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!