There is a children's book that Reese loves. It's called Picture Day Perfection. Here's the Amazon description of the book:
It’s picture day, and the boy at the center of this charming picture book wants to make sure his picture is perfect. It seems as though everything’s going wrong for him—he has bedhead, a stained shirt, and a big scowl on his face. But when he goes up for his picture, he thinks about his terrible appearance, and he smiles—because he secretly wants his picture to be the worst ever taken! But just as he smiles, the photo is snapped and his plan is ruined—the photo looks great. If you follow me on Facebook you have probably seen my posts about Reese's school/group pictures in the past. I'm pretty certain that the young man in this story is his idol. It's become a somewhat of a joke to anticipate just how crazy the next picture proofs will be. Imagine my surprise when his 2nd grade Spring pictures came home last week and this is what I saw:
There's hope that he'll reclaim his throne as the king of crazy school/group pictures in 3rd-grade!
Social media is a cultural phenomenon that often gets a bad rap. I am well aware of the dangers of bullies, creeps, and just down nasty things that you can encounter on social media. Many people are leery of putting too much info out there (rightfully so) and some don't think twice about spilling everything. (Think teenager sharing photos of themselves smoking pot or underage drinking and disclosing the location where such things are happening). Despite what anyone thinks, nothing and I do mean nothing, that you put on social media is private. Needless to say, social media is a powerful thing. Properly harnessed can be used for a lot of good. I love the ability to keep up with my college friends that live all over the world. I love being able to quickly get the word out about needs that arise in our community, church, or circle of friends. As the parent of a special needs child, social media has been the main way that I have built my support system for this journey. What a blessing it has been to connect with families from all over the world who also have loved ones with an extra chromosome. Though we haven't met most of them face-to-face, we are a family know that we can count on each other for love, advice, and support on our journey. Not only has social media been a great place to connect, it has also been a great way to spread awareness. I know that my "friend" base is small but word travels fast on the internet. This principal is one that I have experienced in a new and real way this week. Monday (3/21) was World Down Syndrome Day and many families posted photos and videos of their awesome kiddos rocking extra chromosomes in an attempt to spread awareness that our kids are more alike than different. We even got in on the action.
What I never expected was that something totally unrelated to WDSD would become my biggest contribution to bringing awareness. Brinkley loves Chick-Fil-A and barbecue sauce. Tuesday night we ate dinner at CFA and he was not going to let a drop of his BBQ sauce go to waste. I thought it was funny and started recording him. Who knew lots of people would agree?!?! As of right now, the video has had more than 5,500 views on Instagram. I have no idea how it has been circulated so much, but I won't complain. I have gained many new followers and people have gone back through my other photos and videos liking many of them as well. People are commenting and thanking me for sharing our journey.
My prayer is that Brinkley will be an encouragement to others on this journey with us. We want them to see that there is joy in this journey. Who could have ever imagined that a little guy and some CFA BBQ sauce could reach so many people? And just in case anyone from Chick-Fil-A sees this, he'll gladly advertise for you if you'll pay him in nuggets and milkshakes!
