Where to start?!

Where to start?!  It's been entirely too long since I've blogged, and not for lack of material, our house has been just as crazy and wonderful as ever!  I'm not sure why... I think it might be a combination of things... or maybe I just needed some good sit-on-the-couch time :)

I've had a lot of ups and downs lately, kids health is fine, I'm talking emotionally.  And, I think I'm having a tough time organizing my thoughts.  I know, sounds silly, this is the healthiest and I'm pretty sure happiest my kids have ever been, which of course also means DB and I are thrilled!  Maybe I've just had more time to think?  Maybe more specifically to reflect?  Sometimes when things get really busy or overwhelming you just go, you just do... so maybe now that things are a little more predictable my brain is in overdrive.  I don't know, it's a theory.

Don't get me wrong, we're still busy :)  Of course weekends are fun, but now we're on a much better daily afternoon schedule so I get more time with the kids.  In addition to outside play and visiting Omi at her office, we also run errands together (all four of us), at least three times per week (Julie, do you love it?!).  Their favorite is the grocery store due to it's race car themed carts, in fact we've had a tantrum or two when we pass it and don't have time to stop.  Hilarious! I love the smiles I get as folks pass my cart filled with three kids, and of course the comments about what a crazy parent I must be to take three 3-year olds to the store :)  I guess it's all a matter of perception, a little over a year ago I craved the day I could take Samuel to the store without oxygen and fear of someone touching on him.  So, three babies with no oxygen seems manageable... most of the time.

My other theory is along the same lines of my brain being in overdrive, but stems from Samuel's new schools.  The last month has been incredible!  The timing of switching to the new programs was lined up for exactly when Samuel was ready - amazing.  He is doing so much!!  Talking more, babbling, making choices, following directions, and even biting into crunchy foods!  Of course, the food is crunched then spit out immediately, but hey, it's huge progress!  All of this has my brain whirling... what else is out there that he's ready for?!  How do I incorporate some new things that are working at school into our home routine?  And of course the ongoing question, are we doing everything we can?  That answer never quite feels like 100% yes... sigh... is that a normal parent feeling?

That's my babble for today... it's where I am, it's how I'm feeling, it's part of our story.

Another part of our story is being outside!  A few photos from a park visit a few weeks ago... okay, maybe a few months.  Man, I'm behind!

 Daddy and George trying to take a photo together :)

 Omi and Samuel taking a stroll.

Mommy and Olivia shooting the breeze.

Communication 101

A quick post on one way my mostly non-verbal child communicated with me last week :)

On Tuesday Samuel had surgery, no worries, all is well and he is healing beautifully!  I tell you this because I want to be sure it's noted there is a reason I was giving him pain meds - ha ha!  They sent him home with some Tylenol with codeine, the good stuff :)  He stayed home from school Wednesday, then, because he's a rock star, went to his Thursday morning class and home with Rachel for the afternoon.  I debated giving him the pain meds on Thursday morning, but thought what the heck, surgery was pretty painful and it's his first day back at school.  Plus, they didn't seem to affect his energy level or happiness at all... seriously, at all.  One last dose for his first day out and about, go for it!

Here is the play-by-play of how I was rewarded for that decision...

Samuel gets lunch around 11:30, and then down for nap... I go in around 2 because I hear him stirring.  Hi sweet boy!  Love and kisses, then straight for a diaper change, apparently sleeping makes you pee more.  Change the diaper, stand him up... something seems different but I can't put my finger on it.  OMG there's no gtube button sticking out of his belly!!!

Frantic-ness sets in... how did this happen... where is the gtube... how long has it been out... holy cow, not another surgery.  That's right, once the gtube comes out, the hole starts to close, so if it's out for any significant period of time, then it's surgery to get it put back.  There's no magic time frame this can happen, just depends on the kiddo.  And of course, since Samuel gets no nutrition through his mouth, the surgery to get it put back in would have been right away.  Oh no my friend, not today!

