Nixing the Inner-Grinch

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. 

Cardiology 2014

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.

My Grandpop.

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 :)

Fun with Ice Cream!

What it's all about....

This is what really matters.  After a long Monday filled with tension and stress, this is what matters.  This. Is. It.

Time is FLYING....

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.

Back to School!

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.

Whew!

Whew, it has been a while!  I have so sorely neglected this blog that I love.  Life has happened, at the pace of a million miles per hour-- and I've always written when I FEEL like writing.  Not that we haven't been up to a lot, but in my down time, I chose to do other things....like laundry, or cleaning, or play time with Parker, or a bazillion hours of therapy with him, or just sitting and reading a horribly cheesy romance novel.  I know there will be a day when I read through this blog and wish I had written more, but again....life happens.  So, I will slowly recap the summer through flashback posts and pictures, and keep loving on my little boy as he gets bigger and bigger.

For a quick update-- Parker at 21 months:

Major Milestone:  Parker is walking more and more fluently every day! He is at the point this week where he is consciously choosing to walk instead of crawl, even when crawling might be faster.

Major Milestone: We have been working tirelessly for months on basic sign language.  Repetition and contacts for vision have been a huge support in this.  Each addition of a new sign is a bit tough, and causes Parker to jumble his repertoire for a week or so, but at this point, he is getting better at using "more," "all done," "eat," and "dog."  We are currently working on "milk," "Mommy" and "Daddy."  We are so thrilled!  Finding things he REALLY loves and shows preference for is so important to us.  Oatmeal and Daddy's smoothies currently top the charts!

Love: Parker still LOVES water play.  Baths are huge favorite, and he enjoyed fun summer dips in various baby pools and water tables.  

Love: Baby Signing Time! This DVD series has become a major favorite.  We have an iPad with a baby-proof case that we put in the playroom with P in the evenings while we get dinner ready and change from work.  I love the fact that it has real kids, some with special needs, the songs are easy to sing along to, and the songs cover daily routines.  This Mama stinks at making up her own songs :)

Love: Daddy's Guitar!  Matt will start playing the guitar in the living room, and Parker will rush over from wherever he is playing to listen and touch the guitar strings.  My heart melts every time I see it. 

Hate:  Surprisingly, Parker is NOT a fan of chicken, or most meat for that matter.  Every time we are out with friends or family, someone tries to give him some, and every time, he spits it right back out.  He does like meatballs and ground turkey in tomato sauce, but so far, meat is not his favorite.

Hate: Contacts getting stuck.  Last night, Matt and I were up until midnight driving around the neighborhood trying to get P to fall asleep deeply enough that we could take his contacts out.  One had been stuck for a full day.  I LOATHE these days, especially after working for 15 hours, but overall, the contacts are SO worth it.  

Working on: We are constantly working on sign language and communication!  Another part of speech is getting Parker off of bottles.  At this point, he still doesn't understand this sippy cup/honey bear straw cup business.  This is a BIG deal for us, as he isn't getting fluids any other way right now, he is the only one in his pre-toddler room still using bottles, and the next room up will be a struggle if we can't learn the sippy way.

Working on: Body awareness-- eye contact when playing with someone or interacting, wearing a SPIO compression vest and shorts for some sensory input, and core strengthening.

Father's Day 2014

This year for Father's Day, we took a family trip to St. Louis!  It was a MUCH needed get-away for us.  We had a lot of great food; Matt was in heaven with his beer tasting group at Perennial Brewing, and we had a blast visiting some "touristy" locations.  It was too crowded to go up in the Gateway Arch, but we got to sit by it for a while, and it is gorgeous.

While at the brewery, a mom came up to us because she recognized that Parker has Down Syndrome--which is a first for us. It was her birthday and she was with all of her family, including her 16 month old, but she took the time to come up to us, talk to Parker, and tell us how great and adorable Parker is.  She came up and talked to me a few times throughout the afternoon, and ended up telling me that her niece has Down Syndrome.  I was startled by how many emotions that made me feel!  I will never forget her kindness and sincere adoration she showed for Parker.  My only regret is that I didn't thank her for coming to talk to us!

