Time is flying, and I am getting no better at consistently writing here. 2015 has been crazy for us already. Matt has had business trips and a lot of late nights, I have attended several conferences, Parker had a hospital visit- it seems like it should still be January. So, to continue the trend of re-cap posts, here's to being done with January....
THE FLU:
Ugh. If I never have to go through this experience again, I will be a lucky girl. It was one part traumatizing and 3 parts exhausting. Waking up to your child struggling to breathe with a 104 fever is not enjoyable by any means-- though Parker didn't seem to mind anything except the IV at the hospital. I learned the hard way, but will be sure to warn other moms that breathing treatments seem all innocent and helpful when they are happening, but I was unprepared for the late-night, wall-bouncing energy that comes from five breathing treatments in one day. Parker was literally running from one end of his white metal crib to the other. We were ultimately lucky, though-- he did not develop pneumonia, and only spent about 30 hours in the hospital.
Therapy Updates:
Parker is working hard in all of his therapies, as always! He is walking and exploring running, he can go up the stairs and is just now starting to realize that going DOWN is the best part (via belly slide, of course). He is very slowly expanding his horizons with food. He is still a broccoli/veggie lover, and has been enjoying peanut butter and jelly sandwiches! He still is not a fan of meat, but we are working on it.
Speech remains our biggest struggle. We have quickly realized that if we don't constantly continue to push him to use signs, he will stop using them completely. We aren't sure if that is on purpose, or if he isn't retaining the knowledge of the sign. We are looking into getting additional, private speech sessions. I am looking forward to being able to hone in on this in the summer when I am home with him. I know in my heart that he is better off in his classroom with his friends then at home alone with me, but the one-on-one support is my biggest guilt-inducer. I'm hoping that, as he continues to become more interested in his peers, he will start mimicking them more.
The contacts are pretty much the same. They are stress and frustration causes for Matt and I, but we are consistently reminded of how worth it they are when Parker has them in. As we keep saying- he is a different kid when he can see well.
Parker's 2nd birthday was such a blast. It was the pick-me-up that we needed after losing my Grandpop. It was super-hero themed, which I will admit, we are little bit obsessed with at the Preis house. Let's face it-- it is better than most of the skull, bug, and monster themed junk out there for boys! Plus, we feel like Parker is our super hero.
So two months after his birthday, here are some of his favorites as a partying two-year-old!
Parker's favorite food: Uh-oh. Parker still likes his veggies, but is turning into a carb-hound like his Mama. He loves pasta, macaroni and cheese, PB&J sandwiches, and smoothies- but only the ones Daddy makes!
Parker's favorite toys: Anything he can throw is still his favorite, but in particular, he loves his popper push toy, his Little Tykes car, any and all chairs, his refrigerator magnets, and Chase's tail.
Around the house: Roaming the halls of our house is one of Parker's favorite things to do. His favorite pit-stops are:
- At the kitchen cabinets, because they can be LOUD
- Mommy and Daddy have gotten smarter about leaving the bathroom door shut, but whenever he gets the opportunity, the toilet is a MUST SEE.
- At the dining room fold-up chairs-- because he can push them around the house
- The STAIRS! Because reaching the top before Mommy and Daddy realize he is gone is the best-- many giggles ensue.
- The refrigerator water dispenser tray is his favorite place to hide toys!
All time best: Parker is obsessed with his Daddy's guitar! He loves holding the pick and strumming, and listening to Daddy sing.
We have started off 2015 at a pace that seems as if it is a thousand miles per hour and slow as a snail all at the same time. We had three "cold days" off of school last week, and are slowly trying to get motivated to un-decorate the tree, clean the house, and start crossing things off of our home/marriage/friendship/parenting punch lists. We have home decorating items, like getting a dining room table (which was a big deal to my Grandpop), putting up blinds, and organizing the always-there piles of STUFF - that really should have been done months ago. I'm tired just thinking about it. We have also come to the realization that as a family, we really need to be better about taking date nights and vacations and remembering how much we love each other without the stress of day to day life nipping at our heels (or sometimes, chomping us whole). So that is on the docket to plan, too, which is more exciting to me than choosing blinds.
Amidst all of our indecision on some things, we are kept at the thousand miles per hour pace because Parker has officially entered the toddler club-- complete with energy boosters and insatiable curiosity. We are both loving it and completely exhausted. It is tough in some situations, because he is into EVERYTHING, but doesn't necessarily understand commands-- which goes beyond just simple stubbornness. Things get a little scary when he doesn't respond to the tone/volume of our voices OR our words when in a dangerous situation- like reaching to touch something hot or playing with cords. It is all par for the course of being parents to a toddler!
He has moved up to the next room at his school, meaning he is back with his peers for the first time in several months. We are so excited about this. I'll admit-- it is sometimes panic-inducing to walk into the room and see all of his peers talking and participating in structured activities, and see him wandering around them completely disengaged. We are working on it, though, every single day, and believe that his feisty, bubbly personality will carry him farther than we can imagine.
