|
|
Prayers for Liam
Last post 15 hours, 50 minutes ago by AnneInPhilly. 444 replies.
-
 Wed, Feb 20 2008, 8:05 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
February 20, 2008 at 04:41 PM EST Hi Everyone,
So, yesterday I had a rough start to my day...I was very unhappy, not feeling well AT ALL. I had a fever and couldn't breathe too well. Mommy and my nurse gave me tylenol and motrin and also a respiratory treatment...by the time Daddy got home from work I was back to my smiling self. Not sure what it was...maybe I picked up some cooties at CHOP, or maybe I was just exhausted from Monday.
Today was much better. I had my Early Intervention evaluation this morning...the therapist said I was "wonderfully social"...I don't like to brag, but I really knocked their socks off! I did all my tricks for them...I was playing with my toys, grabbing and pulling, turning the music and lights on. Kicking when Mommy said "Kick" and Kissing when Mommy said "kiss". I gave hi-fives, and was babbling up a storm. And guess what else I did today?? I ROLLED OVER!!!!! I was on my right side, and I kept swinging my left leg until I got enough momentum (I know, big word) to get myself onto my back...I laid there for a minute, then rolled to my left!! It was so exciting, Mommy and my nurse cheered me on, then Mommy cried, and then texted Daddy.
So, as for my skills...my cognitive skills are right on target, socially/emotionally I am right on target, my language skills are that of about a 6month old which is how long I've had the trach, which makes sense...Fine motor skills are that of an 8month old,which is only a little behind...and gross motor is that of a 3-4month old, which means I have a good foundation, and lots of room for improvement!! Overall, they were so impressed!! It's nice hearing things like that from strangers. I guess when they see me on paper, they think they're really in for it!! They were here for a long time bc they said they couldn't stop playing with me to get their paperwork done.
Oh, and besides all of that...I had to get my Synagis shot today...I only cried a little...I was brave for Mommy and Daddy.
Thnak you for your prayers!! Could you say a few for my cousin Joey who's having some tests done? Thank you!!
Stay warm :0)
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, Feb 29 2008, 7:31 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
I'm a little behind, so I'll do two today, and one tomorrow. OK? 
February 25, 2008 at 07:28 AM EST Good Morning!
Can you believe that Saturday was my 1 month anniversary of being home?? And tomorrow I'm going to be 11 months?!!?!
Many thanks to all of you for praying for me...please continue...you're doing a great job!!!
Love,
Liam February 26, 2008 at 04:38 PM EST Hi Everyone :)
So, I haven't been myself lately, and Mommy was afraid I was getting an ear infection. So, we went to see the doctor. I did a good job in the car and at the office...I let the doctor look in my ears,and I hardly squirmed or cried! I even let her look in my mouth! So, no ear infection which is good. It's probably just more teeth trying to bust through. I was such a good boy, I was even smiling in the office! But then, I had to get my blood drawn because my pulmonary doctor wanted to check my electrolytes since I had stopped 2 of my meds last week. THAT WAS NOT FUN. I had gotten used to not having to get stuck, so when they stuck, I screamed and yelled and cried and kicked. I was NOT a happy camper. But, they got what they needed and I fell asleep in the car, and slept for another 2 hours after that!
Today, I was not feeling well either...it must be something about going out of the house, b/c the last time I felt THIS horrible was last Tuesday after my CHOP appointment. After a respiratory treatment, some motrin and a nap, I started to feel better. I was reading Mommy books and playing with puzzles. Now, I'm just waiting for Daddy to come home...I always feel better when he comes home :)
Thank you for your prayers for me and my cousin Joey...Have a good night!
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
|
|
-
|
Mon, Mar 03 2008, 11:00 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
A few more and I'm all caught up - February 29, 2008 at 01:37 PM EST Happy Leap Year, Everyone!
On Wednesday, our day nurse called out, so Mommy and me were by ourselves all day, til Daddy came home...it was so great!! We had so much fun being by ourselves...not that we don't like our nurses, but it was nice spending time with just the 2 of us (of course, we missed Daddy). Today, we're by ourselves too! A different nurse called out. So, it's a good day, because I spent all morning with Mommy, and Daddy will be home soon, so we can hang out all weekend...no day nurses this weekend either.
I was supposed to have my first physical therapy session today, but my new PT called out too!! Something up??! But she re-scheduled for next week...we're really looking forward to that.
I've been tasting bananas again, and I tried peaches too. I've been playing with my activity center and can do so much more with it now...I learned how to spin the little wheel, push all the buttons to play music and put the rattle-ball through the hole!! I also, have been working on holding myself up on hands and knees...this is hard work, so we only do it for little bits at a time, but I'm really getting the hang of it!! Daddy was reading me the story, "The Very Busy Spider" on Wednesday, and I was saying the animal sounds...woof, and oink! (it was the first time I said oink, and no, I haven't really clearly said mama yet...but I'm close)
I didn't sleep too well Wednesday night, but last night, I slept from 7:30 til 6am!!! Mommmy didn't sleep well at all...she thinks maybe it's because her "parent band" from the NICU broke off last night...it was sort of like Linus' security blanket, she said.
