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!
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!
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...:)
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!
)
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.
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!
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!
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.
