Friday, January 20, 2012

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!

Monday, January 16, 2012


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.

  • 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 :)

Sunday, January 8, 2012

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 :)

Saturday, January 7, 2012

Can't Keep Us Down!

We had a little bit of a damper, just like everyone else I talked to this season, our house battled it's share of sickness.  Olivia got a quick 24-hour bug, not fun, but quick, there's something to be said for that :)  Not even enough time to find humor in the situation and snap a photo, sheesh.

George was hit a little harder, with a sickness that lasted about a week.  No real fever, just some little spikes, but he was completely "mushy," with no energy, which is very NOT George.  Poor kid even missed school for three days, but we were very proud of Olivia for going on her own :)  That's a big deal!

Passed out... sweet boy.

Back to normal and ready to go!

Unfortunately, Samuel was hit the hardest and has been on oxygen since December 24th... until today!  Hooray!  The crazy part was his virus seemed to be the easiest, the least difficult to handle... no fever, no "sickness," but it kicked him straight in the lungs and hard.  On the morning of the 24th we woke up to a boy with o2 sats in the 60's, which is enough to turn a person a light shade of gray.  (Typical o2 sats are high 90's.)  He looked awful, and to be honest, I was a mess... it brought back way too many memories.  We started the o2, got to the pediatrician and spoke with our pulmonologist, and got on some steroids and extra albuterol nebulizers. 

Due to our home equipment and experience, Samuel got to come home!  This was a huge relief.  As I've said before, the hospital is where all the germs live.  Plus, I just knew we could keep Samuel stable at home... lucky for us our pediatrician and pulmonologist agreed.  I cried again on the drive home, this time happy tears :)

You may have noticed the oxygen tubing in some photos, but don't worry, things are headed in the right direction :)  It's a tough reminder that my boy's lungs are still pretty bad... it's been so long since we've been on oxygen we almost gave all the tanks and concentrator back but decided to wait until summer.  Good thing!

Back on o2, with some additional meds to help Samuel breathe easier, he was smiling by that first afternoon back on oxygen :)

Nothin' can keep this kid down! 
Of the 15 days he was on oxygen, besides the first two, you never would have guessed he needed the extra o2.  Amazing.  He was so good about keeping that darn nasal cannula in, and even figured out how to put it back in his nose (almost) when I caught him taking it out :)  He was still the happiest boy, running and squealing with delight!

Monday, January 2, 2012

Year End Benture

We spent the last day in 2011 doing one of our favorite things... on a Benture!  This was a new one, we've spent plenty of days at Hunting Island, but this time we strolled down a back path for about 25 minutes rather than just parking near the sand.  It was a beautiful day!

 Someone is excited about our adventure!

 DB offered to push... BB did not object :)
Due to the season, our walk was not only full of laughing and thorough inspection of our surroundings, but sporadic Christmas songs from the kids. 

 Love that Samuel swagger!  The faster he moves, the better the swag :)
Feeling a bit better, he was able to come off his oxygen for about 30 minutes, yea!

 DB's at it again!  Look familiar?

 Late afternoon at the beach makes for excellent shadows.

 Bird impersonations :)

 Really?!  Acting like birds?  Ha ha :)