So for now, 2015 is about improvement all around!
So this is mainly to get my inner-Grinchiness out of the way before the holidays. In January, Parker moves up to the next room at daycare!! Normally, this would terrify me, but I am excited! He does so well with peers as his models. His current room is 12-18 month olds, and he is 25 months, so he will be back with kids his age! After two years and three daycares, it is amazing to me how clear it is when people LOVE Parker, versus being intimidated by his diagnosis, versus thinking of him as more work. I think it is a mixture of Mommy instincts, plus teacher instincts that tune me in to this...and sometimes it is depressing.
Parker has intensely and abruptly entered into toddler-hood. He is mischievous (and clever), wild (and hilarious), stubborn in his exploration, and beautiful. Typical toddler, right? The hard part is that his communication struggles prevent him from comprehending commands or instructions-- so he is diving head-first into two-year-old behavior with the language skills of a 10 month old. This makes some of his behavior challenging. Currently, his teachers are frustrated with his swatting, pulling, and throwing. He is STRONG! So he throws hard, and sometimes hits other kids with the toys he throws. Gone is the baby whose calmness was envied by our friends and family with kids-- which we did love, but truly, we are SO thankful to see him engage with his environment!
The bottom line is, that it has become clear that some people see Parker as extra work and effort, and I hate being witness to that. Teachers have a LOT of responsibility no matter what age level they are teaching. But less teaching or child development knowledge is much more excusable when I know they love my boy. To be fair, this week has been worse than others, but still...I look forward to the next step...because it brings new opportunity to bond with people who love Parker despite his challenges, and who believe in him, and believe he can achieve.
This was it....the appointment that caused so much dread, anxiety, fear, and every other similar adjective in the book. This one single cardiology appointment hung over our heads, looming, for an entire year. I heard the Coldplay song "A Sky Full of Stars" on the way there and had tears in my eyes, because it makes me think of my Grandpop, and tends to ironically come on whenever I am thinking of him. At the time, it felt ominous and sad, but I know that it was his message that everything would be okay.
The very last thing in the world we expected was to see the cardiologist's stunned face as he looked at the echo-cardiogram, and the very last thing we expected to hear was that we could come back in two years just to feel better about following up. We were prepared for planning follow-ups and surgery dates in 2015. We were prepared to hear that nothing had changed (like last year).
To say we are grateful feels like the biggest understatement of our lives. I know that so many other parents have so many worse issues to deal with than a moderate-sized hole in the heart, but for us....this situation (and the threat of open heart surgery) was unbearable. This is a massive weight off our shoulders.
I really feel like we have guardian angels in our grandparents. I picture my Grandpop up in Heaven, teasing my Grandmom, and rolling his eyes at the attention and admiration he is getting from down below. I picture Matt's Grandpa leaning into his Grandma, saying "PMA!" - Positive Mental Attitude. We are lucky to have them watching over us, and are lucky to have had them all in our lives.
Our little boy is so well loved, and is so fortunate to have (finally, in our minds) caught a break. A big break. Thank God.
How do you say goodbye to a man you have idolized your entire life? Believe me, I know how lucky I am to have the opportunity. My Grandpop is one of my most favorite people-- he is hilarious, feisty, generous, and hard-working, even after having been put through the ringer physically. He is a smart, completely coherent man with a body that has failed him-- and there are days when I am so angry about that. He made the courageous decision last week to enter hospice, after determining that his dialysis treatments were instigating strokes. He was forced to choose between the unpredictability that comes with strokes with each treatment or ending dialysis. He has come to the end of his fight, and made peace with that.
My family and I spent last weekend soaking up every moment we could with him. Our favorite moments were the times when his personality pushed through. His home was a revolving door of support, admiration, and love. That being said, as my mom puts it, my Grandpop has endured what could be equated to attending his own wake over the last 9 days. One night, he was restless and audibly upset-- and when asked if he was nauseous or hurting, he said no -- that he was just so sad, and said "I will just miss you people so much." Every time someone walks out the door a sobbing mess, he has to see and feel their pain. That is so hard. I dreaded the moment when it would be my turn, and can honestly say it was one of the hardest moments of my life.
We have been lucky to be with him, though. He was furious about his last haircut, which was really a buzz cut, and thought it looked stupid, and did his usual grumbling :) I saw his last sip of beer and Sambuca. We got to eat Rita's Italian Ice together. He got to put as much salt on his fruit as he wanted. We Face-Timed with Parker and Matt every day. We went through old pictures, heard his wishes for his most treasured things, and ate some awesome Cannoli and Cannoli Cake (who knew that existed!?). We also took some new pictures with him and the people who love him most. We held his hand, kissed his cheek, told him how much we love him, how brave he is, and how proud we are.
