Perhaps sometimes my entries all start to sound like odes to Clara, but I can't help it.  That girl is so darned beautiful.  Or maybe it's partly because I know everything is a little more difficult for her.  Some things are a lot more difficult.  The things she does, when she does them, just... amaze me.

One thing that has struck me since becoming a part of the extra chromosome crowd is that these children aren't dumb.  A lot of people, even some parents, believe these children really have some sort of brain damage.  Since being around Clara and other people's children I have actually thought this to be very far from the truth.  I see intelligence in their eyes.  These children think, and they think deeper than we assume.

Right now Clara is trying to reach for toys.  Sometimes she can grab them.  Other times, I see the frustration on her face when she wants to make her arms go forward for that toy, but they don't.  She knows they should, but it can be a difficult struggle.  It's frustrating to me to see her fight so hard.  That's why when she does tackle something, no matter how small, it becomes huge to us.

A couple of weeks ago, Cxdy and I had the fortunate experience of sitting in on a webinar hosted by D.A.D.S.  There were several speakers, and two of them were researchers from the University of Colorado.  They explained where research is today, what we can maybe expect in the future and the link between Alzheimer's and Down syndrome.  I walked away with a bit of a better understanding of what happens when the extra chromosome 21 is created.  In my poor laymen's term, basically, genes stick in places where they don't belong and the communication in the body systems gets blocked and, as I would describe it, fuzzy.  That's pretty simple, but of course, it's much more complex.  But, I'm not a scientist ("Really?!" you ask!). I wish I had the slide that showed these examples.

Then this last week, news comes out that researchers have found a way to suppress duplication of chromosomes.  This is huge.

If the extra chromosome isn't created, then there won't be extra genes sticking in places where they don't belong.  If those extra genes aren't sticking in places they don't belong, Clara can easily have her brain tell her arms to grab that toy instead of trying to get that message through all the muddle that exists there now.

This is very exciting.  I think my little girl is who she is regardless.  If we are able to give her gene therapy one day, it's not going to change who she is.  It's not going to change her beautiful smile.  But it is going to help bring her out of the haze that is trisomy 21.  I welcome that.  I'm pretty sure she welcomes that, too.

It's not going to change the way she looks, or the hole in her heart, because her nasal bone and heart have already missed that development in the womb, but that doesn't matter to me.  She's beautiful regardless, and the hole in her heart can be fixed.  However, for other children in the future, perhaps even the birth defects can be completely avoided.

One day, gene therapy or not, Clara is going to proudly declare that she has an extra chromosome that has helped to make her the unique person she is.

Being a part of this extra chromosome crowd is very exciting.  I once thought I never wanted to be here.  Now, I don't want to leave.

I'm sure there are friends, family and acquaintances who would state with certainty that I screwed up big when I left a good job permanently rather than take 6 weeks maternity leave.  After all, it was my job that has afforded my family an easy lifestyle in which we knew the bills would be paid, we could maintain a roof over our heads, food would be on the table and we could take a nice vacation now and then.

As further proof that I screwed up, I am finding it difficult to find another job in that pay grade, let alone a lower pay grade.  I can't even get called for jobs that don't require a degree.  I've applied for over 50 jobs in the past month, and I've been called for two interviews.  I cancelled one.  It was too similar to the job I just left.  I don't want to live my work anymore.  I want to work and then come home and live.

And even further proof I screwed up?  Daycare in this area where we live is not affordable with two babies.  The job I left was in a city where daycare is more than half the price of what I will end up paying here.  If I accept a job, it has to be at a certain starting salary, because with daycare expenses we may as well be paying a full-time employee $10 an hour.  It's the same cost.  If I took a starter job at $11 an hour, I would actually be bringing home $1 an hour.  Before taxes.

So, did I screw up?  Everyone might think so, but I don't think so.

We've weighed this out and we've decided that I will keep looking for a job and if I receive an offer at a certain minimum salary I will accept it; but, until then, I'm staying home with the babies and applying for disability for Clara.  I think that added income will keep us out of the red.  We may come out flat (we hope), but we will manage (we hope).  And as long as I get to stay home with these two wonderful creatures that keep my own my toes, Momma's happy.  This is what I want.  This is what I have desperately wanted since I found out last November that Clara would be born with Down syndrome.

It's slightly scary.  But, if I don't get called for interviews I'm not going to worry about it anymore.  Daddy thinks we can do this.  So do I.

Welcome me to being poor.  But happy.  Go me.

As I've stated before, I don't get out of the house very often during the day with the littles, and before I do, I always have to have a plan of how I'm going to keep the two of them in tow at each of our various stops.  I usually end up deciding it's best to wait for Daddy to get home so I have help.  But, today I needed to visit the post office to mail packages so I went ahead and tossed a couple of other errands into the mix.  To keep the bigger little good, there was the promise of a new toy at our final destination--the world's greatest toy store.

