Faith through failure

I'm a never give up type of person and I am trying to teach my children to have perseverance. That's not to say that I don't let them fail – I believe there is a lot to be learned from failing. And in some respects failing and perseverance go hand in hand.

So after six years of conversations and trying new things and retrying old things and working with doctors, a nutritionist and a feeding therapist and Brett still not gaining enough weight it felt like a crushing defeat in October when his doctor said it's time for a feeding tube and I had nothing left to battle with - just tears.

Brett's cerebral palsy impacts his muscles. For him the tongue and jaw are part of that. So eating and drinking that come so naturally to most have been a lot of work for Brett. He has done great and come so far. But the spastic part of his cerebral palsy also means that his body moves involuntarily - all day long. So all the hard work expended to eat burns the little calories he consumes and then his body just works and works burning even more.

I have talked to my friend who has worked with children with CP and feeding tubes, I have talked with a mom and nurse whose child had a feeding tube. I have listened as therapists have assured me that time and again parents always wish they had done it sooner.

It is a strange place to be - caught between logically knowing that you have done everything you could and you are making the right decision and having it compete so strongly with the emotional response that screams NO! Try harder. Do more.

It is that side of me that remembers praying and begging and coaxing a 4 lb baby to take the smallest amounts of milk so he could come home from the hospital. We celebrated 13 long days later when the overnight nurse said he had done it and he did it for me again that day. It's the side of me that sat with special tools stimulating different parts of his mouth to build strength. It's the side of me that has sat face to face with this boy for six years slowly feeding him and praising when he drank one more ounce or ate just one more spoonful. The side that wants to high five everyone when Grandma or one of his aunties announces he ate beyond his usual amounts or actually ate something new. The side that delighted when we finally found a new food he could process and liked that was good for him and might add meat to his bones – like peanut butter on crackers. Together with Tate and our family – Brett's pit crew – so many of us have given time, heart and soul to the pursuit of packing on the pounds.

The feeding tube has been brought up many times. My argument when doctors would say "failure to thrive" was that he was thriving – he is thriving. Despite the work and the struggles – He. Is. Thriving.

But he is getting so tall and the rest of him isn't keeping up. He is in the 50th percentile for height on the CP chart and barely makes it on the chart for weight. I believe there is a difference between failure to thrive and failure to grow. But, that’s just semantics. Either way it feels like failure.

We had a family weekend away this summer and Peyton was enjoying taking pictures with my phone. I was so startled when weeks later a picture of Brett lying on the bed with his shirt off popped up on my computer screen. He looked skeletal. It scared me.

So here I am trapped between taking a faithful step forward toward what feels equal parts right and wrong – relief mixed with defeat.

After all the wrestling with logic and emotion – no matter how much research I do and how many prayers I send up – I know it is time. I know that sometimes failure and defeat can lead to good, productive, life changing places.

My prayer is that all the words of encouragement I have received will one day prompt a post that does say - 'I wish we had done it sooner.'

I pray that Brett will grow stronger and have the ability to do or try more. I pray that Brett getting regular doses of his medications through the tube will result in him feeling better more consistently. I pray that it will result in the removal of mealtime struggles and stresses replaced with time to play and more joy.

I pray and trust that six years of effort only to end up in the same place will results in something better than what I can imagine

I pray for the day I will say what looked like failure ended up as victory.

What I want you to know about CP

Today, Oct. 1, is World Cerebral Palsy Day. This year I decided to write about some things about cerebral palsy that I wish more people knew, understood or thought about. It's been quite an education for us and I try to pass along what I know to others so they can be more understanding.

Cerebral Palsy is like snowflakes - no two are the same.
I still have to remind myself of this one from time to time. It's so easy to get caught up comparing Brett to others with the same diagnosis.  Some cases are very mild and barely noticeable - a hitch in their walk or a slight curling of a hand. It can impact just one side of the body, just the upper half, just the lower portion or all of the body. It also has varying degrees of severity. Brett's effects all four limbs. He also has spasticity - meaning his muscles spasm involuntarily. So his type of CP is considered spastic quad and his is severe. (see infographic below)

How is it treated?
There is no cure for CP ... yet. CP is essentially a brain injury. What can be done at this point is controlling the symptoms through medications, therapies and surgeries. Through repetition of tasks -improving muscle memory and motor planning - Brett has progressed in a lot of areas. Medications help relieve some of the spasticity taking away some of the pain and controlling movement.

How do I interact with someone with CP?
Just like you would anyone else. Don't be afraid and above all - assume intelligence. Though CP is a brain injury, for many it only impacts the way their body moves and operates. Their thoughts and intelligence are fully intact. Yes, there can be people with CP who also have intellectual disabilities or delays. But assume they know as much (if not more) than others their age until you learn otherwise.

