Oh my little baby girl that puts me through emotional acrobatics. I love that little squishy baby so much, and she’s just so stinkin’ cute I just have to absorb her cuddles into me.
Ok, that’s out of the way.
Ok now really.This last week was a good week. We learned some new news, but pretty much all positive.
We first visited the hospital’s NICU developmental program, who wants to follow Avery to track how she’s developing, and whom at first I was somewhat hesitant to visit because we are already visiting specialists for everything and it seemed a little redundant and like a potential waste of time. That being said, this was only the second appointment, the first having been at 3 months when I first learned about her chromosomal abnormality, so I did kind of have a bitter taste from that experience. But we went anyway, with the intention of trying again and if it wasn’t helpful, then I just wouldn’t schedule a follow-up. Well I’m glad we went. There were three ladies, one who played with Avery, one who sat and took notes, and one who sat next to me and asked a bunch of questions as well as narrated what the one who was playing with Avery was doing. They put her in a highchair and gave her different objects, like a ring with a string attached. The narrating lady explained, “she’ll put the ring out of her reach and see if Avery can figure out that she can use the string to pull it closer.. see, there she figured it out. This is a problem solving skill and is part of a next step ability, a skill you would need when driving, or when they figure out they can push a chair up to the sink.” Oh great. Another child that can push furniture around and get into things, just what I need!
They kept gushing over how pleasant she was and how sweet and adorable. I’m pretty used that that kind of talk and I tend to assume people say that to all the cute little babies, but the one who was playing with her said so many times that I actually lost track, “why can’t all my patients be this good!” They asked me if she’s always this easy-going and I replied that she was, unless she was hungry or sleepy (which when I told her pappy he said it with me verbatim in stereo when I was telling him the story). They noted that when she did something they asked that she looked for approval with a big smile, and it made me think about how we’ve been working on different skills and how when she does them we (PT, OT, grandparents, myself) all make a big deal with lots of applause. They asked about her motor skills and I did warn them that she might give heck if they put her into a crawl, so they saved that for the very end. And she did. She was so sweet and complacent the whole time, and sure enough, when they tried to force her onto her hands and knees she raised heck, but stopped the minute they put her back into a sit.
Because her back surgery caused her to be immobile and basically stuck on her back with little to no stimulation to her gross motor skills for 7 weeks, I joke that her 9mo adjusted age is 7 months. I told them that too, because I know that she’s doing roughly what Aria was doing at 7 months and that she’s a little delayed on getting to a sitting up position on her own as well as working on crawling.
Well sure enough, she scored at 7 months on her gross motor skills. But she scored above her age on her fine motor skills, and at or above her age on cognitive abilities! So basically, when she couldn’t move around much, she focused her efforts elsewhere 🙂 She’s not a lazy one, that little tot! They think she’s doing wonderfully and they had no concerns about her mental capacity. They do want to continue following her for her vision, as she seems to have some strange tendencies, like taking a vision break and looking over your shoulder or at your forehead, or tilting her head back to look at some things, which in all honesty I’m so glad someone else observed because I often feel like I’m the crazy one when I bring up quirks of hers and I get brushed off. It seems like some of her uniqueness is either out of everyone’s specialty or unexplainable.
So yeah, really glad we went, they saw all the things I and PT/OT see, I’m not crazy, and my baby is on track to being a normal healthy baby girl (and the cutest!).
Next we went and had her head scanned for her plagiocephaly (flat spot) and they said she could go without the helmet during the day but should keep it on at night for another four weeks. Yay for helmetless baby girl!
