! That means I'll be able to see Daddy when he talks to me :)
Also, I've started to "quack"...and I think I said "duck"...I tried anyway, and it sounded pretty close to duck, I think.
Oh, and I almost forgot...Speech is going ot come out tomorrow to evalute me!! This is VERY good news! I think tomorrow will be my last session with my current OT. I'm going to give her one more try, but if I still don't like her in the first 15minutes, Mommy said she would ask her to go, and we'll find another.
Tomorrow, we're going to wean my oxygen to 1/8L...that's really hardly anything at all!
Well, have a good rest of the week and great weekend!
Please continue to pray for GreatGrandpop, and my NICU friends (especially Baby Sean, and the Campbell Twins). Also, a friend asked us to pray for her cousin, a little girl named Justine Applegate who recently was admitted to CHOP for a lung disease.
Thank you for your generosity when it comes to prayers~ you are the BEST!
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
|
|
-
|
Wed, Apr 30 2008, 10:36 PM |
-
|
Fri, May 02 2008, 1:37 AM |
-
|
Wed, May 07 2008, 9:20 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
New photo and update today.  May 07, 2008 at 08:23 AM EDT Good Morning! First of all, I wanted to say Happy Nurses Week!!! Thank you to all of our nurses...We love you, you're the BEST!! Ok, so I'll be at CHOP tomorrow for my ENT appointment at 9am. (We're planning a visit to the NICU before my appointment). This will be the first CHOP appointment that Daddy won't be with us :( My nurse Kim will be coming instead. I have a very long appointment on Tuesday, and because Daddy is a very good teacher, he needs to make sure his students won't be missing too much...their state tests are coming up!!! So, I understand...I'm glad he'll be at the ALL day appointment Tuesday. I have been off oxygen a couple of times, and it hasn't bothered me at all!! We've just been trying me off of it for little bits at a time...so far so good! I think Friday we'll try for the whole day. So, I had my first session with Speech...actually it was still part of the "consult" but she was very happy with what she saw, and she said she will be able to help me. She had lots of good ideas about how to help me eat. This made Mommy and Daddy so happy to have her with us...they could tell she really knew what she was talking about...and she is so nice!! I checked her out for awhile but by the time she was leaving I was smiling at her and clapping. Thank you for your continued prayers for me and everyone I've asked for...we all appreciate it :) 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
|
|
-
|
Sun, May 11 2008, 5:00 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
May 11, 2008 at 10:27 AM EDT Good Morning!
I told Liam this morning, I loved him extra-specially today…because he’s the reason I’m able to celebrate this holiday. I’ve never felt more pride in my life as I do today. I love that I am now “Liam’s Mom”, instead of Kate. He has given me a strength that can never weaken. I’ve grown so much since our baby was diagnosed with having an omphalocele. This time last year, Liam had already undergone 8 surgeries…before he was even due! Last Mother’s Day was a very emotional time…but this year is too, for many different reasons. I’ve watched my son hurdle countless obstacles that were thrown in his path…his strength, determination and spirit are an amazing thing to witness. And Brian and I have the honor to call him “our son”. I think we have all been truly blessed with this little miracle…me, especially, because I was chosen to be his mom…what a day for me!!!
Just wanted to say Happy Mother’s Day to all the Moms & Grandmoms, Godmothers & Aunts, those who are yet to be moms, and those whose children have passed, and of course, to our NICU nurses, RTs,& NPs...may you all have a happy and blessed day!!!
As for us, we are celebrating with brunch at our favorite place, Maggie O’Neills.
Love you all,
Kate 
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, May 13 2008, 9:10 PM |
-
BombMom
-
-
-
Joined on 05-31-2005
-
Alaska, USA
-
Posts 1,088
-
-
|
Wow, what a great testimonial!! Liam, you are one lucky little man - give Mommy an extra hug and kiss from all of us here!! And such an awesome picture - those smiles just tell the story, don't they?! I love it!!!
