Sunday, July 31, 2011

Infertility Sucks...

This morning I was up and out early to the fertility doctor. I know what you're thinking - a Sunday??? But in the infertility world, every day matters. You never know when your body will be "ready". Today I had to have an ultrasound so they could track my egg follicles. They need to be a certain size - or maturity - in order to be fertilized. The goal when you're using injectable medication is to increase the number of egg follicles. Essentially giving you more "targets" to aim for. This morning, this is what they saw...
All the black circles are egg follicles. It looks like a lot...but it won't be. I will take a final injection - probably Tuesday - to trigger Ovulation. By that point, only four will likely be the right size. Not the greatest number. But then again, it only takes one. And I'm only praying for one!

Right now my body looks like a pin cushion. I'm running out of veins that work and my legs are bruised from the injections I give myself daily. It all seems a bit unnatural and torturous, I know. But when I weigh that against our strong desire to add a child born from us to this family - it is worth it.

Since writing a post I called "Whispers of Hope" about this very topic, I've received so much mail. I'm grateful to all the women who found that post and wrote to me to share their struggles. Infertility - and also multiple miscarriages (seven for me!) - is no joke. If you think that my writing is one sided...it's not. Although I feel honored when someone tells me they took comfort from a post I wrote, the amount of support and encouragement I get from the people that write to me - it's incredible! I feel so lucky to have this forum to share my struggles - and to learn that I'm not alone.

This afternoon Brian and I took a trip to Granny and Pop's house for a visit. Being with my parents always makes me happy. I sat on the bed with my Dad to talk and it reminded me of when I was younger and I sat on their bed to talk to them after bad dates. (There were a LOT of them!!!) And later I shared laughs with my Mom as we watched Brian being...Brian. Being with my parents - and watching them with my children - reminds me why I want another child of my own. They have always made me want to be a parent so I could hopefully make MY children feel as happy and loved as they have made me feel. I'm doing my best to live up to this very high standard.

My Mom and Dad set the bar high.

Saturday, July 30, 2011

Mommy Mojo...

Today has been a very productive day in the Leong house. Something came over me - something that lit a fire under my rhymes with gas. After the boys went down for afternoon naps, I headed to the basement. Or, as it is also called - the place where we just throw stuff. Lots of stuff. It's gotten out of control.

I weeded through boxes. No, I won't be hot glue gunning any fabric flowers. No, I won't ever use that wallpaper steamer (probably because we don't HAVE any wallpaper to steam). No, I won't need the fifty thousand scented candles that we never burn because it causes Gavin's eczema to flare. While I was boxing things and trashing things left and right, Ed was upstairs tackling our kitchen pantry. It was shameful how many expired items were buried in the back. Our garbage men will be getting a workout come Monday morning. I also decided today to have a big yard sale next Saturday. Ambitious for sure...but I'm up for the challenge. Everything must go...and if it doesn't sell, it's going to Goodwill.

Today I felt a little bit like the old me. The old me was pretty on top of things. I was always working on a project, reading a book, having two yard sales a year, cranking out birthday videos for the boys. I must have fallen into a funk - the last year has been a lazy one for me. I just haven't cared to be honest.

Yesterday while I was at the funeral, Gavin had his Occupational Therapy with Miss Stephanie. She worked with him on trying to feed himself - a HUGE goal of mine. She wrote to me later to tell me how impressed she was with his tolerance. She had her hand over his to guide the spoon and be barely fought her. This is pretty big for Gavin! The yogurt he's eating in the photo is a new favorite - Greek yogurt. It comes in all flavors and brands. I discovered that Greek yogurt is a lot thicker than the other yogurts I've bought. Those yogurts would just fall out of his mouth. I bought it as an experiment - and for once, it worked! My other experiments - Kefir and Coconut milk were flops.

Brian's therapy has been going well - and he's been trying to communicate a lot more. He's calling me "Mom" a lot, which is awesome!! And he's been asking for his "toothbruth". I hope the dentist will notice this Monday just how much he likes to USE that "toothbruth".

Tonight, after baths, dinner and bedtime stories, I actually cooked dinner. I was on a roll today!! I cooked yellow rice - and then placed it in a strip on some tinfoil. I put a two pound piece of salmon on top of the rice and smothered the top with Orange marmalade. I closed the tinfoil loosely around the fish and baked it for 25 minutes. It was awesome. Anyone who knows me knows that I'm not bragging by telling you how great it was. People who know me will know that I am utterly and totally amazed that it was edible. Ed is still in shock.

