Wow, the changes that have taken place since our last update. Before I get to the lack of answers, fun trips, and therapy reports, how bout I share one of the biggest changes we’ve experienced over the last several months. Specifically, its how we have started to view Bentley’s world. Yes it started in January, but not on this degree. Now it’s becoming second nature. For example, think about a glass of ice water………………………………………………………you thinking?......................................................................................at this point you’re like, “ok, ice water, yippee. What’s so special about a glass of ice water?” Well let me tell you.
We look at a glass of ice water and immediately begin asking ourselves questions: Is that glass actually glass, Styrofoam, paper, or plastic? Is it textured, or smooth? How much condensation is on the outside? How cold is it? Has she felt a glass like this before? Is this a new texture? How will she react if we touch her hand to it? Then we start the therapy. Sit Bentley on the table, -who cares where we are, or how dirty the table may be. “Lindsay, hold her steady, I’ll grab the glass. Oooh, it’s got ridges. And it’s pretty slippery.” Then we place the glass against her chest, alerting her there is something to grab. She reaches around and puts her hands on both sides of it. Sort of startled by the sudden rush of chill to her fingertips. She immediately has a face of intrigue. She brings her hands back to the glass and slowly begins rubbing it and poking it. She’s probably got one hand rubbing over the ridges (on Cracker Barrel glasses) and using her other index finger to poke the glass on the other side. Just poking away, as she inspects the density of the funny, wet, cold, round, hard glass. Eventually a hand makes it to the top of the glass where the rim is. All of a sudden she grabs on and starts pulling. Back and forth, if she has two hands on it, she will sort of shake it back and forth against her chest. Now we begin the lesson that the glass has contents. Slowly as she is shaking her head back and forth, for whatever reason she has for doing this, we try to get the rim to her lips and let her get a sip of that cold liquid. She’s stunned for a second. Maybe chokes a little because I tilted it too quick, and then grins. She sticks her tongue out and tries to put the whole glass in her mouth in an attempt to get more, even though she has no idea exactly how big it is. We perform this terribly unacrobatic maneuver 5 or 6 times to help her begin to understand that this object is a container of liquid.
I know that was a crude description, but basically this activity is Lindsay’s entire life right now. Each and every object is new. Well, at this point not every one is new. But now that she’s of age to eat most any food or taste most any drink, we are throwing everything at her. Every moment of the day that Bentley is awake, Lindsay is exposing her to textures, shapes, tastes, smells, and sensations. There is no such thing as Bentley just relaxing, unless she is asleep. Life is therapy. Of course, she doesn’t realize it, but I can assure you Lindsay and I do. It’s exhausting. I’ve tried to tell people, “Play is not just play. Everything has to be purposeful.” The glass of water description is the best way I can describe that. A glass of water is so simple, and we encounter it constantly, but when you stop and think about the entire experience of a cold glass of water, you can begin to realize how much more there is in everything we do. The biggest difference is we can gather almost everything Bentley does just by looking at it. I see condensation, ridges, clear contents, round shape, and immediately know it’s a cold glass of water. I see it’s in Styrofoam or plastic, or an Auburn Tervis tumbler. She has to methodically work her hands around every object she encounters to gain an inkling of what it is. Not to mention the fact that every object she touches magically appears out of thin air. Kind of crazy to think about. No matter how many times we give her something, she never really knows how it gets to her. She has some wiffle balls she plays with, and of course she will drop it, or accidently throw it. Well, within seconds it appears back in her hand. She doesn’t know it rolled away, or how far it went, or how anything. She just knows if she drops it, there’s a pretty good chance it will appear again out of nowhere. I know that was kind of random, and we are trying to figure out ways to teach her some of these things, but still, its crazy to think about that experience from her perspective right now.
On to another topic, I get Bentley out of bed every morning. This first 15-20 minutes, or so, is probably the most uneventful woken moment of her day. I cheat. I snuggle with her. I hug and kiss her a thousand times. I let her smell my coffee, and my morning breath. I tell her I love her 200 or so times, while making her bottle. Then, as soon as she starts to give me her “I’m hungry stop kissing me” cry, the therapy begins. Have I mentioned the constant battle to keep her from rubbing her eyes? Wow that battle got old months ago, but we can’t give up on it, one of these days she’ll figure out she might as well quit trying. This battle just stinks.