In case you missed it, here's the BBQ sauce video:
5:28 a.m. Sunday is not exactly my preferred call time. As any parent knows, though, you can never predict or control the time your children decide to wake up. Normally on a Sunday morning, the boys and I don't need to be up before 8:30 a.m. (not that Reese or I EVER sleep that late). Saturday night I put Brinkley to bed without his CPAP machine, so he was not confined to his bed. That being sad, the tiny little voice coming through the baby monitor jolted me out of bed for fear of what kind of destruction I would find in his bedroom if I didn't attend to him quickly. Diapers and diaper cream covering the room, dressers and bookshelves emptied, these are surprises that have welcomed me into his room before and ones that I didn't want to find again. (Need proof, you can follow his shenanigans by looking for #brinkleywashere on Instagram or Facebook.) As I pulled my earplugs out and started getting out of the bed, I realized he was signing. I stopped to listen for a moment. The tiny little, speech-delayed, voice that can hardly utter a two-word phrase was signing. The tears began to flow as I heard, "loved by you, who I am, who I am." In his broken little speech pattern, he was perfectly in rhythm singing Good Good Father. (You can find the lyrics below.) Both of my boys love this song and can belt it out with the artists as we listen in the car. This is not the first time that Brinkley has surprised me with this song. A week or two ago we parked our car in the Target parking lot, BIG SHOCKER! (This may have been the second or third trip of the week, I don't even keep track anymore.) As I opened the door to take him out of his car seat he was singing the same lines, "loved by you, who I am, who I am." I had to fight hard not to sob standing there in the parking lot. All I could do was look at him and say, "yes you are and don't ever forget that" as I snuggled him close. At that moment, a familiar scripture hit me like a ton of bricks. Psalm 119: 11 says, "I have hidden Your word in my heart that I might not sin against You." It's hard as the parent of a young child with intellectual and developmental delays to know if they understand and process the things that you try to teach them. Some things you can see obvious results, like walking or using utensils, but others aren't so easy. It is hard to know if they grasp the concepts that you try to convey like love, friendship, kindness, etc. It adds another layer of difficulty when speech is difficult for them. They can't articulate back to you what they understood, or didn't. No matter the depth of his understanding of the words he loves to sing, one thing is certain, the concepts of Christ's love for him are finding their way into his heart. There are a lot of things that I can't control in the environment that my children live in. One thing that I have some control over is what they hear in my car. These incidents, along with Brinkley singing the radio station jingle, prove to me that the things that they hear in my car (and we spend A LOT of time in the car) make an impact on them. Putting truth before them constantly provides a way for my boys to hide The Word in their hearts, even when they don't know that's what they are doing. I remember sitting at a table in the hospital cafeteria one afternoon while Brinkley was still in the NICU. My dear friend Mindy had brought her husband to meet us and have lunch with us. Sean is also a pastor and the parent of a child with Down Syndrome. At one point during the meal, Bryan asked Sean if he had been able to teach Sid about Christ and if Sid understand. I don't remember exactly how Sean responded, but I think I know the answer. Our God is a Good Good Father and he loves my son so much that He gave His son for him. He loves my son so much that He has chosen him to come to this earth carrying an extra chromosome. He has brought him through two open heart surgeries and may other medical complications that could have easily taken his life. He made him exactly the way he wanted him. Brinkley's genetic makeup isn't a flaw or an accident. It is part of our Good Good Father's plan and I couldn't be more humbled or in awe of being a part of it. It is my prayer that despite what the world may throw at my boys that both of them will have the truth hidden in their hearts that they are loved by our Good Good Father and that is who they are! Good Good Father Oh, I've heard a thousand stories Of what they think You're like But I've heard the tender whisper Of love in the dead of night And You tell me that You're pleased And that I'm never alone
You're a good good Father It's who You are, it's who You are, it's who You are And I'm loved by You It's who I am, it's who I am, it's who I am
Oh, and I've seen many searching For answers far and wide But I know we're all searching For answers only You provide ‘Cause You know just what we need Before we say a word
You're a good good Father It's who You are, it's who You are, it's who You are And I'm loved by You It's who I am, it's who I am, it's who I am
Cause You are perfect in all of Your ways You are perfect in all of Your ways You are perfect in all of Your ways to us
You are perfect in all of Your ways Oh, You are perfect in all of Your ways You are perfect in all of Your ways to us
Oh, it's love so undeniable I, I can hardly speak Peace so unexplainable I, I can hardly think As You call me deeper still As You call me deeper still As You call me deeper still Into love, love, love
You're a good good Father It's who You are, it's who You are, it's who You are And I'm loved by You It's who I am, it's who I am, it's who I am
You're a good good Father It's who You are, it's who You are, it's who You are And I'm loved by You It's who I am, it's who I am, it's who I am You're a good good Father
I'm sure you are all familiar with the Biblical account of creation. In six days God created the Earth and on the seventh day He said that it was all good and He rested. Brinkley decided to wait until the eighth day to rest. Rest in the comfort of his own home that is. Brinkley felt much better yesterday and played some. He smiled several times and even laughed a few times. Late in the afternoon, we consulted with the ICU team and pulmonology (and I consulted with a couple of great friends who are medical professionals on my on) and decided Brink was to the point that I could care for him from home. He is still sick and most likely contagious and will not return to school or therapy until next week. Currently, he is still requiring oxygen but we hope to be able to ween that over the coming days. We will follow up with pulmonology on Friday morning. You can see from the photos that he perked up a lot more yesterday.
He managed to convince the nurses to let him play with the thermometer.