Mommy's getting her mojo back! Things...dare I say...are looking up.


Friday, July 29, 2011

Destination Undetermined...

This morning I attended the funeral of a family friend. Stephen Dollarton is someone I've known for pretty much my whole life - his sister, Joanne, and my sister, Bean, have been the best of friends for years. Steve and I even went on a date years and years ago - one of my best first dates ever. He took me to Dante and Luigi's in Philadelphia and then to my very fist (and very last) Flyer's hockey game. It was only one date...and I never turned into a hockey fan...but I did vow to one day marry someone who was a gentleman like Steve. (And I did!)

Cancer. He was 43 years old - just two years older than me. He has two young children in grade school. It's one of those senseless deaths that makes you stop in your tracks and question everything. It's one of those deaths that makes you want to hold your children tight and appreciate every second of every day. It's one of those deaths that makes you ask yourself, "Am I really living - do the people in my life know that I love them - am I wasting the time God is giving me?"

His death prompted me and Ed to discuss our own mortality. We decided to get going on wills that we've been putting off. We talked about what we would want if the worst should happen. Like I want anything and everything taken from my body if it can help someone else. And Ed wants to be buried together - and close to where his children are. We are having an insurance company out tomorrow morning to do physicals and take blood so we can increase our life insurance. And we have even talked about wanting each other to move on and find love if one of us should die. (Although I have stipulated that this new chick can't be prettier or smarter or funnier than me. Oh, wait - I guess that would be easy.)

These aren't the most pleasant conversations to have - but they are so necessary. Steve dying - and forcing me to face my own mortality - really got us thinking. Thinking about protecting our children...and each other. You just never know how much time you have here in this world! And it also was a marital reality check. It can be very easy to neglect your spouse when you have small children. Throw in some special needs and it can be even worse. I don't want us to waste precious time we have with each other. And I always tell Ed that I don't want us to become a cliche - married and miserable. So we are planning a getaway. Just the two of us. Destination undetermined at the moment, but it may involve palm trees. We need to reconnect. We need to remember why we love each other - but also why we like each other.

So thank you, Steve. Your death was tragic - and so unfair. But your death may have changed our lives. And for that, we thank you.

Thursday, July 28, 2011

And The Academy Award Goes To...

This morning I had an appointment with the fertility doctor for bloodwork and ultrasound. When you take injectable medication like I am taking, they need to monitor you closely as the egg follicles grow. There's a very small window when you can actually get pregnant so the monitoring is one way to make sure you don't miss your chance. After the ultrasound I went to chat with the doctor. I sat down across the desk and said, "So last time I was here you told me that if we moved on to IVF I'd have a 50% chance of getting pregnant. I wrote about it and the outpouring of mail I got was overwhelming - people telling me that that number couldn't be right. What's the real deal?" He let out a sigh and said, "Kate - I didn't say five zero...I said fifteen. At your age you'd have a FIFTEEN percent chance of getting pregnant."

oh.

For the past week, I've actually had myself convinced that I had heard him correctly. Everyone who wrote to me MUST have been wrong. That maybe my doctor said 50% to me because I'm an exception. Maybe it was a compliment to my stunning uterus. (I would like to think it looks young for it's age) But, alas...I was wrong. And boy, besides feeling deflated and a little bit pessimistic now that I know it's a 15% chance...I feel pretty stupid, too.

So, let's move on then.

When I got home from my appointment, the boys were eating lunch. Brian made a bit of a mess so I pulled out the mini-vac and let him go at it. He loved it so much I might have to make it a daily chore!
Soon after, it was time for Gavin's therapies. First to arrive was Miss Maggie. Gavin was really cranky and uncooperative for much of the session. She tried to massage his face - he fussed and cried and turned his head away. She tried to get him to crunch down on cracker - same reaction. I felt like I sang the whole half hour to keep him distracted. We were about to call it a day when Miss Maggie told Gavin he just had to take TWO crunches and he's be done. Don't you know - that's when he came through and "performed" for us. He was dramatic about it, but he did it! Take a look...

