|
|
Prayers for Liam
Last post 16 hours, 14 minutes ago by AnneInPhilly. 444 replies.
-
 Sun, Mar 30 2008, 1:33 PM |
-
BombMom
-
-
-
Joined on 05-31-2005
-
Alaska, USA
-
Posts 1,088
-
-
|
Liam, Thanks for the really cool "day in the life of Liam" update!! Loved hearing about all the praise and good news from your doctors and therapists!! So cool to watch you grow and get strong! You weigh more than my both my kids weighed at one year!! My son was 19 lb, and my daughter was only 17!! They were both premature, but didn't have any other stuff to deal with like you have...but, you should see them now, at ages 17 and 12!! Huge!! Just like you'll get to be, and your mom and dad will look at your baby pictures and marvel at how tiny you were, and were you REALLY that little???!!  Of course, now that you're a big one year old, that marvelling has most likely already started... Keeping you in my prayers, Big Guy, and your GreatGrandpop and Gram also!
 Jo
|
|
-
|
Mon, Mar 31 2008, 8:48 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
March 31, 2008 at 11:21 AM EDT Good Morning!
I don't have any updates on myself...just wanted to let everyone know that today is CDH Awareness Day (in 32 states). A boy named Chad, (who is trach/vented) who we've come to know and love, was born with Congenital Diaphragmatic Hernia.
Chad was born March 18, 2006 and was in CHOP until January 30, 2007. So, as you can see...Chad and me are almost exactly one year apart and pretty much spent the same amount of time at CHOP...and, Chad charmed all of his nurses as well. Many of my nurses have compared Chad and me...so it's really great to witness Chad’s progress through his carepage.
If any of you heard Mommy on the radio in September...Chad and his parents, Kelli and Mike, were on right after her. His family has helped us out a lot, answering many of the questions we've had since I was trached. We’ve been following Chad’s progress since we met him and his parents. He's walking and spends 15minutes twice a day off the vent!! I get to see what I can look forward to!
So, I just wanted to do my new friend Chad a favor and spread the word about CDH.
The diaphragm is a shelf of muscle which separates the chest cavity from the abdominal cavity, and controls the lungs' ability to inhale and exhale. It's formed in the first trimester of pregnancy. Congenital Diaphragmatic Hernia (CDH), is a defect in the diaphragm which allows the abdominal organs (stomach, sm. intestine, liver, spleen) to move into the chest cavity. This inhibits lung growth. Like my defect, the cause is not yet known.
For more info check out: Breath of Hope Inc. (Awareness/Support): www.breathofhopeinc.com or
http://www.chop.edu/consumer/jsp/division/generic.jsp?id=81164
So, that’s it for now. Please say an extra prayer for Chad today that he continues his amazing progress, also for Paige, another trach/vented baby we met at CHOP who caught a virus and is now back at CHOP…for Cheyenne who is trying to gain weight and stay healthy for her next surgery. Also, of course, please pray for GreatGrandpop and Gram too.
HAPPY OPENING DAY, PHILS!!
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 31 2008, 11:41 PM |
-
Robin4Song
-
-
-
Joined on 07-02-2006
-
Virginia
-
Posts 442
-
-
|
Prayers for Liam, Chad, Paige and all the children with special needs. Thanks for the continued updates, Anne. I look forward to hearing about and seeing Liam's progress. Robin
|
|
-
|
Thu, Apr 03 2008, 11:12 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
All ready for playing outside - now, if it ever gets to be Spring again...  April 03, 2008 at 05:03 PM EDT Hi Everyone,
Just wanted to say hello. Quick update...I've been needing more trach changes than the usual one per week. It started when I got the cold, but I'm now over my cold and still needed to have my trach changed Monday and Wednesday!! Mommy talked to Laurie from Pulmonology...she suggested to go up a little on the temperature of my humidifier. She said sometimes my tubing may appear wet enough to give me good humidity but if it's too wet, the big droplets just stay in the tubing and I actually am not getting humidified efficiently. So, that's what we did...we're hoping that works. We're also going to try some saline nebulizer treatments to give a little extra moisture too.
