Father's Day

I have thought so much about Father's Day over the last several weeks...about what makes a "good" father, and how much your life is altered by the example your dad exhibits.  I remember last Father's Day so clearly.  I sat with Matt, just relishing in the image of him snuggling this adorable, perfect, flawless baby, and our lives speeding towards happily ever after. 

 In the challenges we have faced since then, we have been given the most beautiful little boy that just adores his Daddy.  Matt has gone so far above and beyond what makes a Daddy amazing that I don't think I can find the words to describe it.  He has loved, fought for, cried over, snuggled, and cared for Parker every second of every day.  He has tirelessly worked to make sure he can provide for our family and meet Parker's needs.  He has invested himself in every therapy appointment, every doctor's visit, and reveled in each of Parker's wondrous milestones. 

Matt makes me a better mother.  He is just so strong and purposeful in everything he does for everyone around him.  And every day, I sit back, thrilled at where my life is, and so thankful that I am able to share the journey of parenthood with this man.  SO thankful.  

I am also thankful for both of our fathers.  These two men do everything they know how to support us. They have embraced Parker with such humility and grace, and watching them each hold him and interact with him is so humbling.  I am so appreciative of all of the incredible dads that are a part of my life.  

Tybee Island with the Future Mrs. Hunter!

We had such a fun weekend in Tybee with all of the girls from 6 states, all together to celebrate Meg!  The house we stayed in was beautiful, and bunking with my Miami girls made me feel a little like we were back in college.  The Law sisters even introduced us to some new ( and awesome) games that made everyone feel sufficiently aged.  The beach time was much needed, and it was great to get to know so many of the people who will be at the wedding with us.

Matt was amazing at getting pictures of Parker too.  It is so hard to be away from him, but I know it was a great bonding time for the Preis boys.  

Now, it is back to the daily grind.  In the midst of my awesome girls trip, we had some hard news to deal with.  We lost a home we loved in negotiations that turned out to be extremely shady and greed-driven (though, let's be honest...it is rare for negotiations on anything to be devoid of greed).  We were fairly deflated by that, as it has seemed like an endless battle to find our house match.

More importantly, though, was that my Grandpop had a mild heart attack.  I am so thankful that it is already in our plans to head out to Jersey next week, and will likely be anxious until we get there.  I am definitely hyper aware of the health issues that have been plaguing both sides of my family in the last 6 months.  Each new issue that arises definitely installs a little more fear in my heart and panic about figuring out the logistics of how to spend time with the people we love, and meet our professional responsibilities, and Parker's obligations.

For now, while my flight is delayed about 3 hours, my goal is to figure out how to take a deep breath and enjoy each moment.  Can't wait to snuggle my baby and hug the best Daddy ever.

GiGi's Playhouse 5K Weekend

This past weekend was a blast!  Parker was once again spoiled with company.  Every time this happens, I envision him dipping a bucket, and filling it with all of the love, energy, and support of those around him to help him get through all of the hard work he has to do to progress and get stronger.  I can see it in him every day...he is such a source of strength, motivation, and admiration for Matt and I.  

Friday was my last day of work for the summer...and anyone who knows me understands how much I have been looking forward to this.  My goal is to not let me apprehension about it being over spoil any of the fun moments we have planned.  It still hasn't sunk in yet!

P with Miss Hilary and Miss Lisa

Saturday, we had a packed day! We went to GiGi's Playhouse for the June therapeutic play groups we love so much.  As always, PT Cathy and DT Pam gave us so many great things to think about and work on with P.  We love getting to see everyone each month, and watch them all grow up and succeed together.  After that, we met Auntie Mallory and Jaimee for lunch at Mago Grill --and happened to walk through an Art event on the way.  I had a margarita fresa, got to relax, and catch up!  Our next Saturday activity was looking at houses.  We went back for a 2nd visit to the house we really like...and are hoping to put an offer on it as a few more things fall into place.  We are hoping it doesn't get snatched out from under us.  Our last Saturday activity was dinner with the MacCarthy's! We so love getting to hang out with Auntie Michelle, Uncle Sean, Michaela and Finn.  I love watching Michaela --2 year olds are inadvertently hilarious and adorable.  My favorite is when she comes around to give everyone hugs and kisses!

The main event was Sunday! We were stunned at how many people go to the GiGi's Playhouse 5K.  I loved that there were activities and events for everyone.  We had a sign for "Team PARKER" and blue leis for everyone to wear --which turned out to be handy for times during the walk when we all got separated.  Parker was a champ, and slept through the whole walk.  We got a great photo of all of the strollers lined up of his baby friends!  It was so much fun, and we have high goals and fun ideas for next year.  I can't thank our team --participants and contributors -- enough for coming to love on and fight for my baby boy.  We ended the day with Buffalo Wild Wings with the Aunties, significant others, and friends. 


Today, I am filled with such appreciation for all of the people in our lives who continue to overwhelm us with their support.

I love the idea that all love is the same...equally important...equally life defining...

Playing Catch-Up

Whew the last week has flown by!  I hate when I don't get a chance to blog...it usually means too many thoughts are left swimming around in my head, which never makes for a good time!  

We are officially only a few work days away from our first mama-and-Parker Summer, and one could guess how excited I am about that!  

I will say, it is amazing how much becoming a parent plays with your mind.  On one hand, it is the most insecure and terrified I have ever felt in my life.  There is a constant debate happening in my mind.  Is ____ what is best for Parker?  What if daycare is better at keeping him on a routine than me?  Will I be able to ____? How much longer should I pump? What if I don't pump enough milk? and on and on and on....

On the other hand, I know with such certainty that Parker is the love of my life.  He makes me SO excited for continuing to build our little family, and the sweets are so much sweeter with him around.  Those who know me would not believe how I DON'T mind getting up early with him, just because I get to see his smile every morning.  I feel pride because he is so smart, that he smiles when he sees the shadow replaced by light when the door opens to his room in the morning...knowing that we are coming for him.  Ultimately, I am excited for many more "firsts" this summer, even if they come with some unsure moments, or even mistakes.

This past weekend, we enjoyed a visit with Nonna! She came to see Parker and snuggle him, which he always loves.  I will say that Chase is particularly needy when this happens...thinking that people are there to see him instead of Parker.  We ate some great food, went to see Auntie Morgan in her new apartment in the city, checked out the italian and japanese stores, and relaxed.  We also got to see Ms. Carol two weekends in a row! How lucky are we!

The rest of this week should be filled with friends, family, and fun.  GiGi's Playhouse 5K here we come! Parker, Mommy, and Daddy will hopefully have a big team to walk with :)

Cardiology

On Friday, we went for Parker's follow-up cardiology visit.  We REALLY love our cardiologist (aside from wishing we didn't need to see him).  He is friendly, genuine, and is so good with Parker...and with us.  He knows how to word things in a matter-of-fact way that isn't completely terrifying.  There is something about seeing doctors that are intentional about seeing pediatric patients.  They are SO much better with kids!

Parker's ASD (atrial septal defect) is moderate.  It is a 6mm hole between his atrial chambers (top of the heart), which is pretty large considering the size of a heart.  A severe defect would be somewhere around 10mm.  His hole is not any smaller from the last visit in January, which we were told is fairly common.  The hope is that his hole decreases in size significantly over the next few years.  

Essentially, our cardiologist will continue to monitor Parker's ASD, his growth, and his overall health (with particular attention paid during winter months) as well has its size in order to determine the need for an intervention --which, if Parker has a bad winter in terms of illness next year, could be sooner....or we have a 50/50 shot of it never being needed.

None of the things above are news to us.  Dr. Carr was very explicit with us at our January visit.  The part that was new information hit me like a punch, though.  Dr. Carr informed us that when a catheter fix of a heart is being done, a device attaches to the walls of the heart to seal the hole.  In Parker's case, his hole is not centered on the wall, making a device insertion unstable and vulnerable.  This means that if Parker does need an intervention (again, 50/50), then it would definitely be surgical.

While he didn't tell us that our odds were any worse, I have admittedly been using the "maybe it will just be a cath procedure" thought to make myself feel better.  I know a large percentage of children with DS go through this, but the thought of someone breaking through your baby's rib cage to do surgery on his heart is pretty panic-inducing.

An interesting tid-bit that our cardiologist shared with us is his philosophy on WHEN the surgery takes place.  We know that unless there are other factors in play, the surgery would happen some time between the ages of 3 and 5 years old.  The thought is that, since the procedures are about the same medically, that getting it over with at a younger age would allow for a child to recover more easily emotionally.  A 5 year old is fully capable of remembering the details, fear, and pain of the procedure...whereas a 3 year old is less likely.

Regardless...this whole post is one that I'd love to just avoid avoid avoid until I am forced with a reality one way or another.  

6 months!

I cannot believe that 6 months with my baby have gone by already!  I still feel like it is brand new, and his infancy is half over!  As much as it scares me that time is moving so quickly (and with that comes so many unknown events), every month comes with new adventures and milestones.  We are still waiting for Parker to really enjoy eating...right now, the spoon confuses him and the tastes startle him.  He is able to hold his head up, look around, giggle, squeal, and cry because he is not being held.  He is so beautiful, and every day forces me to wake up stronger so I can be his advocate.  

This next month of his life will hold so many new experiences.  First summer with mommy is obviously one of my favorites, but I am also excited for his first time in a pool (get it together, Chicago!), his first trip to New Jersey, meeting his Grandpop Cucchiaro, seeing his cousins, and playing with friends.  I am nervous about his next round of evaluations, his vision, and the uncertainty of our house hunting.  In June, I will also be taking a trip to Georgia to spend time with some of my best friends celebrating Meg and Jace's wedding in July.  It will be my first time away from from Parker overnight....and it will be three nights to be exact.  I am extremely nervous about being away from him, but I know I will have a blast once I get there.  I keep telling myself that it is really only two days of not being with him.

I am so excited for what the next 6 months have in store for us, and know full well that this time in our lives is ever-changing and thrilling.

Mama & Parker Sunday

Sunday was a Mama and Parker hang-out day!  We took Daddy and Uncle Sean downtown for...you guessed it....a beer event!  It was good for them to go out and have fun, and I of course love the snuggle time I get out of it.

Parker and I went shopping for summer toys-- floats, beach/pool tent, pool hat, etc.  SO excited to take him in the pool for the first time...hopefully this weekend!  

Then we went to lunch, where P sat patiently waiting for me to finish eating so we could continue to explore.  He would randomly burst into giggles, and just stared at everything around him.

He did have quite fussy nights, though, so we are thinking the teeth are coming soon!  

T-minus 11 more work days until it is a Mama and Parker SUMMER!  

Last Minute Trip to Lake Geneva

What an awesome weekend!  Saturday, we went on a last-minute trip to Lake Geneva with Aunt Michelle, Uncle Sean, and cousins Michaela and Finn.  The lake is gorgeous! The kids got to play in the grass with one another, while we enjoyed the beautiful weather and adult company.  

Finn and Parker even wore the same outfit...unplanned! We all got a good laugh out of that one.

My favorite moment: sitting on the rocks by the water with Parker...watching him take in all of the sights!

Opthamology

I so wish that there was an "intermission" for doctor appointments and therapies.  I know it would make them take longer, which would be annoying, but I could really use some time to synthesize and analyze the information I am given.  I always end up really thinking things through after the fact, and then coming up with more questions.  Every appointment involves a period of time 2 hours later where I feel like "I should have asked ___" or "I wish I had thought of ____" or "What was that word again?"  I at least wish that, like teachers, doctors and nurses had office hours like in college where they could answer emails of questions that parents and patients have after an appointment.

This eye doctor appointment was no different.  I feel like I didn't ask some of the most important questions! (Does nystagmus affect vision? What if the patch doesn't work? How is his vision likely to be right now? Will he definitely need glasses at some point? and on and on and on.....)

Parker has had some eye issues slowly building for the last 6-8 weeks, primarily in his right eye.  His eyes seem to be crossing more often and more severely every week.  This week, I started to panic because I noticed them get "stuck" crossed a few times.  It is hard to watch your baby struggle to uncross his eyes because he knows it isn't right.

His eye doctor seemed to be very fascinated with him.  He showed some signs of Down Sydrome (crossing of eyes due to low muscle tone) and some of Klinefelter's (small nerves possibly due to low hormones).  He also has something that I now know is called "Nystagmus."  His right eye shakes quickly back and forth.  Several weeks ago, I noticed it happening occasionally.  At this point, it is pretty much constant. 

Overall, she agreed with every other person that has seen him in saying that he is definitely physically at the "mild" end of the spectrum so far.  Only time will tell how he fares cognitively...though in our eyes he is already so smart and aware, among many other amazing things that leave us in awe daily.

For now, he will wear an eye patch for one hour a day over his better eye.  It is so sad looking...but he couldn't care less.  He resumes playing with his toys and carrying about life...

...as always, teaching me to take a breath and relax a little, and let him lead the journey.