Last weekend, Parker got to
spend some (long overdue) time with his Great-Grandma Manoni,
Great-Grandpa Manoni, Great-Uncle Ken, Great-Auntie Kim, Nonna, Grandpa,
Auntie Morg, & Auntie Mal. That's a lot of "great!"
He got to show off his
"scooting" skills, his big-huge smile, and consuming blue eyes! He got
special stories a-la cousin Khloie, and of course, tons of snuggles.
The guys even got a chance to play cribbage together!
We had a great time!
The reality of life is that we have good days and bad days. The bad help us appreciate the good. Today was a bad day. I am emotionally spent and raw, and would like nothing more than to go home, snuggle my baby, and go to bed, honestly. I am hoping to write this post as a way of venting so I can move on with my day!
Parker had his Audiology and ENT follow-ups this morning-- which for some reason, we appointments that I thought would be a breeze. His last ENT visit lasted all of 5 minutes and involved a quick peek in the ears and that was it. Today was different, and I am not a fan.
For audiology, Parker is old enough to start doing the behavioral hearing tests instead of the ABR test--which doesn't require anything of him. We sit in a small sound room with speakers and screens on either side of us, and hope that Parker responds physically to the sounds he hears. If he turns to look towards the sound, a screen flashes colorful lights to praise him. Out of about 5 attempts, Parker turned to look twice, partially turned once, and ignored (or didn't hear) the sounds twice. By the end of the test, which also included probing and middle ear testing, the audiologist could said with certainty that Parker doesn't have any moderate or severe hearing loss....Thank God. However, she couldn't tell if he wouldn't respond to the test because of development or because of hearing, so she couldn't rule out mild hearing loss.
SO, we are going to try this test again in January to give Parker some time to grow and develop. If he still doesn't respond well, then we will have to put him under general anesthesia and do the ABR.
THEN, we went to the ENT appointment. This started with the doctor letting us know that almost all children with Down Syndrome have to get tubes because of their ear canals. Because of Parker's shaky history with hearing exams, he thinks it is best for us to move forward with tubes soon--potentially sometime after the next visit. Since we were expecting tubes at some point, this wasn't a huge shock, but did happen sooner that expected. This is considered a surgical procedure, though.
After talking with us, two nurses and I had to hold Parker down so the doctor could scrape out his ears. I know this is by no means a life-altering procedure, but Parker was screaming so badly that he lost his voice. I couldn't calm or snuggle him until it was over...which was an experience that left me teary eyed, shaking, and sick to my stomach. There is no other torture like seeing your baby hurting.
The appointment ended with the doctor telling us that the tubes procedure would be difficult and may require special tubes because Parker's ear canals are so small. They are so tiny, in fact, that when the doctor was scraping out his ears, he pulled 1-2 hairs from inside...obviously adding to the screaming that was already happening. While many would assume this means he is a bad doctor, I trust that he knows what he is doing....he has done procedures and exams thousands of times, and is on the board of and a professor at Northwestern. Still...not a fun Mommy moment.
Luckily, I had some time before needing to head to my half day of work to cool off, and take some deep breaths. Now, I am trying my best to focus on work and erase from my brain the sight of my screaming baby, though I think the effort will be fruitless.
Hoping the next one goes better, and that November's mass appointments (RSV shots, cardiology, neurology, etc.) go a little more smoothly.
We LOVE the GiGi's Playhouse calendars! Parker is one of the beautiful kids on the "March" showcase! It is so nice to see our babies depicted in such a colorful, lively, and inspiring way.
We feel honored to be a part of such an incredible organization...and are so thankful for everything they do for our family.
These calendars seem like fun, cute pictures to most people. To us, they give our son a voice. These pictures are proof that these babies are worth our attention, effort, and support.
Here's to taking things a step past "awareness" and "acceptance" --and on to support and appreciation.
Parker is 11 months old today...the next time a month goes by, I will be able to say my baby has been here a full year! It is incredible to me that the time has passed so quickly. My sweet, beautiful boy is racing into toddler-hood. It is awe-inspiring and heart-breaking at the same time. Every small milestone is a huge achievement in our house, and Parker never ceases to amaze us with his determination and strength.
As the toddler years approach, I can feel "baby fever" slowly creeping back up --I know (Mom & Matt!) that there is still a lot that needs to happen before we think about baby #2. And my thoughts about more children are intertwined with some really complicated memories, emotions, and dreams. I keep picturing a house with little ones running around, but those images are laced with flashbacks from last November and December. I have so many questions and fears.
