On the most positive note, at the end of January, we added baby Beatrix to our family. After nine long, anxiety-filled months of endless monitoring and doctors appointments, she came into the world by a scheduled cesearean, screaming at the top of her lungs to announce her arrival. We couldn’t have been happier to hear the cries of a very healthy baby who is as perfect as her big brother. Solly loves Bea and is always fascinated by her toes, her fuzzy head, and whatever she’s doing. I can’t wait to watch these two grow up together.
On a more frustrating note, while Solly continues to improve and defy his given prognosis, his advancements in physical therapy and gross motor skills have seemingly ground to a halt. His sitting and quad positions have improved in strength quite a bit, however, his legs have grown stiffer despite increased medications, fancy ankle-foot orthotics, and following all doctors orders. This makes it hard for us to help him through transitions and makes it impossible for him to practice walking, even in his gait trainer.
So, as Bea came bouncing into the world, we decided that we needed to try something(s) different in 2017 – hence, the year of change. We are going to focus on alternative therapies and procedures and consult with new doctors and practitioners to help our Solly continue to break out of the cocoon that cerebral palsy has encased him in. We’ve already gotten started in our new direction, and I hope to document these new activities here as well as our thoughts along the way for anyone who’s following our journey. There are likely to be more ups and downs this year, but moving in a new direction instills in us a new sense of hope for Sol the Man.
Solly meets Bea with the help of Nana and Papa
Solly, Bea, and Mama
Working on that sitting stuff – note posture and holding on with two hands!
I’ve been struggling lately. Struggling with worry and anxiety. Letting the what if’s back into my head after they’ve been gone for so long. I worry about Solly not making any more /enough progress, about what will happen if and when we decide to let him start nursery school, what will happen if he never walks or talks or learns how to take care of himself independently. If he doesn’t learn how to walk on his own, will we have to move to a more accommodating house? If he doesn’t talk or can never coordinate his hands with what he’s thinking, can he learn sign language? How will he communicate? There are so many unknown variables in his life that sometimes I just can’t process them all.
Over the past few months, I’ve been spending more time on Facebook support groups, trying to research what others are doing to help their children keep progressing. I’ve come up with a number of new things for Solly to try, but I also see other children making so much great progress that I start getting down on myself for not doing enough for Sol. Maybe if we do more therapy at home, if we found more hours in the day to work with him, he’d learn to use his right hand or he’d be able to walk independently using a gait trainer. Maybe he’d start talking. Every night, I wake up in the wee hours of the morning with all of these worries running through my head.
But then, as I worry and worry, I start to think back to his time in the NICU. The night after Sol was admitted to the NICU, doctors told us that if he even survived his strokes, he wouldn’t be able to hear, see, eat by mouth, walk, or talk, he’d essentially live his life in a vegetative state. I think about what his MRI looks like – three huge areas of his brain consumed by a daunting black nothing. And then I realize that Sol has already defied so many odds. He’s far from a vegetative state. He’s mobile with his army crawl. He eats by mouth – heck, he even feeds himself and has started drinking from a straw on occasion. He communicates with a nod for yes and a head shake for no. Over the summer, he started sitting independently to play with toys and is well on his way to making an independent transition from his tummy to sitting. And, most importantly of all, he’s loved, he knows he’s loved, and he knows how to show that he loves back. Not to mention that he is a unicorn of children: he is THE most good natured two-year-old I have ever met. And I’m not just saying that because I’m his Mom. He really is! I am one lucky Mama.
I write this post not to garner any pity or to try and get any reassurance about how well Sol is doing. I KNOW he’s doing amazing things and I’m pretty sure that we’ll continue to see gains in areas, even if they are small and unexpected. (And speaking of which, I promise that I will get back to Solly updates soon. As soon as I quit worrying so much, I hope to get back to writing. Although we haven’t hit any major milestones recently, we do have much to tell!) I write this because I know other special needs parents go through the exact same worries and sleepless nights that I do. In fact, one of my good friends who has a stroke warrior that is doing amazing things recently posted similar worries on Facebook, which prompted me to write down my own thoughts. These fears and worries are a part of every special needs parents life, and unless you have a child with extraordinary needs, it’s really hard to completely understand the worry that comes along with this type of parenting. But, for any special needs parent reading this post, know this: you aren’t alone. I get what you’re going though – I really do, and so do so many others. My advice to you is to live in the moment. Focus on daily smiles and victories. Try really hard to think about the good stuff and all the barriers your child has overcome. You might just realize that things don’t look as bad as you initially thought and no matter what the future holds, you will get through that uncertain future and make it your own. I promise you – it will be ok.
