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.