Miss Janna arrived immediately after for her teaching session with Gavin. I warned her when she walked in that he was in a mood! He just did NOT want to participate. She tried to get him to hold a marker - no way. She tried to get him to read a book - not interested. He fussed and cried. That was, until I sang. Gavin has always responded to music - since he was an infant. When I need him to cooperate, I sing his favorite songs. Soon his face went from twisted up and angry to this...

I can't imagine who he gets his dramatic flair from.
Probably his Daddy.
*wink*

Wednesday, July 27, 2011

Life...and Love...Goes On...

This morning we had a reunion! Miss Christi, Gavin's former Early Intervention teacher, came back as Brian's teacher! We were so happy to see her. I could tell that Brian remembered her right away, even though he played shy in the beginning. And Gavin - he was probably confused why "his Miss Christi" wasn't paying attention to him!

Christi followed Brian as he played and he was quite a show off - jumping around and even throwing in some comedic pratfalls. He did a great job imitating animal sounds and following directions...and even did some pretending! Christi left me with the following recommendations which I thought were very clever. One was to put Brian's snack cup or milk out of reach - like on the mantle, so he can see it but he'd have to ask for it. Or, to put only a little bit of milk or snacks in there so it empties quicker. This gives him more opportunities to communicate with us that he wants more. She also suggested that we create opportunities to use words in succession - like when I am blowing bubbles and have him "pop-pop-pop". Or when we pretend we're an animal eating and we say "chomp-chomp-chomp". I've noticed that when I say the same word over and over, Brian wants to try to imitate that. He really did a great job today and just ate up all the individual attention.

After lunch, Gavin and I went shopping together at the mall for an hour while Brian took a nap - and then I brought Gavin home and took Brian to the grocery store to pick up something for our dinner! I feel so grateful that I can have someone here with me each day, allowing me to do things with the boys one and one like that. We really enjoyed our time together.

As I type this, Gavin and Brian are playing...and there is a woman in my dining room shopping for clothes for her first daughter - due in December. I'm letting her shop in peace as she creates a pretty large pile of things she wants - but also keeping a bit of distance so I don't get teary eyed. She is really very sweet. I feel happy that Darcy's clothes are going to a lucky little girl this Christmas.
I may have to ask for frequent pictures.

Life...and love...goes on.

Tuesday, July 26, 2011

Mini-Breakthrough!...

Another big day today! This time for both Gavin AND Brian!

Brian had his speech therapy with Miss Jen and she was very impressed with his progress.
Since last week we were to work on saying and/or signing "help", which he mastered. He also started saying "choo choo" and "beep beep" (it may not sound quite like it should, but it's intentional!) And he's been stringing things together - mostly in signs - like "more please" or "milk please".
One thing Brian does that Miss Jen pointed out was overuse the word "Wow!" For example, when you're reading a book with him - he'll point to a picture and say Wow over and over again until YOU say what the picture is. It's so cute so we have inadvertently encouraged him to keep doing it. (It really sounds cute when he says it!!) So she told us this week to try to ignore the "Wow" factor - and hold out so he'll have the chance to say the word himself. Or at least try.

He also did some great imitating! As they read a book, Jen did some actions and sounds - and Brian surprised me by trying to mimic them. Take a look!

Not to be outdone, Gavin was a star in HIS speech therapy today! He and Miss Maggie worked with the iPad. It's been very challenging to get Gavin to consistently use any type of communication device. With the Proloquo2Go App I downloaded onto my iPad, we have one whole page with "Book". Gavin needs to touch the page, which has a picture of a book, in order to get a book read to him. Usually he tries to "turn" the iPad - thinking it's a page in a book - and he gets frustrated. Or he tries to just move it out of the way to get to his books. It's hard to know if he's made any type of connection that the iPad is a vehicle to get him what he wants.

But today - for a few seconds - we may have witnessed a mini-breakthrough. It took my breath away. The iPad was in Miss Maggie's lap while she was reading Gavin a book. Apparently, it was a book that wasn't interesting to him. We watched as he looked at the book he wanted across the table - and then looked at the iPad - then looked at the book he wanted - and then looked at the iPad.

It. Was. Awesome.

Here's a video of the second time he glanced over at the iPad - it was definitely an intentional way to communicate with us!!

I'm so proud of both of my boys!!

