The Three Musketeers!...

It's just Gavin, Brian and me during the day this week!  The original Three Musketeers!  Our lovely Miss Sara is on a well deserved vacation with her parents. Everyone knows we LOVE Miss Sara - and she is a HUGE help every day - but it is also nice to be alone in the house with my children.  I'm used to always having "company," so when I have a stretch of time alone...I love it.  It's hard not to feel like you have an "audience" - no matter who it is in the house with you.  When I'm alone, I seem to get so much more done.  It's hard to explain.  Plus, I'm looking forward to not sharing these little boys with anone this week.  Teacher, therapist, helper... ANYONE!  Especially Gavin - I shared him enough in the hospital last week.

So this week, Mommy and Gavin and Brian are on a little *Staycation* - and we're so excited.  If we wanted, we could stay in our pajamas all day.  Every day!  We could watch TV all day! We could have ice cream for lunch and dinner!  We likely won't do any of these things.  But we COULD - and that's the point!

Brian had a big day.  We had started potty training in July - but then we went on vacation and never got back into it.  Today was the day to start again and we went for it.  Brian wore his Angry Birds underwear all day.  He had two little accidents, but was super-successful overall!  He was really proud of himself.  Earlier this summer, he was getting a sticker and some Angry Birds fruit chews each time he went on the potty.  I put the 'kibosh' on that.  I told him that was what we did in July.  But now it's August and he's older - now he just pees and poops in the potty because he is a big boy.  He doesn't need presents each time anymore.  I said all that and then held my breath.  He bought it.  Whew!

We had a fun time building train tracks for much of the afternoon.  For a while our train table was used for other toys - but suddenly he's had a resurgence of interest in his train set.  It's very addicting, I have to say!  And mesmerizing.  He was so distracted that he had one of his accidents while we were playing.  Oh well - no biggie.

Gavin had a great day, too.  He fed himself the majority of the day and each bite was just as impressive as the last.  I also made him walk everywhere we went.  He can really motor when he wants to get somewhere!  He was extremely jealous of Brian's bathroom activity - he loves to sneak in the bathroom when the door is left open and splash in the toilet, unfortunately.

Gavin and I both ended our run (pun intended, I'm sad to say) on our antibiotics today.  Gavin for his hospital acquired pneumonia...and me for the Lyme diagnosis.  Gavin has been struggling after every meal since the first meal in the hospital with loose stools.  The antibiotic was just tearing him up. I was hoping the cup of Kefir I give him every morning would help - but it isn't enough.  So tonight Ed and I took the boys to Whole Foods and I bought a stronger Probiotic Kefir with an astronomical amount of live, probiotic cultures in a very small serving.  I can actually give it to him in a syringe.  I'm hoping this will do the trick.  It tastes great, which is a bonus!

The two of us will share the bottle.  I don't have the same problem as Gavin, but I have had some very unsettling symptoms for the past few weeks that I'm thinking may be from the antibiotics I was taking.  One symptom is very tender skin that looks and feels sunburned.  My arms and scalp are the worst.  My doctor had me tested for Lupus (for that and a variety of other reasons) which today came back negative, thank God.  So I'm hoping that being off this antibiotic and re-growing the flora in my body will make me feel better.  What a crazy road this has been!

Simple Times...

We have a pretty boring life.  I mean that in the best possible way.  Ed and I are homebodies and we get excited doing simple things - like taking the boys to the Toy Store on a Friday night or going to the grocery store as a family.  It's okay to be jealous of our Hollywood-like lifestyle.

During really tough times - like the past week when Gavin was in the ICU - I am even more grateful for our blissfully simple life.  I would lean down and whisper in Gavin's ear - "Soon this will all be over and we'll be strolling around Wegman's and picking out a balloon for you."  It's easy for me to transport myself home when I'm not.  I envision us all in our pajamas laying in the play room.  I can see us waltzing around "The Christmas Tree Shop" (which is like a fancy dollar store - or maybe a five & ten dollar store) buying all kinds of things we didn't realize we desperately needed.  And trying on hats - we love to try on hats.