So, a week later, I saw a mom with her adult son with Down Syndrome at the grocery store.  Of course I was watching them awkwardly with a big smile on my face, and the mom caught me :) So I went up to her and asked her how old her son was, and told her he was so cute and sweet-- he kept coyly smiling at me from afar.  I told her that I also have a son with DS, and told her a little bit about Parker.  She got emotional, and talked about how lucky they are that her son is still with them, as he almost didn't survive heart surgery as a baby, and that he is also on the autism spectrum- which I am hearing a lot about these days.  It was wonderful for me to see them-- I hope it was wonderful for her, too.  I am lucky to have a community of others to lean on, and know that so many other people don't get that opportunity.  Small acts of kindness are definitely what get us through life!

GiGi's Playhouse 5k

The GiGi's Playhouse 5k was much different for us this year than last year.  For one, with our switch in daycares (again) and everyone's crazy schedules, we didn't aggressively fundraise this year.  Our team was basically Matt, Parker, and I, and we walked with Parker's friends through the mile part of the morning.  Unbeknownst to us, it would be the last time we got to see Annie before she passed.  We got a chance to kiss her and hug her and support her in person, which we hadn't been able to do in a while.  It was a beautiful day, filled with a lot of support.  We helped Parker take steps across the finish line, and the video of that will stay close to my heart forever.  I can't wait until next year, when he will walk across the line himself!

Annie Golden Heart

This week has been hard.  Really. Really. Hard.  Last Wednesday morning, our little community lost sweet Annie.  Not much in this world is more devastating than losing a child.  I have to say that our "moms' group" has banded together in ways that I am so proud of and admire so deeply.  And though in some cases, the (now) 22,000+ people that follow Annie's page on Facebook acted rashly or offensively, I am ultimately proud of that too.  The Down Syndrome community is one of warriors and fierce advocates who have the power of technology to help in uniting the force against any injustice that might plague our little ones.  

Annie's service was beautiful.  We wore red flower bracelets in her honor, had our kids there to support us all, and released balloons that reminded us all that just because Annie can no longer be seen doesn't mean she isn't with us.  Her two older sisters were more courageous than I could even comprehend.

For now, I find myself imagining Annie with her angel wings, in a pink dress, giggling and dancing in Heaven, free from suffering and pain.  I know it is unimaginably hard for her family to wake up each morning without her, and how much hurt and anger they must feel.  I am so thankful to them for bringing Annie into all of our lives-- she was a brave, strong little girl that deserved many more painless days than she was given, but taught us to smile through it whenever possible, all the same.

We love and miss you, Annie Golden Heart. 

Parker can SEE!

 The contacts have been in use for about 2 weeks!  We have had a hard time with them, as we somewhat expected.  But the benefits far outweigh the drawbacks...though you may have to remind us of that on tough nights!  We tried soft contacts, with no luck, and switched to hard contacts.  The benefit to these is that we can leave them in longer, they provide a little bit more focus for Parker, and they are slightly easier to take in and out.  

We VERY quickly realized that it is just about impossible (unless you have about 6-8 hands) to do anything near Parker's eyes while he is awake.  Thankfully, we are able to do just about everything we need to while Parker is asleep.  We also discovered that it is REALLY hard to take out someone else's contacts, so we use a mini plunger, one that you might expect to find in a doll house, to take the contacts out.  

The scary times are when the contacts get stuck-- the right one doesn't have a perfect fit, and easily becomes dislodged and stuck in the corner of Parker's eye, and knowing that since he only cooperates while sleeping, if there were ever an emergency, we would be left helpless without outside help.  

But the benefit....Parker can see!  In less than two weeks of consistent use, Parker has learned how to put things in and take them out of a bucket, play mini-basketball, and launch for people who are across the room!  It is so incredible to watch him develop so rapidly, though it is very difficult to manage the emotions that come from "what if..." questions, like "what if we had gotten these 6 months ago?"  I suspect that will be a recurring theme that I will need to work on!

