Father's Day 2012...

Ed is a spectacular father.  Has been from day one when he jumped in to change a fragile, sick infant in the hospital NICU.

He and Gavin have a very special bond.  Gavin adores his Daddy!!  I don't think he would have allowed me to hold his hand long enough to put paint on it - and then be patient enough to place it down so carefully - for anyone else!  Gavin's hand is the top of the tree, of course.  He is the oldest, after all.

Every June I make our Shutterfly photo calendars (they are 50% off then!) and it makes a great Father's Day present for the man who has everything.  Ed loves having his photo calendar at work so he can see the kids during the day.  This year's calendar has so many wonderful memories.

Brian had a special present for his Daddy that he did in Speech with Miss Maggie!  His answers to questions about his Dad had us all cracking up.  Click on the photo to make it bigger if you're old and blind like me!

Pretty much every night when Ed gets home from work, he plays with Brian.  Watching a grown man race to find a good hiding spot in "hide and seek" will melt your heart.  Brian loves playing with his Daddy.  They laugh a lot - and even have similar laughs!!  Anyone who knows Ed knows his laugh is contagious.

Yesterday I sent Ed away.  Mother's Day and Father's Day should be guilt free days where the honored person gets to do anything and everything they want.  So he had a solo getaway with no work, no kid duty, no alarm clock - nothing.  He was pretty psyched.

When he got home, he and Brian went outside to wash cars - a new experience for Brian!!  He had a ball and wants to "do it again tomorrow."

When it comes to Fathers, I hit the lottery.  I was raised by a great one...and I married a great one.  

Happy Father's Day, Ed!

Three And A Half!...

Happy Half Birthday, Brian!

Today, you are halfway to four and your Mommy and Daddy can't BELIEVE it.

You are so much fun, Brian.  You love puzzles and art.  You love books and music.  You really love your brother, which makes me so happy!

You love chalk on the driveway and getting the mail.  You love school and the playground and wearing a backpack.  You love Mickey Mouse Clubhouse and stickers and the moon in your room.

You're doing a great job peeing on the potty and we just got Angry Birds underwear!!  Oh - you LOVE Angry Birds.  You also love your iPad and learn so much on there.  I really think it's helping you learn sight words and spelling and more!!!

Today you woke up to signs and balloons and a present at the breakfast table!

And you opened your present - a doctor's kit!

We baked cookies, too, which was like the blind leading the blind (*wink*) - but it was fun!!

It was such a fun morning!!

We love you so much, Brian!

Happy THREE AND A HALF!

Hi, Dad...

Hi, Dad.

It's Father's Day Weekend and I'm really missing you.  Not really because it's "Father's Day".  Not at all.  When you have a Dad as great as mine - every day is Father's Day, let's be honest.  It's just coincidental that I'm needing you and missing you and wishing you were here to talk to at the moment.

I could really use one of your hugs.

You know that I'm generally a very positive person.  I get that from you!  But for the last few days I've become increasingly down and I can't stop the train headed to 'downville'.  My anxiety is growing over these negative pregnancy tests.  I know it's too early to "give up", but it's getting harder to stay hopeful.

I could also use one of your pep talks.

It didn't help that today Ed and I went to DuPont to meet with Gavin's Genetic team.  We had to go over consent forms and have our blood drawn in order to start Gavin's Exome Sequencing test.  We feel SO lucky to be part of this groundbreaking new testing.  But it brought it home for me again the years I have diligently brought Gavin back for genetic test after genetic test...researched genetic syndromes into the wee hours of the morning...all to try to shed some light onto our mystery boy.  And it was a reminder of why we long for another sibling for the boys.  We had to make hard decisions today - like whether we want to know if Gavin is predisposed to diseases in the near or distant future...like Cancer.  Or if he is a carrier for any genetic diseases that would affect children that he would have.  In the end - we decided we wanted to know it all.  The good, the bad and the ugly.

Tomorrow is Brian's 'half birthday' - he'll be 3 1/2.  I know you see him, so I don't need to tell you how he's talking and telling jokes and doing puzzles and pretending.  But I wish you were really here - I can see you sitting patiently with him over a puzzle.  Every so often Brian comes out with the question, "Pop come home soon?"  Boy, how I wish I could say yes.

Happy Father's Day, Dad.  I talk to you every day, as usual.  And I still call Mom every day - not much has changed there. I hope someday to hear from you - somehow, someway.  I miss you so much.

Break Time...