 Jo
|
|
-
|
Tue, May 13 2008, 10:33 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
May 13, 2008 at 07:07 PM EDT Hi Everyone,
Very long day today...we left our house at 7:45am and didn't get home til almost 3! Opthamology held us hostage for almost 2.5 hours! And I didn't like it one bit!! They put drops in my eyes, then kept shining a light in my eyes...it was terrible. I am far-sighted and have astigmatisms in both eyes...my eyes may look like Mommy's but I certainly have Daddy's eyesight. They said I have to try a patch (like a pirate, arrggghh), to strengthen my left eye because sometimes it drifts in a little when I'm focusing really hard on something. I have to go back in September...if it hasn't improved I'll have to get glasses :(
We were supposed to see Dr Hedrick (surgeon) at 9:30 and Dr Panitch (lungs) at 10, but since we were at the eye docs for so long they got moved back...we then headed to Audiology for our 10:45 appt at 10:55...at 11:05 Dr Panitch's nurse called us and said they wanted to see us. So, I got out of the ear appointment and we headed upstairs. Oh, while we were waiting for the ear appt we saw our speech therapist from the NICU, she said I look great :) We also ran into our NPs from Fetal Surgery Sue, and Jane, and our Social Worker from the NICU, Marty...they were so happy to see me (even though I was crying), and couldn't believe I am over a year old already!!
Dr Panitch was very happy with me...said I look AND sound great! No changes on the vent which is a little disappointing but he just wants to make sure I'm growing and developing...maybe by the end of the summer we'll start to wean. He did give me a new med...zyrtec, for my allergies. And my chest size grew which is really great! This time, Dr Panitch got to see me laughing (at my Nemo ball, of course).
Dr Hedrick just wanted to see my belly which she said looks fine...she also took pictures of me and my belly, because we are trying to come up with new ways to wrap it. She's going to show my pics at a conference and ask for some ideas :)
I also met with my nutrionist Robin. Since I'm over a year, she's switching me from Nutramigen and starting me on Peptamen Junior...it's for big kids. We're going to go nice and slow since I had all those issues with different formulas in the NICU. We're going to mix 1/4 Peptamen with 3/4 Nutramigen for 3-4 days, then half and half, then 3/4 Peptamen with 1/4 Nutramigen...we'll see how it goes...hopefully no issues!!!
I had lost weight since 2 weeks ago, so after I've switched over to all Peptamen, we're going to go up on volume. I get 150ml, 7 times a day (skip 3am feed) now...we're eventually going up to 160ml 7 times a day, then gradually getting rid of the 12am feed as well, so I'll be on a more normal feeding schedule for someone my age. I had gained about 5.5lbs since leaving the hospital, and they hadn't changed my volume or calories in all that time...so I was bound to start losing some weight eventually. So, it wasn't too surprising.
Ok, so that was ALOT!!! I have to go back in 2 weeks for my developmental evaluation (no time today)...I'll also be seeing Audiology then and maybe cardiology too. Oh, and the bloodwork I had done last week came back great!
Enjoy your week! Thanks for thinking of me today. Just want to Welcome, my new friend, Megan Shannon to the World :) She was born Mother's Day! And pray for a safe and healthy delivery of Baby Buckton tomorrow...and please pray for my usuals too!!
Thank you!!
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
|
|
-
|
Wed, May 14 2008, 10:00 AM |
-
|
Thu, May 15 2008, 11:03 PM |
-
leprrkan
-
-
-
Joined on 02-02-2008
-
An island in the stream...
-
Posts 56
-
-
|
Hey Liam! No worries about the eye patch little man, girls dig pirates  Thanks for the updates Anne, it was on of the reason I stopped by tonight... to see how he's doing.
"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, May 16 2008, 4:48 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
May 16, 2008 at 07:47 AM EDT Good Morning!
Well, despite the weather, it is a great morning!! I woke up to see Liam’s smiling face at 5:45am…what a pleasure! Brian and I try our hardest to live in the present and appreciate every little thing… but since last night, my mind keeps wandering back to May 16, 2007…my eyes get teary, my stomach knots up and I get a lump in my throat. May 16, 2007 was Liam’s due date, the anniversary of the canonization of St Gianna, and the attempted “final” closure of Liam’s omphalocele. And quite easily, the scariest day of our lives.
