Good Afternoon!
Well, I had a really nice week. Saturday, my Uncle Jack bought me a big soft Nemo fish! I was a little nervous at first, but now I love it! And I met 2 of Grandmom Mags cousins...they made a big fuss over me. Sunday we had friends over...TJ and Izzie(and their mom & dad of course), and I didn't cry...I was even laughing at TJ! They bought me a new toy, a train. And yesterday my cousin Sienna and her mommy, Patrice came to see me...they brought me a toy too! It's a crazy ball popper!
I've been moving around so much lately that Daddy and Mommy had to move the coffee table out of the living room because they dont want me to bump my head.
I met my new OT on Tuesday...she will be our therapy "team leader". She doesn't often take on cases because she has a lot of other things going on, so she will only be out once a month. She came up with some new things for me to try, and also gave us a cool table with a little semi-circle cut out to accommodate my belly. I love it!! She also made me a brace to support my belly...for those of you wondering...I'm a double "D"!!
I had my 3month evaluation with my Early Intervention Team...we had to set new goals because I've already achieved some of the original ones! My case manager hasn't seen me in 3 months and she couldn't believe all the stuff I've been doing. She asked my PT if it was normal to have progressed this quickly...PT said this is an "ideal" situation. It rarely happens this quickly. Yayy for Liam!
So, I'm now on 3/4 of the Peptamen Jr and 1/4 of the Nutramigen...and we started to get a little nervous because I hadn't pooped at all yesterday...but I sure went today!! I ruined a onesie and an ace bandage, and I had to get a second bath!!! I feel so much better :)
Remember your vets this weekend...and enjoy the beautiful weather :)
Please continue to pray for GreatGrandpop, Uncle Henry, Baby Sean, and my NICU friends.
Thank you...Happy (Unofficial) start to summer!!
Love,
Liam

Good Morning!
So, I had a very fun weekend. Daddy was home for 3 days!! And we had a bbq for our friends who didn't go down the shore. It was very crowded, but I had fun!! I was so happy to meet so many of my friends. And I got more presents...it was very thoughtful of them, but unnecessary. Although, it is always nice to get new toys :)
I had a CHOP appointment yesterday. It was the neo-natal follow-up/developmental evaluation that I was supposed to have last time I went but had no time for. Well, we've all come to the conclusion that I've developed a deep hatred for going to the doctor's. From the time I get put into my stroller, then onto the elevator, then into the waiting room, I get WORKED UP! I cry hysterically, have a runny nose, and lots of extra secretions which means extra suctioning. Yesterday, I got myself so worn out that I eventually fell asleep in Daddy's arms. So, I did not have the developmental evaluation...but Mommy & Daddy told Dr Casey Hoffman (she knows me from the NICU) all about what I've been doing. She said most of the things sound within the "normal" range...which Mommy & Daddy were not surprised to hear. Neo-natal follow up was a Dr checking me out like any other Dr I see...so we're not really sure why I had to see them.
Dr Hoffman is sending a list of recommended activities, but she said it's probably stuff we're already doing...especially since my therapists are so good at what they do. So overall, we thought it was a pointless visit that got me all worked up for nothing. I didn't even get to see my friends from the NICU.
I am now completely on the Peptamen Jr and seem to be tolerating it well. Tomorrow we're going to go up on my volume from 150ml/feed to 160ml/feed.
That's about it.
Please continue to pray for GreatGrandpop, Uncle Henry, Baby Sean, and my NICU friends, Thank you!
And forgot to mention on Friday, Welcome to the World Teagan Gallagher!! All these new babies being born!!
Love
Liam

Good Morning,
I’m up to 160ml per feed now. And so far I’m tolerating it just fine. The next step will be to gradually take from the midnight feed and distribute it throughout my other 6 feeds so I’ll only be fed 6 times a day. This is a little more natural, and that way I don’t have to be fed every 3 hours…we can play around with the times a little more.
I’ve started making new sounds…lots of “bababas”. This will make my speech therapist happy. This morning, I stood all by myself in my crib! I pulled myself up by reaching and holding on to the crib rail! I was so surprised!
We stopped by our friend’s Christening on Sunday but the music was loud and I got scared, so we didn’t stay too long. I was happy to go for a couple minutes at least to see some friends and meet some new ones. Little by little I’ll get used to all of these new things.
Friends and family, it is with great sadness that I have to tell you, my friend, Baby Sean went to heaven yesterday. I know his family appreciated your prayers and I ask that you please continue to pray for them during this very difficult time. Sean’s Mommy also requested that you take more time for your kids…hug them harder and kiss them more often. Everything else can wait.
Thank you,
Love,
Liam