But ultimately, this sucks. I have dreaded it my whole life, and counted myself so lucky to have him for so long. Having him at my wedding, and watching him hold Parker have been some of the most cherished memories of my life. I don't know what to do without him. He is "New Jersey" to me. He is "home" and he is the glue of our family...the patriarch. I don't know how to be there without him.
And although at this point he is semi-comatose, he has been counting down the days. Hospice told him 10 days (which he was mad about), which will be "up" tomorrow. My heart hurts and I so dread the phone call that I know is inevitable. I can't wait to be with my family, and as much as it kills me, I know that when my Grandpop isn't HERE with us, he will be at peace, reunited with my Grandmom and so many of his favorite people he has lost. I love you, Grandpop. You are my "person," and I will miss you every day. Check in on us from time to time, if you aren't too busy catering to all of the pretty ladies in heaven :)
This is what really matters. After a long Monday filled with tension and stress, this is what matters. This. Is. It.
Our baby is almost two years old! He is officially a serious walker and is constantly on the move. After working SO hard on trying to help him walk and move more fluently, we are getting close to the point of trying SO hard to keep him still enough to do a learning activity. I suspect this will become more challenging for us as time goes on, but for right now, it is a new thought process. This week, we got two new pieces of "assistive technology," in addition to his orthotics, to help him do that.
The first set is his SPIO, which is basically a wet suit. It is a custom measured compression vest and shorts that are supposed to help him with his vestibular needs, and therefore, help him focus. Yeah, I had to look all of that up too. Basically, helping Parker feel secure physically helps him build his core strength, and allows his focus to move from balance and motor movements, to something else. This will likely translate to what I am more familiar with in education--- weighted blankets and lap pads, special sensory seat pads, etc.
The second is a Leckey Pal Seat, which I am honestly still learning about. To me, it looks like a suped-up booster seat. It comes with a tray, lots of pads, and adjustable everything. The idea is the same...force some focused activity time.
Right now, because of his age--all toddlers seem to have a propensity for constant movement and exploration-- it is really hard for us to tell how much Parker is struggling with focus. If he has the right toy or activity, it seems like he could stay in one spot forever. At the moment, we have only really found three things that are focus inducing....playing at his water table, listening to Daddy play guitar, and watching Baby Signing Time on the iPad. With everything else, he seems to be seeking movement, and fights sustained activities unless we give him movement breaks, like swinging him from side to side, or bouncing him on our legs. It is another one of those things that is fascinating, and would be more so if it weren't our day to day. We try not to worry about what school will be like, and instead, put our energy into learning.
We are SO SO SO proud of everything Parker has accomplished so far. We know he is going to blow us away in the next year, just as he has in the last 1.75. We are loving seeing his personality and preferences come out. He has become more reactive with scenarios he doesn't like. The other day, Parker was standing near the door as Matt walked into the garage, and Parker started crying. I just about cried. He cries/yells when he accidentally turns off Baby Signing Time. He spits out food he doesn't want. He crawls up to me with a big smile when I pick him up from daycare. These are all things that are "normal" that we have been waiting for for a long time. The fact that his environment is clear enough to him now that he can begin to process it is a blessing.
Love him. I wish time would slow down a bit, but we so love seeing him achieve.
It is back-to-school for Mama, officially, at least! Even though I worked almost all of June and a good part of August, it is still hard to officially say goodbye to summer! I am happy to return to our routine, excited to delve into my new school, but sad to leave the day to day experience with my little man.
I learned a lot this summer, not the least of which is that, while I would love to stay at home with Parker so that I wouldn't miss so much of his day, I'm not sure I am cut out for the stay-at-home mom/wife role. Sitting through hours and hours of therapy was so fascinating to me, but when we work on the same thing every week to help with mastery (ie: walking laps around the house, climbing the stairs, etc.), it got a bit tedious. Constantly having to choose between playing with Parker or taking him somewhere, and the 10 million other things that need to get done was a long extension of the mental battle and guilt that comes along with some of those decisions as a working mom.
That being said, I relished in the ability to truly take my time with using signs between each bite, to see each minute progression with my own eyes, and to be "in the present" with Parker, his goals, and his personality. I loved being able to see his smile when he woke up from his nap, hear his giggle when Chase licked his face, and his first steps. SO much better than reading a daily report.
I wish I could give him the best of both worlds. I think there are so many benefits to sending him to "school" --especially the one he is at right now. The social awareness, language immersion, high expectations, and strong modeling that happens when surrounded by other people are things I cannot replicate at home. However, that one-on-one attention, TIME, and perseverance are things I wish he could have. Parker's sign language skills benefited so much from a lengthy, hour-long breakfast where we signed "More" over and over and over.
I'm hoping that once Parker enters the public school system next year, that we will be able to push more for that attention that he needs (and deserves).
For now, let the working mom guilt prevail, and the uncontrollable urge for snuggles and chubby cheek kisses continue.