We'll be at CHOP again tomorrow. Finally going to see Dr Snyder, the urologist...we cancelled him TWICE already! Hopefully all is well. Our appt is at 3:30...don't know if we'll make it to the NICU.
Thank you for your prayers...please continue them for Gram, Great Grandpop and my friends, Addy and Cheyenne. Paige is home from the hospital and doing well. And Chad is doing well 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
|
|
-
|
Sat, Apr 05 2008, 5:07 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
April 05, 2008 at 02:35 PM EDT Hi Everyone,
Sorry, I updated earlier but for some reason it never posted.
Not so good news is that I needed ANOTHER trach change last night. Mommy called the pulmonary doc on call and he thought it may just be residual secretions from the cold I had. He said sometimes it takes awhile for everything to clear out. So, he suggested albuterol treatments 2-3 times a day and saline nebulizers 2-3 times a day. The albuterol opens up the lungs and may help move out the residual cold secretions...the saline adds extra moisture.
Good news...my CHOP visit went well! I didn't get to see my friends in teh NICU...sorry, I'll stop next time! But I did get to see my Nurse Kerri in the elevator and Dr Safford while I was in the waiting room. Dr Snyder said he didn't see anything concerning and called me a "jolly little fellow". The reason for the visit was because when I was born I had an undescended testicle...now I'm really getting personal! Anyhow, it's where it should be now...which is what they suspected would happen. That happens alot with boy preemies. So, that was good to hear because it means one less surgery :) I also have grade 3 reflux into my right kidney which was the cause of my past UTIs...he said by the age of 2 that should resolve also. He doesn't need to see me again until next year. The only change was that he increased teh dose of antibiotic that I take to keep the UTIs away.
More good news...I went to my first Tee-Ball game today! My cousin Tom plays for the Warriors and my cousins Joey and Brian and friend Ryan play for the Chiefs...so I got to see lots of family and friends!! I saw/met: Uncle Joe, Aunt Melissa(and her sisters), Aunt Cathy, cousin Cecilia, Uncle Tom, the Bucktons and Ryan's Grandmoms! It was really exciting but very windy. We stayed for about 20 minutes...but the wind was alittle much...although I did much better than I have before. I didn't cry and even smiled a few times! Next game I hope the weather is nicer.
On a different subject...I just wanted to let everyone know that my big cousin Robert "Bobby" Gormley is running for the State House in PA. Bobby has done a lot for me and my family over this past year. He is a real good guy and he would be great for both the state of PA and for the people of his district. You see, although I am just one, I am very politically savvy for my age! I know that it has almost become an oxymoron, but Bobby would be, without a doubt, an honest politician. They are holding a fundraiser for Bobby on April 19th at the Bocce Club in South Philly from 8pm until 12am. Any support would be greatly appreciated. If you need more info please just contact my dad.
As always, thank you for your prayers. Please continue to pray for my Great Grandpop and my Gram.
Love,
Liam *********************************************************************************************** Now the weird thing is - I taught a kindergartener named Bobby Gormley from that same area in my second year of teaching, way back in 1976. Wow. I feel really old. 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
|
|
-
|
Mon, Apr 07 2008, 3:01 AM |
-
BombMom
-
-
-
Joined on 05-31-2005
-
Alaska, USA
-
Posts 1,088
-
-
|
 AnneInPhilly: *********************************************************************************************** Now the weird thing is - I taught a kindergartener named Bobby Gormley from that same area in my second year of teaching, way back in 1976. Wow. I feel really old. Anne
So this totally begs the question, "Would this be the SAME Bobby Gormley??" **Snicker** 
As always, thanks for the update Anne!
Jo
|
|
-
|
Fri, Apr 11 2008, 6:55 AM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
Jo, I don't know if it is the same Bobby Gormley, but it wouldn't surprise me. He was an outgoing soul at age 5. Here's the latest from Liam: April 10, 2008 at 11:14 PM EDT Hi Everyone!
Well, it's hard to believe that a year ago tomorrow (4-11-07) was my first surgery. What a long way I've come!
So, I haven't been updating as much because I am so busy lately, playing with all of my new toys! I'll try to update at least once a week.