The old tube is nowhere to be found, so I find the replacement gtube and start pushing.  No, probably not protocol, but after a while, it works :)  At that point I was happy for the meds still in his system.  I test it, it's definitely in place... whew.  Frantic-ness starts to decrease... now back to my original questions, one of which being where is the gtube and how did it come out?  Not in the bed, not in the blankets, not under the mattress, not under the bed... oh, wait, yep, under the bed.

Here's the kicker, and why I knew the pain meds had to go... it was still fully inflated!!!!  Seriously, the kid has never pulled it out before!  Any time it's come out, it's either caught on something or the balloon had issues and deflated, but self inflicting this just makes me cringe.  Guess someone was trying to tell me that the pain meds needed to go :)

Here are a few photos I found to illustrate...

This isn't actually Samuel's belly, but for describing a gtube, 

might as well be... we have the exact same gtube.

This is the entire gtube... that's it, all of it!  Seems so simple, I know!

So you can see from the belly photo above which part is outside the belly (the part between these fingers), and below is simply a tube and a balloon.  The balloon is what holds this thing in place.  To get it in, simply deflate the balloon, put it in the hole, then inflate the balloon and wah-lah!  You have a gtube.  

That said, you might understand my confusion and wincing when I realized Samuel pulled it out while the balloon was inflated!  Ouch!  Crazy kid, I love that guy :)

These photo have nothing to do with the gtube coming out, just some cute photos from a speech therapy session at ihop I've been meaning to post :)  I suppose speech therapy/learning to eat and gtubes do have something in common, ha ha!

 I think someone likes therapy :)

 But, not necessarily eating... this is totally the "what's that over there" move to try and divert attention.  Too bad mister, we're on to you!

Someone found a friend!

New Places and Faces

We are one week into our new schedule... which means all new schools, caregivers, and teachers for Samuel.  What a great week it has been!  I mentioned my anxiety a few posts ago, and this week has gone even better than I could have hoped.  Samuel has handled these huge transitions so well!

A few photos pieced together to show you Samuel's new days :)

 First day at the local program just for kids like Samuel... and he loved it!

He was smiling from almost the second we set foot in the classroom until he left, with brief pauses for things like me taking this photo and when I left.  But they were brief!

 On his way to the lunchroom for morning snack with his class.  It's so wonderful, the three women who teach these kiddos are so good at what they do.  There is also a lot of time when they break into really small groups, because the ages and abilities are so varied.  For the most part, Samuel's group consists of two girls and one other boy.  The four of them are just begging to be squeezed :)

This program is from 8-11 Monday - Friday.  On Monday Rachel picks him up after school and heads off to PT, ST, then OT.  Whew.  Tuesday - Friday Samuel heads from his school to George and Olivia's school!  I wanted to cry the first day, and every day since then, knowing they are together!

 The bus brings him from one school to the next, and Samuel is like a celebrity :)  All activity ceases on the playground for garbage trucks, fire trucks, and of course school buses.  Samuel practically runs from the bus to the gate!

GREAT group photo to insert here, but wasn't sure other parents would be okay with it... boo.

Samuel gets there just in time for lunch... luckily everyone was looking away from the camera so I could post a photo :)   For now, he has a shadow who stays with him at George and Olivia's school.  She has been wonderful at both taking care of him and helping him to stay on task!  What I mean by taking care of him, is she does the gtube feed, gets him settled in for nap (even though he never sleeps), and makes sure he's getting what he needs.  While the school has a wonderful mentality that Samuel being there is good for everyone (very research based, I love it), we also wanted to be sure that he was getting what he needs and getting used to his new school without taking up all of the time of one of the teachers.  After a month, we will re-evaluate to see if a shadow is necessary :)    

 Getting to this school right before lunch is perfect timing!  Samuel gets to sit with a group of other children who are all eaters, and practicing family-style dining and serving themselves for the most part.  What a great learning experience for him!  Who knows, maybe he will be eating cake next year :)

How sweet was this, the school waited to celebrate their birthday until all three kiddos were there!  The class made great cards with hand prints and names, I completely see them framed in the kids room.  Cupcakes were included in this celebration, hence the sitting outside - so smart!