Basketball:

Whew! Find the Balance....Breathe.

This Spring has been crazy and shows no signs of letting up for summer.  Parker is getting big so fast, I just want to freeze time before it all goes flying by.  We are so very much enjoying the warm weather-- though it is about to leave us again for a few days.  We are excited for the summer when the threat of being cold is out of our minds for a while.

This school year has been especially hard in terms of balancing family and work responsibilities.  I have found myself struggling with being great at either one, which is a hard pill to swallow for me.  For some reason, I have been under the impression that as Parker gets older, his appointments and checkups will decrease, and that has just not been the case for us.  While I love being in Chicago, which sometimes feels like the expert doctor hub of the region, we have found that the doctors around her often travel from hospital to hospital around the area, and are therefore only at hospitals near enough to Parker's daycare once or twice every few weeks.  This ends up meaning a new appointment on a new day every time we have a checkup-- even if the appointments are at the same location.  Matt is having a hard time with this with his new job, and I have maxed out on my sick time at work-- unfortunately, my job does not allow me to leave an hour early one day and stay an hour later the next.

We have accepted the fact that we still have ugly curtains up in the living room that were here when we moved in, have weeds overgrowing our back flower beds, and have the long lawn of shame in the neighborhood.  We try to keep up appearances, go out with friends/family, work out (ha!), etc., but sometimes just fail at doing what we "should" be doing.  There are some nights when the anxiety of not doing enough for Parker is suffocating--- the "I should have..." or "I need to..." thoughts are so overwhelming.  We are trying the best we can to keep up, but some days just result in lazy couch evenings, or on tough days, some tears and a good book to escape a bit.  Parker is such a good model for us-- he is so resilient, even when the appointments we go to cause him discomfort or pain.

At this point, we are trying to determine what we can take off our own plates to keep life manageable.  Do we hire a lawn service? Do we try a cleaning service?  Who knows.

It is also no secret that I have always been looking forward to becoming a mother, and get a strong baby fever, which set in a few months ago.  After the past few months of strain and appointments, we have decided to hold off another year on baby #2, as much as it hurts and is scary genetically to wait.  We feel like emotionally, we are barely getting by, and have some work to do to re-prioritize our lives to remove some of the stressors.

Needless to day, I can't wait for my 5.5 weeks off this summer (I agreed to work 4 weeks of summer!).

Contacts: First Attempt

For the last several weeks (or really, months), we have been in a battle to understand what is going on with Parker's eyes and vision.  At this point, we know he has astigmatism, nystagmus, and extreme nearsightedness.  We have been passed from doctor to doctor, with no real understanding of what is "best" for Parker.  After Parker's glasses failed because of being too big for his face and him pulling them off, his original doctor started considering and suggesting contacts.  As a side note, there ARE glasses for kids with Down Syndrome and their face shape, but the ones that fit the best are wire frames.  Parker is at the very-clumsy-toddler-trying-to-walk stage, so they are not comfortable having him wear these. 

Our original doctor set us up with the procedure to measure his eyes and get appropriate measurements along with his ear tubes and hearing test.  At that point, she passed us (without telling us) to a new doctor.  We could tell this doctor was slightly uncomfortable with contacts in a 17 month old, but really couldn't tell us one way or another what the best option was for him.  She left the ball in our court to make a decision...which I have to say, is infuriating!  She referred us to an optometrist, who is working with us to fit the contacts and get backup glasses for Parker.

This particular doctor has explained to us that, yes, contacts are the best option for Parker because of his unique visual issues, but she is not sure about the best type of contacts.  I do feel comforted by the fact that she has contacts in her own infant's eyes for his visual issues.  We went in Wednesday to try the first pair ordered, thinking we would go home with them and start using them.  Getting them in Parker's eyes was sheer hell.  Matt and I held him down and comforted him, the doctor attempted getting the contacts in, and the technician held my iPhone to play a visual/music app to calm and distract him.  After much fighting and screaming, we got the contacts in...only to have one of them pop out within the first 2-3 minutes of wear.  