Well, I had a trach change today...not to worry though, Mommy and my Nurse Kim decided to change it before I even realized I needed one! I did need one, but it was more like a regular trach change rather than an "emergency" change...the only difference was Daddy wasn't here for it. We were going to do my weekly change tomorrow anyhow, so it was not like last week!
Since it was so nice out today we drove to Grandmom Mags' and Bill's house to let Max out...he licked me right in the face!! I guess he was happy to see me. (Bill is doing better but still really needs your prayers).
After we saw Max, we went to my cousin Alyssa's softball scrimmage. I saw Grandmom Mags, Kim, Mike and Ava, and Aunt MAre, her friend and Dante too. We saw Alyssa bat twice...she did really good! I hope to see a few more of her games now that the weather is nice...I have so many friends and relatives who play ball, that every weekend will be booked!
I worked with both PT and OT this week...my PT says she sees great progress each week! I'm starting to bend from side to side, to check out my toys from all angles, and I figured out how to lay down from a sitting position. I also roll onto my back all the time now...and Daddy taught me how to wave! And my tooth is in...I now have 7!
OT has been trying to help me with feeding...that's going to be a slow process.
Hope you have a great weekend :) Thank you for continuing to pray for me. Please also pray for Bill, Great Grandpop, my friend Cheyenne, and twins Shannon and Maggie.
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, Apr 11 2008, 12:23 PM |
-
|
Fri, Apr 18 2008, 3:50 AM |
-
BombMom
-
-
-
Joined on 05-31-2005
-
Alaska, USA
-
Posts 1,088
-
-
|
Hey Liam, Know what I saw?? I saw a GREAT BIG SEA show planned for PHILLY!! So have you talked your folks into taking you yet??? I wish I could come and meet up with you before the show and all that fun stuff, but Alaska's a long way away and I don't have enough vacation time to do the trip...so you go to the show and write a great review for all of us!! Prayers still coming your way, and also for your family and friends you mentioned!!
Jo
|
|
-
|
Fri, Apr 18 2008, 6:44 AM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
April 17, 2008 at 10:11 AM EDT Good Morning!
Well, I've been having a nice week...although I've had 2 MORE TRACH CHANGES!! So, pulmonary NPs and the ENT NP keep saying "sounds like a humidification issue"...BUT IT'S NOT!!! We're getting a little frustrated. If anything the tubing has too much water...I'm certainly not drying out. We scheduled an appt with ENT for May 8...Rhonda, the ENT NP said it could be that I need a bigger trach...she also said it could still be residual secretions from the cold a fews weeks ago, although that seems unlikely. But the trach isn't coated, it's just one gross little pluggy thing...so maybe it IS just older secretions that had been trapped in the small airways and are finally making their way out. I don't know, but it's getting very annoying.
So, besides that nonsense...I've had some visitors over lately, and it's been great! I'm happy it's been warm outside, because I like getting out of the house and seeing new people and things.
I've been standing a lot lately...I'm even able to hold myself up for a short amount of time...so my legs and arms are getting stronger. I learned a new trick...I can flip my Fisher Price table upside down! I also have started playing catch with Daddy (I like to flick the ball to him and I also like to kick it to him). I'm making lots of new noises, but still no "momma".
So, as far as PT is concerned, I'm really progressing well. As far as OT is concerned (feeding), I'm not doing a whole lot when she's here. I puked 2 weeks ago when OT was here(mommy went into the kitchen for a second and OT gagged me!)...so now I'm not so sure about her...I hardly even play with toys when she's here, and I am always making sure that Mommy is right next to me(which she is). We may need to think about getting someone new...we'll see how things go next week.
I get weighed tomorrow, so I will write a little update to say how much I've grown.
Thank you AS ALWAYS for your prayers...and I have a few people I'd like you to pray for (because you are all so generous): Great Grandpop, Chad, Cheyenne, Addy, Paige (NICU friends), Baby Sean (in the NICU), and Campbell twins (in the NICU). Also wanted to let you know Bill is doing much better, so thanks for your prayers.
