Thursday, May 31, 2012

none photos...?!!

I'm so glad summer is finally here.  We don't have school, but baseball camps and dance start up. I'm still crossing my fingers we don't have much going on this summer. I can't wait for swim days, and snow cones.  I'm pretty sure the little bug is going to LOVE the pool.  I haven't had my camera out much this week.  I have some really cute pictures of big sis at her kindergarten graduation..

this was my favorite performance, 
and sister was right on with the choreography. She's got mad skills, 
seriously check her out blowing that pigs house down.

and that's it for this week...well except for a few iPhone shots.

 She's got that cheese bomb smile down, right?
even her fake smile can change your day for the better.

Friday, May 25, 2012

Watch it.

I wonder what Leighton thinks of her crazy life.  She spends most of her hours running around with me, and studying these two cuties.  These are my favorite pictures of bro and sis this week.
She spends 8+ hrs @baseball fields

(I wish I took pictures like this)

Spent all of today at Field Day. 
She is seriously the best kid. She's always so happy to watch these two.

Life is pretty great!

Thursday, May 24, 2012

2 Weeks behind!

I can't wait until June, this month has been the WORST.  I feel like a chicken with it's head cut off.  We're running all over! Baseball games, dance concerts, graduations, heart surgery, doctor appointments, dance tryouts, baseball practice. I keep forgetting important things, and it doesn't help that Leighton hasn't slept through the night since the night before the hospital.  I feel like my brain doesn't ever get a rest.  I feel like I'm running 2 weeks behind on life. Not to mention Leighton just crashes on Saturdays and Sundays.  Poor little bean has been the best little trooper.  
She had her follow up check up, and they said she gets to go off her Lasiks (the only med), and she's cleared for swimming and baths.  Her incision has healed nicely. She has been amazing (minus the sleeping!). We can't wait to break out the swimming suits, and hit the pool! I am wishing for a lazy summer.  

They gave Leights this awesome shirt at her check up, and this is the blanket we took home from surgery. It has been well used, but she loves the little lady bugs, and flowers and points them out with her little finger.

Thanks everyone who has brought us dinner and treats, helped with the other kids, and dropped off presents (aunt Merri-She loves her Minnie). It's helped so much!

Tuesday, May 15, 2012

We survived.

I can't believe I survived Leighton's Open Heart Surgery. I don't know how we did it (well I do....prayers, and a blessing), but I never broke down, I handled it.  I went sleepless nights, and I ended up being Leighton's nurse and mommy.  She WOULD NOT let the nurses touch her or give her medications.  I'm sleep deprived, and have bronchitis, but I feel better then I have in months.  It was like I was waiting to cross a bridge, and my life couldn't move forward until I did it, but it was scary and I really didn't want to. I'm so glad I can move forward now. People keep asking me if we're doing OK, and I know I am. I feel back to myself, and I haven't felt like this since they told me she had to have this surgery.
This is what I wrote while sitting in the waiting room.

"Leighton just went back for surgery. It feels horrible. I've realized I like to detach from hard situations. It's the only way to cope...just don't think about it, and talk about anything but. 

It's really hard to be "those" parents. You know the ones you use to compare your situation to. It's what helps to get a little perspective on your situation. We're the ones here for something way worse then dental work, t&a removal, circumcision. The parents that get taken back to the "special" room, and meet with a large number of people. Gets to sign the extra paper work for the extra scary IV's. The only ones with a pager. I always do it.....there's always someone dealing with worse, I tell myself to feel blessed and have gratitude. 

In the surgery waiting room there is no one to look to worse off then us this time. I'm going to have to reach further then this room, but I'm going to detach for a while again."

It was hard being in the waiting room, but we didn't want to leave. We were there from 9:30-3:30.  By the end we were basically the only ones left.  All the other "morning parents" had been called away.  You want to hear the way we passed time...we listened to the kind of trashy parent yell at her sister, and laughed. We talked to another chatty mom, thank goodness for her distraction. We discussed why you would have your 2 year old circumcised, don't you just forget about it by then, and totally laughed when the doctor talked about how great his (sorry) shaft really did he just say that? I read this blog post, and it actually made me laugh. 

