It’s finally time for that final post. Once again, I can’t believe how much time has passed, and early this week, as I realized it was Riley’s “fake” birthday, September 28th, the day she was “supposed” to be born, I figured this may be a good time to update everyone on our lives and how Riley is doing.
As you may remember, Riley’s “real” birthday was July 8th. I’m pretty much over the “actual” vs. “adjusted” age thing, although once in awhile I do use it as an excuse…”Well, technically she’s really only 9 1/2 months old, not 12 months, so it’s okay that she’s not walking yet.” However, I don’t have to do that much, because she’s doing amazingly well developmentally. Riley is climbing up the stairs, cruising all over the place, and appears to be smart enough to back down the stairs and back off of the couch rather than going head first. She’s partially potty trained (sort of weird I know, but no joke), combs her own hair, and throws food off her tray like a champ. She’s still being seen by a physical therapist, with the ongoing goal of walking. Trust me, she has no problem getting around. She can actually crawl faster than I can, as I attempted to chase her the other day and had trouble keeping up. Hard to admit, but true. I’m in no hurry to have this kid walk…let’s face it, her first steps aren’t going to be a relaxing stroll, they’re likely going to be more of a hyper sprint.
We had a low key birthday celebration for Riley with our families, which was absolutely perfect. Riley had a smash cake, and of course it was the one moment she appeared rather subdued and just sort of daintily touched the top of the cake, causing us to force her hand through it so the goal of the smash cake could be complete. She was beyond spoiled by family and friends, and her wardrobe remains out of control.
I decided that it was also appropriate to spend a portion of Riley’s birthday with her BFF nurse. It only seemed right, as she’s a big part of the reason we’re able to celebrate Riley’s first birthday with smiles on our faces. We did a little shopping while she carried Riley around the stores, and she spoiled Riley will several new adorable outfits. They were both in their glory:)
Riley also had her first trip to the beach. She enjoyed the calm ocean, but wasn’t feeling the sand. When she discovered that sand was not to be eaten, she decided she was over it. We had a wonderful time and plan to have a pool next summer so the princess can sunbathe without feeling the grit of sand between her teeth. God forbid.
Riley continues to attend the same daycare, and it seems she has finally adjusted. She enjoys playing with the other children, although she continues to require music playing and a blanket covering the outside of her crib during naps to minimize distractions and her nosiness. She’s the only one on the move in “Babyland,” so she’s been quite the challenge for the staff, and has been the reason for their purchase of baby gates and the sign on the door that now says “Please open door carefully as there are mobile babies in this room.” Mobile baby = Riley on the loose.
It’s crazy how much I look forward to waking up in the mornings and going into Riley’s room to be reunited with her after a night of sleep. I look forward to every second I spend with her, as she does something new and fun every single day. She makes us laugh at least 10 times a day, and I kiss her to the point that she now will shake her head “no,” indicating “Enough, ma.” Her dancing skills are out of control and she has a strong love for music. Her days are incomplete without some Meghan Trainor or Bruno Mars:)
Medically, Riley has been doing remarkably well. However, as expected, we still hit an occasional bump in the road. We were on a good streak for about 5 months, and then over the past few weeks, I started to get that feeling in the pit of my stomach again as I scrutinized over how she sounded when she was eating, sleeping, and breathing.
It all started after a great report from ENT in August, and the decision to take her off of her reflux medications. We began the weaning process, taking her off of her Prevacid, which she receives in the morning and has to wait 30 minutes before she can eat anything. I was beyond excited about this no longer being a part of our morning routine. Then we planned to take her off the Zantac if she continued to do well over the next 2 weeks. However, about 2-3 days after Riley was off the medicine, she started to sound really “junky,” and was not eating well. She was pulling off the bottle constantly and always sounded like she needed to clear her throat when she would eat. I called ENT, and they put her back on the medicine. Her symptoms started to resolve, and we began to feel better. However, every once in awhile, I would hear this subtle, residual raspiness that reminded me of when she had a cyst growing in the past. However, I seemed to be the only one noticing it, so I let it go for a few days, but then it started to wear on me. I couldn’t help but feel that something just wasn’t quite right. So I decided to call Riley’s ENT and just share what I was feeling and hearing. It almost felt therapeutic to get it off my chest. “Why don’t we schedule an appointment and I’ll see her in the office,” says the ENT. Done.