I at least begin her bottle every morning I don’t have an early meeting. About halfway through it Lindsay comes in and takes it from me. Lindsay is a full-time mother therapist. I told Lindsay the other day, it occurred to me Bentley would not be any where close to where she is right now, developmentally, if she had kept working. If we were in Birmingham, Lindsay would be working and we’d be taking Bentley to daycare every day. I can only imagine how much purposeful play she would get there, how about none. Ok, maybe 15 min. With Lindsay, she gets hours of it. Unless Bentley stays awake the entire ride between Birmingham and Dothan, which occurs twice per week. The fact that they have the full day to work is a huge blessing to me. I definitely don’t show enough appreciation for it. Lindsay is the most freaking amazing mom in the whole entire world. I wish I could give a summary of their day, and give it justice. You really just have to see it, or feel, smell, and taste it.
Ok, enough of my ramble in a poor attempt to get you to understand the differences between a “normal” kid and one with amazingly awesome needs. If you know me, you know I’m not doing it in an attempt to gain sympathy or pity or any crap like that. I really just want to share it, and help anyone who meets Bentley understand the interactions that take place. There is so much more than just sitting her down and letting her play with her favorite toy while we do the dishes or vacuum the den, like I assume you can do with most kids. Have I mentioned Bentley’s most favorite toy is a car wash sponge? True story, we have two.
Well, since our last update we haven’t gotten much info from the medical community. We did have a Neurology appointment a week or two ago, and as I suspected, they have pretty much ruled out muscular dystrophy. This is a huge praise. (Mentally, I’m thinking of AJ Hudson say “Praise the Lord.”—you have to know AJ Hudson). This is great though. The Neurologist said to call him if we need him, but otherwise there wasn’t much for him to offer right now. Lindsay claims to have asked ten thousand questions and he put her at ease. So that’s good. No M.D. Tomorrow we have a follow-up with genetics. We haven’t seen them in a while. They have been running tests all summer. Some tests more than once. I’m taking a leap of faith and sending Lindsay without me, in the event they need us to go somewhere or do something that could require more time away from Dothan. I may have her Facetime me from their office, haha. Either way, at this point nothing a doctor can say changes our plan. Bentley still goes to the Bell Center every week. Every other week is at the HEAR Center. Sadly, our Hand in Hand therapist, Patty, retired last month. She was, hands down, the best therapist we’ve had. Sorry, everyone else. She’s been so positive and encouraging. She’s gone above and beyond with therapy sessions. She’s gotten B in the sensory room way more times than she was supposed to. And she’s hooked us up with some awesome therapy toys. Don’t worry Bell Center, you guys are awesome and we love you, but Patty got us first, and has offered lots of strength and encouragement to a mom who has the wind nocked out of her every trip to the audiologist. This leads me in to my next point, if you don’t have a clue of how to help my baby, just say it. That doesn’t mean we’re going to stop bringing her to you. Bentley has obviously challenged every therapist we interact with. They either know deaf kids or blind kids. Guess what, light up toys don’t do squat for a blind kid, and noisy toys don’t work for a deaf one! I digress.
Patty took on this challenge and really started thinking outside the box. She was kind enough to invite our speech pathologist to a visit to the Sensory Room. This speech person has a lot of authority on when B gets Cochlear Implants. I may have mentioned that it’s a “Journey.” You don’t just hit 12 months of age, and poof, you get approved. Nope, there’s a boatload more that has to be accomplished. Most has to do with audible communication, naturally. Unfortunately, after a 3 hour drive, or after a Bell Center morning, the HEAR Center is not B’s favorite place to show-off. This is a small problem. Mainly because they never get to see what we experience with Bentley on a daily basis – audible and physical communication. It’s too hard to explain in typing. So I won’t. But we’ve figured her out. She has a way of telling us everything she wants us to know. Lindsay is happy to provide you with the details, if you want. Along these lines, you can imagine how important her first birthday is for us…Big and small, actually. The celebration will be great and all, but not quite like seeing Warren (her cousin) pick up his entire cake and try to shove it in his mouth. That was awesome by the way, you had to be there. As far as B’s birthday goes, we’d rather just get a set of implants.