I want to beg God not to make us go through that experience again, while simultaneously wanting to show thanks for what we have been gifted. I want someone to be able to tell me that our second baby won't have Down Syndrome, while simultaneously asking everyone around us to accept and appreciate Down Syndrome. These are just a few of the thoughts that get stronger and stronger every day that Parker grows and we get closer to expanding our family. These are the thoughts that rob me from my time thinking about and appreciating Parker. And that makes me angry. Because really, at this point, Parker is the role model for me. And my life is all about him...which is how I've always wanted it to be from before I even knew he existed.
He reminds me day in, and day out that he should never be underestimated, and that the power of a smile and a snuggle are immeasurable.
So, for the next month, my goal is to push through every traumatic memory, painful emotion, joyous celebration, and triumphant accomplishment, and allow myself to heal and dream again, and just "get over it." Instead of looking over my shoulder for the next big blow, I want to look ahead at Parker's future...one filled with many more upcoming birthdays, even more love and excitement, and obviously snuggles and smiles.
I love you Parker. Thank you for being so patient and giving to your Mommy.
We so loved having the Raker family come visit us (and can't believe it has already been a week and a half since they were here!). Our beautiful kiddos got the chance to play together, and the Rakers got the chance to explore Chicago post-babies. Our favorite day was Saturday, when we went to the Shedd Aquarium-- our first time there! Although he and Ansley slept most of the time, Parker loved all of the lights and colors! He was enamored with the dolphin/whale area (as was his Mommy)!
Parker got to show off his pre-crawl moves, Ansley got try out Rody, and Roby got to ride the train! Of course, the kids were not the only ones who enjoyed the time. It was so great to get some adult time with great friends, and I might have been more excited about some of the aquarium exhibits than the kids!
We hope to do this again in years to come!
Last week, we said "Goodbye" to Matt's Grandpa, Parker's Great Grandpa, Leonard Glass. He was 97 (almost 98!), and lived such a beautiful life. It was evident by the service and celebration of his life that people adored him. Everyone will miss him terribly, but we are so enjoying imagining him in heaven dancing with "Honey" --Great-Grandma, eating yummy steaks and sandwiches, and discussing the values of a healthy body and attitude with everyone around him.
Here is a video of his first visit with Parker. We miss you, Grandpa!
Hi!
My name is Parker, and I have Down Syndrome and Klinefelter's Syndrome. But... I am so much more than my diagnoses! I am sweet, feisty, snuggly, happy, stubborn, and energetic. I love reading books with Mommy and Daddy, getting kisses from my puppy, Chase, listening to music, drinking milk, and eating fruit. I especially love bananas and apples!
I hope that when you look at me, you see a person. A person who has feelings, ambitions, fears, insecurities, and dreams. My hope is that when you look at me...you see PARKER, not Down Syndrome.
Please be patient with my Mommy and Daddy. They love me so much that it sometimes makes them a little crazy and overprotective. They just want everyone to SEE me, too. When you see them with me, you can stare and wonder and be curious...but please don't be rude! Come say hi to us! Get to know me!
For October Down Syndrome Awareness Month, I hope that you ask questions and learn about me. I hope that you will love me for who I am. I hope that you will give me a chance.
Love,
Parker
Today was the dreaded day --Parker's first time under general anesthesia for his MRI/MRA brain, eye orbit, and blood vessel scans. I admittedly had a lot of fear about this for a lot of different reasons. First, it is something that can be a little more dangerous for children with Down Syndrome because of their varying heart issues and low muscle tone. Secondly, general anesthesia is something that neither Matt nor myself have ever experienced. Expecting a 9 month old to deal with that was anxiety-inducing. Lastly....HOW do you withhold food from a baby? For this one, I decided to wake P up at 3:45am for a bottle so the drive there and prep before anesthesia was not so painful!
Everyone at Lurie Children's (downtown Chicago) was great! They were very good with Parker-- obviously having a lot of experience with children (and their nervous parents). Parker got to wear a super cute tiger hospital gown, and they waited until after he was under anesthesia to do any IVs and shots. It made me feel so much better to know that he wasn't in any pain!
I keep battling with how to feel about and describe our anesthesiologist. On one hand, he exhibited a lot of the same characteristics as the other doctors and nurses- very friendly, good with children, and used parent-friendly language. On the other hand, he clearly had no training in speaking with parents of a child with special needs. He must have called Parker a "Downs Kid" about 15 times. He also proceeded to tell us that there was a 50-50 chance of needing to be intubation, and that as parents of a "Downs Kid," we should expect to have complications any time he has anything done like this that might result in us staying over night at the hospital. He implied that our lives would always be much more difficult because of Parker. After the procedure was done and everything was fine, I ended up asking the nurse we had to pass along a message to the staff about using "person-first language" because the tone and word choices of this anesthesiologist rubbed us the wrong way.