If you don't know - ask
Kids are great about this. They will blurt out all kinds of questions because they are curious. I wish we as adults were more like that. I never mind a respectful question. Even if it's clumsy I still appreciate it if asked from a place of kindness. What's your diagnosis? Are you able to ...? Can I help you with...? What is that like? If you have a question ask it here in the comments. I'll do my best to answer.

They don't need pity
I get it. Your heart aches to see another person struggle or in pain. But there is a difference between compassion and sympathy. Brett's life is hard, but it's not sad. It can be frustrating for him, but so can life for anyone. People have asked me if it makes me sad. It doesn't. Yes, sometimes I grieve. I grieve when Brett is surrounded by kids and they are running and he is left behind. I grieve when his disability doesn't allow him to do something he would love - like go on a roller coaster - and I can't work out a way to even the playing field for him. But on a regular basis there is no sorrow. Brett is such a funny, happy boy. He is good at so many things and is surrounded by people who fiercely love and advocate for him. Don't assume someone's life is not good because they have CP or another disability.

Ask first before helping
This is my biggest struggle as a parent. I help all of my boys too much. Tying shoes when they can themselves. Opening snacks when they are perfectly capable. There is a lot Brett needs help with but don't assume he wants you to do it for him. I see it most when he is struggling to use his communication device. I want to jump in and help and make his life easier. But if I ask or his therapist says "can I help?" Nine times out of 10 his answer is 'no.' If he could say it I swear he would shout "I can do it myself!" even when he can't he would rather try and continue to fail than have someone else do it. There is a difference between helping someone and doing it for them. Ask first and respect their answer.

Here is an info graphic from last year I found helpful:

Brett's Motor type is mixed, quadriplegia, GMFCS level V progressing toward level IV.

I have something to say

Several weeks ago as we were leaving Grandma & Granddad's house Granddad gave Brett a kiss on the forehead and said "I love you, buddy."

And Brett responded "I love you too." 

I was holding him and almost dropped him. Tears sprang to my eyes and I looked at Granddad – he had heard it too! A miracle moment.

Part of Brett's Cerebral Palsy diagnosis is that he is "non-verbal." Mostly he lacks the trunk strength and coordination to do a lot of the breathing involved with talking. Lately he is making a lot of sounds. Trying to communicate with his words, but we often can't understand him.

He has some words he uses regularly. He will answer "ya" responding to some questions. He can say "Momma" and "Daddy" – and I assure you there are few sweeter sounds. He often calls "out" or "all done" from his bed in the morning (sometimes around 4 or 5 a.m.) and he often says "I like it" with varying degrees of clarity. Sometimes we will hear a word or phrase, like "I love you too" as clear as day and then not hear it again for months or ever.

Brett can't use his voice to tell you he's hungry and when he's crying he isn't able to use his voice to tell us things like "my tummy hurts" or "my leg braces are bothering me" or "this shirt is scratchy." There are times when he desperately wants me to know something and I can't figure it out and he is frustrated to tears and I've been in tears while my heart aches to know what he wants to tell me and the world.

So we aren't ok with Brett not having a voice.

I often tell people "just because he can't speak does not mean he doesn't have anything to say." Unfortunately, people correlate his lack of language for a lack of intelligence. In Brett's case he completely comprehends what you say and what's going on around him. He knows his numbers and letters, letter sounds and sight words just like other kindergarten students. But communicating all of that is a challenge – for Brett and for those he wants to communicate with.

Since Brett was little we have introduced a variety of methods for Brett to "speak" or participate in conversation. I am grateful for my friend Jana whose background as a speech pathologist opened my eyes early to the options and assured me he wasn't too young to give them a try.

Brett has a Big Mac switch and some smaller block switches. They are essentially buttons you can use to record single messages and he can activate the switch to speak. He has used them to tell people happy birthday, say trick or treat on Halloween, to bring home messages about what he did at school and to help read a line from a book. He has a switch that allows up to three messages and is most often used for him to participate in our bedtime routine to say Amen after a prayer and then goodnight to his brothers. He uses some basic body language to communicate. A thumbs up for yes and arms/hands crossed for no.

Since Brett was three he has been working with several AAC devices. He uses a PODD book, which uses a series of Boardmaker pictures to give him choices of things to say. He also uses a communication device - a computer that allows him choices of things to say. 

Progress is slow. 