Good Morning!!
First great news is...Daddy's done school for the summer!! Yayyyy!
And our day nurses are off this week so it's just me, Daddy and Mommy. We really like our nurses, they are great...but we really LOVE having our family time!!
On Friday night I got to see/meet my family on Mommy's side at my cousin Megan's graduation party. It was so great to see everyone! And I didn't cry once...which Mommy and Daddy were so happy about, especially since it was around my bedtime. Saturday I was supposed to go to my friend Leah's 1st birthday party but our air conditioning wasn't working so we had to stay home while our friends worked on it. They did a great job, now it's keeping us nice and cool. Sunday, I got to hang out with "the guys". It was Aunt Bridget's shower for my new baby cousin so that's where Mommy,my Grandmoms and Aunt Kristy were. The guys hung here for awhile...we watched the Phils.
Things have been good, I'm making new sounds everyday...and I even try to repeat Mommy and Daddy when they say things to me or make sounds.
I had a little incident Sunday night where I was put on oxygen for 20minutes or so. It was bedtime and Mommy had just disconnected me from the vent for a second to put the tubing through the cribrails, and I started crying, and my color didn't look so good. So Daddy hooked up the oxygen and put on my pulse-ox (to check my blood oxygen saturation)...and it was reading 93, which is fine. But I was still crying and was pale and mottled. I had pooped so once they took off my diaper and cleaned me up I settled and fell asleep on Mommy. They were afraid that I had aspirated (inhaled my reflux), which isn't good. But when they talked to Dr Panitch's office the next day they said that it didn't sound like that's what happened. They think it was probably that I had beared down right as Mommy disconnected me and I got a little dusky colored. Apparently just because your color looks off doesn't necessarily mean your sats are bad. Kind of like how kids' lips turn purple when they are cold....the blood just goes where it needs to. Anyway, Daddy and Mommy think I did it to make sure they are not getting too complacent with my care!!
Since it's been so hot out we've sort of been prisoners in our home...hopefully towards the end of the week the weather will settle a bit and we'll be able to do stuff!! I think we are going out to lunch today to see Uncle Jack.
Have a good week! Please continue your prayers for GreatGrandpop, the Cavalieri's, and our friend Amanda who's having a baby this week.
Love,
Liam

Good Morning!
Happy Father's Day!
Last year, on Daddy's first Father's Day, I had developed a mucous fistula (hole in my intestine) the night before. So his first Father's Day was not what we had planned. I've been told (and have experienced) that not many things do go according to plan. We made the best of the day last year as best we could.
I'd like to make it up to him this year. We're not doing anything special...just Mommy and me hanging out & bbq-ing with our best buddy. We're also expecting some visits from my Pops and Grandmoms, and Uncles & Aunts throughout the day.
I love Daddy for all the things he does for me...he teaches me things like how to clap, and say "stand up!" and he's been trying forever to teach me to say "Mommy". I'll get it soon. He also teaches me about music on Sunday mornings when it's just the two of us. He takes good care of me & Mommy. The most important thing about Daddy is that he's always there for us and he loves us so much. We love him too!! We're his BIGGEST FANS!
Happy Father's Day, Daddy....you are the best :)
I have some pretty great grandpops too...thanks for always being there for us.
Happy Father's Day Dads, Grandpops, Godfathers, & Uncles!!! Enjoy your day!
Love,
Liam

Hi Everyone,
We never ended up going to the Fetal Surgery Family Reunion...we missed seeing lots of friends, but we felt it better not to go since my recent adversion to CHOP, and because the forecast for the weather wasn't too good, although it turned out to be pretty nice.
So, we had 2 appointments today. I was so happy to be in the car, laughing and talking. As soon as we parked in the garage, I started crying, and didn't really stop til I fell asleep in the GI doc's office. Although I didn't have a major meltdown like the past couple times there, so I'm doing a little better. The GI doc suggested I stop one of my reflux meds, Reglan, just to see if it's having any impact. I've been on it for at least a year now...so it's nice to be done with another med(for now, anyhow)!!
We then went to ENT where we sat in the waiting room for an hour and a half!! I actually was pretty happy just hanging out with Mommy & Daddy...and guess what? Two of my NICU friends, Paige & Addy, were there too!! And I saw one of my Respiratory Therapists and my Speech therapist from the NICU! So, we finally got back to the room and I was starting to get pretty tired since I had only had a 10minute nap. The ENT doc, Dr Jacobs, is a very nice man and he let Mommy & Daddy do my trach change because they explained how I get at the Dr's office. It went really well!! Dr Jacobs said my trachea (windpipe) looks great, and the new trach is a great fit. And guess what? I can still make all my sounds! I started reading my book, Put Me in the Zoo, while I was still in the office. And probably the best part...we don't have to see ENT again for 6 months! Woohoo!
So, it was a long day...we left our house at 8:30am and got back home at 1:30pm. I took a long nap, and since waking up I've been yelling alot...just to make sure I still can :)
It was really good that we went though...I did need a bigger trach because yesterday I coughed really hard and my trach popped out! That was pretty scary!
I've been doing well...I know I don't update often. I'm now pointing to Mommy & Daddy (sort of) when they ask where one of them is. I love to point to my nose too, then Mommy's nose...same-same! And then