Tuesday, November 30, 2010

Pulmonology and Neurology recap

Things have been so crazy that I haven't had any time to post the most recent doctor news... and at this rate, it seems to change so often that I better post soon! Go Samuel :)

Last week we had our usual pulmonology appointment (we go every three weeks) and we also met with the neurologist and talked about the results of the MRI. I started to write, "do you want the good news, or the okay news, first"... but I'm starting not to like those words very much. It's not that I don't believe in "okay news," I know it exists :) But I feel like that makes you saw "awww, poor kid" and Samuel is NOT that! He is absolutely amazing! I feel like this "okay news" is simply a symptom of the fact that lately all of the news has been good! This is hard to explain on a blog... on to the news...

Pulmonary was great! For the three weeks leading up to the appointment, we did two weeks of 2 nights off the vent and 1 night on... then after an email from our doctor that almost knocked me off my bench, a week of 3 nights off the vent and 1 night on. Samuel seems to be handling it well! His CO2 was actually down just a tad from the last appointment. The base excess was up a bit, but not serious enough that we can't keep an eye on it and keep forging ahead. SO, we are now on 3 nights off the vent and 1 night on for two weeks and then we will email with our doc to see if we should up that the week before our next appointment. I love it!

I also got a little reality check from our pulmonologist that wasn't fun to hear, but very necessary. Our biggest concern at this point is Samuel getting sick. The wrong bug, even if it isn't that bad for you or me, could put him back in ICU and/or back on the vent full time. Ugh. At the same time, it's funny (for lack of a better word) because if he can catch a cold and manage to not go back to ICU, it's a great thing - it means his body has a chance to build up it's immune system. Talk about walking a fine line. This was scary to hear, but like I said, also a good reminder when we start to feel like we can relax a little bit because he's doing so well.

Neurology was okay. Samuel's MRI was unchanged... not better, but not worse. He still has some hydrocephalus (swelling/excess fluid) in the main ventricles in his brain, but they are still okay and not severe enough to require shunting. Samuel also still has some excess fluid pockets in his sweet head. Not a huge deal unless he wants to play football :) But, when you account for the extra fluid, his head circumference is a bit small. It's not always the case, but smaller head circumferences can account for a lower IQ... but I know some pretty smart pea heads, so we are trying not to worry. Ha ha! There are also a few more things we want to watch that are way too medical for me to write about - if I haven't lost you yet, I would with that. Bottom line, things are okay.

Writing about this now, it feels kind of silly to say that I cried on and off for a good 24 hours after the appointment. I think that in the back of my mind I so badly wanted to hear "wow, it's incredible, everything on the MRI looks perfect!" Also kind of silly because it is perfect... it's my Samuel :) I am sure that whoever got to come up with the definition for perfect would agree.

A lot of great things came out of conversations with both doctors, but one got me moving in a new direction with Samuel. We have speech therapy, occupational therapy, and physical therapy, but one delay we haven't really addressed is his communication delay, which is entirely different than the ability to speak. In regards to some of these delays, the doctor recommended I look into some of the therapies they use for autistic children... no, Samuel is not autistic, but after doing a little bit of research, many of the programs used for children with autism are also used for other kids with communication delays, including kiddos with downs syndrome and preemies :) For example, because Samuel was in the hospital for so long, he never had a chance to learn all of the prelinguistic skills required for communicating... like he has never cried because he's hungry. I know it sounds kind of basic, but it has really helped me to be able to put this into words. All of a sudden I have new resources and new ways to help my baby learn to communicate. At the very least, I am thinking in a new direction and I know that will make a difference in how I work with Samuel. So much to say here, but this is a general intro.

Speaking of recap, some October photos I couldn't resist posting... after all, they were taken in one of my favorite places, the backyard :)

Samuel and one of his BFF's, Stefanie :)

George and Olivia literally smell every flower they see... whether it is planted in a pot or printed on a shirt, they are smelling it!

Touching pine straw! This doesn't happen too often, but when it does, we cheer!

You can also see Samuel's passy muir (speaking valve) attached to his trach... he has been doing more and more time on this. He loves it, but his body isn't quite ready to be on it all day. Let me tell you, he makes the most out of the time he does get, babbling up a storm!

George loves his pine straw :) I think he's organizing it, which must be why he moves it around so many times - it's impossible to organize pine straw!

Hiding! One of Olivia's favorite games... along with "Got You!" and "Boo!" All of which are followed by uncontrollable laughter and "again!) :)

Thursday, November 25, 2010

Happy Thanksgiving!

Our first Thanksgiving together! And get ready, there are about to be a lot more togetherness firsts with the upcoming holiday season - and I plan on celebrating every single one :)

We actually celebrated Thanksgiving last weekend with some family and some friends... 9 adults total, and of course 3 babies. It was crowded and awesome! Lots of food, lots of smiles, and lots for which to be thankful.

We (DB, Omi, Maddie, Jay, Linda, Kristen, Dear Ann, and Dear Bob) ate like kings! Olivia joined in the feast, George was very sure he did not like anything except the cranberries and sweet potatoes, and Samuel... well, he had his normal pediasure meal through the gtube and put everything in his mouth except food. I try to tell him he's missing out, but he just smiles at me with his shining "ok mom" eyes. Stinker.

Of course, I got absolutely no photos of our group - I was too busy taking photos of these three... ha ha!

Everyone smiled at almost the same time - woo hoo!