So this weekend, that's what we did.  A bunch of silly stuff.  Friday night we took the boys to Toys r Us. So many toys need homes and we're there to help in any way we can.  Then today we headed, where else, to The Christmas Tree Shop!  Brian and I giggled as he tried on hats.

Then we went to Wegman's for lunch - which was quite a simple treat that made the boys so happy!

We're always happy just to be together...even if we're doing little to nothing.  When you've been through some pretty traumatic times like we have - you appreciate and long for the simple times so much more.

This weekend I also had a chance to dress up and do something fancy!  My Mom and I attended the 50th wedding anniversary of good friends of the family.  Dr. and Mrs. Roeder have been great friends of my parents for years.  I was so happy to be with my Mom as we celebrated this milestone with them.

It was a bit of a surprise when they called the Roeder's up to dance to their wedding song - and it was my parent's song.

"I'll Be Loving You, Always"

In that moment, I knew my Dad was there with us...holding my Mom's hand.  

No Turning Back...

This morning we met Gavin's new teacher, Miss Megan!

Gavin's service coordinator, Jessica (who has been amazing to us for the last two years!), arranged for us to have a private tour of his new classroom and meet with Megan.

I have to say - I was so, so impressed.  The classroom is huge - especially since there will only be five students in Gavin's class!  There's plenty of room for walkers and wheelchairs and toys and tables - it's very spacious.  Megan's still moving in, but it's already filled with lots of great toys and activity centers - an area for circle time and sensory activities - and plenty of windows which makes the room so bright and happy.  There's also a private little bathroom for the kids right in the classroom so they can work on toilet training!

Here's a photo tour for you...

Megan and Gavin hit it off right away!  One of the tell tale signs that you're "in" with Gavin is when he touches your face around your mouth.  It was so comforting to me to see him do that to Miss Megan. 

Even though I "corrected" him for swatting her face, I secretly was so happy that he expressed himself in his own way.  I could tell he liked her.  And so did I!  But I didn't swat her face, don't worry.  I figured that might have been awkward.

I saw many familiar toys around the room - and some things that Gavin recognized from his therapists.  Like these colored ribbons that Janna used for color recognition.

I'm hoping that I'll find toys around the house that I can donate to Gavin's classroom.  They are specifically looking for cause and effect toys.

Brian had a lot of fun exploring his big brother's new school!  He investigated every corner and every toy.  Jessica even sat with him and they did an art project with Dot markers - one of Brian's favorite things!

Gavin's first day will be Thursday, August 23rd.  Miss Sara is very excited to accompany Gavin as his aide and buddy - and so are we!  The school hours are from 8:55am - 3:25pm, which is a very long day.  Too long for Gavin, in my opinion!  I want to ease him into that long of a day.  It's perfectly acceptable to pick them up early, I was told, so I plan to do that probably right after lunch.

 We don't have the bus schedule yet - but hopefully it won't be too early of a pickup.  The school is exactly six minutes away by car!  All five students and their aides (if they need them) will be on the bus together. I spoke with the transportation company and they assured me that they have everything they need to tie Gavin's wheelchair down and strap him in properly.  And they'll pick him up right at the end of our driveway!  She also told me that we're all welcome to come visit the bus depot and get acquainted with Gavin's actual bus before the first day of school.  I think we may do that - it could be fun for the boys!

It's all getting very real.  As soon as we got home, Miss Janna and Miss Maggie arrived for Gavin's final IEP in my house.  All of Gavin's therapists wrote goals for him as he "graduates" into his new school...and one of them he already met just recently!  Feeding himself!  I'm really confident in my decisions to keep Gavin home until now - and send him to preschool this Fall.  This blog is going to be blowing up with entries about breakthroughs...and progress...and new friends.

There's no turning back now!

The End Of An Era...

Today was a huge day.  A victorious day.  Today marked the end of Gavin's in-home therapy.  For the last almost five years, I have had therapists in and out of our home on an almost daily basis.  Along the way we learned so much from them and they, in turn, learned from Gavin.  Each of these therapists invariably became our friends...confidantes...and Gavin's greatest cheerleaders.