The weekend before this appointment was scheduled, late Saturday evening and early Sunday morning, I hear something coming from the baby monitor that wakes me up out of a sound sleep. I was in a bit of a fog, and couldn’t quite tell what it was, so I got up and walked over to Riley’s room. I hear every breath, and not in a good way. She was wheezing and had a bit of a stridor. Ian heard me get up and came to see what was going on. He quickly became concerned as well, and I saw the look on his face that I’ve seen many times before. I call it the “We need to take her to the ER” look. I called him out on it and he didn’t deny it. However, we agreed that I would sleep next to her and monitor her for the remainder of the night, and if it didn’t get better by the morning or if it got worse, we’d take her to the ER.
Long story short, her symptoms didn’t improve and we ended up taking Riley to the ER at around 9:00am Sunday morning. Of course on our way in, her symptoms began to improve. However, Ian and I continued on our journey, knowing that this is how Riley operates…if we turned around and went home, she would have declined again. We were greeted by the ER doc, who appeared to be approximately 12 years of age, and as he was having trouble observing any of the symptoms we reported, he asked “What worried you so much that made you bring her in?” So I reiterated what she sounded like throughout the night, along with her history of chronic lung disease and multiple recurring cysts, pointing out that we’ve been questioning whether or not she may have another one growing and are scheduled with ENT this week. After consulting with the attending, the ER resident returned and informed us of the plan of action – a dose of steroids and discharge home. Been there done that. We can handle that. It was the quickest, most efficient ER visit ever…we were in and out in about an hour. We got home and had more than half the day ahead of us…just another Sunday with an eventful start to the day.
Riley’s ENT appointment was scheduled on Monday, September 28th. Ironically, this was Riley’s “fake” birthday. However, it really would have been nice to make a wish and blow out some candles. The anticipation of this day was starting to wear on me, and I started to actually feel relief the morning of, knowing that we would be getting some answers. Ian and I both attended this appointment, as I knew there was a chance they were going to scope Riley in the office and no one should have to go through that alone. Ian and I were flipping coins on who had to hold her down during the hour long wait in the waiting room. Turns out we both drew the short straw…
Following a quick exam, the ENT doc decided that it would be a good idea to scope Riley in the office so he could see what was going on, given our observations and Riley’s history. The disadvantage was that this scope only goes so far and remains above her vocal folds, so even if he doesn’t see anything on the exam, it’s still possible that there’s something going on. It was worth a shot to see what we could see. I needed some answers. During the scope, Riley sat in my lap and I was instructed to hold her arms down, and Ian had to hold her head. It was a bit torturous for both of us. The scope went through Riley’s nose and down her throat, and as you can imagine, is not an overly pleasant experience. She cried and screamed, and the ENT dictated what he was seeing, raising his voice some so that we could hear him over Riley’s wailing.
Once the scope was removed, Riley recovered quickly as she always does. She’s such a trooper. The ENT then began to explain to Ian and I that he saw something, but it was not what or where he expected. There’s “something” on the underside of her vocal folds, “but I’m not exactly sure what it is.” He pointed it out to us on the pictures he took during the exam. “It didn’t clear when she coughed or cried, so I need to see her in the OR to get a better look and remove it,” he continues. Here we go again. We asked some questions, and basically what we learned is that the location of this “thing,” whatever it is,” is much higher up than her other cysts. Her other cysts were subglottic, meaning below the vocal cords. This one is actually on the cords. I became concerned about the risk of removing it with it being so close to her vocal cords, but the ENT reassured me that where it’s located on the cords (on the underside) is not a bad spot and shouldn’t be an issue. Well, Happy Birthday Riley Mae.
Surgery has been scheduled for Monday, Oct 12th. It’s just another hurdle for us to jump over, and Riley will of course fly over it, hardly acknowledging it as a hurdle. This past week is confirmation that Riley will continue to keep us on our toes. It has also confirmed that there will be no prom or car keys when she turns 16. She is grounded for a long, long time;)