Thursday, January 31, 2013

I Say That Every Day...

I've been thinking of you a lot today, Dad.

I woke up this morning after having a dream about my wedding day.  We were talking about sports as you walked me down the aisle.  It was kind of a nightmare being that I hate sports - until I remembered how amazing it was that you walked me down the aisle at all.

I've been thinking of you a lot today, Dad.

When the boys were at school, I sat at my computer and got on the phone and was working on "Gavin things" - insurance calls and ordering things for him.  I came upon this quote on the internet that I thought you could have written.  It was, after all, the way you lived your life...

"To be happy, do not add to your possessions - but subtract from your desires."

I've been thinking of you a lot today, Dad.

I talked to Mom about twenty five times.  The house is getting a LOT of attention and a LOT of great feedback and I really think it's going to sell fast.  I know you are watching everything and taking care of Mom, as you always did, from your new location.  You always had a way of making things happen, no matter what.  How you're still doing that from Heaven is anyone's guess - but I am not at all surprised.

I've been thinking of you a lot today, Dad.

As I tucked my sons in bed and whispered my little prayers to Heaven that they stay safe and happy.  I thought of all those times I came upon you on your knees next to your bed - probably saying the same prayers for your children.

I've been thinking of you a lot today, Dad.

I say that every day.


Tuesday, January 29, 2013

In The Spotlight...

The people spoke...
...and I listened. 

The majority voted for Gavin to wear his Superman shirt, no surprise, for today's big photo shoot at the hospital!  It turned out to be the best choice... and most "fitting" for a variety of reasons.  Today was a really wonderful day.

The morning started with a visit to Gavin's Orthopedic doctor, Dr. Gabos.  He hadn't seen Gavin in a whole year and was FLOORED when he walked in to see Gavin holding my hand and walking around the exam room.  He just couldn't get over it and proclaimed the appointment the best one of his day.  Gavin showed off by walking on his own... standing on his tip toes to show his strength... and getting through a great exam with a smile.  Dr. Gabos had us get a quick XRay of Gavin's hips - which checked out okay - and he also checked his spine.  Gavin's spine has a curve to it, but it's still very flexible.  He told us not to worry about scoliosis... it may never happen.  Fingers crossed.  It is always such a pleasure to see Dr. Gabos.  And I was so proud that he was impressed with Gavin's progress!
Gavin and I had a quick lunch in the cafeteria before heading to his photo shoot.  Between the pictures and the following interview, we were probably there for about two hours.  Gavin was as sweet and patient as always - he is so laid back in every situation.

First he got some photos taken with Denise who works in the wheelchair clinic.  We have been working with Denise since Gavin got his first chair when he was about two years old.  We just adore her - she's a wonderful person.  And she knows her stuff!  I call her the MacGyver of wheelchairs.


Then the photographer took some photos of me "casually walking into the clinic pushing Gavin's chair" - which was quite hilarious.  I put way too much thought into trying to look natural.  First I smiled right into the camera.  Because that's "casually walking into the clinic," right?  Then I obsessed about hand placement on the handles of the chair and if I should stick a leg out to the side to make me look more "walk-like."  Then I wondered if I should make it more realistic and walk staring at my iPhone as I push Gavin into a row of chairs by accident.  Truly, the last one would have been the most "natural" - but I opted for a coy smile as I looked lovingly down at the top of my son's head, flipped my hair back and kicked my foot up in the back.

I think I nailed it.

The good news is - the photographer is going to mail me a CD of ALL the photos!!  The bad news is there is no bad news!  I'm so excited to have some nice photos of Gavin and me.