The past week with our very sick boy in the hospital really threw me.  I couldn't pull together a more celebratory...more enthusiastic ending.  I'm planning a party for all of Gavin's therapists so we can thank them properly.

Gavin's last two home therapies were with Miss Janna and Miss Maggie.  Gavin and Miss Janna have had an obvious love affair from the very first day.  

I loved watching him with her - it was like he was flirting!!

  

Janna is a wonderful teacher and it's not lost on me that Gavin successfully color matched several times and allowed her to work hand over hand (something he usually hates!!).

She even had him holding markers this year to draw.  You know how some people are just born to be teachers?  They have endless patience and the sweetest personalities?  That's Janna.  Gavin is definitely going to miss her.

Miss Maggie followed right after Miss Janna - and they both presented Gavin with the sweetest "goodbye gift!"

  

Both of them used bubbles all the time in their sessions with Gavin, so it was perfect that they gave him a very cool electric bubble machine!!!

And a very thoughtful note as well...

Maggie has been a wonderful speech AND feeding therapist for Gavin.  It's a hard job to be his feeding anything - but Maggie never gave up.  She worked hard to introduce new textures and experiences and was always coming up with new ideas.  Gavin fought her nearly every step of the way, but she hung in there - learning every one of his favorite songs...playing games...and putting up with me hanging all over them taking pictures.

She worked hard with his iPad, too!  Gavin definitely made a ton of progress with requesting things on his iPad this year.  Maggie had such a nice way with Gavin.

She's a wonderful speech therapist AND a wonderful person.

I feel lucky that we're not really losing her!  When school resumes for Brian at the end of August, she will continue to be his speech therapist.  As many of you know, Brian's speech progress has been remarkable thanks to Maggie!

Over these last four-plus years, people have asked me "How do you stand having people in and out of your house every day??"  The answer?  I loved it.  It was my choice...and I'm so glad I made it.  Gavin was in his own home...I was right there to learn along with him...we all could bond with his therapist...and we made friends in them.  I feel indebted to all of the wonderful women who have walked in and out of my house and cared for Gavin like he was their own.  

Tomorrow morning we will be touring Gavin's new classroom and meeting his new teacher.  It will be the start of a whole new chapter for Gavin...and a whole new BOOK for me.  A book with chapters like "letting go" and "giving up control."  I think he's ready.  We're both ready.  I think.

Today marked the end of an era.

I'm looking forward to the next part of my journey as his Mommy...

Take A Bow...

Today was Brian's "last day of school" party and there was no one that was happier than me to be there!  It was one event that I swore I would not miss - whether Gavin was still in the hospital or not.  I couldn't disappoint Brian on this very special day!!  Tomorrow is his last day before a three week break.  He'll go back on August 23rd to the same classroom with the same teachers...and many of the same classmates!!  This classroom and his teachers, Miss Laura and Miss Morgan, have been so good for him.  He's blossomed in so many ways!

We were told to send him to school in his bathing suit - they set up sprinklers and a water table and a kiddie pool as part of the party!  Brian ended up not swimming.  He was attached to my hip (which is how he's been since I got home) and holding my hand the entire time.  He didn't let me out of his sight.

The class had been working hard for weeks to put on a show for all of us.  We all filed into the auditorium and I was, of course, in the front row with my camera in one hand and my phone in the other - stressing about the poor lighting conditions.  I was on the edge of my seat when Miss Laura announced each of the performers.  Brian made such a dramatic entrance (click below to see).  I had high hopes for this stage performance!

Brian spent much of the performance hiding behind his claps.

I started to panic.  If I'm to keep his sweet face far away from any contact sports - I really need to work on his stage presence.  I see theater boot camp in our future.

In all seriousness, it was hard not to cry as I watched Brian on stage.  Simply because I can't believe I'm watching my own child do something so independent.  That he's old enough to walk - let alone stand on a stage and (kind of) remember choreography and songs!

After the show, we went back to the classroom for special cupcakes that the kids help to make!

If you remember when Brian first started in this classroom, a little girl named MacKenzie befriended him.  As you can see, they still have a "thing".