Today was Brian's last day of school for the next two weeks!  He won't go back until July 9th.  His teachers threw a party today to celebrate.  They all ate ice cream and watched The Lion King, which Brian reported was just "too loud."  I think he'll miss school, but we have some really fun things planned for his break - including taking a trip to the beach for a little vacation!

This week ends Gavin's therapy before a break as well.  Today was the last day he'll see Miss Janna and Miss Maggie for two weeks!  (excuse the blurry shots - I can't believe it myself)

Gavin always does something pretty awesome during his therapy break.  Who can forget this HUGE ACCOMPLISHMENT from last year's two week break?

We were at the beach on the boardwalk rides and Gavin rode the firetruck by himself.  It was without a doubt one of the best days of my life.

In other news, I am now six days past my transfer.  Or, as they say in the infertility club, I am 6dp5dt - which means "six days past a five day transfer".  Which also means for me - still not pregnant.  I'm going to have to ask you to hope for me at this point.  I'm feeling uncharacteristically optimistic for many reasons.  Oh, and God still hasn't gotten back to us on that walkie talkie.  Perhaps I should turn to Twitter?  I'll keep you posted.

Catch 22...

I have no news...good news...and bad news.  Which would you like first?

How about we get the bad news over with.  Today, Gavin and I met with the ENT to discuss his X-Ray, his apnea and his other issues.  I hadn't seen the X-Ray yet, but could tell by the doctor's expression when he pulled it up on the computer that it couldn't be good.  He turned the screen towards me and my heart dropped.

I'm not sure if you know what you're looking at...so I'll try my best to describe things to you.  I wish I could draw arrows on this photo - but I couldn't figure that out!  First - look at his mouth area.  All the white areas are bone and teeth.  See the big molars on the bottom?  They're his adult teeth waiting to emerge!  Pretty neat, eh?  Once you eye the molar on the bottom right - look a little further to the right at that black dot with light typing next to it.  That is an enlarged adenoid...which is an issue.  Go back to that molar and look below (and above) it.  We've always known that Gavin has a narrow windpipe - and his low tone causes it to collapse pretty easily, which is why he is so high risk under anesthesia.  But what was so concerning is that there was not a clearly visible path from his windpipe to his nose.  It looks occluded!  It's amazing he can even breathe at all.

The doctor looked in his mouth and told me his tonsils are fine - they shrunk since the last time they were checked - so that's one issue off the table.  He also tried to get a look into his ears with no luck.  Some of the best doctors around have a hard time seeing in his ear canals.  Gavin has some unique peculiarities in his anatomy - his ear canals are shaped in such a way that makes it difficult to see with an otoscope.  So he decided to have one of the audiologist do what's called a Tympanogram.  She places a little rubber tube in each ear and blows a puff of air inside to test eardrum movement.  If the results look like this...

...it's not good news.  This is what Gavin's results looked like in both ears, indicating that he had fluid built up which could lead to more infections.  But what the audiologist said next had me crying all the way home.  She asked if Gavin has been pulling at his ears or cranky or seeming to be uncomfortable.  I said no.  She told me that he's probably "used to feeling this way" - used to hearing like he's under water - which means this has been going on longer than anyone knew.

*gulp*

This crushed me.  There was no way I could have known he had fluid in his ears...or had pain...or any of it - because he never complains!  And he can't tell me!!  It was only three or so months ago that he first started getting sick - fever upon fever - and we discovered his first ear infection.  To think he's been struggling longer just breaks my heart.

Gavin and I went back to meet with the doctor again with the results from the Tympanogram.  He asked me the loaded question:  "What do you want to do?"  It was very difficult to answer.  Gavin's sleep apnea is scary-bad.  And I worry that this sleep apnea could lead to other health issues.  The doctor told me that removing his adenoids and putting tubes in his ears will help.  But then there's that pesky "high risk" under anesthesia that causes everyone (including me) to think more conservatively.  It's a big catch 22.

In the end, we decided to give Gavin four more weeks before we make a decision.  He will stay on Flonase, which might help.  And the doctor said that sometimes Summertime and Mother Nature helps dry things up as well.  On July 13th, we will go back and get repeat Tympanograms.  If the results are the same (or if things get worse before the 13th!) we will go right into surgery.  I want it all taken care of before Gavin starts school in the Fall.

Being Gavin's Mommy is not easy.  There are so many uniquely shaped puzzle pieces...and odd scenarios...and unusual complications.  The worst part is not knowing, really, what he's going through. What he's feeling and thinking.  My greatest wish is for him to talk.  Please God...give him his voice!