Gavin and I were then interviewed by Paul Flaherty - a nice Irishman who works on the hospital website.  Gavin looks rather unimpressed with my answers to his interview questions in this photo, but we had a great chat.  Talking about Gavin and all of the things he has overcome always makes for good conversation. 
And I was more than happy to tell him why we love this hospital so much.  I've written about that many times here!  Walking through those doors is like walking into our second home.  I always know we'll be stopped by a doctor who loves Gavin - a nurse who took care of Gavin - a therapist who is excited to see how well Gavin is doing now - everyone feels like family.  I told Paul that one of Gavin's biggest milestones took place right in the hospital.  We had just been told that Gavin's hearing test came back normal - after being told when he was a baby that his hearing was permanently damaged.  We stopped by the chapel and I wrote this in the Prayer Book...
I remember vividly sitting him on the altar - hoping to get a quick shot.  Our very first helper, Miss Kara, held him up until I got in position with my camera.  I counted to three and she let go - I thought I had about two seconds to take a picture before he fell over.  Gavin had never sat up - and many thought he never would.

Imagine my surprise when two seconds passed.  And then ten seconds.  And then twenty.  Our little superhero sat up alone for the very first time right there on the hospital chapel altar.
Flash forward to today...
Yep.  You chose the most perfect outfit for today.  
That silly Superman shirt was like a tribute to every mountain Gavin has climbed to get to today. It perfectly  summed up an inspiring five years.  

I "casually walked out of the hospital" swelling with pride.


Monday, January 28, 2013

The Important Issues in Life...

Gavin got his new Sure Steps last Friday!  It's hard to tell in the photo - but they have the Superman logo and Superman himself as the design.  They're very cute!  And they're also very big which meant I had to get him new shoes.  I instantly went on Zappos.com where I love to shop for shoes (when I have to shop for shoes).  They ship free and I can ship back returns free.  Very appealing to me because I hate going out shopping.  If I can try things on in my house  - I'm in.
So I ordered four pairs of shoes for Gavin to try over his orthotics.  It's not always easy to fit shoes over  these so I didn't get too attached to the ones I thought were the cutest.  Before I tried them on him, I put this photo on Facebook and asked my Facebook friends which ones they thought I would end up picking.  Which ones do YOU think were the winners?
Fashion is not something that comes naturally to me.  I could wear the same five things for five years and neither notice nor care.  It's probably not the best trait in the world - unless you're my husband who is probably thrilled he married a chick who hates to shop.

Tomorrow Gavin and I have a very exciting day.  We have an appointment with his Orthopedic doctor in the morning... which isn't the exciting part, although it WILL be very exciting to show off his walking to Dr. Gabos!!  He will be shocked.  Every time we go to see Dr. Gabos he has a student shadowing him.  And every time we're there he tells the student, "This child had the lowest tone I've ever seen."  He's amazed at the strength Gavin has now.  I don't think he expected him to improve so much.

After the appointment, Gavin (and maybe me!) will be part of a photo shoot!  The wheelchair clinic and the augmentative communication department are revamping their pages on the hospital website - and asked me if we could be part of their "Patient Stories" section.  The photographer will take photos of anyone and everyone - but only Gavin and I will be there.  Ed can't make it and Brian has school.  I'm on the fence if I should be part of the photos... or let Gavin be in them alone.  I don't want to feel like I'm leaving the rest of the family out if it's just the two of us... although it usually IS just the two of us at the hospital!  I clearly think too much.  Don't worry - I'm aware of this flaw.  They will also be interviewing me which I'm a little stressed about, too.  I'm not very eloquent and ramble when I'm nervous.  Come to think of it, I ramble when I'm typing too.  Sorry... am I rambling?

Anywhooo - I'm really so flattered and I'm very excited to be part of this!  But I need your help choosing what Gavin should wear.  It will be on the DuPont website for eternity!  Or at least until they get bored and change it again.  Either way - a long time!  Let me know - either in the comments section here... on Facebook... or through email... which outfit you think he should wear.

And yes - I know this is weird.  And yes, I really set out these outfits and took photos which is also weird.  And yes, I had fun doing it - which really is what matters.  And yes, I realize that this is not one of the important issues in life.  The important issue right now is that The Bachelor has started and I'm worrying about Gavin's outfits.  