The littles keep a piggy bank where Daddy and I toss our spare change.  It was once solely Lxkas's piggy, but it's only fair that he share now that he has a little sister.  Usually, by the end of two months there will be well over $10 in there, and that's when it's time to visit the Coin Star machine in our Neighborhood Market so he and sissy can cash out for a new something special.  That something special is usually a toy from the Thomas and Friends franchise for Lxkas and something Clara can chew on.  And yes, Lxkas's take of the loot is usually a bit more than Clara's, but her needs in that department aren't yet as great as his, so for now I think we're okay.  Today was no different.  

Lxkas proudly carried his cup of change into the store while I carried Clara.  He didn't even threaten to run away, which was a relief because as we walked I kept envisioning the nightmare scenario where I'm trying to pick pennies, nickels, dimes and quarters off the floor while I'm juggling a baby in one arm and trying to catch a 2-year-old with the other.  I would be one arm short and the whole scene would be quite embarrassing. 

When the Coin Star finished counting we had $13.84.  I added $4 in cash that was in his piggy and their total was just under $18.

Upon our arrival at the toy store  he was antsy to get out of the car and he knew right where to go.  In this particular aisle there is a large train table set up with several examples of Thomas's friends who have what looks like miles of track to explore on.  In fact, we got the idea for Lxkas's much smaller train table from this one.  His train table was a big hit when he received it on his 2nd birthday last month.  However, as of late it's been a bit disheveled and neglected with track strewn where ever and "choo-choos" (as he calls them, though he's starting to call them engines) that have wandered far from home to different parts of the living room.

He was so excited about adding to his collection that he didn't allow Bash (the new engine's name) to be bagged at check-out, and as soon as I had snapped him in to his car seat he was tearing through the packaging while I fastened Clara.  When we walked into the house he saw his train table wasn't good enough to welcome its newest member so he directed me in helping him put his track back together and collect all the engines we could find.  

Once again the train table, the track and the engines are as exciting as they were the day he first received them.  The train table sits immaculate with engines lined up and awaiting their next adventure with the bigger of the littles--until the coming weeks when one by one they slowly adventure away to be forgotten under a couch or down a vent.  He will play with them, but never will they be this exciting again.

Until, in a couple of months, when I'm almost positive a new engine will join the ranks and they will all get together for another welcoming party and to be special again.  

Today someone's facebook post was a video of their baby boy sitting up with minimal support.  As I recall, her baby is about a month younger than Clara.  It made me realize how quickly Clara is already falling behind typical children developmentally.  And actually, I started realizing it last Friday when Clara's provider was here finishing up her visit and prescribed, "Tummy time, tummy time, lots and lots of tummy time."  I could see for the first time that she really meant it.  And I started realizing it after her visit when I scrolled through  my phone for photos dated September of 2011, when Lxkas was 4 months old.  He held his head high and supported his body with his back.

Clara still thinks she's a newborn.

I didn't allow the video to ruin my mood or even my moment.  It actually made me more accepting.  When Clara was born I had hope that she was going to be the exception to all children with Down syndrome; she wouldn't be delayed.  That hope slipped away today and I'm okay.

The mother of the baby in the video has a right to be proud of her little guy.  He's doing great and is developing ahead of his peers, for sure.

I told Clara a little bit ago that she needed to start taking her exercises seriously.  I told her it was time to stop being a newborn.  She just smiled at me and started her adorable cooing.

She can be a newborn as long as she likes.

My baby girl isn't going to keep pace with all the other babies out there her age, or even younger.  She'll develop when she sees fit.  At least she's damn cute doing it her own way.

I'm so proud of my little Clara.  She's being all she wants to be in her own time.

"I know it sucks and it's kinda scary, but you're going to have to fight for her.  The doctors aren't going to do it.  It all lies with you."  Clara's provider told me this earlier with serious concern in her eyes, and I knew as she was saying it she was right.  She was agreeing with what I had just told her:  I plan to voice my concerns to Clara's pediatrician next week and convince him we need to find a plan of immediate action, even if it's within the same group of cardiologists.

I can't let this sit.

I know that if Clara was the cardiologist's daughter she wouldn't wait three months to find out if she was developing pulmonary hypertension--a condition that progressively gets worse and in which the life expectancy is just a handful of years.  I can't wait either.  I can't wait for it to progress to the point that it's irreversible.