Oh well, gotta go, Daddy will be home soon!
Happy Weekend :)
Love
Liam  March 03, 2008 at 09:34 PM EST Hi Everyone :) Just wanted to write a quick update to say hi. It turns out, I wasn't teething...must've caught some cooties or something last week, but I'm better now. I'm sure I'll be teething again soon though! I forgot to tell you that I now weigh 19lbs 15.5oz, as of last Wednesday...in 9 days I gained almost a pound! I get weighed again in a couple days, so I'll try to remember to update. My fine motor skills have really been improving...and I can now officially sit on my own :) I can right myself when I start to tilt(usually)...and have even started to play while I'm sitting, so I'm starting to be able to focus on things other than balance :) (according to Mommy and Daddy this is an amazing accomplishment -not that they're surprised- considering we use our trunk muscles to balance while we sit, and mine aren't quite in the same spot or as developed as everyone elses). Some videos for you Go see Liam play!Thank you as always for your continued prayers...have a good week! 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, Mar 05 2008, 1:40 PM |
-
|
Wed, Mar 05 2008, 4:40 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
Jo, On the other hand, I love when you comment on the blog. Puts things into perspective for me. Please don't stop as long as I am putting them up. OK?
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 05 2008, 8:16 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
Robin, That cap photo is one of my favorites, too. I bet he wears it on St. Patty's Day! Kate is a very specail person (and Brian too) and we miss her at school but are fully aware and supportive of her more important role at home. God love her! Speaking of Mom, she has posted another update today March 05, 2008 at 06:15 PM EST Hi Everyone,
I got weighed today...20lbs 6oz!
Yesterday, I had to go to the lab and get my blood drawn...they had tried to at the doctor's office last week, but since they couldn't find a vein (so many IVs!!), they did a heel stick which isn't as good...I'm a good clotter, so, unfortunately for my test results, this isn't necessarily a good thing because they came back weird..and had to have them re-sent. Anyhow, I went out yesterday, and was a brave boy. They only had to stick me once, but they put the rubber thing on my arms several times to try to find a vein... which is the worst part!! It would've been kind of funny if I wasn't screaming and crying, because Mommy, my nurse(Kim) and the 2 ladies at the lab were all singing to me to try and settle me down...it didn't work though.
When I got home, since it was nice out, we walked to see Aunt Mare and Dante...then on the way back we saw our neighbor Karen...it was a good day for me to be outside since it was warm but not sunny.
I then took a 2 hour nap! Some good news...I was on the portable vent for 7 hours!!
My Physical Therapist came today...I was cranky when she got here because I was very tired. Oh yeah, and we had just received a letter in the mail saying my LTV had been recalled!!! Yeah, that's right, my main ventilator was recalled!! So, Mommy had to switch out my tubing from the portable vent to make it my main one until we get ours replaced! Anyhow, back to PT...I showed her how I can sit up and chew on things, and play with toys...she showed Mommy and Daddy some stretches to do with me for homework. She'll be back again Friday...OT has not been by nor have they called and are now in violation of the law!!! They are required to provide services 14 days after the evaluation...today was day 14. We are NOT PLEASED.
Well, have a good evening! Thank you for your continued prayers...and please say a prayer for my Great-Grandpop who's in the hospital, and also for the safe arrival of Baby Uff.
Love,
Liam 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
|
|
-
|
Wed, Mar 05 2008, 10:56 PM |
-
|
Sun, Mar 09 2008, 5:46 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
March 09, 2008 at 03:32 PM EDT Hi Everyone!
Happy 1st Birthday, Dante!! Sorry I cried when you were over my house the other day...I'm just not used to having another small person walking around my turf! Hope you're having a great day!!
I had PT and OT on Friday...OT is going to focus mainly on my feeding, and PT is going to work with strengthening my muscles so I can start moving around!
I went outside with Mommy and Daddy on Thursday, but the wind bothered me...it was chilly!
I have a new trick...I fake cough because I like when Mommy and Daddy make a fuss :)
Today, I watched my first St Patrick's Day parade...I really liked the music and dancing.
Have a great day, and thank you for your continued prayers...please also continue to pray for my Great Grandpop.
