I sit this morning with my coffee as Bentley’s oxygen concentrator hisses and hums in a melodic tune we have come so fond of around here. I’m not sure I can sleep without it these days. We returned home from Children’s right as February crept in, with a small collection of equipment. Bentley was recovering so fast it was as if she had never been admitted to the hospital at all. We kept her on oxygen for a few days, weaning to night time only for a couple of weeks. Eventually we felt confident in her ability to maintain her oxygen and just discontinued it all together. I was very pleased we were able to get a suction machine this time. In the event she ended up really congested or stopped up I can suction her nose and upper airway. However, we didn’t need it when we got home.
Through the winter we were able to take part in a few fun events including the annual Mercedes Marathon. Bentley and I, again, proceeded to dominate the super hero Bell Center 10-meter dash on Saturday before the big race. You should have seen the determination on Bentley’s face as we approached the starting line. She appeared as if she was about to race an Olympic event. I actually had to calm her down. I’m pretty sure we won our heat, and although Bentley wanted me to petition for a tournament of Bell Center participants, following her victory and inflated ego, I reiterated not everyone was as prepared as she was and we would push for that next year. Lindsay, however, decided it was the perfect year to run the half marathon. Butch and Alana kept Bentley and Ally the morning of the race so Lindsay could run it. I had a blast with the half marathon this year. Shortly after Lindsay started I walked back in the hotel and got a hot coffee. It took a good hour to warm back up, and then I proceeded to attempt navigating the city so I could see her a few times along the route. That failed miserably as I found her once, and then got lost with the traffic rerouting and missed her finish. Bentley and Ally were there by that point and cheered her across the finish line. Lindsay was so inspiring I have now started my morning routine with a brisk jog around the neighborhood. I may even do the relay at the next Mercedes…we’ll see. But I really am running, so hardcore.
Bentley has visited her favorite downtown hotel 4 times this year, three of those since May. We are finally getting a jump on some of her respiratory woes, but she puts us through the ringer that’s for sure. We have come to the conclusion we must treat her more like a child with CF. As she develops a cold, which has been all summer, she is unable to expel the secretions or snot. The pooling snot provides the perfect environment for bacteria to grow and turn into a narly infection. We have been catching it more on the front end recently, with a few close calls. The problem is, at the moment she has been super snotty for a couple of months and we are in the perpetual routine of breathing treatments, chest percussions (I bought a electric percusser and it is the best thing ever, got it during our last hospitalization from Amazon), and naso-tracheal suctioning. Occasionally we put the NG tube back down to get her some fluids. She tends to not want to drink when she is super snotty and then heads toward dehydration, quick. She has been acting as happy as usual lately, but stressing her mother out with coughing spells and snot plugs. I am currently awaiting FDA approval of a new oximeter with Bluetooth tethering so I can get some remote monitoring going from work (the inner nerd in me coming out). I figure if we can monitor patients at the hospital remotely, why can’t I monitor my child at home?
In the development world, Bentley is growing like a weed. She is so smart. She has mastered a little more sign language, but most importantly she is singing!!! Like, not with words and all, but with her voice and “Ahhhs”, “ooohhhhhs”, and “eehhhs”. She keeps the beat right in line with the music and she can absolutely belt “The Wheels on the Bus”. Other favorites of hers are “God Made Me”, “The ABC’s”, “Fraira Jacka (sp)”, and “Can’t Stop the Feeling”. HAHA jk on the last one. But seriously though, she is singing constantly and it is the most beautiful sound on Earth. She is my Angel. Ally hasn’t started singing along yet, but she does dance along. Her dancing is hilarious. B really is expanding her song catalog and is surprisingly spot-on with pitch and rhythm. –hold on, her oximeter is alarming, let me go check it
She’s good -She sleeps on oxygen because we also think she has sleep apnea. However, she has learned she can pull it off when it tickles her nose, and then we usually get startled by the desaturation alarm a few minutes later.
Bentley has started back to pre-school and she has been so excited. When I get home she can’t wait to tell me all about it. She has the best teacher and aids and loves to take PB&J sandwiches in her Pottery Barn lunch box. Lindsay went to school to read to her class recently and B did the motions to the book the entire time……ok, so Lindsay had to help her. I think B just had a little stage fright.
School has been good for her though, and Lindsay. B is getting to hear more input from children and other adults. She is exposed to other toys and challenges. I think it has played a big part in the strides she has taken recently. Mad props go out to the team at Hall Kent, we appreciate you guys. Also, she has around more little kids her age. I think some of them really like her too. -Hopefully not the boys, I can’t handle that right now.- But it gets her out and develops relationships with others. I spent quite a bit of time with the special needs classes when I was in high school. Those kids need exposure to “normal” more than you can know. Especially those like B who are fortunate to show no cognitive impairments, just physical and sensory. I do pray for her friends as she grows up….l’ll give you that one candid emotional insecurity of mine. I pray she has friends.
Ok, enough of the sappiness…. Bentley has a new talking tool we get to keep for a month or so. It is this Dell tablet that has a really fancy software on it. It allows her to push “buttons” and the tablet talks what button she pushed. We call it her Talker. She can push a button for “Drink”, “Dad”, “Ally”, “Mom”, “Eat”, and many others. This thing is cool. And really expensive (primarily b/c of the software). We are working on getting one of our own but may need the assistance of some grants to fund it (If you know of any grants to help send me a link, I'm just googling "special needs grants") . Either way, we are going to get one for this girl. Every time she pushes one of the buttons her face just lights up. She already gets what it does, she just has to work on remembering where each button is. It’s really cool and amazing to see in action. The technology that is developing around special needs is just fascinating. The whole eye movement controlling computers blows my mind. We don’t want one of those for Bentley though, her crazy eyes would crash Tesla’s smartest car.
Ok, I’m spent. Not much else to talk about. Bentley turns 4 this weekend and we may be having a small Itty Bitty Peanut Festival themed party for her. You are all invited.
Ally is growing like a weed too (90%ile in weight) and being a great little sister. The first thing she wants to see in the morning is “Sishy”, that’s what she calls Bentley. She wants to play with B more than B wants to play with her, but time will help that. B is coming around to a sister, I just don’t think she realizes she has a friend to play with now as she still selfishly hogs any toy in her vicinity.
Thanks for the keeping my sweet girl in your prayers. She is 4 years old!!!!! My how time flies. I feel like just yesterday I was sitting in the lobby of Children’s South seeing EK play in the corner and praying fervently for something I could not yet comprehend. Thank you all. It takes a village…
Check this podcast out: Lenya the Lion.
Did I mention we moved this summer too? Yeah, Bentley was intubated the week prior. It was fun....NOT. But we did move into a great little house. We absolutely love it and feel very fortunate to have found it. My first home purchase so I really feel like a grown-up now.