So now we'll go onto the GOOD news!!  Tonight - totally independently - Brian spelled a word!

EXIT!

 I'm not sure where it came from -why that word in particular - but who cares!  I thought it was so cool!!

And so did he.  He was very, very proud of himself...as you can see.

And finally.  The NO news.  Which means no news yet - no positive pregnancy test yet.  I swear I see shadows on the tests...but I won't be cautiously optimistic until the line is visible without me having to stand in the closet holding it sideways with my head to the side and my left arm in the air.

Please - like you haven't overanalyzed a pregnancy test in your life.

Breaker 1-9...

Beyond walking on his own...self feeding is the ultimate "Pie in the Sky" goal for Gavin.  I've said before that I think that will be the last thing he conquers.  I've even daydreamed about attending his graduation (early) with a PhD (from his Dad's alma mater - University of Pennsylvania) and then going out to eat to celebrate.  And I'm feeding him...still.  Exaggerating, of course - but it is one thing that is such a struggle.  I'll be very curious to see if being in school with peers that eat solids will be the big push he needs.  Let's hope!!

But we still try...and today Miss Maggie had some success!  She covered bites of banana with rice krispies to give him some texture to crunch - and he ate several pieces!!

I was very proud of my little boy.

In other news, word from preschool is that Brian is coming out of his shell!  He's a lot more talkative and is even showing off his silly sense of humor!  He's still a little shy with the kids - but talks a lot with his teachers.  Sounds like his Mom - I was quite a teacher's pet.

This morning I was at the fertility clinic for blood work.  At this visit - five days past my transfer - they are only checking my progesterone and estrogen levels to see if my meds need adjusting.  Everything looked great.  But you know what DOESN'T look great??  The EIGHT pregnancy tests that I've taken that are all negative!  (My name is Kate and I'm a proud pregnancy test addict)

It's still early...and I'm definitely having 'symptoms' that could be indicative of a pregnancy...but I want that positive.  I'm not the most patient person when it comes to this kind of stuff.  So I put Brian in charge of reaching God on his walkie talkie - to see what he can do.

I'll let you know tomorrow if he got an answer.

Over and out.

Two Week Wait...

If any of you reading this have ever tried to conceive...you know how the "two week wait" can bring out a range of emotions in you.  The time between conception and finding out if you're pregnant - when you over analyze every twinge, symptom, lack of symptoms, etc.  

If you're wondering what types of things I'm "over analyzing" - I'm here to tell you.  Today is four days past my five day transfer.  Since Saturday I've had a lot of dizziness - today, especially.  And I'm more tired than normal.  I'm also having mini-hot flashes.  Anyone who writes to me and says it could be early menopause and not pregnancy will make me cry.  (Only because I know that's probably a possibility at my age!  Ha ha!)

Tomorrow morning I go in for my first blood test where they check my hormone levels to be sure I'm getting enough Estrogen and Progesterone.  Ed gives me a very large needle in my back side every morning with Progesterone...and I take Estrogen three times a day.  Hopefully they won't need to add anything else to my arsenal.

Today was business as usual around here.  Brian went to school in the morning - and Gavin had therapy with Miss Janna in the afternoon.  We're still working on color matching.  It's getting harder and harder to remember that Gavin had a stretch of time when he actually color matched.  Just when we were getting used to it - POOF!  He never did it again.  But we keep trying!!

Brian loves the fun toys that Janna brings.  Today she brought new books with monsters in it - he loves monsters!

And when Janna pulled out "Bubble Bear", she was kind enough to let Brian try to blow the bubbles.  He tried and tried and tried...

 But in the end, he let the expert handle it.  (She really is the best bubble blower in town!)

 And instead, he tried to blow them once they were in the air.  Gavin loved the whole show!

When Brian is involved in any of the therapies, I try to keep him occupied and cooperative.  But there are times when he wants something he can't have.  He's going through the stage where everything is "his."  So I've been faced with lots of little teaching opportunities.  Brian and I leave the room for a "talk."  Sometimes it works - sometimes it didn't quite sink in.

But the good outweighs the bad.  Gavin loves when his brother is there.  They have such a special bond - I love the way Gavin's face lights up when he sees his brother.

  

This afternoon when I opened Brian's backpack to look at his communication book, I had a *moment* when I read:

"Brian was very excited to tell us how he played with Gavin this weekend!"

Be still my heart.