Sunday, October 31, 2010

Happy Halloween!

What do you get when you combine...

...vanilla, with a touch of fudge, topped with whip cream and a cherry...

...strawberry, with a touch of fudge, topped with whip cream and a cherry...

...and chocolate, with a touch of fudge, topped with whip cream and a cherry?

The cutest banana split that you ever did see!

It's a good thing the individual photos turned out, because this was the best group photo we got... one with a 1/2 smile, one being a goof and closing her eyes, and one with too many chins to count. Ha ha!

So, more individuals :)

Thank you for sticking out your tongue Olivia, but a big cheesy grin would have been just fine ;)

Happy to be part of the crew this year! No more trick-or-treating alone!

Taking it all in :)

George so badly wanted to keep his hat on, but at the same time did not like it. Too funny, he would take it off, but anytime someone would approach the stroller to admire their cuteness, he would try his best to get that hat back on. What a good sport!

Click here to double back and check out Halloween 2009. It's amazing the difference a year makes!

Saturday, October 30, 2010

O and G

As I mentioned before, no Breathing Updates for George and Olivia... no doctor news at all actually :) But I'm not about to wait for "news" to post these final September pics of them... now, on to October! ha ha!

Hi George! Oh my goodness, I have no idea how he got into the radio flyer, but this child just about stole my heart when I saw him happy as pie in his own little world :)

Hi mama! Come on in!
Thanks George, but I don't think I'll fit :)

George and his Books

The boy loves to read! I'm not talking a good night time story, I'm talking any time, any where, any book.

Still reading... just a different book...

... as the books keep coming, the pile at his feet gets bigger :)

Pretty sure he went through almost every book on the shelf... I have a feeling we're going to have to limit him to an hour or less of reading before bedtime.

Olivia and her Bubbles

"Bubble?! Bubble?!"
Olivia can spot a container of bubbles from a mile away... no ledge is too high, no bottle too small, she knows when bubbles are in the vicinity!

Not only can she spot them... she LOVES them!

I wonder if she has any idea how much I am amazed by her :)

No more bubbles, just a happy little girl with a frog "Bacon"!
Bacon is G and O's word for blanket... and I'm sorry Hannah (speech therapist), but I just can't bring myself to correct it. We run around searching for BACON!

Water for turtle was followed by kisses for turtle :)

Thursday, October 28, 2010

Four Years

I found the perfect anniversary card for DB... put simply, "My life is perfect... and it's all your fault!"

On our third anniversary we laughed - we had only been married three years and we had three babies - agh! This year we are still laughing, and wondering how so much joy manages to come out of so much craziness. I love my husband, I love my family, and I love my life. Things have certainly never been so exciting :)

Go figure, the day didn't go exactly as we had planned it... but George said "love you" at least 5 times today, Olivia had full conversations with all of her toys including hugs, and Samuel was a rock star using his fine motor skills on the great mushroom/toy/thingy we have. I can't lie, I had a moment of disappointment when some things didn't go as planned, but in the end DB and I didn't need the "perfect" day we had planned to realize what a good thing we have. Love you, DB!

The photos don't really match the post... except for the fact that I feel like I've been playing catch up ever since "the babies" joined us :) Ha ha! There is nothing better than a day in the backyard - this is the life that we love!

Beautiful Olivia - I gotcha!
She has not been smiling for pictures lately, but rather turning her back on the camera... but I can still catch her smiling when she's running or telling a story.

Samuel wasn't so sure about the grass under his feet at first...

... but it didn't take too long until he was stomping his feet and laughing!

George went shopping and got some sidewalk chalk...

... unfortunately he forgot it wasn't edible like most things at the grocery store :) He has a great blue goatee going.

Samuel and Olivia loved it too! Until Samuel took a huge bite of it on accident - he won't even entertain the thought of eating food, but he'll take a bite of chalk. Maybe we'll try some chalky tums pills instead of sauces and fruits and veggies! Nah, he was pretty unhappy when he was actually chewing on the chalk :)

Saturday, October 23, 2010

Sweet Music by Samuel

I have waited for so long to hear Samuel's voice... and he's finally getting a chance to use it! Before the passy muir valve, there was no sound when Samuel laughed, or cried, or tried to tell jokes... but now, even though it's only for short periods of the day, we can hear him!

With a trach, he breathes in and out of the hole in his throat... so no air, except for small leaks, ever comes out of his mouth. Which means, no sounds. The passy muir valve allows him to breathe in through his throat, but not out... it forces him to breathe out through his mouth. Which means, sound!

A big concern of the using the passy muir valve is CO2 retention... I swear, if I never hear those words again (CO2 retention) I would be okay. It's tough to breathe out of your mouth if you've never done it before, and if you're not exhaling fully, there's an even better chance for CO2 to build up then Samuel has already... just because he's Samuel :) But with all of his progress, the passy muir is becoming a part of our every day routine for about 30-60 minutes, 2-3 times per day. YEA!

Samuel is also getting more and more expressive each day... for example, yesterday he threw his first audible temper tantrum... and I loved every minute of it! Not only was he using his voice, but he was using it to show real, firm emotion. For the first time he really cared that I took his toy away (it was bed time, I wasn't just being mean!), and he was not happy about it. I sat there in complete awe as Samuel told me exactly how he felt... I wanted to freeze that moment in my memory. I actually thought about trying to take a picture of it, but I would have had to recreate the same scenario and that did feel mean - ha ha! Get this, when I tried to give him back the toy, he threw it down and pouted for at least another solid minute... go Samuel!

**Note to NICU and PICU friends - it's amazing, his real voice is so much different than his "vent voice"! I can't wait for you to hear it!**

Other tricks (otherwise know as skills) Samuel has learned: winking (it's awesome!), pointing, identifying his tongue and his hair when asked, playing peek-a-boo, smiling when asked, and clapping his hands. Clapping was the first one, and it's great for many reasons. It means he can express audible happiness even without the passy muir, and because he can purposely connect his hands midline, it means he has a great chance at sign language. Every day I think I'm maxed out on amazement... then tomorrow comes and I find out there is no such thing :)

Happy Clapping!

These are from early October when Samuel had just discovered his clap :) I think he likes it!

Go figure, the first time he really clapped we were sitting in the doctors office waiting for our turn... luckily we were already in a room so only our nurse Stefanie saw my watery eyes. Sheesh!

Oops, a bit off on this one... but I don't think he cares :)
Now Samuel loves to clap when he's happy... or to join in on applauding one of his siblings... or even better, to clap with George and Olivia when they are clapping. That's a lot of happy hands!

Direct hit this time!

Too funny, what the camera doesn't show is that when he was first learning to clap, Samuel somehow ended up poking himself in the eye with his thumb at the tail end of his clap. By now we have it figured out, but the first days we ended up with quite a few teary, but happy, eyes :)

Wednesday, October 20, 2010

Love/Hate Relationship

After many unsuccessful attempts at a creative, funny intro to this post... I give up. Here's the deal, Samuel got a wonderful new stroller/wheelchair in mid-August, specially suited with attachments to hold an oxygen tank, feeding pump, water bag, etc., with enough storage space to hold all his stuff - emergency bag, suction bag, diaper bag, and anything else he might need. The chair was specially made to fit Samuel, and he loves it!

I have a really hard time looking at it.

When Samuel rode in the normal double stroller, he was incredibly uncomfortable and it was impossible to go anywhere without two adults in tow because he has so many accessories. In his new stroller, he is so happy! Samuel is comfortable and I can take him for a walk just the two of us if I want to. YEA!

I wish he didn't need it.

The new stroller also has a tray that is the perfect height for him to play, play, play. And it's big enough to hold toys and books and his cup. His smile is a mile wide!

I don't like it. I look at that chair and I want to cry. I can't explain it. I'll try... just remember that this blog is very therapeutic for me :)

At home things are set up so that Samuel is just a normal baby... sure he has a few extra accessories, but we don't even notice them anymore. Sure his schedule is different than George and Olivia's, but it just feels like he is his own baby. Sure Samuel has some delays, but he's getting better every day. That chair reminds me that Samuel still has many hills to pedal up... that he isn't "just a normal baby"... that he does have special needs... and it breaks my heart.

Bottom Line: I love the chair because Samuel loves it... and I know that eventually it will be just like every other piece of equipment in our house and it will blend into the background. It is so great for my baby, and it makes him mobile, comfortable, and happy. Samuel's happy - I'm happy :) The chair has become part of the crew - ha ha!

A few of the photos from September :)

Yes, Samuel, we want you to use the spoon... but this isn't exactly what we had in mind. He thought it was hysterical :)

Who's the cutie with the mohawk? Oh, there he is!

Little girl and her dad :)

I think George is actually reading the book... just not out loud yet. ha ha!

Kiss from Olivia!

George and Olivia are completely into shoes... especially Dad-dee's :)
Too funny, lately they carry around whatever shoe they find and look for its owner... something like Dad-dee? Dad-dee? with a very concerned look on their faces until they find who the shoe belongs to.

This is either a sign that Samuel wants to read... or that he's going to be excellent at hide-and-seek!

One of our many outside play times - we love being outside!
George loves that Tonka!

Olivia, on the other hand, is practicing for both soccer and volleyball :)

Samuel loves soaking up the rays!
Lately, he has also started sitting in the grass and on the concrete...
and he doesn't hate it. YEA!
A perfect picnic for three :) Bring on the lemonade!

Saturday, October 16, 2010

Breathing Updates

No worries, George and Olivia are still breathing easy! Samuel, on the other hand, while he seems to be breathing a little easier, is still working on it :)

Samuel has been home nearly seven months! He first came home on February 23rd, but as you may remember, that didn't go very well... and neither did his homecoming on March 19th. But, since March 29th, it has been nearly seven months that he has been home with us. YEA! We have lots of follow ups with lots of 'ologists, but for right now we'll focus on the breathing... we see our pulmonologist about every three weeks, which is great because it offers a lot of opportunity for feedback and hopefully new orders from the doctor. The more opportunities we have for orders, the more opportunities we have to move forward :) Here's an overview...