It was so fun to spend the morning with Brian at school.  For both of us!!

This afternoon was a little sad.  It was Gavin's very last Occupational Therapy session with Miss Stephanie!!   

She has been such a big part of Gavin's life (and progress!) for the last two years.  And she's become a friend, that's for sure.  This wasn't the way I intended the last week of therapy to be - so I'm planning a party for all of Gavin's therapists so we can have a proper goodbye - and thank them.

Gavin's come such a long way since Stephanie started.  He really connected with her which I think is half the reason why he did so well!

The other half (which is way more than half, really) is her exceptional OT skills.  I loved her ideas for Gavin - her approach - the creative activities she came up with.  Gavin started doing things with her that I wasn't sure I'd see for a long time.  Like picking up little objects and placing them in containers!!  And - the biggest accomplishment of all - feeding himself.  I am so grateful to Miss Stephanie for pushing Gavin (and me) to start feeding himself.

We love you, Miss Stephanie!  And we'll miss you so much.

Gavin is doing well at home.  He has been extremely exhausted (as have I!) and has wanted to be held a lot.  It's been a bit of an adjustment for me - especially last night - to not have my eyes on him all the time.  But he's great - really.  Just very, very tired.  We both are.  It was a very long week.

Day Nine...

WE'RE GOING HOME!!!!!!!!!!!!

Miraculously, really, Gavin slept through the night keeping his oxygen saturation above 92.  So we are packing up and going home.  Thank you to everyone who prayed, supported, sent positive thoughts and love his way.  It mattered.

We're on our way, Brian!!

And On The Eighth Day...

1:30pm:  Gavin did well overnight.  The Respiratory Therapist woke him at 2:30am for another treatment with the percussion vest.  I'm always so proud of Gavin with how he handles things.  He smiled sweetly for the whole ten minutes.  It did take a while for him to get back to sleep, but when he did he slept until morning.  He had another treatment when he got up.

Dr. O'Reilly, Gavin's ENT surgeon, came by to check his left ear for me.  They looked fine to him.  He told me that the ear drops can sometimes sting - and that's likely what it was.  He said it was fine to stop the drops altogether.  

Gavin's doctor came by and had him taken off the Vapotherm and put on regular oxygen.  He has been holding his oxygen saturations steady since which is the best news.  A couple hours later, he came back with his team and a game plan that has me trying not to get my hopes up.  He said that if Gavin can take a good nap today without oxygen - and his numbers stay above 92%, he could go home as early as tonight.  If not - they will watch him overnight.  Basically, he has to hold his numbers up while sleeping.  That's when numbers typically drop.  So the good news is, we could come home tonight.  The bad news is, we could come home in 159 days.  It's all up to Gavin at this point.

Armed with that exciting plan, I jumped into action.  I had the Healing Touch therapist come back and give him another treatment.  She left me some Lavender on a cotton ball and I placed it near his bed.  I fed him a comforting, warm lunch...and then he got a bath in a real bathtub.

  I put him in bed and made the room as dark as possible - and put a huge sign on the door that said STAY OUT!  Just kidding - it said "Sleeping!  Please Shhhhhh!"  Sounds silly, but there are no boundaries in a hospital so I need some kind of stop sign so people don't just barge in.

Gavin is currently laying in his bed trying to fall asleep.  Every so often someone gets paged right above his head "Lisa, you have a call at the desk!"  "Mike, can you come to the front please"  Seriously - it makes me nuts.  Why must it be right over the patient's heads??  But anyway, he is slowly falling asleep and his numbers are looking good.  I'm holding my breath...hoping he won't hold his.

Stay tuned!!


***
4:15:  For the last two hours I have been sitting in a darkened room watching and waiting to see if Gavin would fall asleep.  There were times he looked so close.  But then he'd suddenly flash a big smile into the ceiling tiles and start waving his arms.  I can't let him just lay here any longer - it's not fair.
I just spoke with the doctor to plead my case - I really want us to go home.  Unfortunately, he really wants Gavin to stay.  So, with tears on my cheeks - it's time to push back the curtains and let in some light in this room.


*sigh*