DT and OT

Parker had his first week with all four therapies in place!  He had developmental and occupational therapy for the first time.

In occupational therapy, Parker is overlapping a lot with physical therapy until his core is strong enough to begin more fine motor skills.  He is working on bearing weight and sitting up, as in PT, and on grasping and reaching for objects around him and in cups or smaller locations.

Developmental therapy has been both of our favorites so far.  Our developmental therapist has a PhD. in development, but is considered a music therapist.  She uses songs and instruments to help Parker learn and develop.  Since he loves music, this was a hit for him, and I really enjoyed learning too!

Overall, this was a pretty exhausting week for both of us.  I am getting anxious about going back to work and somehow fitting in 3/4 therapies a week.  My mantra at the moment is just to do the very best I can, and just breathe.  

Neurology

Whew... these appointments are happening faster than I can write about them!  We have officially added Neurology to our ever-growing list.  

 Parker had a neurology referral because of a few different red flags, but mainly his nystagmus- which is involuntary shaking of one or both eyes.  This can either be localized to the eyes, sometimes indicating low vision, or can be a symptom of a neurological issue.  Neither sound great to me!

His neurologist has recommended that he get an MRI and MRA of the brain to make sure Parker is in the clear and also to rule out a blood vessel disorder called Moyamoya.  He is also having an MRI of his eye orbits.  Those are all done under sedation...which makes this mama very anxious.  I can't feed hom anything for more than 4 hours...We have pushed to get this appointment done before school starts...so Monday it is!

The other test his neurologist wants done is an EEG.  This studies his brain waves to rule out any seizures or abnormalities.  This is done while Parker is "sleep deprived" to force any potential issues to show themselves.  Go ahead and ask me how you sleep deprive an infant......okay I'll give.  To sleep deprive Parker, we have to only allow him to sleep from midnight until 4am...this includes keeping him awake for the car ride downtown. This one isn't as nerve wracking as sedating him...but sure is exhausting to even think about.  This one is Friday! 

So...I will be scouring the Internet for tips on withholding sleep and food from an 8 month old...yikes!  Keep us in your thoughts, as these appointments are likely to be hard on the whole family!

Lucky!

Through GiGi's Playhouse, I have found an amazing group of moms!  We have thankfully created a little community, passing on advice, suggestions, wisdom, frustration, and pride throughout each of our individual but similar treks through the special needs world.  Our babies are fortunate enough to grow up together and know that they are never alone and always have a village of people supporting them.  So, I consider myself lucky!

The picture below is of some of our group after one of GiGi's Playhouse LMNOP classes --a signing,singing, and learning class that we have been fortunate enough to be able to attend this summer.  Thank you ladies, for including Parker and I!

3rd Anniversary

Finally, 17 days later, I am getting the chance to talk about our anniversary!  To be totally honest, after a year where we really needed to celebrate our marriage the most, we didn't even get to be in the same state!  Bummer!  Matt began a new job on July 1st, and being in-between trips (New Jersey and Columbus), it didn't make sense for me to drive an extra 10 hours with Parker to be in Chicago for 2-3 days.  We are still working on a good way to celebrate!

I remember very clearly last summer taking a deep breath, and relishing in the fact that we had made it through 8 months of long distance, the uncomfortable first trimester of pregnancy, and a huge, life-changing move...and how I anxiously awaited our baby boy.  I kept waiting and waiting to take that sigh of relief --waiting for when things would finally feel calm and comfortable.  I think I am still waiting!  In my heart I knew that our challenges were not over yet...I just couldn't grasp how they would unfold.  

A dear friend of mine mentioned to me once that having a baby, as much of a miraculous gift as it is, can make cracks in a marriage be exposed as if they are canyons. I definitely think that can be true.  Couples many times need to relearn how to navigate their relationship and how to communicate again post-baby --with quite a bit of exhaustion, snuggles, and spit up involved.  I also think having a baby with special needs can sometimes carve out those canyons with fear, pain, anxiety, and some more fear.  We had a lot to learn, and an abundance of "new" in our lives.

That being said, the last year was the best gift we have ever been given as individuals and as a couple...it was just wrapped deeply in a lot of packaging that took some time to unravel. Every day we look at Parker, and then each other, with pride and endearment.  We are not without imperfection or the "canyons" that arise as a part of parenthood and simultaneously navigating the special needs world, but we are stronger and more determined than we ever have been before.  My husband works SO hard for us, and seeing him with Parker just makes me turn to mush. 

We are ultimately so lucky to have one another, and to be surrounded by so many strong couples that set incredible examples for us.  We are deep in the eternal and continuous adventure of appreciating the intricate, breath-taking, humbling pieces of our marriage.  I love you, Matt, and this crazy journey we so take for granted!  To many, many more years....!