Thank God, getting the contact that fell out back in was easier than the initial attempt.  Once the contacts were in, the doctor was able to measure his vision for a great improvement.  Parker was wide-eyed and very taken-aback by the sensation, though irritated that he could feel the contacts.

SO, ultimately, we wait another 2 weeks for "tighter" contacts to come in, so Matt and I can be trained on taking them out and putting them in.  YIKES.  The bottom line is that Parker MUST be able to have clear vision to process his environment appropriately......and we will do whatever it takes to get him to that point.  

Man, sometimes this "Mommy" stuff is hard!  I wish the kid could be cut a break or two, along with all of his friends! 

Orthotics!

After a frustrating debacle with Early Intervention, we decided to go privately for Parker's first pair of orthotics.  They are Sure Step SMOs...don't ask me what that means, though!  Essentially, they are braces that buckle around his ankle and the top of his foot to give him more support when he is walking.  His low muscle tone allows for easier accidents, especially in already-clumsy toddlers.

Right now, we are in the "watch and build up" phase, where we increase his wear-time each day and watch for any irritation or markings on his feet.  By the end of this week, he will be wearing them 8-10 hours per day...ie: any time he has on shoes or is active, he needs to have on his orthotics.

Parker SO badly wants to stand up and run around.  He is able to pull himself to standing easily now, but is still working on standing independently....it is all about technique :)  He pulls himself up onto things anytime he can....causing us to learn quickly to childproof areas that weren't already on our radar (ie: a kids book shelf we had in his playroom is no longer in his playroom).  As he gets used to his orthotics, it will be interesting to see the support they provide him!

Ear Tubes!

Parker had a long 3 hour procedure yesterday, and as usual, did great!  He had a small version of ear tubes put in, his ears drained, a diagnostic hearing test, and an eye exam for contact fittings.  Luckily, most of the more painful items (like an IV) happened after P was already under.  Like every parent, there is so much anxiety that comes with your baby being under anesthesia, and the spiel of all of the risks the doctors tell you beforehand is enough for a panic attack.  I try really hard not to look over my shoulder for the "bad stuff," and have always been made to feel foolish when Parker gets through a procedure and was much braver and tougher than me!  The doctors did end up fully intubating him due to the length of the procedures, which wasn't terribly surprising to us.  

The one thing I totally understand but still hate is the process of each doctor pulling us into a small conference room after each procedure was over to let us know the outcome and expectations.  We were fortunate enough to receive good news in each one of these, but the process of being called, sitting in the office, and waiting for someone to start speaking is intimidating.  Parker's procedures were all fairly routine, but I can imagine all of the tears parents must shed in those conference rooms.

At this point, we are expected to go back to follow up with all of these docs in a few weeks to keep monitoring everything.  Parker's hearing was normal, which we are SO thankful for.  Our ophthalmologist, who we just recently were switched to by our former ophthalmologist, got very wishy-washy with her view on contacts.  I don't feel that contacts are her typical method of solving issues with glasses, so she put the onus on us to decide if we wanted to continue testing glasses or move forward with contacts.  In all honestly, as difficult as contacts will be for me, Parker hasn't been seeing properly for all of the 16.5 months of his life, which are critical months for learning and exploring your environment.  I really don't want to spend another 2-3 months paying for and testing glasses frames without him being able to see.  So, our decision has been to move forward with glasses, and hopefully test glasses as we can.

For today, we are back to playing, and all taking turns sleeping in the hopes of getting back on some sort of normal schedule!

Trying to Stand!!!

2014 GiGi's Playhouse Gala

As it was last year, the GiGi's Playhouse Gala was so wonderful.  Matt and Parker were pretty sick during the event, but the short time we were there was beautiful.  It is so much fun to be surrounded by our family in an environment that is just overflowing with support for our Down Syndrome community. <3 Love and thanks to our amazing support system!