It was also a day where we all could see, first-hand, that with tremendous faith and the power of prayer, miracles do happen. We’re not sure why things happened the way they did…but I have learned that God works in mysterious ways. I often told myself that day and the long days following, that maybe something was wrong with Liam’s blood and that’s why he bled the way he did, so that he could be refreshed. Also, maybe Liam’s little lungs could not withstand the pressure being put on them if his omphalocele was all the way in. I like to think these things because I know God has a plan…and yes, it was an accident, in that it was not the fault of anyone in that room. God knew what he was doing. And because of our great faith in Him he brought us all safely through that night and the nights to follow. He guided the hands of Dr Flake and his nurses and surgeons to ensure that Liam would be safe. Thank you God, Thank you St Gianna, Thank you family and friends who were there with us through that time and continue to be, and thank you Carepage community for your prayers, love and support.
Much Love,
Kate & Brian
Ok, so that’s enough of that…
I’ve been doing well. Mommy & Daddy have tried to put the patch on me a few times…I haven’t even had it on long enough for them to get a picture…tore that thing right off!! They said they will keep trying. I had my first “official” session with my speech therapist, Maria, last night. She thinks I’m showing great improvement in just one week!! We really like her and are so happy she’s joined our therapy team!!
I’ve been tolerating my new feeds so far…so that’s good news :)
Oh yeah, and by the way…I’m off oxygen! I’m on “room air” as they say. So, to clear up any confusion…yes, I am still on the ventilator. My lungs still need the extra support…but I am off oxygen which is a sign that my lungs are getting stronger. I may have to go back on every once in awhile, but for the most part I’ve been handling it very well.
Also, I’m starting to pull myself up in my crib by holding onto the rail! I haven’t totally gotten to standing yet, but I’m really close. Last night my feet kept slipping through the rails. I like to throw things over the side and pull myself to the rail to look at what’s on the floor. I especially like to throw my wedge over (this keeps my head elevated to help with reflux). It’s so much fun!!
Ok, so I think that’s about it…I’d like to say also that it’s the 1year anniversary of meeting Nurse Lake, and my nemesis, her lime-green scrubs!!! Keep them packed away!!! Welcome to the World Daniel Francis Buckton!
Please continue to pray for Great Grandpop, Uncle Henry, & Bill, my NICU friends, especially Baby Sean (he really needs lots of prayers), and all those graduating from college to start their “grown-up” lives (Regina, Megan & Sara).
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
|
|
-
|
Sat, May 17 2008, 9:43 PM |
-
BombMom
-
-
-
Joined on 05-31-2005
-
Alaska, USA
-
Posts 1,088
-
-
|
Yay!! Woohoo!! Room air!! Now there's cause for celebration - way to go Liam!! And all the reports you got from your last appointments sound great - well, I guess farsightedness, astigmatism, and the "lazy" eye thing aren't great, but hey, if anything had to NOT be great, I would guess that would be the one to choose. Of course, I figure as hard as this little guy has to work for every inch he gains, he deserves to have a little "laziness", right???? ( <---------- Jo Dufushead) We're keeping all of you and your "usuals" in our prayers today, but the graduates you mention are especially close in our hearts today. We attended graduation for our kids' very small Catholic school - they graduated 10, and it's the second-largest senior class they've ever had. My son is a junior, and all the underclassmen form the choir for the graduation Mass every year. The whole time, my husband and I were saying to each other "We're practicing for next year!" Nice to see a little light at the end of that tunnel! This week will be very fast and furious as we prepare to leave for our trip to England/Ireland on Thursday night. I'll try to check in for a quick hello between now and then, but there's alot to do, so I don't know if I'll be able to or not...In case I can't, please know that you'll be in our prayers while we're gone, and I'll be checking in on you first chance I get after I get home (or who knows, maybe from the Emerald Isle!).
Jo
|
|
-
|
Thu, May 22 2008, 2:19 PM |
-
|
Thu, May 22 2008, 10:59 PM |
-
|
Mon, May 26 2008, 1:24 AM |
|