Summer Trip 2013- #MegPlusJace

The Law/Hunter wedding was a blast!  Even though it was hard to leave our little man behind (and got many inquiries as to why he wasn't there), it was fun to spend some more time with the girls I love and so seldom see, and to have an evening "out" with Matt.  

The "girl time" started off with picking up Allie and Kalyn from the airport! Woohoo!  There is such exhilaration that goes with picking up friends or family from the airport-- you just know that there are good times to be had.  We spent the night catching up, and relishing in the fact that this has been an "on" year-- with more opportunities to see each other than normal.  

Early Friday morning, I kissed my chubby-cheeked babe goodbye and we headed towards Columbus for a fancy day of pampering...mani-pedis and eye brow waxing have been luxuries I just haven't had time....or let's be honest...energy for over the last year or so.  We got dressed up, and went to the rehearsal dinner, which was of course beautiful and delicious!  It was so much fun to see Meg so excited about the whole weekend, and the Law family is always a blast to be around.  I felt lucky to be included in all of the festivities!

After the "welcome reception" at the hotel that evening, we headed to the Law house for a sleepover before the main events began.  

Saturday morning, bright and early, we got ready, and had time for more luxuries!  A yummy breakfast filled with Meg's "11 favorite things," updos, and makeup!  It was such a girly morning and I loved every second.  Just as the night before, Meg's excitement was palpable! 

We headed to the church and Ohio State House for the pictures, ceremony, and reception.  Every event was planned perfectly and went off without a hitch!  Both the church and State House were gorgeous!  We had so much fun dancing, catching up with college friends, and staying up past 10:30! 

Aside from the beautiful ceremony, one of the most touching things that stood out to me was the closing song of the night.  I've posted before about Zach Sobiech, the INCREDIBLE teenager with cancer who lived by philosophies that we could all learn from.  He communicated his love for life and his family through music, and the closing song of the night was one of his --Clouds!  We also had the honor of hearing one of his good friends play the violin during the ceremony.  It was just a heartfelt thought that really captured the upbeat, love-filled feel of the day.

Summer Trip 2013- Springboro

After 9 hours of driving -we finally made it back to Ohio after being in New Jersey for a week.  It is and always will be a bittersweet drive.  There is a part of me that is still 12 years old and hates the "Welcome  to Pennsylvania sign" and 70 West.  I have to give big kudos to my mom who volunteered to ride back with us.  Our family trips always were about speed and stops were few and far between --so traveling with a baby is a little different.  Parker made it 8/9 of the way to Springboro without a peep...but made up for it that last hour!

We spent Tuesday and Wednesday recovering and relaxing a little bit!  We had a visit with the Zimmer girls, Tammy, Ashley, and Lexi- which is always a blast! They loved Parker and of course he loved being fawned over by cute little girls! 

Tuesday night, we got to go see George, Joe, Jen, Eric, and sweet baby Nora --who is just beautiful, and so so tiny! It is amazing how you forget what a newborn feels like, even though you just had one!  It was great for Parker to meet so many more friends that already love him!

Wednesday July 3rd was our 3rd wedding anniversary!  We were both really bummed that we were apart on it, though.  More on this later!

Thursday was really spent getting ready to be away for the weekend for the Hunter/Law wedding!  We pureed food, showed Nonna and Grandpa how to make bottles, organized the mountain of "stuff" babies seem to attract, and got ready to pick up Kalyn and Allie from the airport!  I am always sad to leave my baby, but at least glad it was for something so fun!

It was nice to be in Springboro, and so good to see so many familiar (and missed) faces!

Summer Trip 2013- New Jersey

The second leg of our trip was one I anxiously awaited since Parker's birth- his first New Jersey adventure! Once again, he got to meet many family members for the first time, and see some familiar faces as well.  One of the most moving for me was his first time seeing his Great-Grandpop Cucchiaro.  It was the most perfect meeting...which I wish I had on video!  We walked into the house after 8 hours of driving behind him while he was on the phone.  To see the shock, excitement, and awe on his face is a memory I will definitely cherish.  We spent the week taking care of Grandpop, visiting with family, and awaiting the big event- Robert's graduation party!  Part way through the week, the rest of the family came, so it was a real house full of mostly Italians with a few guys (Matt and Kevin) to mix it up.  The pictures really tell it all on this trip --a lot of quality family time that we haven't had in a long time! The graduation party was a hit-- and Robert is so awesome!  He definitely doesn't get enough credit for just being a good guy.  He helps my Grandpop every day, goes to visit him, comes over every day we are there, and visits with his cousins who are older and much more boring!  I love the kid...and am seriously proud of him. 