It's so easy for a doctor to say, "I'll see you in three months."  And during that time the doctor doesn't worry.  She'll forget about us and pick up where she left off when we show back up; and if something is worse then she'll deal with it then.  That's the way it is in the medical world.  They can't worry about everyone.  They can't save everyone.

Clara smiles so big.  I hold her in front of me and her mouth opens and turns up, her eyes shrink into cute little half moons, and her cheeks lift in response.  She doesn't know.  There's a chance she could be getting very sick.  She doesn't know that her mommy's eyes are extra sparkly because she's fighting back tears every time she looks at her now.  She keeps smiling.

There is so much beauty with her.  Beauty that I have plans to live a long life witnessing.  Beauty that I don't mind if I'm the only one who sees it.  I don't mind if I don't have to share it.  But, I do mind it being taken from me.

Regarding my update last night, I guess I should have waited at least one more day to update.  Last night all was wonderful and my baby girl was doing so well.  Today I find out there could be new signs of trouble.

I'm angry.  I'm pissed.  But I have no one to be pissed at.  Who do I blame for this?  If I was a religious person the obvious answer would be God.  It's tempting to become religious just so I can lay that blame.

I haven't even cried yet.  I want to and I can feel it's in there, but I have to stay strong, or at least appear to stay strong.

Clara's platelet levels are high.  Normal is 150-450.  Her's are at 517.  But that's not the sign of trouble, because as of right now I have no idea what that means.  The hematologist wasn't in today.  She may want to see Clara back sooner than three months.  I guess they will call me if they do.

Our second appointment of the day was with the cardiologist.  That woman.  She makes me mad just because of who she is.  As she explains Clara's diagnosis to me she closes her eyes as if she's flying high on drugs.  It's annoying.  I don't know if she values Clara's life because of a question she asked me on our first visit.  I've dreaded seeing her again, and then she goes and delivers us bad news.

She begins by telling me the right side of Clara's heart is still slightly enlarged.  Still?  I'd never even heard this!  But she says it's nothing to worry about.  I have nothing to worry about.  And then she tells me the echo-cardiogram showed pressure from Clara's lungs.  This could be pulmonary hypertension developing.  I ask what that would mean and she replies it would be bad.  But 2 minutes ago she told me I have nothing to worry about--there's nothing to worry about.

But, the pulmonary hypertension is something to worry about.

She wants to see Clara back in three months for another echo-cardiogram.  If the pressure is still there then the next step would be to put a catheter in her legs and go up to her lungs to verify the high blood pressure in her lungs.  If it's verified they would go ahead and perform surgery to close the hole in Clara's heart, which, by the way, hasn't gotten any smaller.

The hole in her heart and the pulmonary hypertension are supposedly unrelated.  However, the hole makes the PH worse because of the extra blood it lets into her lungs which adds pressure to the already existing pressure (at least, that's the way I understand it).  Also, once they close the hole there's a chance the PH could go away.  If they are unrelated this doesn't make sense to me.

It also doesn't make sense to me that the right side of her heart is enlarged and from my super-fast-self-education via Google this afternoon, that is a symptom of pulmonary hypertension.  What if she already has it?  Why are we waiting three months to take care of this?  I'm not really down with that.

Clara's 4-month check-up is on the 10th.  I'm going to go over this with her pediatrician and maybe he can make things happen fast for us.

I have serious concerns about this.

Now, I have to go feed a fussy baby.

Things couldn't be more fantastic around here.  The babies are healthy, my oldest daughter is out of school for the summer, and I get to stay home and enjoy them all.  But I'm afraid my time with them is coming to an end as I've started looking for employment.  I'm more afraid of not finding employment.  As I sit now I might be able to stretch another six months out of my savings, but I don't want to cut it close.

Clara continues to grow and thrive.  She's awake more now.  I remember a couple of months ago I worried she was going to sleep her life away.  Now it gets difficult to catch a break.

Her provider has us working on neck and trunk exercises so she can hold her head up on her own.  But, Clara can hold her head up.  She just often chooses not to do so.  If I hold her high against my shoulder, she holds her head straight up to check her surroundings.  If I prop her in a chair to sit up, her head flops over.  I don't quite get it.  But, that's Clara.  She doesn't explain her choices to me.

I don't believe I've written here since Clara's last hematology appointment, so I should report that a month ago her platelet levels were entirely normal--even on the high end of normal.  With that our doctor visits are finally slowing down.  She hasn't seen any doctors since that appointment.  For us that's a big deal since for a while we were having a couple of visits a week.

She is being put on a quarterly schedule to check her platelets and make sure they plan to stay normal.  That new schedule kicks off at 10 am tomorrow, and then tomorrow afternoon she goes to the cardiologist so we can look in on the hole in her heart.  Both appointments are routine.  This little girl is strong.