After that we went and saw the Cleft Palate folks and prepared for the surgery coming up in June. It was pretty straigtforward, and the doctor explained the risks and whatnot, and said, “less than 1% in my hands” which sounded both odd and comforting to me. Typical recovery is 2 nights in the hospital, but if she’s doing well the doctor said we might be able to be discharged after the first night, but my mother-in-law and I agreed that it would probably be best to just stay so that Avery can focus on recovering and not trying to keep Aria from jamming things in her mouth. Which she does, like play food. Plus Avery will be restrained to keep her from putting things in her mouth. Upon reviewing the appointment summaries on our Children’s account online, I found that the surgeon had left her review of the appointment, including my consent and her evaluation of Avery, which included, “On exam Avery is an adorable, alert, interactive 9-month-old female in no apparent distress. She is well cared for and well groomed.” 🙂
Last was ENT and after the doctor asked about her past Audiology appointments and based on his finding fluid in her ears that day, he recommended we move forward with putting tubes in her ears when she had the cleft surgery. So backing up a second: we’ve seen Audiology twice, but the first one was kind of a loss because her ear drums weren’t moving and she wasn’t responding to the tests consistently. So we went back in April and while her left eardrum didn’t move properly, she did hear mostly normally out of that ear, but her right ear drum was moving but she failed all of the hearing tests on that side and the audiologist said it appears she has hearing loss. But she did recommend that at the very least we repeat testing several more times with different audiologists to get the most accurate measurements, and ideally we would have an ABR test, which can only be administered while she’s sedated but would be the most accurate as it would actually measure brain activity so we’d know whether the brain could hear the noises or not, instead of just measuring Avery’s reactions. Back to the present: While talking to the ENT doctor he explained we couldn’t coordinate the ABR with the two surgeries (cleft palate and tubes in the ears) and I gave my hesitations about having her sedated again later, as it would be so many times (with these surgeries we’ll be at three in less than a year 😦 ). BUT, he said that even though the last audiology appt showed her right ear as being healthy but hearing loss, it could very well be that she did in fact have fluid in there and it may be why she couldn’t hear. SO, the tubes might actually improve her hearing on that side and she may not have the hearing loss.. or at least not as bad as we thought! After learning this Eric and I discussed waiting to schedule the ABR until we let the tubes work and follow up with Audiology again and see what we get. I would feel much better about that.
So that was one day, then another day we went to Orthopedics and learned a lot more! So her scoliosis is due to the plates between her vertebrae growing at odd angles instead of square/rectangular shapes. Its based on the cells growth and I’m not 100% sure I understood how that all works or how it would be corrected if it continues to grow wonky, but based on her last x-ray and this one it had not changed, and currently the scoliosis is very mild and he would be perfectly happy with her in 10 years if she continued growing the way she is now. He explained why, from his perspective, it was so important that we had the tethered cord release. From what I had understood, it was more about the future potential damage that it could do as it pulled and stretched where it shouldn’t, but from his perspective it was causing her nerves to not communicate with her body the way it should. So it impacted her scoliosis, her clubbed feet, her hips not moving correctly.. and now corrected it will take time for it to communicate properly so her body has some catching up to do. Wow! He couldn’t explain why her hips won’t abduct out flat the way they should, but said that might correct now. He kept using the words uniquely made, and God’s design when talking about her, like her extra rib that is fused with another rib. I brought Denise, my mother-in-law, with me to absorb whatever he might tell us because I was prepared for it to be a lot (which it was), and she brought up how Avery can be sitting there and reaching for something way out in front of her and her nose will pretty much touch the floor as she stretches forward. I hadn’t thought anything of it because babies tend to be flexible, but he actually explained that she has extra laxity in her joints. This means she will be more flexible than most, and may very well be a contortionist when she figures out how to move her body, and it will both be blessing as well as problematic as she’ll be more likely to dislocate joints. Speaking of which, she doesn’t show any signs of hip displaysia which everyone’s been watching for. He said her legs and feet looked beautiful, and he recommended we leave the special shoes on for another year to help them set and allow the muscles in her feet adjust but we could also swap out for regular shoes on the wrong feet. Otherwise he said she has a great structure and he had every belief she was going to be able to walk, run, jump, climb and do whatever she wanted and otherwise be a normal little girl!
So. This week. My baby is going to be ok. Normal. Uniquely made but capable of being a normal little girl. That’s all we really wanted.
And it finally sank in that God really does got this. He gave me her lullaby when we were in the NICU, before we ever learned all she’d undergo or how intense the first year of her life would be, or even before we knew she didn’t have calcifications in her brain.
My little Avery
just so small and sweet
you are so dear to me
my precious Avery
You will overcome
all that was undone,
And may the Lord be true
and bring new faith through you
He’s done exactly as I asked and he told me through song that He would. She’ll always have little tale-tale signs of her unique makeup, like her eyes and the one crease on her left hand, but maybe those are so she can share the story of how God healed her and made her whole so that she can plant many many seeds of faith for Him.
So now my emotions are just coming to terms with looking at Avery as “normal” and not thinking of her as special. She’s been so special for such a long time now, and has had to be treated as delicate, that it’s hard, but I don’t want to set her back or expect less of her or overcompensate for her when she has every possibility of doing more than I ever imagined she’d be able to do. So the new normal is thinking of my baby as a perfectly normal baby girl, like most parents expect their babies to be, with just a little bit of an interesting history behind her 🙂
This little girl is trying so hard to become mobile. She rolls around and then checks out her surroundings.
Avery playing the piano: (about half way through the video Aria takes the phone off of me, so stop watching if you get motion sickness!)