The Cochlear Implants have to wait for a little while, probably. Until Bentley shows the HEAR Center, on a constant and continual basis, a solid means of communicating, she ain’t getting them. I can understand this. There is a massive investment of resources from multiple avenues to implant and then provide support. In addition, the level of therapy involved in teaching B what hearing actually is is massive, for a sighted child…
Please keep praying for this. We don’t know when we’ll get the greenlight on her CIs. It could be November, not likely, or November 2014, or 2015. The wait just sucks. We know they aren’t 100% guaranteed to work, but the level of development that can be achieved by gaining the gift of hearing, truly would be a miracle. Why not give my angel the gift of hearing??
Oh, yeah. Bentley’s summer: She had a great one. My last update shared some of the best parts. What’s happened since then?????
- We moved to Dothan!!
- Bentley’s first beach trip!
- Bentley’s second and better lake trip!
- Bentley’s first icecream cake!
- Bentley made it to 14 pounds!
- Bentley’s first Snackpack!
- Bentley’s first yoga ball!
- Bentley’s first toy backhoe (tractor with a shovel)!
- Bentley’s first Auburn Tailgate!
- Not Bentley’s first Auburn game. I’ve seen how miserable parents are leaving the game in the second quarter with a Baby Bjorn. I’m not even trying it. Besides, I bet we can get handicapped tickets once B is walking with her cane. Those seats are closer. I wonder if handicapped people have priority seating? Does your first request for handicapped seats place you in the end zone, then each year gets you closer to the 50? Wish I knew someone in charge of priority seating at Auburn. Although, my next thought is, “where is the best seat in the stadium to feel the noise?” Since, honestly, I’m starting to lose my concern for the view.
- Bentley’s first swing! -don’t have pictures, but I hung it up in the shed at the farm, pretty cool!
If I can think of any more firsts, I’ll let you know. I’ve included some pictures of some of Bentley’s favorite toys. Not unlike your den, ours is covered in toys all the time. However our toys may be a little different. Which is nice on the wallet. Bentley loves bows. Bows of all sizes. I’ve mentioned the car wash sponge. She likes the one with baby dreadlocks on one side. We have made her a couple of texture boards covered in rope, toothpaste caps, carpet and turf squares, and hot glue drops. We still use her little house and we’re changing out the toys in it occasionally. We have balls of all sizes. She’s also, finally, sitting up in her Bumbo seat, and her booster seat/high chair thing. Pretty cool! One reason we have bows of all sizes balls of different textures and sizes is so she can discover that two of the same thing can be different. Or you could say, two different things are also the same. Yep.
I’ll spare you any more reading, if anyone is still reading at this point. Enjoy the pics. Bentley is getting so big. She’s sitting up with a little help. She is learning to stand with a yoga ball. We think she’ll stand before she crawls. For some reason she had no desire to push off the ground with her arms. She rolls over without a problem, but mainly uses her legs. She can almost fit her entire foot in her mouth. She is reaching and exploring more with her arms/hands, than she was a few months ago. She is holding her head up, although at time she just lets it flop backwards. I guess it’s just easier. She is just so awesome. She has the most gorgeous smile. I just love her to death. Did I mention I’m her favorite? ‘Cuase I am.
Thanks for continuing the prayers. We are nothing but blessed to have the friends and family we have for support. Bentley turns 1 in just a few weeks!!! We’ll try and update a little more often. Next time we’ll provide a little more education.
For some reason I also want to do the Sonday Live benediction right now, Steve Strange style (cross your arms and hold the persons hand beside you)(and get in a circle). I believe you can find it in Numbers.
May the Lord bless you and keep you
May the Lord make his face shine upon you
And be gracious unto you.
May the Lord lift up his countenance upon you
And give you peace. Amen (now spin out of the circle)