One of the things I’ve heard so many special needs parents say about their kiddos is that they now have a deeper appreciation in life. When I first heard this, I didn’t get it, but in recent days, I’ve found this sentiment to be true. I find that I no longer fret over the petty, silly stuff of life. Things that used to be such a big deal just aren’t any more. Now, life is all about laughter and finding our happy – and that makes for a pretty good life.
And because no post is complete without pictures, here’s a glimpse into our life lately:
In my past life, I remember when I would have a bad day in business school or at work, my best friend Jenn would send me this:
In the months since I last posted, we have subconsciously applied this attitude to Solly’s rehabilitation. We’ve learned to take everything in stride, focusing on solutions for his recovery and not the fact that he needs to recover. Ok, ok, I admit it, sometimes I still freak out and over-worry about something related to his recovery. And when I say sometimes, I mean like once a week, which is a huge improvement over 6 months ago. But, for the most part, we focus on moving forward, no matter how slowly.
I think when I started this blog, I envisioned a Cinderella story, one in which the fact that a stroke took away half of Sol’s healthy brain tissue would not matter – he would recover to lead a productive, “normal” (I still hate that word!) life. And, he very well may. I think he will. I don’t have any bad news that would suggest otherwise. I just think that I was expecting progress and recovery to happen much quicker than it is and because I never had any huge milestones to share, I didn’t bother updating the blog.
Silly me.
So. Here’s what’s going on: Solly isn’t sitting entirely independently, he isn’t close to walking, he still isn’t using his right hand, we are still struggling with eating, he doesn’t have any words yet….basically, we are still pretty far behind in all developmental areas. That’s the unsugarcoated version of life right now.
However, we are seeing progress in all areas. In sitting, there are moments of brilliance where he is sitting up perfectly straight on his own for a few seconds before either his back extensor muscles kick into overdrive or his abs collapse. This is a big improvement over a couple of months ago. We’ve been working on walking in a gait trainer, a slow process, but he will now occasionally take reciprocal steps. We will be getting a gait trainer to work on this at home. We’ve tried some new things with his right hand, including e-stimulation, and are noticing that he is paying more attention to it and is trying to incorporate it when he eats. On eating, he is now eating three small meals a day, tolerating about 5 different types of food, and still getting the majority of his calories from Pediasure, fed by bottle. He is making strides on both an open cup and a sippy cup. For speech, just last week we had a speech evaluation and while we found out that he is behind in speech (duh!), the therapist had some great ideas on how to help him communicate. We are now on the therapist’s short waiting list to start seeing her twice a week.
So this is where we are at. We are moving forward at a snail’s pace, but at least we are moving forward! One step at a time.
Working on standing at my toy bin (Completely unrelated to this post!)
The other day, someone’s words completely devastated me.
Here’s how the conversation went:
SCENE: Walgreens
SETTING: Standing in line at the cash register. I have Solly on my left hip and am dancing and singing with him to whatever music is playing while balancing my purchases on my right hip. As I get closer to the front of the line, the cashier starts commenting on how cute Solly is. And then, as she starts ringing up our items…
Cashier: “Is he going to be artistic?” (Note: this is what I heard. It may not have been accurate.)
Me: “I think so.” (With a smile, thinking about how the creative side of Sol’s brain is far less affected.)
Cashier: “He reminds me of my grandson. He’s artistic, nonverbal – never said a word in his life.” (This is when I start thinking: shoot, I totally misunderstood her. She said autistic.)
Me: “Oh, well, Solly has cerebral palsy…”
Cashier: “So does my grandson. He lives in a special home.”
That was the gist of the conversation. I smiled politely as she told me a little more about her grandson and thanked her as we left. Admittedly, it took a little while for the shock to set in and it took even longer for me to realize exactly why this conversation made me feel like someone had knocked the wind out of me. After texting with two other Moms of stroke survivors (also known as my support team), I figured out why it bothered me so much. She had labeled my son after observing him for less than a minute. Because he was interested in the lights, because he is 19 months old and unable to stand or walk, because he does not yet speak, he reminded her of his grandson who has cerebral palsy, is autistic and nonverbal, and lives in a home. She made a snap judgment and shared it with me, making me drastically rethink what Sol’s future held for him.
Here’s the thing: if that is how Solly’s life turns out, so be it. We will figure out how to live with that type of conclusion.