The deadline for this is tomorrow morning at 7am!  I promise I will put him in the outfit that gets the most votes.  I can assure you that he looks adorable in all of them.  And no, I won't be asking you to vote on my coordinating outfit.  And yes, I'm kidding.

Outfit number ONE

Number TWO

Number THREE

Number FOUR

Oh, and if you're wondering which shoes worked the best?
THESE!  Well, kind of.  They definitely fit the best, but I decided to order several more pairs to try.  But these are the winners so far - and may end up being the ones we keep.  As a friend said tonight, if the shoe fits... wear it!
And when it comes to orthotics - it doesn't quite matter what the shoe looks like because boy is it hard to find a shoe that fits.


Sunday, January 27, 2013

Writing on the Pages...

It's official.  A very long chapter in my life is coming to an end.  My childhood home has a sale sign on the front lawn.

What exactly is for sale?

A 2210 square feet home on a tree lined suburban street in Plymouth Meeting, Pennsylvania.  It has five bedrooms, 2 1/2 baths, a formal living and dining room, a great big kitchen.  A den and laundry room.  A beautifully enclosed back sun porch that overlooks a fenced in yard on a quarter acre lot.  It has a giant basement that has a side big enough for a party, spacious enough for roller skating (tested by me!) and a separate side for storage, heating units and tool benches. It even has a huge walk up attic inside... and a garage - that also has an attic.  It's really a great house.  And wait!  There's more!  It sits within walking distance to a Catholic Church (where all of us were baptized!) and a Catholic School.  And it's a short drive from ME!  Just kidding - that certainly isn't a selling feature.  It's a short drive from the Plymouth Meeting Mall, IKEA, several grocery stores and more.  The neighborhood is friendly and we've always had the nicest neighbors.  In all sincerity, if you or someone you know is looking to move to Montgomery County, PA - please consider this beautiful home.  You can email me through this blog if you want more information or contact the realtor who's information is at the end of this post.

What is NOT for sale?

Forty seven years of memories made in that house.  It has never belonged to another family than ours.  My Mom brought up five children in that house and made it more of a "home" than we even knew we deserved.  My Dad played many rounds of whiffle ball in the back yard with my brothers - and planted a tree that each year was photographed next to his youngest daughter as she grew.  My Mom kissed us all at the back fence as we walked to school through the eighth grade.  We had countless family dinners - and family meetings - in that great kitchen.  At the table we solved crossword puzzles, math homework, problems of a broken world and problems of a broken heart.  The basement was the setting for many games of Risk by the boys, school by the girls, roller skating and singing shows by me and tons of concerts from the grandchildren.  That basement was also the setting for a surprise 50th wedding anniversary for my Grandparents.  And the den - with panels and beams that never seemed to go out of fashion.  In that den I had fun birthday parties, played Barbies with my Mom, watched General Hospital with my sister and my Mom, poured through wedding magazines with my older sisters, watched too many Lifetime movies and ate too many boxes of Cheez Its on the couch with my Mom.  And in that room, with Gavin and Brian on the floor, I had my last face to face conversation with my Father.

The front step is where I sat with my Grandfather shucking corn in the summertime.  In front of the dogwood tree was always the perfect place for photos before we left for a dance, the prom, graduation and even on wedding days.  The driveway is where you'd always see my Dad meticulously filling in cracks...even up until the end of his life when he still wanted to pitch in.  And the flag.  The flag was always flying outside of our house.  I hope it always will.

Whoever buys this house will be lucky, indeed to purchase a well maintained and beautiful home.  But what they may not know is that it comes with the karma of the seven people who grew up within those walls.  There was so much love in that house...and that's something that gallons of paint can't cover up. Whoever buys this house will just have to settle for many happy years raising their own family there.


I'm confident I can speak for ALL of the Gallagher children, sons and daughters in law and 19 grandchildren (and one in Heaven).  We are thrilled to see our Mom and our Granny as she begins not only a new chapter in her life, but in ALL of our lives.  And we all look forward to writing on the pages, just as we have all these years.


Saturday, January 26, 2013

That's Just Gavin...

The last couple days have been quiet around here.  Yesterday it was just the four of us.  Gavin, Brian, Me... and the GIANT cold that has taken over our house.  Everyone is sick.  Daddy, Mommy, Gavin and Brian.  As usual... and unfortunately... Gavin has it the worst.  He's been running fevers up to 101.3 both days.  I haven't panicked about him only because he's eating, drinking and active.  He sounds really awful though.  It's ironic that we'd come home from our visit to Washington National Medical Center with a cold.  The nurse practitioner, Meganne, and I discussed having Gavin add a Pulmonologist to his list of specialists.  When I told her that he has a hard time managing his secretions when he's sick (and coughing like he is now) she said I should try to get him a "Cough Assist Vest."  The pulmonologist would be able to help me accomplish that.  He has used these vests before during hospitalizations and I seriously wanted to try to fit it in my purse on the way out.  I'd be very excited if I could get one for him.  And I really wish I had one now.  Until then, the percussion I do on his back with my cupped hand to get him to cough will have to do.  It's hard for me to sleep at night as I'm typically glued to the monitor.  When Gavin's sick, his breathing is terrible - and his apnea comes right back.  I usually have to go in and suction him multiple times.  My tricks when he's congested are to smear Vicks on the soles of his feet and put socks on... leave the Vicks jar open on his dresser for added vapors... and turn a cool mist humidifier on low along with his heater on low.  I know I don't need to tell the Moms out there - taking care of sick children when you are sick is the pits!

Yesterday morning we had a visit from Orthologix!  They came to deliver Gavin's awesome new orthotics!  He is still wearing "Sure Steps" - but in bigger size and a new design.  We chose the Superman logo which was transferred onto the plastic molds.  I mean what else would we choose but Superman?  So all day yesterday and all day today we wore them two hours on, two hours off to break them in.  Come Monday he'll be good to go to wear them all day at school.  New and bigger orthotics means new and bigger shoes!  I immediately ordered four different pairs to try from Zappos - they ship free and I can return the ones that don't work for free.  I love when I don't have to leave the house and shlep kids and strollers and such.
Brian has been a remarkably sweet brother over the last two days.  If he goes to the refrigerator to get himself a drink, he gets Gavin's cup and hands it to him.  If Brian and I are reading or playing and Gavin wanders off into another room - the slightest cough from Gavin will send Brian running.  "I'm just going to go check to see if Gavin's okay, Mommy.  I'll be right back!"  And, when he usually kisses Gavin he freaks out when his face gets wet from his brother's drool.  But yesterday he gave Gavin a big kiss - followed by a hug that he forced on him - and when I asked if he wanted a cloth to wipe his face off, his response got me a little emotional.  "That's okay, Mommy.  That's just Gavin.  His face is wet a lot but I love him."




Some days I'm honestly not sure how I got so lucky.




Thursday, January 24, 2013

Team Leong...

Happy 23rd Birthday to our wonderful Miss Sara!
Her real birthday is tomorrow and she'll be spending the day with her parents.
Gavin, Brian and I took her to a (kind of chaotic!) lunch at Nordstrom before sending her home to enjoy a long birthday weekend.
We love Sara, as you all know, and are grateful for all she does for us...and especially for Gavin.
We're also super proud of her!  She is currently in a Master's program at night - and was just accepted to Penn State's MBA program which starts the same day Gavin starts Kindergarten in August!  She's a smart cookie.  And we were lucky to find her... and lucky she's stuck around for over a year now!
I also was happy to send her home because everyone in our house is sick.  We all have colds and the boys both stayed home from school yesterday and today.  I feel pretty awful.  Moms aren't supposed to get sick!!