So...about yesterday's post. I was bombarded with personal emails, facebook messages, and comments on this blog from so many of you. Some of you I never "met" - you came out of the shadows after reading my journal for years. I love meeting lurkers!!! And some of you I do "know", but never knew your story. It's amazing how many have gone through the IVF process. I'm grateful for all the advice, information, personal experiences, encouragement...I got it all. Who knows what will happen - if we'll go that route next month or not. But because of all of your emails, last night I went to bed feeling a little more hopeful.

And then I dreamed - all night - about my daughter. I woke up this morning thinking about Darcy. I suddenly felt angry - and cheated. I thought of a friend in Australia that reads this journal and thought my blog name was in reference to getting pregnant - that I was "chasing my rainbow baby". (You can read the real story behind my choice for a blog title in my very first post). Part of me thinks she's right - that I am chasing a baby. And this morning I was wondering if I'll be running forever. Then I went to the bookstore. I'm hunting for a book that celebrates going from a crib to a big boy bed. I'm particular - I do NOT want the silly ones that show the child scared of things under the bed or not wanting to go to bed - why would they want to put ideas like that in a child's head??? I think I need to WRITE that book. But anyway, while I was down on my knees looking at the bottom shelf - I came across this book and I started to cry...
In that moment, I had my own mini-breakthrough.
I DO have an angel. Who can say that? And to me, angels mean "hope". And "hope" is something that I can't lose. But man, it would be so much easier if life didn't have to be so hard sometimes.

Monday, July 25, 2011

All By Himself!...

Big news today.

Big.

During Gavin's therapy, or as I call it "Class with Miss Janna", he held onto a marker all by himself. Don't believe me? Check this out...

He would open and close his hand around the marker while Miss Janna gave him support at his wrist. He was definitely proud of himself - and kept looking at his hand with a cute little smile that said, "Wow - I'm doing it!"

Gavin now has four spin art circles that he's done hanging in the window near the art table. I have started writing on the back so we can track his progress. This circle says "July 25 - Gavin held the marker in his left hand ALL BY HIMSELF!!" I don't know if he's left handed - all I do know is that he loves to spin with his right hand. He will fight you if you try to keep that hand from spinning. It's been hard to decide if he's left or right dominant for writing or coloring yet.

Brian loves Gavin's therapy - especially when they come with fun toys! Miss Janna often has "Caroline the Cookie Jar" which Brian had fun with today.

This morning bright and early I was out the door to the Fertility Clinic. I was anxious to talk to the doctor about a new plan - the last three cycles of injectables have produced nothing but bruised legs and a broken spirit. We had a long chat in his office and decided to go another round with the injectables at a higher dose. He strongly suggested we move on to In Vitro Fertilization - saying we had more than a 50% chance of getting pregnant that way. I wasn't surprised that he suggested it...but I didn't feel all that ready to hear it. I told him I'd rather try another month of injectables and if I didn't get pregnant - we'd talk then. Ed and I need this month to think about it...to do our research...and make a calm and intelligent decision about it all. It's a lot to absorb. I felt comforted, though, when I called our insurance and they told me that IVF is covered at 100% with a lifetime maximum of $25,000. But then I hung up and realized that I haven't a clue what IVF costs. For all I know one round could be 25 grand. I guess it would have been smart to ask those questions...but mentally, I'm just not ready yet.

I'm off to play with the boys and their new trains! We're having so much fun with them.

Sunday, July 24, 2011

Mommy Shame...

I screwed up.

Yesterday the four of us went to a family graduation party. I haven't seen a lot of these family members in a long time and was really looking forward to "catching up." We got to the party around 4:30 after a busy day with no naps...and 100 degree weather. Brian was a little bit wound up. Onlookers might not have thought so - but for Brian, he was wound up. As I tried to hold some conversations - I simultaneously had to keep Gavin from eating the furniture (I'm not kidding) and make sure Brian didn't wander from sight or pick up anything fragile. Every two seconds I was trying to keep Brian from getting into things...stop him from screaming...chasing him up the stairs or off the couch. My conversations were scattered...my thoughts were scattered...and I probably looked frazzled. I wasn't used to Brian acting so crazy and for a second I felt annoyed that he might be giving people a bad "first impression."

Uh, reality check, Kate. He's TWO.
In a moment that I have regretted since, I blurted out "Brian, you're embarrassing me!"