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
|
|
-
|
Mon, Mar 10 2008, 10:44 PM |
-
|
Wed, Mar 12 2008, 10:57 AM |
-
BombMom
-
-
-
Joined on 05-31-2005
-
Alaska, USA
-
Posts 1,088
-
-
|
Yikes, having the ventilator recalled must be a fun situation! NOT!! I hope that can be remedied quickly since he doesn't seem to tolerate the portable vent quite as well from what I've seen here. But then it may just be that the portable vent is blamed when the real cause of the decreased tolerance is the portability, not the machine at all. It's not easy having to go out and about, especially if he's learning that going out in the car means going to the hospital for pokes, prods, and other uncomfortable things! I got a huge kick out of the fake cough thing...it's such a grand developmental step when they've learned what causes a specific response that they like and then learn how to manipulate with it!! And it's cool that Mom and Dad have caught on to the game...I love it!!! Anne, I promise to keep commenting every chance I get...I wish I could more often than I can right now, but as hockey season is coming to an end in three weeks, hopefully that will help!! I'm treasurer for the team, and the closing out period right now is the busiest time for me!! Prayers continuing!!
 Jo
|
|
-
|
Mon, Mar 17 2008, 10:33 AM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
I am slightly behind in posting. Here's two for today. March 13, 2008 at 12:02 PM EDT Good Morning!
Sorry haven't written in awhile. All is well with us :)
I have to first say, Sorry!! to Grandma Linda for not wishing her a Happy Birthday on the carepage...hers was Saturday....my Uncle Tom's b-day was Monday...lots of birthdays in the month of March!
I was weighed today and I am now 20lbs, 12oz...growing like a weed!!
I'm sitting all the time now...I really like this new-found independence! The other day I actually started tipping over and Mommy helped me get on my hands and knees from sitting position...I did it mostly myself though! I don't really like being on my hands and knees yet though...it's hard work. Daddy had me on his chest the other night, and I sort of scooted myself!! I was on hands and knees and I kicked my feet and moved my one hand!! Pretty neat!
Oh, Dante came over on Tuesday...I didn't cry this time!
My PT and OT will be here tomorrow...we're looking forward to my therapy sessions!
Maybe I'll go outside today...it's seems nice.
Thank you for your continued prayers and please continue to pray for my Great Grandpop...also, please say a prayer for Aunt Mare...she got her tonsils out today!
Oh Yeah!!! And Daddy taught me how to clap!!!
Have a good day :)
Love,
Liam  March 16, 2008 at 08:48 PM EDT Hi Everyone,
Happy St Patrick's Day tomorrow!
I know, it's a pretty big deal in our family...especially for Uncle Jack (his bar/restaurant was where my benefit was)...they have lines of people at the door all day! It's a great big party!! Maybe I can go next year :)
Thursday I went outside for a bit but the wind is still a little much for me...I know I'll get used to it eventually.
Friday, PT and OT were here. I got to meet my regular OT...she seems nice. She just observed me, and let me get to know her, so next week we'll do some feeding therapy. My PT said in just the 3 visits she's been here she's noticed an improvement in my leg tightness and how well I reach for my toys...that means Mommy, Daddy and me are doing our homework :)
Tomorrow, a couple of people are coming to meet me...they're from the PA Ventilator Assisted Children's Home Program (VACHP). I was on the waiting list for several months, but tomorrow I'll officially be enrolled. This program provides support and advocacy services to families like us. The biggest thing they provide is funding for respite care services. That means when Mommy and Daddy are ready to go out on a date, and if we don't have our regular staffed nursing, we can hire our own nurses...that means, anyone from my CHOP family who's interested!! Not that Mommy and Daddy are ready to leave me for a night yet...but it'll be there when we're ready.
So, have a great St Patrick's Day...eat lots of ham and cabbage, and Irish potatoes, and drink lots of green beer :) Have fun! Be Safe!
Thank you for your continued prayers...please continue to pray for Great Grandpop.
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 18 2008, 2:33 AM |
-
BombMom
-
-
-
Joined on 05-31-2005
-
Alaska, USA
-
Posts 1,088
-
-
|
Wow!! All the excitement and new developments!! This is just great!! And the VACHP sounds like a fabulous resource for Brian and Kate and Liam! How nice for them to be able to count on respite care for an evening out - so they can sit there and talk about Liam all evening (we all know that's what they'll do, that's what all parents do when they go out, talk about the kids the whole time!!)  The strides our boy is making are quite remarkable - thanks so much for keeping us in the loop! Any new word on the ventilator recall and what's to be done about that? Just curious - can't help it, the respiratory therapist in me comes out no matter how hard I try to suppress it sometimes. Liam, if you ever come to my house for St. Paddy's Day, I'll make corned beef and cabbage, steamed baby carrots, new potatoes, and authentic Irish Soda Bread made from scratch!!! We had it tonight, and washed it all down with a wonderful Guiness Extra Stout - it wasn't green though...I don't know if you can make Guiness turn green as dark as it is...and if you managed it, you'd probably end up tinkling green for the next week from all the dye you had to use!!  Prayers continuing!!
Jo
|
|
-
|
Tue, Mar 18 2008, 10:49 AM |
-
leprrkan
-
-
-
Joined on 02-02-2008
-
An island in the stream...
-
Posts 56
-
-
|
That kid just gets cuter and cuter :)
"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
|
|
-
|
Tue, Mar 18 2008, 11:05 AM |
|