Enjoy the beautiful day :)
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, Apr 19 2008, 6:23 AM |
-
BombMom
-
-
-
Joined on 05-31-2005
-
Alaska, USA
-
Posts 1,088
-
-
|
Anne, please pass along this suggestion to Kate and Brian for the humidification vs. excess water in the tubing issue... It actually could still be a humidification issue - basically, because our boy needs enough "rope" in order to be the active boy he needs to be, there's alot of distance between the trach and the heat/humidity source. The air in the house is significantly cooler than what is leaving the heater and going into the tubing, so the totally warmed and 100% humid air cools as it goes thru the tubing toward Liam, and so the humidity "rains out" into the tubing. Because of the "raining out", the air that actually reaches Liam is not as humid as it needs to be. DON'T turn up the heater setting though!!! This could accidentally burn his lungs, and that would not be good at all!! Instead, try insulating Liam's tubing with something light weight like flexible foam with velcro glued onto the edges to hold it around the tubing. The velcro will give you quick access for checking the tubing for excess water. Also, if you don't already have one, ask the home care folks about using a draining device in the middle of the long tubing so he doesn't inadvertently get the "rain out" water dumped down the trach. We used to insulate the ventilator tubing in the hospital for this very reason, but in the acute care setting, it's a little easier to do because 1) the patient usually doesn't need as much "rope" as an active 1 year old, and 2) we could actually insulate the tubing by placing it under the covers and next to the patient's body, thus keeping the tubing closest to the trach or endotracheal tube very warm. Have Kate let us know how this works for them...
Jo
|
|
-
|
Sat, Apr 19 2008, 10:14 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
Thanks Jo - message passed. Here's a new photo and update: 
April 19, 2008 at 09:15 PM EDT Hi Everyone,
It's been so nice outside! I went on my first walk around Drexel Hill on Thursday, and met a few of my neighbors...it was so nice!
Friday I had a GREAT session with my physical therapist...she said I was wonderful! She was so pleased with all of my progress...I'm using my pointer finger to press on things (this is a big developmental milestone for me)...I'm also reaching really far to grab things, and she said she's starting to see "trunk rotation". This means I'm turning my body, not just my head and shoulders, to get things or look at things...this is a BIG step towards being able to sit myself up from a lying position.
This morning, Daddy lined up some of my "Little People" farm animals and asked me which one says "mooo" and I picked the cow...he put the cow back and asked which one says "baaa" and I picked the lamb...he did the same thing again but asked which one says "oink" and I picked the pig!
Mommy gave me a freeze pop...it was a little cold ...I didnt like that but I did like the taste :) And later today, Mommy took me out to the deck to play(this was the first time Mommy made me "portable" by herself). She put lots of sunblock on me, I had my hat on and we had the umbrella up! I like being outside!
Oh, and I was weighed yesterday...22lbs, 2oz, and I am now 28inches long.
Well, enjoy the rest of your weekend!! Please continue all of your prayers...they help so much! 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
|
|
-
|
Thu, Apr 24 2008, 4:56 PM |
-
AnneInPhilly
-
-
-
Joined on 11-26-2003
-
Philadelphia, PA USA
-
Posts 3,664
-
-
|
New photo and update:  April 24, 2008 at 07:21 AM EDT Good Morning!
Hope everyone is enjoying the nice weather!
I am getting stronger with each day...I can now pull myself to stand when I am sitting on Mommy's leg! And I can stand while holding on a little longer each time!
My Respiratory Therapist, John, was here yesterday with my equipment order...he analyzed how much oxygen I'm on (3/8L) and it was 23.8%! This is very exciting...for those who don't know, room air is 21%. I'm almost off oxygen!!! This is a big sign that my lungs are getting stronger :)
Those back teeth still haven't come in yet, but I can feel them trying to push their way in. I've been chewing on everything!! But I'm only needing motrin at night...during the day I'm fine.
So, Mommy and Daddy MIGHT take me to Penn Relays tonight. We're going to see how my day goes. I'd love to see some track races so I know what Mommy used to do...although, she said the people I'll see run there are much better than she was. Daddy and Mommy said it's a lot of fun whether you're running or not...I'll get to meet lots of new people too.
Hopefully I'll get to another T-Ball game this weekend.
Have a great day, enjoy the sunshine!
And please continue to pray for GreatGrandpop, and my NICU friends (and me too of course!).
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
|
|
|