As soon as it came out of my mouth I wanted to cry. No, I don't think anyone heard me. Yes, I understand that Brian likely didn't even know what I was talking about. But I heard it - and I know. And I feel pretty ashamed of myself. One thing that is very important to me is respecting my children. I would never...ever...want them to feel that they are an embarrassment to me. I would never want to shame them publicly like I feel I did yesterday to Brian. Ugh. I just feel so sick about it.

I lost my cool.

I guess one of the reasons that it bothers me so much has to do with Gavin. I would never want anyone (especially me!) to humiliate HIM in public for being himself. I would never want anyone to say they're embarrassed for being with him - ever! What kind of lesson would I be teaching my children - about patience and compassion and tolerance for others - if I can't keep my cool with them!
Am I over thinking this? Perhaps. But for me - it's a bigger issue.

Some moments in life stick with you. For me, this is one of those moments. It was a big, swift kick of a lesson for this Mommy. And I'm not ashamed to admit it.

I'm so sorry, Brian.

Saturday, July 23, 2011

Christmas in July!...

Last night was a big night. We took the boys to Toys r Us and bought them a train set. I'm not sure who was the most excited...but it was probably ME! I had this vision of Ed putting it together with Brian's "help" - and that's exactly what happened. They took their job very seriously, as you can see...
Gavin and I got out of the way and had fun in the kitchen.
Unfortunately, there was ONE piece of track missing from the box. So Daddy the hero packed it all back up - drove back to the store - brought home a new train set AND dinner - and put it all together again. This morning Gavin and Brian woke up to a big surprise. Brian's reaction was priceless - a glimpse of what Christmas might be like this year. He is in train Heaven.

You couldn't unglue him from the table all morning. It's even encouraging him to make new sounds - like trying to say "choo choo"!! This was definitely a fantastic purchase. We were a little shocked at the price of these Thomas the Train sets and accessories - and hope to find the rest on Craig's List from now on. Yikes!!

This afternoon we went to a high school graduation party! My cousin, Jennifer, and her husband, Bill, hosted a great party for their daughter, Erin. It seems like last month that Jen and I were kids... or last week that I was a singing bridesmaid in their wedding... and it definitely seems like yesterday that Erin was born! She'll be headed to Chestnut Hill College this fall and we want to shower her with our best wishes.
Why does it seem that the older you get, the faster time flies?

Friday, July 22, 2011

Onward and Upward...

Monday morning will find me back in the Fertility Clinic.

Back to square one.

I don't know what to say, how to feel, what to think...but I'm not giving up. At least not yet. I'm not as sad as I have been in previous months for some reason. It's impossible to feel cheated when I watch these kinds of things happening right under my nose...
God, I love these little boys of mine.

So, onward and upward it is. I have kept myself very busy over the last couple days - partly as a way to distract myself from feeling disappointed. Each year - sometimes twice a year - I participate in a huge children's consignment sale called "Just Between Friends". It is rather time consuming to tag each individual item - but worth it. I've made some pretty decent money selling at these sales. I started going through our basement (which would probably earn us a spot on the show "Hoarders" at the moment) and sorting through the clothes and toys that I'm tired of holding onto. Part of me feels that letting go of these things that I've been "saving for the next baby" will somehow open me up for that baby to come into our lives. Murphy's Law Baby. I have bags of clothes that we bought for Darcy - and every time I see them I feel sick. It might be time to sell them and make someone as happy as I was when I bought them.

Gavin had Physical Therapy with Miss Wendy today and worked so hard. I took a few videos so you can see his workouts! Today she zoned in on his tummy, leg, lower back and neck muscles. It's amazing how strong he's become!!

Here's Gavin working on his tummy muscles and his legs...

Working out his lower back...

And here Miss Wendy is pretending they're rowing a boat - which forces Gavin to control his neck muscles...use his lower back muscles...and strengthen his tummy muscles!

Miss Katja was a big help assisting Wendy during therapy. Gavin works much better when there's motivation, so Katja held up one of his favorite toys to encourage him to stand.
Wendy was amazed at how many times he squatted and pushed himself back up. His upper thigh muscles (whatever they're called!) are getting real strong, too!!