I know that person-first language seems so minor to a lot of people. I just wish that everyone could understand why it matters so much. It demonstrates that you are truly viewing the person before the condition. The way this doctor said "Downs Kid" really made me feel like he didn't see Parker as a person. I am sure that he does that as a defense mechanism in his job, but still. It has been on my mind since!
Overall, the day was a success. Parker's neurologist took time out of her evening to call us on Friday night to tell us that all looked well on his scans according to the radiologist. She will be going over them again Thursday to be sure! Essentially, all that was noted was a smaller area at the base of the head to watch as he gets older (typical with DS), and longer eye orbits (consistent with nearsightedness). We were so thankful that she was able to do this for us (without us asking) before the weekend!
Lots of relief here!
Last weekend, Parker got to
spend some (long overdue) time with his Great-Grandma Manoni,
Great-Grandpa Manoni, Great-Uncle Ken, Great-Auntie Kim, Nonna, Grandpa,
Auntie Morg, & Auntie Mal. That's a lot of "great!"
Parker is 11 months old today...the next time a month goes by, I will be able to say my baby has been here a full year! It is incredible to me that the time has passed so quickly. My sweet, beautiful boy is racing into toddler-hood. It is awe-inspiring and heart-breaking at the same time. Every small milestone is a huge achievement in our house, and Parker never ceases to amaze us with his determination and strength.
As the toddler years approach, I can feel "baby fever" slowly creeping back up --I know (Mom & Matt!) that there is still a lot that needs to happen before we think about baby #2. And my thoughts about more children are intertwined with some really complicated memories, emotions, and dreams. I keep picturing a house with little ones running around, but those images are laced with flashbacks from last November and December. I have so many questions and fears. 
We so loved having the Raker family come visit us (and can't believe it has already been a week and a half since they were here!). Our beautiful kiddos got the chance to play together, and the Rakers got the chance to explore Chicago post-babies. Our favorite day was Saturday, when we went to the Shedd Aquarium-- our first time there! Although he and Ansley slept most of the time, Parker loved all of the lights and colors! He was enamored with the dolphin/whale area (as was his Mommy)! 
Right after we got home from the MRI, Nonna and Grandpa arrived! Our home has now been visited by everyone in both of our families! Yay! We spent Friday night ordering in pizza and watching a movie! 
Saturday was filled with traveling all over the Chicago area. We dropped off Nonna, Grandpa, and Auntie Morgan at a wedding, and took off to Oswego for a beer festival with Matt's colleague and his family. It was a BEAUTIFUL day- and we had a great time! 
We ended the weekend with our good friend Ryan's birthday! Of course, Parker got to see his best buddy Ryan Jr. I can't believe that our boys are 10 months old now! They are so close to their first birthdays...only a day apart from one another! 
Today was the dreaded day --Parker's first time under general anesthesia for his MRI/MRA brain, eye orbit, and blood vessel scans. I admittedly had a lot of fear about this for a lot of different reasons. First, it is something that can be a little more dangerous for children with Down Syndrome because of their varying heart issues and low muscle tone. Secondly, general anesthesia is something that neither Matt nor myself have ever experienced. Expecting a 9 month old to deal with that was anxiety-inducing. Lastly....HOW do you withhold food from a baby? For this one, I decided to wake P up at 3:45am for a bottle so the drive there and prep before anesthesia was not so painful!
I keep battling with how to feel about and describe our anesthesiologist. On one hand, he exhibited a lot of the same characteristics as the other doctors and nurses- very friendly, good with children, and used parent-friendly language. On the other hand, he clearly had no training in speaking with parents of a child with special needs. He must have called Parker a "Downs Kid" about 15 times. He also proceeded to tell us that there was a 50-50 chance of needing to be intubation, and that as parents of a "Downs Kid," we should expect to have complications any time he has anything done like this that might result in us staying over night at the hospital. He implied that our lives would always be much more difficult because of Parker. After the procedure was done and everything was fine, I ended up asking the nurse we had to pass along a message to the staff about using "person-first language" because the tone and word choices of this anesthesiologist rubbed us the wrong way. 
We had SO much fun last weekend at GiGi's! We got to see Miss Hilary and Miss Lisa, and all of Parker's friends. He got to show off his pre-crawl, and all of the kids got to play on their Rody toys! I love this place, these moms, and all of the ladies who care about Parker so much. I leave with a full heart every time.