Proof that the photo session could have been worse ;)

Kristen brought over these great hats, which of course none of the babies appreciated as much as I did :) I think the only thing Samuel liked about being a pilgrim...

... was watching me try to balance the hat on his head and then chase it when it fell!

The Native American headdress did go over a little bit better :)

Bow AND a hat - that's my girl!

George was definitely the least thrilled with the paper feathers on his head :)

Of course, the next day Olivia thought the hat was great and danced around it in forever. This girl is hysterical!

Wednesday, November 24, 2010

Happy Haircut Day - Part Two!

We took all three babies to get haircuts last week... and it was great :) Yes, really! Only a few tears, and they were easily solved by lollipops. I have to say, these are the times when I pat myself on the back for not giving them much candy :) Just like last time, at first they wouldn't touch the lollipops, but after that first lick, they were hooked and all insecurities about this new place were forgotten.

This haircut was not JUST a haircut. (Go figure!) Well, maybe for George and Olivia it was, but for Samuel, it was more than that. This was Samuel's first haircut that was for the sole purpose of being cute. Every other haircut he has had was in the hospital, and all of them were done in order to put some type of line into his little head. No lines (or iv's) or anything of the sort this time... just a little trim on the top, a nice clean-up around the neck line, and a bit off the back... and just to improve upon his already smashing good looks :)

Once again, George went first - brave boy!

Olivia was more comfortable with the idea after watching George... but this was definitely good use of a lollipop!

Samuel wasn't too thrilled about it...

... nope, not happy...

... and again, still not happy...

Seriously Samuel, it's not THAT bad! Get your thumb out of your eye!

Handsome boy! But he didn't seem too impressed :)

I just love these photos :)

Like Samuel, George was also uninterested in showing off his trimmed up hair - too many trucks going by!

Olivia, on the other hand, was all smiles!
Above, cheesy and real... Below, cheesy and fake, but still too cute :)

Monday, November 22, 2010

Pumpkin Patch

Last month, in October, we visited the Pumpkin Patch! My only excuse for not posting sooner is that our friend Josh took too many good photos - narrowing them down was ridiculous. Thanks Josh :)

Besides fun photos, the Pumpkin Patch was another first for our family of five... it was the first time, EVER, that DB and I packed up all three kids and drove out of our driveway together. We even had to get a third car seat :) We had three infant/baby seats, but there was never a time we used them all at the same time. And now, all of my "babies" are too big for them! A friend gave us her two toddler seats and they've worked perfectly because in the past we have either taken George and Olivia OR Samuel. Not this day!

Olivia and I went to pick out the 3rd seat the day before our adventure - turns out it was a bad idea to let her sample the seats. When I had chosen the seat and it was time to get back in the cart, she threw her first in-store temper tantrum. It was a doozey! I tried to keep shopping, thinking the crying and screaming would stop, but I was wrong. Of course, as soon as we left the fit was over... such a stinker. I just hope the other parents in the store didn't think I was terrible - I was holding back laughter the entire time she was throwing the fit... partially nervous laughter, and partially because I was impressed with her determination :)

On the other hand, when we got to the Pumpkin Patch, I was hugely grateful it was not just the five of us! Ha ha! These babies are crazy! Having Omi, Kristen, Josh, and Rachel to help chase them and pose them was awesome.

The family :) I love the black and white - I feel like things appear so calm this way. Not really sure why :)

No worries, Olivia's got this one!

Of course, George couldn't let his sister get the biggest pumpkin :)

Samuel loved being at the pumpkin patch! He didn't even mind sitting on the hay - such a good sport.

Of all the photos of the three babies, this was probably the best :) Ha ha! Poses didn't go so well this day!

Mama and Samuel

Olivia was very focused on her punkins... correct, there is no "m" in punkin :)

Daddy and George

Kiss for Samuel :)

Mom, seriously, enough posing with pumpkins...

George made sure to inspect every single one :)

Olivia made sure to toss every single one... above, she is demonstrating the underhand approach...

... I'm not sure what approach this is :)
We ended up purchasing our Halloween pumpkins that day, and made sure to choose a few that had been the favorites to toss!

There's my Olivia's smile!
Everyone loved the hay rides!

Daddy and Samuel on the hay ride :)

George was in heaven on the hay ride! The boy loves trucks, and he was fascinated with the one pulling us along.

Even Samuel's chair had a good day :)

Even at the end of the day they were trying their best to put on a smile for the camera :)

As I said, Samuel loved getting out of the house :)

George made sure to stop and smell the flowers :)

George and Olivia petting one of the horses. Great outing topped off with horses, pigs, and goats!

Monday, November 15, 2010

Just Because

No story here, except the ones the photos tell :)
Another good day with the Byrne babies...

Smiling and swinging, as usual :)

Hysterical! This was the face Samuel made when you pushed him extra high - I compared it to the feeling I get at an amusement park on that big boat ride that swings back and forth. I was so happy that he was enjoying it! We'll see how much he loves it in about 30 years ;)

Happy just being George :)

Lunch for three, please!

The Boys
Samuel, check out the boats!

Nah, check out those dogs, George!

Nothing better than hanging out with your brother :)

Samuel's First Big Slide

He has been on the little ones before, but this slide was major for Samuel!
I think he was a little unsure at first...
... and maybe still a little unsure...

... but eventually he gave up the act and told me he loved it! Ha ha!