She also had Gavin walking in his walker. I'm throwing this question out to anyone who has a Nurmi Neo - or really any walker. The issue we have with Gavin is that the walker gets away from him. He hasn't learned to control it yet. The wheels don't have any settings that help slow it down. I've added hand weights to the front and sand bags to the back hoping to weigh it down, but that hasn't helped much. I figure there has to be some kind of homemade remedy to add friction to the wheels. If anyone has any suggestions, please pass them along!

I also wanted to put our other dilemma out there to solicit advice. Gavin constantly puts his hand in his mouth. We want to stop this behavior (along with his other mouthing behaviors) but nothing we've done so far has worked. You could stimulate his mouth with an electric toothbrush or a Nuk brush for an hour and he'd still seek the inappropriate behaviors. I've thought about putting something on his hands - think "lemon juice" or "bitter apple" - but I would worry about him rubbing his eyes. Has anyone dealt with this and could pass on some suggestions??

I'll end with some exciting news. Gavin's bed is in the works! I submitted the bill to our insurance company and they should be sending us the check within a few weeks. We'll then send it to the gentleman at Cyr Designs in Maine so he can start building it! I have been obsessed with choosing a color for the sidewalls (that are made of marine awning - read: easy to clean!) to match his room. The bed is pretty huge - over six feet tall and over seven feet wide. I'm actually considering switching Gavin back to his old room - maybe. This bed will cover up one of the cool trees we have on his wall. I guess we'll have to see when it gets here. I'm happy to have something to look forward to...

Thursday, July 21, 2011

Just Keep Chugging...

I would like to introduce you to the newest member of our family!!
Our brand new yet to be named train table.
I bought it off of Craig's List and Ed picked it up for me last night. It needed about two hours worth of attention - removing stickers and corner protectors that had been screwed on and nearly using up an entire touch up paint pen. It cleaned up nice, though and it actually matches our furniture perfectly. I couldn't wait to show the boys this morning. Gavin wasn't interested - but Brian was very excited as you can see!!
We've had a simple set of trains since the boys were both in infant carseats. Ed and I had no idea what we were doing and chose straight and curved tracks and some cool looking trains and the neat looking garage - oh, and the bridge. I really do need a train tutor to come over. I know we can step it up and fill up that whole table. Brian checked out every inch of it from the top...
...to the big storage drawers underneath.

After spending some time with his trains, Brian and Miss Katja went out on the deck for some fun in the pool. It's extremely hot today in Pennsylvania.
Gavin stayed inside with me while I threw some dinner in the crock pot. We would be leaving soon for a trip to the hospital to see his eye surgeon and get our DNA taken from us in the lab.

Gavin's visit with Dr. Lehman went very well. She was so happy with how his eye looked...in every way. The scars over both lids are fading, the scar on his eye is barely noticeable and his lid position has not changed - which is good.

We don't have to go back to see her until the first week in October! It's amazing that we're at the point where that whole ordeal with his eye - and almost losing it - is just a memory. If you're new to this blog, you'll have to go back to my CaringBridge journal entries starting from this past January to get caught up on that drama. It was definitely dramatic, that's for sure.

After we left Opthalmology, Gavin and I headed down to the lab for our blood tests. As I mentioned in yesterday's post, Gavin's latest round of genetic testing showed a small deletion on his third chromosome. It is thought that this is a "familial" thing, meaning that Ed or I could have "given" it to Gavin. That is why my blood was drawn today. They also took blood from Gavin to send to Boston University so they can pursue FG Syndrome, something I found on the internet that seems to perfectly describe my child. I'm very excited about either of these possibilities.

His blood draw didn't go as smoothly as the last one. But not for the reason you'd expect. Last time, Gavin barely flinched - even watched the woman as she inserted the needle! This time, the lab technician suddenly got a tickle in her throat. You know that dry, loud kind of cough? Well, she had a case of it right when she started with Gavin. Each time she turned her head - still holding his arm - and coughed real loud, Gavin would jump. With each cough he got more and more upset. By the time she was ready to stick him, he was totally freaked out. It had nothing to do with the needle...but everything to do with the noise. Gavin doesn't like too much noise - especially when it's sudden. And even more so when it comes out of his little brother's mouth in a screech or a squeal or a scream. Not sure what to do about that one...

But, he survived. And so did I. I'm always proud of my little superhero. Although check him out standing up in his highchair - he's not so little anymore!!
For a child who has been through so much, he has the sweetest disposition. Life throws a lot his way...but he just keeps chugging along.