Stair-Master....sort of :)

Finding out that your little guy does, in fact, know how to climb up the stairs is such an awesome/scary/exciting/panicky moment :)  It was the first experience Parker has really had with stairs-- his nearsighted vision limits his awareness of the fun/dangerous activities around the house.  While that has made baby-proofing a slow and easy process for us, we would much rather have Parker exploring with the enthusiasm and determination that frequents toddler life.  So this commonplace revelation really means a lot to us!  Matt and I may have let out an embarrassing giggle/yelp upon seeing Parker up to the third step. 

This definitely reminded me that I have to make more of a conscious effort to expose him to things around us! I am so excited for spring and summer, when we can explore everything outside!

I know I will enjoy this video for a long time....even the part at the beginning that clearly shows that the UPstairs master needs a little work on coming down the stairs...:)

15 months old!

Parker is 15 months old! Well, 15.5 months at this point.  Every time I say that aloud, I am shocked-- time is just flying by!  Parker has had a month or two of really amazing progress-- we have so enjoyed watching him flourish! 

 He is now a master crawler, LOVES pulling up and standing on just about everything he can, and is working on eating chunky foods, waving "bye bye," putting toys in and taking them out of a container, and learning to recognize signs.

He is getting much better about telling us what he wants!  Many parents complain about how demanding and picky their kids are, but with Parker, we welcome picky-ness, because it means he is grasping his environment and making decisions!  He is getting a bit of a sweet tooth and very much favors fruits, he despises chicken, and his most favorite activity (aside with snuggling) is taking a bath.  I am SO excited to take him to the pool this summer.  If only mother nature would figure out that it is supposed to be spring!

We are slowly getting situated with therapists after our daycare switch.  After 14 months of being in early intervention, we are hoping we will FINALLY have a consistent team with a bit of longevity.  Parker's new daycare is great!  We have been really happy with the reports we get from them, and the effort they put into learning about Parker.  

Yay for progress! )

February

I have to say that the last week or two has been trying for our family and extended family, as well as our friends.  It has been a week of loss, illness, and fear.  Which, when compacted all into one week, is distressing for so many reasons.  I have always been naive in the sense that my natural state is believing that good things happen to good people and bad things happen to bad people.  That karma prevails.  But the truth is that sometimes, unfair, unexplainable things happen to people who don't deserve it.  I struggle so much with that.  Seeing a 21 month old like Annie suffer is debilitating and consuming...we feel it down to our core-- just such a feeling of despair and a bit of anger, too.  I try not to let myself get beyond the surface levels of those thoughts, for fear of drowning in the "why?" types of questions.  The best I can do is try to help in any way I can, and try my best not to look over my shoulder in fear.

As a family, we spent the week passing illnesses to one another.  I went to urgent care mid-week with strep throat, Parker went to the pediatrician after a bad cold, congestion, stomach issues, an ear infection, etc.  And Matt has had a stomach virus for several days now.  Parker lost about a pound, which is a month's worth of weight gain for him, so we will be heading back to the pediatrician in a few weeks to make sure he has gained it back.

At this point, we are hoping desperately for a healthy, peaceful, and healing week for everyone.

Annie Golden Heart

Our Moms group has made a fundraising page for Annie and her family here:

http://fnd.us/c/8hdP8/sh/e2s8N0

Day One :

We were so excited that Parker had a great day.  From the routines and practices we saw today, this school is exactly what we have been looking for.  We get lots of details and photos about his day, and are ensured that there are purposeful activities rooted in child development.  It was sad for me to not get to be with him much today, but the knowledge of great care is so reassuring.  We are hoping for many more days like today!

Daycare #3

There are usually about 3-4 days per year where some change happens that make me feel like it is my first day back to work after having Parker all over again.  Usually, it is after a break (leaving him after the summer stinks!).  It is that heart-twisting pain that is hard to put into words.  The last 6 months or so have been great in terms of how much time I get to spend with Parker that I almost forgot what really leaving him for 10 hours a day feels like.  I got to hear him babbling in the back seat on our long commute, and because his daycare was so close to me, I got to go to most of his therapy sessions on my lunch break.  Selfishly, it was so nice to be close to him so much.