Off to the classroom!

From there comes nap time and then free play, including lots of time outside.  It is a great time for Samuel to both play with his new classmates and gain independence :)  His new friends have been so good to Samuel - they're excited that he's there, they help him, and they include him.  He is grinning from the time I drop his off until the time I pick him up, we couldn't be happier!  Another big step for my guy!

Three 3-year olds!

Happy Birthday #3!  Oh my goodness!  How has it been three years????

Things I did wrong on their birthday... never slowed down to make them pose for a group shot.  Never slowed down to take a family picture.  The good news, both of those can totally be re-created :)

Things I did right... went out on a limb and invited George and Olivia's entire class.  Rented a bounce house.  It was an awesome day!!!  The kids were thrilled to have their friends over, and slept incredibly well after a day of bouncing :)

Something the other parents at the party mentioned... of course the kids loved being together, but it was also nice because the parents don't know each other well, so it was fun for us to get together!  Plus the weather couldn't have been any better so it was a great day to hang out outside.  I'm hoping they all had the same nap success I did :)

Something the folks at the party probably didn't know... and maybe part of the reason I had trouble slowing down (as mentioned above)... was that party was so much more than a celebration of 3-years for us :)  My babies have made it to three!  I hate that their start was so rough, but look at them now.  Who knew?!  They amaze me every single day, and we feel so lucky to be their parents.  I can't imagine life without them, they make everything better, including me.

Plus, not only is this the first party we've ever actually invited kids to, there were just as many kids as adults :)  My Samuel is getting healthier!  At their first birthday, Samuel almost didn't make the party and then had a horrible next day... at their second birthday, we were psyched to all be home and he did much better, but was still very medically fragile... what a great third birthday!  Maybe by his fourth birthday he will eat some cake?  Can't hurt to hope!  (If he is eating anything by his birthday next year, mark my words, I will find a way to make it into a cake!)

A few photos from the day...

Direct quote when I ordered the cake: I would like princesses and dump trucks, please.

Presto!

The main event - who knew one thing could bring so many hours of bouncing happiness?!

They dropped the bounce house off a few hours early due to a busy day for the rental company... I kept the kids content inside for a while, but the bouncing was irresistible!  These three little monkeys had so much fun!  At one point I thought they wouldn't even notice when their friends showed up, but I was wrong :) 

Samuel enjoyed the bounce house, but was also happy to hop in his absolute favorite thing... one of his favorite words, too... swing!

Time for cake!

Happy Birthday to you, Happy Birthday to you...

...Happy Birthday Olivia, George, and Samuel...

...Happy Birthday to you!

Look at my babies surrounded by their friends :)  LOVE IT!

And... back to bouncing!  

Until they just couldn't handle it anymore - ha ha!

These are whooped kiddos :)

Except this guy!  I swear he spends nap time making up for lost time (awake!).

Qualified for Change

Last week I had the final of four meetings, evaluations, reports, etc. regarding transitioning Samuel from BabyNet (our state's early intervention program for kids birth-3 years) to Department of Special Needs.  Oh My Goodness, they will all be THREE next weekend!!!!!

We transitioned George as well, since he still received physical therapy, but as you can imagine, it was a much shorter conversation.  Actually, now that I think about it, I'm pretty sure I could summarize all four meetings about George and the specialists findings in the amount of time it took me just to tell Samuel's medical history - ha!

Long story short, Samuel qualifies for services (OT, PT, ST, etc.) and a special class... George does not... and of course Olivia wasn't in the mix because she graduated all therapies months ago, yea!  No big surprises there, the story is more about what comes next :)  Samuel's entire schedule is about to change.  AGH!  Since he came home, any time we weren't there, Samuel has been cared for almost entirely in our home by trained professionals.  For the last six months he has been attending a medical daycare twice per week.  Starting the Monday after he turns 3, Samuel will be going to a school (the special class I mentioned above) for three hours every morning five days per week, and then joining Olivia and George and their class in the afternoon.  Yes, I get teary every time I think about him being with his brother and sister!  We are so excited!