Wednesday, July 20, 2011

Hope and Possibilities...

This has been one of the craziest days in a long time. A whirlwind day! It all started at midnight when I woke up - and couldn't fall back asleep. It felt like I laid awake all night long. Then, at 5am, I heard Brian crying. That doesn't happen very often that either of the kids wake up crying. I had the brilliant idea to bring him into his big boy bed with the hopes that we could both fall asleep in there together. Bad idea. He did lay there for a while - cutely pulling the covers up under his chin and then holding my hand under the covers. But then he popped up and wanted it to be story time. After a short while I put him back in his crib and he was not happy. He was pretty much up from that point on. Unprecedented in this house.

Before noon it was a madhouse here. People coming to the door - landscapers needing my attention (they were putting down mulch) - a representative from the car dealer came to pick up my car and needed me for about a half hour - phone ringing off the hook - I was racing from one thing to another to another.

We put the boys down for a morning nap because we had a playdate planned for the afternoon. I was SURE that Brian would fall asleep after his early morning. I was wrong. As I sat at the island paying bills and listening to the boys playing on the monitors, the phone rang.

It was Gavin's geneticist with some pretty interesting news. Gavin's last round of intensive genetic testing was back in 2007 when he was just a baby. Thanks to scientific advances, there was updated and improved testing available which he had a few weeks ago. This array showed a small deletion on his third chromosome. It may mean something - it may mean nothing. The deletion, she told me, was a "familial variant" which means that he would have inherited this from me or Ed. She told me that both of us would need to get blood tests so they could pursue this further. They also decided to pursue a syndrome that I came across. I have, for lack of a better word - a "hobby" - of googling syndromes and disorders all through the night. The one I found, however, wasn't from my regular "research". A friend asked how I found all these "possible diagnoses" on the internet and told me some physical characteristics of her son that concerned her. I said, "You just google each of the characteristics and see what pops up" - which I did. Up popped "FG Syndrome". I read it with my mouth open. It was like reading Gavin's biography. So, tomorrow he will have new blood drawn at the hospital. They will then send his DNA to Boston University to pursue the possibility of FGS. This is all very exciting to me. I know that it could lead to a dead end - but I'm also hopeful that we are close to an explanation as to why Gavin is the way he is. I have written before that it won't change anything in our eyes - but it will be nice to know "why" and "what now".

Shortly after the phone call, Gavin's hearing teacher arrived for her monthly visit to check on him.
We chatted about the lack of changes in Gavin's hearing (which is a great thing!) and we even chatted about Brian's upcoming hearing evaluation (August 3rd).
We always love seeing Miss Carol. She's such a big part of our lives.

About ten minutes after Carol left, my friend Elaine arrived with her gorgeous son Cooper for a playdate!
Isn't he adorable???

Brian was in love with beautiful Elaine immediately...
...and was showing off like a maniac the entire playdate.

When I say maniac, I mean completely bonkers. Out of his mind. Between the playdate and the lack of sleep - Katja and I were looking at each other dumbfounded. Brian was acting completely out of character. Unless this is now the "new Brian" - in which case I'm going to look into the exchange policy I came home from the hospital with.

But the show must go on - so Elaine and I continued to try to talk over Brian's shrieking and show off antics. And I just kept staring at little Cooper - his dimples just stole my heart!
Elaine was a teacher and has such a way with kids. At one point, they were "bug hunting" out the front window. Brian just couldn't get enough of her!
We ended the playdate when it was time for the boys' snacks and I snuck in a group shot before Cooper had to go home. We had such a good time.

I brought Brian up for a nap and he seemed grateful for the "downtime" - he went right into his crib and fell asleep within seconds. I think Gavin was happy for the "quiet time", too, and the two of us just laid on the playroom floor to breathe. It had been a long day. As we laid there, Gavin turned over and sweetly touched my face and I felt a lump form in my throat. So many nights over the last 3 1/2 years I have stared at the ceiling with tear stained cheeks. I've gone over every minute of my pregnancy - sure I was somehow to blame. And now...to think that we may be close to an explanation. And knowing that the explanation could mean I could stop destroying myself with guilt. And wondering if a diagnosis will help us help him in ways that we aren't already...it's all just overwhelming to me.

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