Rock Star-dom

I know I have said this before, but Parker has this amazing way of proving people wrong...especially me.  After being completely scarred and traumatized by his screams in the hospital every time he got his heel sticks, IVs, or blood draws---shots and routine blood work make me really anxious.  I will never forget Dr. Fisher telling me with a mix of apprehension and pride that Parker was so strong that they needed three adults to hold him down to put in his IV in the NICU--an issue their NICU had never experienced until that point.  

So...yesterday, when it came time to get HIS thyroid blood work done, I was a nervous wreck.  I called the hospital, specifically asking for Dr. Fisher or their most experienced and skilled nurse/phlebotomist to do it.  They even gave us one of those wrist bands for him which was an instant hospital flash back.  

But in his typical fashion, when I make a big deal about something or am really nervous about it, or am worried because he isn't doing what he should be..........he proves me wrong! And that is such a great (though slightly shameful) feeling!

Parker had his blood drawn without making a sound.  He also got two vaccines at his 8 month pediatric visit later in the day without crying...though he did make his scrunchy "I'm really mad" face!  

 

The bottom line, as always, is that this boy is so much stronger than us, and has so much to teach us about life.  My current lesson from him remains.....HAVE FAITH!

Back to Reality

We are deep in the midst of unpacking and getting back in the groove of mass appointments and keeping up with life!  We have had quite a few interesting experiences this week!

1) I had my thyroid blood work done...FINALLY (I was waiting to get in with an internal medicine specialist so I could actually have a family doctor again).  It turns out that I have hypothyroidism likely caused by Hashimoto's Disease- which is an autoimmune thyroid issue.  So the 15-17 lbs I have gained SINCE having Parker are not all because I am a terrible eater :)  I started thyroid medicine and am seriously praying that it helps the weight come off easily, and that life can go back to normal-ish.  It is likely going to be a life-long issue that I will need to stay on vigilantly.

2) I had a woman at the grocery store....3 times....tell me in some cute fashion that I need to give Parker a hair cut.  The best one was her looking at Parker and pretending to speak as him saying "Mommy you need to give me a haircut."  Yikes...

3) Wednesday was the GiGi's Playhouse photo shoot for their 2014 calendar!  I am SO glad I don't have to do that every day-- but it was fun for a few minutes! The photographer was a stereotypical artist...very specific with his requests and not too patient.  I CAN'T WAIT to see the pictures.  I'm not sure if Parker will be in the final calendar or not, but it was so great to be a part of.

4) Thursday, he got to go to GiGi's for open play! We got to talk to Nancy about all of the amazing new programs that will be starting in the fall.  GiGi University and Hugs & Mugs sound so awesome for our older kiddos - I am so glad that this network of people is here for us already helping us plan for the future.

4) We had many appointments to get back into this week, with many more to come.  Parker was amazing at every single one - especially yesterday --but that will be a separate post.  My anxiety about being able to keep up with all of these when school starts again is growing rapidly.  It is a lot to manage sometimes!

Summer Trip 2013- Cleveland

We started our long trip by heading to Cleveland! We planned this as a half-way "break" in driving out to New Jersey, and a much needed visit with family.  It worked out more than perfectly!  We had the opportunity to attend Matt's family's Going Away Dinner for Uncle Ian's family.  Though we are sad they are headed all the way to Texas, we are so happy that they have such a great opportunity!

As always, I imagined Parker taking his bucket and filling it with all the love and support surrounding him there! 

Some of our most special moments from the Cleveland trip were Parker's snuggles with three of his great-grandparents -Grandma and Grandpa Manoni, and Grandpa Glass.   We consider each visit we get with them to be such a privilege.  P showered them with smiles and dreamy, blue-eyed stares.

We also loved spending time with Matt's parents, Grandma and Grandpa Preis! We spent some time going through the Preis family tree, and some amazing information and artifacts from Ancestry.com- one of my favorite things to do!  Parker had the chance to show off some of his newer skills, and we all just got to BE together...which doesn't happen nearly as often as anyone would like!  I also got the chance to sit outside under the beautiful trellis and talk with my 2nd "mom!"  She is such a genuinely kind person that adores Parker.  Those are minutes that I will honestly treasure.

At dinner last night, Matt and I, after a week apart, got to sit and talk and relax, and ended up on the topic of our families.  Our resounding theme was how lucky we are!  Both of us can say that we have in-laws that care about us, and so many people that truly want the best for our little family.  More and more, I realize what a rarity that can be.


We left Cleveland feeling gratitude for getting to pack in so much visiting in a short weekend!  Off to New Jersey...

We're Back!

After 2.5 weeks away from reality, we are finally back home!  Our Preis Family trend of mixed adventures continued through our various trips-- filled to the brim with incredible memories and emotionally charged visits.  We traveled through 6 states with Parker, actually visiting in Illinois, Ohio, Pennsylvania, and New Jersey! 

Today, we are home relaxing, unpacking, and readjusting to reality! MANY updates on our trip to come as nap times allow for them!