5 months

Ah! My baby is 5 months old! Every month on the 23rd, I have two distinct moments. The first is overwhelming love and admiration for my beautiful boy (and amazing husband). Parker makes me a better person every single day. He reminds me of what really matters in trivial situations. It is hard to beat his smiles and giggles.

The second moment, though, is shear panic. Panic... at the thought of him getting older..how selfish! Now, to be fair, I have always been a "baby person." I even though about doing my own infant daycare. But beyond my own ridiculous musings, I feel like the precious months when my boy's life will be easier are rushing by. I am so afraid of his adolescence and adulthood...because I am so unclear on how to support him at those ages. When he is a kid, though still difficult, his needs are definitive...the therapies and appointments are generally automatic.

So I resist the impossible urge to reach out and stop time, and instead, try to reasonably soak up every moment. I come home evert night and kiss his chubby cheeks and stare into his sleepy, big blue eyes and just adore him. Happy 5 months little man!

Cake pictures to come soon!

The Dreaded Day is Done!

Finally, this anxiety-stricken day is over.  On an awesome note, I didn't end up needing a biopsy, because the ultrasound of my thyroid didn't warrant one.  I still need to hear official results after the doctor views my scans, but at least it doesn't mean that my thyroid needs to be removed as of right now.  We will see what it is up to after some blood work.

After that, we made our way to our genetic counseling appointment, which has weighed heavily on our minds for some time.  We learned some important information!  To start, we know for sure now that neither of us are official "carriers" of a translocation (forgive me if I am botching this explanation).  This means that no one can tell us that 100 percent of our children will have a chromosomal issue.  Whew!  That being said, our official risk as quoted by our genetic counselor was 1 in 67, opposed to the 1 in 500+ typical rate.  This seems high to me, but it is definitely better than it could be.  

Interestingly, Parker having two chromosomal issues (double aneuploidy) does not seem to raise our chances.  In fact, it is really the Down Syndrome that increases our chances.  Our genetic counselor was able to use her access to medical journals to provide us with some other cases of babies born with Down Syndrome and Klinefelter's Syndrome (a 1 in 25,000 chance for mothers above age 35).  This was important to us, because as of yet, we have not had access to any other official information related to our situation. 

So, we have a lot of choices to make, though maybe not overnight! Obviously, chances continue to increase as both of us get older.  We will need to find a balance between our age and health, and the years between our children.  My awesome husband told me to think of it practically...if you took 67 pennies, painted one black, and seen how many times you picked up the black one...it won't happen for us again.

Lots of reading and thinking for us tonight!

Thankful...

This journey is hard. There is no doubt about it. But there are perfect moments of clarity like this one when I am just overcome with appreciation and thankfulness. I have a beautiful boy, a great husband, and family and friends that have held us up in our darkest moments. Right now, no matter what our genetic counseling or my biopsy reveal this week, I feel such honor for being chosen to be Parker's mommy and such love for my little family. Monday morning...bring it on.

Perspective

I have been reading this family's blog and Facebook posts often in the last 24 hours...www.kateleong.com. And for 10 minutes, I have been thinking of a meaningful way to describe it, and have come up empty-- other than that it is a true testament to the fact that a person's writing can be so life changing.

Kate's writing and experience has made me thankful, ashamed, heart-broken, confused, happy -really just a whirlwind of emotions. It has reminded me of the notion that your experiences are relative...and can't be fairly compared to anyone else's. More importantly, it has reminded me that we should always appreciate what we are given, and understand that our journey is our own to cherish, no matter how challenging or painful it may seem.

I am especially thankful that just when I need it most, I am reminded to take life one day at a time, and really LIVE each moment.

GiGi's Playhouse April

As always, GiGi's Playhouse is a cure for a rough week.  Parker and I, along with his daycare teachers, Miss Hilary and Miss Lisa went this morning for the playgroups.  Kudos to them again for taking time out of their limited weekend to come with us.  It is so soothing to be there with other parents and little ones that can all lend each other support and advice.  The therapists that volunteer, Pam and Cathy, are top-notch and so helpful also.  We are again reminded that our children do everything for a reason.  That reason may not make sense to us in the moment, but if we are going to stop one action, we have to replace it with another.  I think that applies to adulthood also.  Such a great morning!