(For a recap of the vent, trach collar, and HME, click here... descriptions and photos :) )

  • March 29th - on the ventilator 24/7, getting daily blood work to test for CO2 retention

  • April 6th - still on the ventilator 24/7, no new orders at appointment besides trying to keep him home :)

  • April 21st - still on the vent 24/7, orders to start trying the trach collar for 30 minutes per day. (Tried the trach collar at home back in February and it was a disaster so I was pretty nervous.)

  • May 11th - still on vent for the most part with short spurts of trach collar. New orders: if he tolerates it, start increasing time on the trach collar by 30 minutes every 3-4 days. Once at 4 hours, then try 4 hours in the morning and 1 in the afternoon - if he tolerates it, increase the afternoon by 1 hour every 3-4 days with a goal of 4 hours in the morning and 4 hours in the afternoon on the trach collar.

  • June 8th - on the vent for 16 hours and on the trach collar for 8 hours during the day; 4 in the morning followed by a 2 hour rest on the vent and then 4 hours on trach collar in the afternoon. New orders: as tolerated, increase trach collar by an hour every 3-4 days and try to cut out the rest on the vent in the middle of the day and get to 12 hours on trach collar. This is when we got orders for the HME :)

  • July 15th - still 12 hours at night on the vent, and up to 10 hours during the day on the trach collar, but can't quite get rid of getting a 2-hour mid-day rest on the vent. CO2 levels not good, so no new orders.

  • August 5th - same as July 15th... ugh. Until you focus on the fact that you're not going backwards... then I guess staying put it's not too terribly bad :)

  • August 31st - still on the vent all night and doing 10 hours on the trach collar during the day with a 2-hour break on the vent mid-day and on the vent all night (12 hours). BUT, at this visit, CO2 and base excess levels finally decent. New orders - try to be off the vent all day! YEA!

  • September 21st - off the vent all day and on the vent at night - 12 hours and 12 hours. CO2 still looks good... new orders: try to remain off the vent all day (on the HME) and to be off the vent every 5th night. AGH!!!! That means no switching to the vent for night time every 5th night! HME all day, and every 5th night try the trach collar (provides more humidity than the HME) instead of the vent.

  • September 21st - a second order, to try the passy muir (speaking valve) for an hour per day with no extra oxygen. I pretty much hit the floor. But I recovered with an "are you sure?" and a smile on my face :)

  • October 14th - the first order from 9/21 went well and Samuel was off the vent every 5th night... and his CO2 and base excess were great! New orders: to try and be off the vent every 3rd night! What about every 4th night? No clue... but every 3rd night, here we come! Actually, I was very hesitant about it at first, but then I took a deep breath, remembered how much I trust our doctor, and I jumped on board :)

  • October 14th - the second order from 9/21 did not go as well... Samuel loves his passy muir, but couldn't quite tolerate it for long periods of new time. New order: try passy muir three times per day for shorter periods of time.
  • There are lots of details not mentioned above... but I needed to see this overview. In the last month I have had a lot of exciting, bowl-me-over moments, but I also have lots of moments when I feel like progress is not happening, or like it's taking too long. But this reminds me it's only been seven months since my little man has gone from completely vent-dependant to now, being off the vent all day and every 3rd night. Wow. Yes, he still has cords and contraptions that help him breathe, but this is the same baby I couldn't walk more than 5 feet with seven months ago unless I was dragging the vent. Unbelievable. Go Samuel!

    Some catch-up... even though I missed blogging, we still took photos :) Late August...

    Sleepy Samuel literally falling asleep in DB's lap...

    ... yep, he's definitely asleep...

    ... now he's sleeping and comfy, too :)

    Happy dance in my chair!

    What's up camera?! Did you get a good picture of me and my chair... I love this chair!
    (We have to watch him closely, Samuel isn't close to ready to sit in a chair unattended, but he really loves it!)

    Finally, the box arrived...

    ... it's a dump truck! For DB?!

    For the babies, DB assures me :)

    Turns out the bubble wrap in the box was a huge hit! Most photos were blurry from babies swishing around bubble wrap and laughing hysterically :)

    DB and George hangin' out... sweet boys.

    Olivia, just chillin' :) This girl cracks me up.

    I love the couch! Bouncy, bouncy!

    Cheese! Samuel's a happy kid, but I'm pretty sure these were also the early days of learning to smile on cue. Ha ha!

    Hairdo entirely by Nutella. Yes, really. Ew!

    The official introduction... Samuel, this is Scout... Scout, this is Samuel - love him, but don't get any hair in his stoma!
    I finally caught my little girl on the piano...

    Go figure, the wild child appears tame on the paino :)