Last night, Ed and I attended an information session for parents of prospective students at our local Kindergarten Center.  If you recall, this is where Gavin's preschool classroom is housed...and also where he will attend Kindergarten starting August 26th!  I was already impressed with this school before last night, but Ed and I drove home feeling so sure that this is the right place for Gavin (and probably Brian down the road) for Kindergarten.  We were able to go into two different classrooms and hear from teachers about the curriculum, the kindergarten readiness checklist, hear tips about how to prepare our children for their first day and more.  I was excited when teachers recognized me as Gavin's Mom - because they sometimes invite Gavin into their classrooms and say hi to him as he walks in the hallway.  Gavin is so loved at this school and I know he will continue to be well educated and nurtured there this Fall.

I came home and was eager to write a thank you note to Brian's teachers - Miss Laura and Miss Morgan - his speech therapist, Miss Maggie, and the wonderful service coordinator who has lined up Gavin and Brian's schools, teachers and therapists for the last few years - Jessica Cratty.  Why Brian?  Because as they went over the things that kids should know coming into Kindergarten, Ed and I felt so proud when we realized Brian was WAY ahead of the game!  Every morning the first thing he and his classmates do in school is practice writing their names.  It's all he wants to do at home, too!  And Maggie works on grammar and concepts like "behind" and "under" and "through" which he has really mastered.  And Jessica has never steered us wrong - getting Brian into his wonderful classroom and Gavin with Miss Megan, where he's doing so well.  But to think that Brian still has another whole year before he turns five and will be headed to Kindergarten - I can only imagine how impressed they will be when he arrives!  We feel so lucky that he has such a dedicated team and I had to write to let them know.

Between the boys teachers and therapists and Miss Sara... we have so much gratitude for all the members of "Team Leong."

Have you thanked your children's teachers today?

Our butterfly experience is continuing to fascinate us!  Today we took the Chrysalids out of the cup that they came in.  We watched them as larvae... and then as caterpillars... and soon they all crawled to the top of the cup and hung upside down from a paper disc.  They would shake violently and spin silk and soon they were completely enveloped inside an iridescent chrysalid.  I was scared to death to open the lid and pull out the paper disc with the four chrysalids attached.  
Turns out they are really stuck to that paper and my fear that they'd fall off never happened.  I had to pin the paper disc to the side of the mesh "Butterfly Habitat."
Soon they will begin to emerge as butterflies (it's such a miracle to watch this) and will live out their life span inside the habitat in our home!  They say the lifespan is 2-4 weeks.  We'll see what kind of butterfly parent I am - I'm shooting to keep them alive for all four weeks.  Fingers crossed.
This afternoon we got a beautiful and unique wedding invitation in the mail that made my day!!  Our nephew, Dan and his fiancee, Miranda, are getting married this March in upstate New York and we can't wait!  Miranda hand made ALL the invitations (can you imagine?!?) - and it's even more beautiful in person...
I can say without question - this is the most beautiful and unique wedding invitation I've ever received.
Makes me want to do it all over again.  Minus the torturing bridesmaids with dresses that say "Despite what you're told by the shop and the bride - you will NEVER wear this again."

I think if Ed and I got married again, we'd focus less on the over rated things - and more on the vows.  And my hair.  You know, the important stuff.


Tuesday, January 22, 2013

Children's National Medical Center...

We are exhausted.

We spent last night at a hotel in Silver Spring, Maryland.  It was only a short drive into D.C. to get to the hospital this morning and we didn't run into ANY issues with inauguration traffic at all!!  Gavin loved the hotel experience.  He walked all over the room and climbed on all the furniture.  When we put him to bed in his Nickel Tent travel bed (which we are in love with, by the way) - he started giggling as soon as I turned off the lights.  And he didn't stop giggling until he fell asleep.  
If you missed why we were headed to Children's National Medical Center - here is the Cliff Notes version:

Gavin had genetic testing done that came back saying he could possibly have Congenital Merosin Deficient Muscular Dystrophy.  Not good.  In order to confirm it 100%, he would need a muscle biopsy which is under sedation.  Not good.  I found out that the expert in the country (maybe the world?) in this type of rare muscular dystrophy was a doctor at the National Institute of Health named Carsten Bönnemann.  I found his assistant's email on the internet and brazenly wrote to her hoping to somehow get to him.  My dramatic email was titled "Letter from a desperate Mom..."  Meanwhile, an appointment was set up with Gavin's neurologist, geneticist and a neuromuscular doctor - all at DuPont, where Gavin goes for everything - to discuss what to do about this possible diagnosis.  They did not know about my email to Dr. Bönnemann's assistant or my plot to get in front of him one way or another.  I figured we could skip the testing by having him see Gavin - since he sees this type of disease all the time.  I went to the appointment at DuPont with my speech prepared - hoping to convince them that Gavin needed a trip to the NIH and could they help make it happen.  Well, halfway through this appointment, the neuromuscular doctor said, "You know, there's a doctor at the NIH that I would love to get Gavin to see.  Let me make a call."  That doctor was Dr. Bönnemann.  I could have fainted - it all came together so perfectly.

My email was not in vain, though!  Dr. Bönnemann's waiting list was very, very long.  He and his assistant came up with a way to get Gavin in quickly - which was to see us at Children's National on the one day that he was there.  I was so excited and very grateful.  

(Sorry, I guess I can't do condensed versions of anything...)

I was put in touch with a wonderful nurse practitioner that works at Children's National - Meganne Leach.  We emailed each other back and forth many times before today's visit.  And I had all of Gavin's medical records shipped to them ahead of time.  They must have gone to D.C. in an 18 wheeler - there were so many!  
The purpose of the appointment was to determine if, indeed, Gavin had Merosin Deficient Muscular Dystrophy... and if not, to see if he had any ideas of what he could have or what we could do next.  Meganne examined Gavin first and went through his entire history from conception to five years old with us.  Gavin, as usual, was sweet and compliant.

Next, Dr. Bönnemann came in and spent a lot of time examining Gavin, too.  He did a muscle ultrasound - a better alternative for Gavin than a muscle biopsy. The ultrasound was completely normal and he was able to tell us afterward that Gavin did NOT have Muscular Dystrophy - he was 100% sure.  It was a big weight off of our shoulders.

I went into this appointment with Dr. Bönnemann with another goal (and I didn't desperately email anyone about this ahead of time).  I found out that the NIH has something called the "Undiagnosed Diseases Program"   You can click the link if you want to read more about it.  A couple weeks after I read about it online, I saw this piece on the show "60 Minutes" about this very program!  They said that there was a waiting list years long.  I was hoping that getting Gavin in front of Dr. Bönnemann today might get him an "in" someday into this Undiagnosed Diseases Program.

While he was winding up the appointment, he gave us some suggestions.  He wanted some of Gavin's extremities X-Rayed (hands, elbows, ankles, feet, etc.) to show the structure and formation.  He thought it might lead to some helpful clues as we continue with genetics now and in the future.  And then he said, "Gavin would be a great candidate for the Undiagnosed Diseases Program at the NIH that I'm involved in."  I could have fainted.
Gavin has had extensive genetic work ups - much of it groundbreaking.  He thought that right now, the program wouldn't benefit him.  He's already had the best tests.  But in 2-3 years, the timing would be perfect.  I smiled and told him  to expect a very dramatic "reminder email" of this conversation in exactly 2 years.  Lucky for me, he has a sense of humor.

So, the moral of the story is this.  Dr. Bönnemann is sure that there is some undiagnosed genetic syndrome or disease going on with Gavin.  What it is, he doesn't know.  But we do know that it isn't merosin deficiency.

I was asked today if I felt relieved or bothered that I left there without a diagnosis.  Neither, really!  I've been on this genetic journey with Gavin - and I've pretty much been the driver pushing for each test - since he was a baby.  I'm really used to the ups and downs at this point and I know not to get too excited about things - good or bad.  I do wish for a diagnosis for him.  We may find out a new way to help him.  Or a diagnosis might help prepare ourselves...and him...for the future.  But, as you know, Gavin is doing remarkably well.  A diagnosis won't change that!  His progress right now is like a runaway bus.  A title isn't strong enough to stop that bus, if you ask me.