The special class I mentioned, not only is it local (no more four hours in the car twice per week!), but it is awesome.  I feel like I should write about it now, because like the school I love that we're about to leave, I've had some anxiety with the idea of change.  It's kind of ironic I have so many issues with change... me, who moved across the country hoping to find a job (I did :) ) and moved another time to a new state where I knew nobody.  Not that those qualify me as a risk-taker by any means, but I feel like they do show I'm up for new things, right?  :)  I know this anxiety about change is different because it's one of my babies, I get it.

Getting to be with George and Olivia and their class is just amazing for Samuel.  The school has been truly incredible and they really understand how great this will be, for everyone!  Samuel will have a shadow the first month, while we figure out if he needs that for the long term.  Besides that, he will be right there in the mix for lunch, nap, and afternoon play.  We have visited multiple times in the afternoon, and the other kids are so warm and welcoming of Samuel.  Hooray! 

Why the anxiety?  I've met the teams at the new schools multiple times and am completely comfortable and really like both of them.  Samuel will now never be more than 5 miles from me.  He is going into both of these new schools with full disclosure to both staffs... in other words, they know what they're getting themselves into :)  Samuel is a happy, funny, smart boy, who can hold his own.  So, why???

Truth be told, I'm sitting here trying to write down why... and either I just don't know, or I can't find the words.  Neither seem very like me, ha ha!  I'm sure part of it is that this will be the first time Samuel has been cared for outside of a medical facility or our home, I know that's part of it.  I know he is healthy enough, but it's still a very strange feeling to finally be sending him into the "real" world, a place where they don't have extra O2 sitting in the corner, and write medical notes about his every move, and gtubes aren't the norm, and know how to care for a trache... but wait, he doesn't have a trache anymore.  Maybe he IS ready  :)  I know he is!  And so do these teams of wonderful teachers and specialists.

I think another part must just be good old fashioned protective mama stuff.  I want things to go well, I want Samuel to be understood by his teachers, I want him to be encouraged to keep growing... I never want him to think he can't do something.  I want Samuel to have fun and learn and make friends... I want this to be the right decision.  That's a big one, the right decision.  I struggle a lot with knowing what the right decisions are, when truth be told, I know there is no one answer because every child is different.  That doesn't help much, ha ha!  I love my boy and I want the best. 

I know this change is good, but saying goodbye to good things is difficult.  We're not leaving our old caregivers because they weren't a good fit for Samuel, they have been amazing.  We're making changes because this is the next step in the great adventure.  The last six months have been full of growth and development, and I can't wait to see what the next six hold!

Bye Bye school!  

We won't miss the long drives to get there, but we will miss the people.  What a wonderful team of nurses, therapists, and caregivers!  Samuel will also miss his best buddy... his first friend :)  The last four days he was there, Samuel spent a little too much time walking around and saying Cabell's name!  I know they're only 3 (almost), but I hope they're friends for life.

Bye bye Sherry, see you Monday!

Well, actually...

... what do you mean you aren't here Monday?  Are you going on vacation? 

Sherry has been Samuel's home nurse since March, 2011, and we are so thankful for her!  Part of me is glad Samuel doesn't understand, because I know he would be tearing up right along with me.  Goodbye is so tough, especially when you see someone who not only takes care of your child, but really cares for them.  It's been a crazy last couple years, and we have been so blessed to find two women who were each willing and able to be full-time with Samuel... Stefanie for the first 11 months, and Sherry for the last 11.  The care for him has been seamless!  And, they have both loved my boy :)

Thankfully, the last 11 months have been less medically involved than the first 11 months Samuel was home, mostly due to no trache :)  But, nothing has slowed down... we've still caught scary sicknesses, we averaged 6-7 therapies per week, there were numerous follow up phone calls and appointments, coordination of home medical supplies, etc.  And of course DB still a full-time teacher and me working part time.  I don't know how we would have ever managed the last 11 months and provided Samuel with everything he needs without Sherry!  And beyond that, as I mentioned before, it has been so much more than just care-giving... my boy has been with someone who cares for his future and works with him on everything.  Yes, we are incredibly blessed!