The waiting room was the very worst. After that I felt like it was smooth sailing, and it really was.  When we got into the CICU this was Leighton's IV's 
 I know I should have been scared for Leighton, but after the surgeon came and saw us I felt a huge relief, and I KNEW she would do awesome, and she did! I was more in awe.  She had all these IV's going at once (mostly in 1 of her 3 IV's). What was amazing was how her nurse would page the pharmacy for say...blood pressure medication, and it came up the vacuum tube in 1 minute (seriously), and it would be immediately in her little body helping to stabilize her.  She looked so good after surgery too.  Just a tiny bit puffy.  I have pictures of it, but I'm not posting them. Her dad gave her a blessing and in it he said that she would make a quick, and full recovery so she could be back in our home feeling it with her joyful spirit.  She was home in 5 days, with no oxygen, only Tylenol for pain, and she only has one medication to help her body drain fluid.

The hardest thing we had to battle is the preconceived notions of what kids with Down syndrome have.  The discharge nurse really wanted to send Leighton home with some oxygen for Sleep Apnea, not because she ever had any signs of it (I know I watched her breathing, not once in the 4 nights did she EVER stop breathing, she actually had her stats always rise during sleep) but because Down syndrome kids ALWAYS have sleep apnea....and I should really be watching for it.  It's hard to have people tell you things you already know, not saying I know everything, but I knew everything they "suggested" I watch for.  I informed her YES her pediatrician and I have talked about it, and I know she might develop it, but as of now he isn't concerned about it, and I really am watching for it.  They left her breathing tube in a lot longer then normal because of fear. The surgeon finally came back in and said..TAKE IT OUT! The nurse had to be told by him and 2 other doctors to finally do it.  Sometimes I think it's harder on them because of the nurses and doctors let fear make their decisions sometimes.  Leighton had croup after, they thought it was caused by a virus (she tested negative) but I know it was because she was awake with it, and crying, and choking, and she was swollen.   

The best part of the stay was how Leighton reacted when her brother and sister visited.  It was like a complete mental turnaround.  They cheered her up. Her favorite part was the wagon. Just the mention of the wagon would get her to stop crying.  

She loved the playroom too.
She seriously was a rock star...She just handled it so well.  It was such a relief. She was always still her funny self.  We had to detangle her from her wires 3 times a night (crazy sleeper, she had to get to her "tummy splits" and she was ALWAYS knocking out her oxygen...She didn't use it half the time. 
I'm so glad we are home. A few more cardiology apointments and they say Leighton's life as a heart patient will come to an end!


Saturday, May 5, 2012

Fedor-able fedora-girl


little miss silly..

This girl has always been a crazy sleeper.  She just fell asleep watching Blue's Clue's 
and basically in the splits too.

The real reason for this post though is this video. 
She's been playing Peek-a-boo like it's her job. She's getting so fun/funny. 

(Sorry the video is blurry, but I didn't want her to focus on the phone and grab for it so it 
took me a minute to get it into focus). 

Tuesday, May 1, 2012


Surgery is coming soon.  I hate to announce it when it was postponed last time.  So I will let you know if it's a go when we know.  If your baby has to have Open Heart Surgery then just be prepared it can be canceled the day before and you might break down in tears because your all mentally ready. Well, the best you can be anyway, and then they inform you that you will have to do it all over again in a few weeks/ months (and they really hope you didn't plan your whole life around this). Then you have to call everyone and say "just kidding" it's not happening and explain the whole thing and relive it. Plus then feel guilty because people brought sweet cards, and cute's like a wedding that doesn't happen. Then you wonder whats correct in this situation?  Should you return it, or would that be it's just easier for us to give the call when it's a go. 

I'm nervous, and I don't want to go through with it.  It's funny it's like you just want it to be over with, but you want them to cancel it at the same time.  Oh and I don't like to talk about it.  I have very consciously pushed it out of my mind (just like the manila envelop that came is shoved in the mail drawer) to be dealt with at a later date and if you want to see me in tears then ask about it.  

This surgery isn't a kind where we will see a drastic improvement in our babies way of life. It is preventative surgery for pulmonary hypertension, and an enlarged heart.  It's hard because she will come home sicker (on oxygen, and medication which she doesn't have to take now).  Also heads up because our doctor told us no visitors or going out for two weeks when she gets home.  So now your in the loop and you don't have to ask. 

And to end on a positive note...
Here's some cute pictures of the day.

(white) Kit Kat snatcher

She gets it because...
She's SO BIG!

Her supermodel shot of the day...