I suppose we are back to square one.  But we do not regret our trip one bit.  Ed and I had so much fun on our overnight with Gavin - it was fun for all of us!  We loved meeting Meganne and Dr. Bönnemann and will be keeping in touch with them.  And Gavin has that elusive "in" at the National Institute of Health two years from now which is just mind blowing.

We are exhausted.
We are happy.
And we are so grateful for all of your well wishes, prayers and support.



Sunday, January 20, 2013

Here We Go!...

I have spent much of this morning doing the following things...

Cleaning up cold tea (thank God) after Gavin crawled from his chair onto the kitchen table to grab it and push it over.

Picking things up off the floor after Gavin pulled down anything within reach on the kitchen counter.

Watching Ed clean up a big cup of water that, you guessed it, Gavin knocked over even though we thought it was out of reach.

Telling Gavin 227 1/2 times (I was interrupted mid-way by the phone, lucky for him) to stop shaking his milk cup and spraying milk everywhere.

Getting Gavin down from balancing precariously on top of his toys to reach the TV.

Frustrating things that I'm sure many of you have experienced.  Most little kids go through a stage where they get into everything.  But for me, these things are really great problems to have.  Problems I never thought I'd have!  Lately Gavin is definitely keeping us on our toes.


Through all of the mayhem, Ed and I put together Gavin's travel tent bed to get ready for our road trip!
Early Tuesday morning, Ed and I are bringing him to Children's National Medical Center in Washington DC to see Dr. Carsten Bonnemann.  We are driving down tomorrow and were lucky enough to snag what was probably the last remaining hotel room in town.  Our appointment coincides with the presidential inauguration!!  It's sure to be very, very busy - and very, very congested - which is why we are glad to be staying overnight.

This will be Gavin's first time sleeping in his Nickel Tent Bed!  We bought a twin air mattress for him to sleep on inside.
The zip-up feature is key if ANYONE is going to get any sleep.
I've done a lot to prepare for our visit on Tuesday and I'm anxious as can be.  I want to make sure I make the most of our time with Dr. Bonnemann.  Lots of people would like to be in front of him, so I feel very lucky.  This morning I decided to write up a timeline of Gavin's developmental milestones and I found myself getting lost in the past...and choking up quite a bit.  I watched each of his birthday videos - which get me every time.

The first year was so tough.  So much of that year was spent in the hospital or back and forth to see doctors or dealing with feeding tubes and hearing aids.

The year before he turned two was when he used a sippy cup for the first time - actually that happened while I was in the hospital delivering Brian!  He was two years and seven months when he sat unassisted for the very first time.  Miss Kara, our first wonderful helper, was there to witness and we both burst into tears.  It happened after a doctor appointment at the hospital.  We stopped in the DuPont chapel on the way out and he sat on the altar all by himself as I snapped away with the camera.  When he was twenty months, also with Kara as a witness, he army crawled for the first time!  And he finally crawled on all fours at twenty two months...and never stopped.

When he was two and a half, he started with Dr. Trish and his progress was rapid fire that year.  He started standing... cruising the coffee table... taking steps with a walker... and his tone improved tremendously.  That was the year he did Hippotherapy on a horse named Chloe as well!
 This "Gavin is Three" movie probably makes me the most emotional...

Those early years were wild.  The highs were so high.  The lows were devastatingly low.  But every little moment - and every tiny forward step - brought Gavin to this day.  He is doing so well.

I don't know what will come of this appointment.  Dr. Bonnemann will first perform a muscle ultrasound.  The testing that would really help him with a potential diagnosis would require sedation... which we all know Gavin doesn't do well with.  Starting with a muscle ultrasound is much less invasive.  I expect so much from this appointment - but at the same time I expect that I'll walk away with the same knowledge I had going in.