However, keeping that kind of ending in my mind completely removes all the steam I have in my engine, the steam that keeps me getting up each morning and taking Solly to therapy, urging his brain to continue to make new connections. My goal for Solly is, one and most importantly, for him to feel loved and be happy, but, two, I also want him to live as productive a life as he can. And in a short conversation, that woman took away all of the hope I have for my son. I’m sure she thought she was being helpful and was just making polite conversation, but ever since I had this conversation with her, I haven’t been able to think of his future in the positive way that I usually do. It is amazing how someone’s words can affect you so deeply.
Here’s the thing I realize after reflecting on this brief moment: we are so quick to label each other based on short observations. We may share those labels with the other person as that woman did with me, we may share it with others, or we may keep it to ourselves. Labelling anyone without living in their shoes is something that most certainly should not be done, and especially shouldn’t be shared. She has no clue as to any of Sol’s background, how hard he works at therapy, how smart he is.
Nobody knows how any part of life will turn out for anyone. The most we should say to one another is words of encouragement, and instead of labeling each other with the worst case scenario, label each other with goodness, purpose, and promise, and nothing else.
Today marks the beginning of our fifth month in Nashville. Four months down and we are finally getting into the swing of things with our therapy schedule. We have 6 weekly therapy appointments: 3 physical therapy (with two different therapists), 1 occupational therapy, 1 feeding therapy, and 1 developmental therapy. We are also being followed by a vision therapist and developmental optometrist every 3 months. Needless to say, combining therapy with our regular doctor and specialist appointments, we are on a strict schedule and are very tired at night!
That being said, every second we spend with therapists, doctors, and on the road to appointments is worth it. We’ve seen lots of tiny developments in all areas that are beginning to add up into bigger gains.
Pudding is so yummy!
Quite literally, Solly is gaining weight! I wrote quite a bit last year about his stressful weight plateau and how we weren’t given any answers or solutions. Apparently, a weekly session with a feeding therapist is all we needed. Now, feeding is no piece of cake – I suspect Sol has some sensory issues that are contributing to this – however, he is consistently eating three small meals a day and drinking three bottles. He’s even trying a bit of table food, with french fries, chocolate pudding, and pancakes now his favorite foods. It might not sound like much, but this is a huge victory for us. More importantly, Sol has put on at least 4 pounds since we’ve lived down South, moving up in size from 9 month clothing to 18 month.
Another major gain has been learning to use his right arm. Many of our goals in OT include a stronger and engaged right side, so this has been much of our focus in our weekly sessions. When we moved to Nashville, Sol wasn’t sure how to engage his right arm or hand at all, so it typically hung at his side at all times. Now, he’s not only raising his right arm to give a fisted high five, but he’s also raising it to bat at toys. Take a look:
We hope to start some version of CIMT (Constraint-Induced Movement Therapy) this year to continue to increase the use of his right arm and hand.
When it comes to gross motor skills, Sol has made the most gains. Our therapists have added some new tools to our toolbox, which have made quite the different in his tone, strength, and skills.
Sitting up tall
For sitting, we purchased a GoTo Seat, which supports Sol enough to sit independently. While it does not make his trunk stronger (which is what we really need!), it gives him a feeling of confidence and independence to sit and play with toys alone. This paired with trunk strengthening activities in PT have made him much stronger. He’s now sitting independently using an arm to prop himself up and can now sit in a grocery cart all by himself, which he loves!
Stander time
We’re also starting to use a stander. A stander is exactly what it sounds like: it helps kiddos stand. Independent standing helps with developing hip joints, bone density and leg strength, but for kids with CP who are delayed in this milestone, like Solly, there is a risk of hip dysplasia and other impairments. Luckily, a stander will help Sol develop strength, density, and proper alignment, and it will also help decrease muscle tone. While we’ve ordered our own, we are still waiting for insurance to approve its necessity. Fortunately, United Cerebral Palsy of Middle Tennessee has a neat program called the Equipment Exchange that loans out used equipment, and we were able to borrow a stander from them. Sol now spends about 40 minutes a day playing in it.
Moving right along
Most 15 month old children are up and walking on their own. While we are working on each milestone in chronological order, we also try and expose Sol to things typical 15 month olds are doing. Since he isn’t strong enough to walk on his own yet, we’ve begun teaching him how to walk using a gait trainer. It is similar to a walker, but it also includes lots of ways to support his weak trunk. At least once a week, we get Sol into a gait trainer and go through the motions of getting his legs through a reciprocal movement. He doesn’t quite have the hang of it yet, but he will try to move one leg forward a couple of times each session.
Finally, and most exciting, is seeing all of Sol’s hard work come to fruition. Last weekend, we watched as he figured out how to put one arm in front of the other and pull his body forward completely independently. There is no better feeling than watching him learn a new skill and then run with it! Here is Solly’s version of an army crawl:
Sol the Man 