We painstakingly decided that a daycare change is the best move for him.  And when I say painstakingly, I mean that I had to make sacrifices (selfish, again) so that he gets what we feel is the best care we can provide.  I literally had a little pro-con chart going on in my head :)

Essentially, we underestimated how long my commute would be, especially in the winter.  There were some days that Parker was spending almost 2 hours in the car.  Most days, about an hour an a half total.  Had he been getting incredible care, I would have been able to justify that commute for him, but in reality, we knew from our last daycare experience that daycare can really be more like "school" and less like "supervision."  His last daycare just wasn't providing that for him.  They loved him in their own way and met his general needs, but Parker needs more than that.  He needs people that have a passion for child development, have the drive to learn about him and what can help him progress, and love him so much that they are willing to be his advocates when Matt and I aren't there.

So for me, even though it is little-contact car time, I lose a large chunk with my baby, and forfeit the ability to go to any of his therapies with the exception of the summer.  We aren't quite sure yet how many of these therapies Matt will be able to attend, though his work is only 10 minutes away.  The reason I say this part is selfish is up for debate. Even though I was getting to attend Parker's therapies, it is hard to implement the skills we learn and work on because our awake time with him is limited during the week.  I really enjoy being at the therapies, getting first-hand information, and staying in the loop, but it is truly more important for his teachers to be there and learn, assuming they soak up everything they can.  Luckily, it is only a few more months 'til summer!

We are hoping that this will be Parker's last move until he goes into a special ed pre-school at age 3.  The continuity and longevity would be great for all of us!

More on his new daycare later this week!

Sweet Annie.

Through GiGi's, we have met some amazing people that have become like family to us.  The Wojtowicz family, with their three beautiful girls, are a part of that family.  Annie, their youngest, has Down Syndrome, and very serious heart issues.  She had surgery on Monday, and is very much struggling in her recovery.  All of our hearts are breaking for this family, prayers and positive thoughts are constant, to the point of begging for relief for Annie.  As a mommy, I can't imagine the pain of watching your baby suffer so much.  The message to us all is to take nothing for granted, and to let the small stuff go!  Our babies are gifts that we cherish and love so deeply.

Please keep Annie in your thoughts.  She is a beautiful, strong little girl that deserves a life free from suffering.  She has a Facebook page that we are hoping to gain support for, because this family deserves our support. 

 

Dance, Dance!

Someone enjoyed dancing to the entire Superbowl Halftime show...

Audiology, ENT, AND Ophthalmology- January 2014

Well, as we suspected, Parker will need tubes and a Myringotomy to drain any fluid that may have taken up residence where it isn't welcome!  After these procedures, Parker will be given the ABR hearing diagnostic to make sure all is well.  Hopefully, this will put an end to the uncertainty that has surrounded his hearing as of late.  

As for ophthalmology, we realized (sadly) that Parker's glasses were really not starting to fit better after all...his mullet hair had just been helping them stay on!  After his last haircut, they went right back to fitting as loosely as when we first got them.  So, I moved up our ophthalmology appointment from mid-February to yesterday, because I don't see how they could magically fit by then.  Dr. Curnyn wants Parker to go under general anesthesia to get more in depth eye scanning and to be fitted for contacts, in the hopes that we can have him wear contacts until his glasses fit properly, and Parker's brain recognizes the benefit of having them on.  Basically, he would wear the contacts for a week at a time, WE would take them out for a break, and then put them back in for the next week.  YIKES.  Matt and I have never had glasses or contacts, so this is a bit terrifying for us.  But in reality, if Parker can't see, then he can't learn from or be motivated by his full environment.