But whatever we learn...it will all be okay.  It always has been for the last five years!  I won't be writing tomorrow as we'll really just be on the road and possibly sitting for hours in inauguration traffic.  I'm sure I'll be on Facebook and Twitter with updates here and there so feel free to find me at either of those places!

And please keep the three of us in your thoughts - and maybe say a little prayer.

Here we go!


Saturday, January 19, 2013

Pop's Chair...

The last couple days have been very interesting around here.  There's something happening with Gavin that has me very, very excited.

On Friday morning, Gavin, Brian and I headed over to Granny's house for a visit.  The boys ate their lunch at the kitchen table and Brian was very excited for Gavin because he got to sit in "Pop's chair."  My Dad always sat at the head of the table.
I know that my Dad is always around us.  And I'm sure that he is always watching over Gavin in particular.  They always had a strong connection.  So maybe, just maybe, some kind of magic happened as Gavin sat up so nicely in Pop's chair that morning... because the rest of the day he was "different."

I swore, all day, that he was trying to talk.  He was making vocalizations that I'd never heard before - with a little smirky smile - and looking me in the eye, which doesn't happen every day!  When we left Granny's house, we had a 35 minute drive to get to the doctor for Gavin's 5 year physical.  He "talked" the entire way there... and even sounded like he was singing at one point!

At the doctor, he was cooperative and pleasant - as always.  The nurse put us in a room that I hadn't been in since I was pregnant with Gavin!  Ed and I met the doctors there for an "interview" before we agreed to use them for our baby.  I mentioned that to the nurse and she said, "I remember that!"  There's no way, I told her - that was over five years ago!  She assured me that she did, indeed, remember - that they all did.  I was only a couple weeks away from delivering (I didn't even remember that!) and my enthusiasm for becoming a mother was infectious, she said.  
Even if she was lying, it really made my day.  And as we waited for the doctor, with Gavin doing his best supermodel pose, I happily recalled those days of innocence when I eagerly awaited the birth of our first child.  I was blissfully unaware of anything remotely negative that could happen. 

(Is this picture hilarious, or what?)
Dr. Kienzle was happy to see Gavin and his physical went very well.  He is 34 pounds and 39 3/4 inches tall.  Long and lean.  We chatted about how far Gavin has come.  As I had Gavin show off his independent walking skills, I remarked "Remember how floppy he was when he was a baby?  Many people thought he'd never be able to even sit up"  "I remember," he said.  We both nodded our head in agreement that Gavin's progress has been nothing short of remarkable.

Both boys got shots - a Hepatitis A vaccine - and didn't even flinch.  Quite impressive.

When we got home, we all went upstairs so I could put some wash away.  Gavin headed towards the bathroom - his favorite place because of all the opportunities to get into water - and I laughed as I watched him climb into the tub by himself!  Fully clothed!!
The best part, though, was when I told him that if he climbed out so I could get his clothes off that I would give him a bath...and he did it!  He really listened to me!
After the bath, he even stood still so I could spike up his hair with the hairdryer.
Today he's been doing a LOT of walking and talking - not at the same time, but I'll take what I can get!  There is something brewing with this kid.  Mark my words.

I think something has come over ME, too!  Friday morning before we left, Brian and I did some "faking" - which is what I call my fake baking.  We made Blueberry Scones.  You know, the kind where you peel the paper around the tube until it pops open?

The important part was that Brian had a lot of fun doing it - and he loved his scone.
As if that weren't domestic enough (and normally, it would be!) - today I made a huge batch of veggie stew for Gavin, I cut up my very first Pomegranate for Brian,
 cut a big bowl of mango and even made Parsnip chips in the oven.  I put a glass bowl filled with Pomegranate seeds out for Brian at lunch.  He ate one and laughed, "Mama!  You tricked me!  I thought this was candy!!"  And then he ate it up like it was.

I'm not sure what in the world is going on in this house... or what exactly happened to Gavin as he sat in Pop's chair... but I could get used to it.  Well, maybe not the part where I spend all day in the kitchen...but everything else.  


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