Humorous

This past weekend was humorous, especially after my post less than two weeks ago about how the germs were gone!  See where this is going?  It was either laugh or cry last weekend, and there was no time to cry, that would have required at least a minute to grab a tissue, and I only had time to grab a bucket.  Ew.

Overview:

• Thursday - Samuel gets horrendous diarrhea (he can't throw up because he has a nissen, so we think sometimes this is his outlet).
• Friday, 7am - DB leaves for brothers weekend - yea!!!
• Friday, noon - I get a call, Olivia is throwing up at school.  Luckily Samuel's nurse was able to work that day, we certainly couldn't send him to school is his current state, so I left work to pick up O.  She actively threw up every 30 minutes for the rest of the night, including on the car ride home.  But wait...
• Friday, 2pm - I get a call, George is throwing up at school.  This is the point that I actually laughed out loud :)  You've got to be kidding me... I can't take the two at home anywhere, besides there is still throw up in the car from my last trip.   DB in Florida, Omi at least an hour or more away, luckily Rachel (my kids BFF/nanny I've mentioned before) was just getting off work so she went to get G.  Hooray!  Then he threw up on the way home.  I'm so lucky Rachel loves my kids as much as they love her :)
• Friday, 4:30pm - I get a call, Sherry, Samuel's nurse who left a few hours earlier, has this darn virus too.  Ugh oh, it makes adults sick too?!
• Friday, 5pm - I get a call, DB is sick on his trip.  Ugh.  Hasn't seen a hockey game in four years, and on the way to one with his brothers, and with great seats nonetheless, it hits him.  Let's just say I feel bad for the parking lot.  No hockey game for the boys.
• Friday, 10:15pm - The last child throws up, yea!  Of course I didn't know that at the time - would have made the night less stressful if I had, but it was great because...
• Friday, 10:30pm - No need to call anyone, it hits me.  Although I still maintain that I did NOT get sick, it was simply sympathy nausea that turned into sympathy throw ups.  Ha ha!

Oh my goodness, I've heard of a house full of sick kids, but I had never experienced it!  Insane!  Although honestly, I felt the worst for DB.  Good thing is that while this virus was powerful, but only lasted about 12 hours, then recovery began.  DB was able to salvage the weekend with a posh movie experience and a trip to the beach, and I was allowed to recover with much assistance from Kristen and Omi... they are saints, which is apparently why the virus didn't attack them ;)  Although that doesn't explain why both Sherry and Rachel got it, because in my book they deserve gold stars too.

Had to record this in my "baby book"!  A memory I'm sure to remind the kids of when they're older :)

Our sickness set up... carpet covered, bucket and paper towels ready... bring it on!

I love that Samuel is holding court with Chicka chicka boom boom :)  Ha!

Um, Charlie and the Chocolate Factory or what?!

I have no idea how this "garage" is standing, but I fear for the trash truck!

Kristen built this with the kiddos, and Omi and I stared at it in amazement for what seemed like hours before someone finally knocked it down :)

Visit from Mo and Do

As usual, it was great to have BB's parents in town!  They came for 10 days of Christmas :)  We are spoiled to have DB's mom living near by, and it makes me so happy when we can have my parents here, too.  It's also been fun to see how quickly they warm right up to Mo and Do (almost immediately)!  Through skype we've managed to get in some good face time, and the kids are older now and just remember more :) 

The house they were staying in (which is so incredible!  Great story of wonderfully kind and friendly people) is only a few blocks from us.  I had a morning with my mother, and there were a few mornings Mo and Do went for an exercise, but for the most part they were fixtures at our house during their visit.  It was great!  They were able to go to Samuel's school one day, check out all the kiddos weekly therapies, and had lots of down time to just be with the kids.  It was wonderful.

A few of the fun photos :)

One from Samuel's school...
on the day they opened some Christmas presents :)