We are desperately trying to see if all of these procedures can be done in one shot.  We know it is unlikely, because getting an audiologist, ENT, and Ophthalmologist in the same room at the same time will be hard.  We are hoping we can get lucky and they will do what is best for Parker.  Additionally, I am reaching the end of my sick day bank for work, so any consolidating that can be done helps there too.

Whew...we are tired.

Months in the Making...We have a Crawler!

Way to go Parker! Mommy and Daddy are so proud of you!

Just Like Mommy and Daddy

Parker's most recent love is all things technology.  Like most babies/toddlers, the screens are mesmerizing.  So, we have been spending some time watching YouTube videos of songs and stories that we sing together.  His current favorites are "Row, Row, Row Your Boat," and "The Wheels on the Bus" --he especially loves the movements! We love watching Storyline Online videos-- one of his favorite books was just added -"I Need My Monster."  He also likes watching "Baby Signing Times."

With Parker's speech and language difficulties, I love the technology gives me the chance to expose him to different types of media and text that can hopefully expand his language tool kit.  He will need every support he can get (and so will we).  I don't believe in using technology as a babysitter, but I do believe, very much, in harnessing the educational components!

Second Guessing

Matt and I have already been on the emotional roller coaster in terms of genetics enough times, I think.  

When I was pregnant, after having pushed for probabilities and stats, we were told that the doctors and nurses had never seen a baby with perfect measurements and a small bright spot on the heart come out with Down Syndrome or a genetic abnormality.  You know how the saying goes.....you hear what you want to hear. We left there brushing off the thought.

Last April, Matt and I saw a genetic counselor, who told us that we did not individually need blood testing, but instead, that Parker's genetic tests were enough to dictate our future risks.  We were told that our risk is 1 in 67 for future genetic abnormalities....which is about 8 times the normal risk for our age, but is not supposed to be affected by the fact that Parker has two genetic issues.  We again took this as gospel truth.

Every time we take Parker to the NICU for follow-up evaluations (mainly for our own edification and their research), the NICU doctors, one of which we have mentioned a lot and really respect, are extremely adamant that we be closely followed by a geneticist.  This last week was no exception.  This NICU doctor was one we hadn't met before, and he couldn't seem to believe that the genetic counselor did not need to test our blood to be able to accurately assess our risks.  He told us that raising two children with such genetic abnormalities would be too difficult.  Ugh.

This doctor was so concerned about the information we had received that he took down my information and called the doctor at the genetics office himself, as we had only previously spoken with the genetic counselor. 

There were several hours where I wanted to throw up.  I felt robbed of security...I had accepted the 1 in 67 odds....but nothing more.  Call it naive....but again, you hear what you want to hear.  The NICU doctor ended up calling me back, saying that the genetics doctor said our information was accurate but that he would look into our case again to review.  We are waiting to hear from them to confirm this week.

The take-away, for me at least, is to get 2nd (and 3rd and 4th) opinions, and to try to the best of my ability to reject all "absolutes."  We have no guarantees in this life...none.  We aren't promised or owed any fate or fairness.  We love Parker with all of our hearts, and we want nothing more than to continue growing our family.  We will make peace with the family we are blessed with, even if it doesn't end up the way we thought it would.

Daddy Rocks

Last weekend, Matt and I had the chance to go to his work holiday part/annual awards celebration.  It was definitely foreign to me!  There was a lot of fanciness and show -which was interesting and fun!  It is always an eye-opening time in a marriage-- to see your partner's strengths that are completely independent from your family.  It is really fun for me to see how awesome Matt is at work!  He has been with this company for about 6 months now, and was the only person in the company nominated for two different individual awards!  His team also won a group award.  And the best part is that I am allowed to brag about him :)

Aside from the awards, the event itself was memorable.  It had a Great Gatsby theme, and encompassed multiple ballrooms in a downtown hotel.  Like I said....definitely nothing like the end-of-the-year celebrations teachers have (though I love those too!). 

Special thank you to Auntie Morgan, Kevin, and Brody for watching Parker for us :)  It is always nice to have them over, and snuggle time with P is hard to resist!