One last chocolate pudding before we headed home.
More thermometer fun.
Praise Jesus, I'm going home!
Please continue to pray for him. There are so many things to think about when treating a child who is medically complex. I failed to think about all the therapy that he has missed for the last two weeks. It never occurred to me that I should ask for therapy while he was admitted. He laid in the bed for eight days, plus the two days he was home sick. When I took him out of the bed to go home, he nearly hit the floor. He poor little legs are like jello. Being bedridden for a child with hypotonia is terrible. I didn't realize just how terrible. We've got a plan of exercises to try at home until we can go back to therapy next week. Please pray that he hasn't regressed and that he will bounce back quickly and stronger than ever.
Today makes the seventh day of our stay. This is our longest stay in about two years. We are hoping that it will be wrapping up soon. Brinkley is starting to feel more like himself and actually ate some of his lunch today (chicken and fries). His favorite part of lunch was the chocolate pudding. He was not interested in dinner but did scarf down the vanilla pudding. He played a little with some toys on his bed. He still needs oxygen support and is needing more help than usual at night. His body temperature is staying in his normal range now. We are attempting to put him back on his home settings for his CPAP machine tonight. If he does well we will discuss a plan for working toward home. Small steps are positive steps and we've made a few, so things are moving in the right direction. Please, please, please pay attention to your symptoms! If you have a cold, stay home and take care of yourself. This strain of RSV is AWFUL and could (and has) take the life of a person that is medically fragile. In an otherwise healthy person, this virus simply looks like a bad cold. This is not isolated to the upstate. I heard today that the peds cardiac unit at MUSC is, and has been, full of terrible cases. Many of our Instagram friends have told us that their children have been battling this also. It's everywhere and is putting so many of our fragile kids in ICU.
Yesterday afternoon Brinkley perked up a little and asked for a banana. He also asked to watch Clubhouse (a.k.a. Mickey Mouse Clubhouse). He sat up most of the afternoon and talked to me a little. It was the first time in two or three days that he had eaten or talked to me. Reese got to come visit for a little while last night and they were so excited to see each other! Brinkley was hugging and kissing Reese. (He's had no interest in anyone else since we've been here.) This afternoon the doctor told us that this is the worst strain of RSV they have seen in several years. It has been really rough on the babies and medically fragile kids. He said that some kids have been here 2-3 weeks trying to get back to baseline. I am certainly hoping that is not the case for us. Tomorrow makes 7 days. One thing that works in our favor is that we have a wonderful NP at the pulmonologist's office that insists that I keep some equipment at home (even though I have thought it wasn't necessary). She's a pretty smart lady and that gives me the ability to take care of some things from home that would require other people to be admitted. It looks like at least a couple more days in the PICU and then we'll reevaluate. Brink has been eating a little today, all though, he hasn't been drinking. He actually ate a few Joe Joe's (cookies) and asked to watch Baby Signing Time. If you know my boy, you know this is a great sign that he is feeling more like himself. Currently, he's wrestling with a box of crayons and coloring. Please continue to pray for him and specifically that his CPAP settings would be able to be adjusted back to home levels. Pray for our family as it is tough to work out the logistics of having our family split between the hospital and home. Finally, pray for the family that was in the room around the corner. It appears that the child passed away yesterday afternoon. I can't imagine their grief and it is obvious that the recent losses are weighing heavy on the staff.
Brinkley rested much better last night. However, he had a hard time regulating his body temperature. He stayed at 91 degrees most of the night. This morning he has gotten up to 96 which is close to his normal of 97.5. I just spoke with the attending doctor in the PICU and he said that Brinkley's symptoms are consistent with the current strain of RSV that they are seeing. ( I had no idea that there were different strains.) He said that it has been really bad this year. It appears that they have been treating numerous kids with RSV. We will continue to watch him and plan to move back to a regular room when his CPAP machine can be adjusted back to his home settings. He is resting pretty well today and is back to a regular oxygen cannula for now. His oxygen requirement is low at this point. He is grumpy, but moving in the right direction! We tried a different respiratory therapy technique today. Brinkley wore what our buddy Grayson calls the shaky vest. It's a belt that goes around the chest, inflates, and then vibrates to break up congestion. It's a little scary at first, but he did great. He sat in my lap while using it and it felt like we were sitting on the running washing machine. Here's a peak:
