Opthamology

We went to the ophthalmologist again yesterday.  We waited for almost 2 hours!  In defense of the ophthalmology office, in order to have surgical rights at the hospital, the docs have to agree to be "on call" which can sometimes cram their schedules.

To make a long story (and lots of measurements and tests) short, Parker will most likely need to be measured for glasses at his next appointment in 6 weeks.  His eyes, which are big and beautiful if I may say so, are actually possibly growing too quickly.  That, in addition to the nystagmus and slight crossing leads to the need for glasses to prevent visual delays.

While I am not resistant to glasses, and the new baby ones they have are so cute, I am sad that he needs them.  He is so strong and so compelling that it will be hard to see him wear another vulnerability on his face.  Love him!

 

6 month & DT/OT Eval

First, P has rocked his PT this week.  Truthfully, I was nervous, because our first appointment with our new PT didn't go so well.  She is very aggressive and hard working, giving us lots of homework to do...which is what early intervention is all about, but we have a large language barrier, and she isn't quite a warm and fuzzy person.  She has definitely grown on me!  He is really working hard on gaining muscle strength to sit up and bear weight on his arms in order to get into crawling position.  We are so proud of him!

We weren't surprised to hear that we will need to go ahead and start developmental and occupational therapies once per week, pushing us to 3-4 appointments per week just for therapy- whew! I get tired just typing that!

 I think the hardest part of his evaluation was that he had skipped two naps this morning, and was completely exhausted, which made his evaluation scores not as accurate as they could have been.  It made me feel like a 5th grade teacher again, watching a student with the flu score poorly on a standardized test and not being able to do anything about it.

Ultimately, though, Parker has been the true "show me" baby that his pediatrician predicted.  It is almost as if he can hear what people say he is struggling with, and then decides to go and show them up.  As a mommy, it makes me proud, and as an observer and educator, it is fascinating and humbling.  This boy has so much more to show us all!

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.