Curve Balls

Sometimes, life throws you curve balls (which occasionally feel like punches).  I'm not sure if they are meant to push you in certain directions, teach you lessons, or just make you more thankful for the calm, happy times.  I always think of the movie "The Adjustment Bureau" where some organization controls your fate, and makes checks and balances to your life events.  There are so many cliches to describe where we are right now..."when it rains it pours" comes to mind first.  We can't seem to catch a break in any aspect of life.  Yesterday, I was told I have a nodule on my thyroid that needs to be biopsied-- a procedure which my ENT said is "not fun."  I am trying not to worry, and pushing it aside until I know more about it.  Between that, Matt's headaches and illness, Parker's pink eye and minor issues, we are feeling a little run down.  

Admittedly, we threw ourselves a little pity party last night.  We went and got sushi and hung out with Auntie Morgan for a few hours instead of doing any of the cumbersome chores we so desperately need to get finished.  It was exactly what I needed...just a break, free of responsibilities and full of snuggles and good company. 

One thing I am so thankful for is that Matt and I have a way of being able to lift each other up when we are down, and oftentimes, when he is having a strong moment, I am having a weak one, and vice versa. He pointed out last night that I have so much to be thankful for...namely the beautiful baby boy in my arms, and our little family.  

So, we will continue to put each foot forward, and take things one day at a time.  We are helping each other see the positives on days that seem to be seeping with tension and fear.  And we are loving our little boy to pieces...because he is what this is all about.

Genetic Counseling

I decided as a child that I wanted to be a mother.  I was always and still am fascinated with babies and pregnancy.  Once you make that decision, your life becomes full of these dreams and expectations you have for your unborn children.  So much time is spent wondering what they will look like and be like.  When Parker was born, we thought we lost a lot of those dreams, but mainly, they just changed.  The end goal is the same: you want your child to be happy. 

Next week, Matt and I are doing our genetic counseling.  This has been recommended to us since we are so young and have a baby with the rare occurrence of TWO chromosomal abnormalities.  This is terrifying to me, in all honesty.  It brings up so many scary questions that really make me test my beliefs and morals. 

What happens if they tell us that 100% of our babies would have a genetic condition?  What do we do if all of our boys would have Klinefelter's Syndrome?  Would we find other means to continue our family?  

The unknown territory and lack of guarantees scare me to death.  To have another baby with the issues that Parker has and will continue to face would be incredibly challenging emotionally and logistically.  At the same time, I love Parker more than life itself.  No condition changes that.

So keep us in your thoughts, and send positive vibes and prayers our way.  We need them!

Whirlwind Week!

Well, I definitely jinxed us by mentioning the ER in my earlier post.  Monday night, we went to a packed ER with computer systems down for updates.  We were there for a total of 7 hours, got Matt some good painkillers, and were on our way.  Every time he gets one of these headaches, I hope that it is the last time he ever has one.  Nicknamed "suicide headaches" --they are painful to watch, too.  Parker was a rockstar in the ER-- he watched everything from the bassinet/stroller, and then fell asleep for the night as usual!  I am SO thankful for that, as in those moments, there is no room for extra stress.  Luckily, noise doesn't seem to affect Matt's headaches, so occasional babbling or crying doesn't do any harm.

So as always, I will hope it his last headache ever, or at least the last one for a few years. 

GiGi's Playhouse 5k

We are so excited to be part of GiGi's Playhouse! On Saturday June 9th, there will be a 5k run for Down Syndrome awareness, or for those of us who are out of shape, a walk.  Additionally, there will be a Down Syndrome Dash after the 5k is over.  

TEAM PARKER

Our goal is to raise $1000 for TEAM PARKER!  We are hoping to get a big team out there with us and walk our little man across the finish line.

Ugh

I knew this time would come sooner or later...the time when Matt gets one of his infamous headaches post-Parker.  It has been a germy week at the Preis house...with no signs of letting up.  It started with Matt getting a cold mid-week, moved on to Parker getting pink eye and being sent home from daycare, to Matt getting the stomach flu and now on to headache-ville.  If we are lucky, we will avoid the ER, or at the very least, make it there during the day instead of our typical 3am visits.  All of it becomes much more complicated when adding a baby's schedule into the mix.

My goal as untrained, unofficial nurse of the family for the moment is to start getting Matt to be as proactive with himself as we have to be with Parker.  Part of the benefit of living in Chicago are all of the resources at our finger tips-- including some of the most well known headache clinics in the country.  I will work on trying to get him there!

In the mean time, we are doing our best to stay healthy through the rest of this cold weather until summer finally gives us a much needed break.