Because of his physical issues Brett doesn't yet have the accuracy to quickly touch a screen to say what he wants. So he has two switches or buttons. One at his elbow and one by his hand. He uses his elbow and a little speaker by his head to listen to the choices of what he wants to say and when he gets to the right one he presses another switch with his hand to make the device say it. Sometimes, especially when he is excited, his body gets away from him and his elbow will hit the switch going right past what he wanted to say. It can sometimes take up to five minutes for him to communicate a single thought. It can be both mentally and physically exhausting for him and a test of patience for the person he is communicating with. But he has made a lot of progress and does a great job with it when he is motivated to say something. We are waiting to hear whether insurance will approve a new more dynamic device for him to use as his old one is outdated and doesn't offer enough options for him.

Brett had another breakthrough a few weeks ago at assistive tech therapy when he used his device and a PODD to ask a question about something that was going on in the hallway. It was the first time he initiated a question and we were so excited!

I tell you all of this for several reasons: 1. To offer a better glimpse into Brett and how he communicates. 2. To encourage others to investigate the many communication options. 

May is Better Speech & Hearing month. If you know someone with a young child who is concerned about their speech or hearing please encourage them to visit identifythesigns.org – there is so much today that is treatable and so many solutions available.

It also doesn't have to be a child. These communication options can be used at any age and are being used by adults with ALS, dementia and a variety of diagnosis. 

My career is in communications and I can't imagine not having the opportunity to say what is on your mind. I look forward to the day when Brett's abilities and the technology come together to the point where he can say anything he wants to anyone who will listen.

Until then we will celebrate all the special moments. I asked each of the boys to record a Mother's Day message to Grammy who lives out of state. On Brett's turn I set him on the couch and told him when I started the video he needed to say "Happy Mother's Day" to Grammy. I was expecting him to use his Big Mack switch. Listen closely to the beginning of the video - amazing!

Casting, braces and Botox

Brett has the cutest feet. 

I am not a foot person. When I have had the opportunity to get a pedicure I’ve always whispered a prayer of thanks that they are willing to do that job. I’m cringing thinking about it as I write.

In several respects Brett would make many dancers jealous. His toes are perpetually pointed with a beautiful arch. My dancer days are a distant memory, but we did exercises and all manner of hard work to get what he has. He also has scissoring legs. Not great for every day use, but if you lift him off his feet when he is excited he rivals every ballet dancer I’ve ever seen doing an entrechat where the legs criss cross rapidly in the air.

But, alas, he is not trying out for Swan Lake at the moment so the toe pointing and leg scissoring are a challenge. Most of it comes from the high tone in his legs.

So, shortly after the start of school Brett underwent serial casting. The idea was that he would be casted in a foot flexed position. Every two weeks new casts would be done and the flexion would increase. I waited until summer was over and he was in the swing of things at school. But just as he got his casts on we had a heat wave of 100+ temps. I’m sure he was sweating in them, but he fussed the first day/night a bit and then never again complained. 

To our surprise he was only casted once. The orthopedist said in the one casting he had gained as much flexion as we could expect. I could tell the difference immediately. This has helped with his walking and leg positioning. It also helped him with his new AFO (ankle, foot orthotics) or leg braces that he wears daily. He had trouble with his last pair because his strong arch was pulling his foot out of them and making them uncomfortable for him to wear. He cannot work on walking flat footed without the braces. So after he came out of the casts he was able to get new braces as well.

Shortly after that he was on to the next thing – Botox injections. I know! I remember hearing about it from another parent when Brett was small and being somewhat horrified. But I asked around and did research and after quite a bit of hesitation on my part decided he should give it a try. They gave him two ultrasound guided injections in the abductor muscles in both legs. The idea is to loosen up the muscles so he isn’t too tight. Part of Brett’s spastic quad CP means that his muscles are as tight as drums. Medications help some, but as he grows the spasticity becomes more intense. To offer some examples sometimes he is so tight when he is on his back on the floor I can’t bend his knee or hip flexor to bring his leg toward his chest or do bicycle motions. Some days I cannot get him to bend at the waist to seat him in his wheelchair or his car seat. He is like an unbendable plank. He has always had this issue, but when he was tiny it was easier to maneuver him into the positions. Now that he is almost 4 feet tall and strong as an ox it is very challenging and sometimes dangerous to hold and position him at the same time.

I was really skeptical. But it worked. 

He was able to relax enough to be able to do things he never could before. At Halloween he sat on a stair unaided and showed off his pumpkin. Besides being adorable he was able to sit unaided because his body was relaxed. You might also notice his bare feet are flat on the floor!

He has always been able to sit criss cross apple sauce on the floor for seconds at a time. After the Botox I positioned him in criss cross during Sunday school and there he sat for almost 15 minutes. Righting his body when needing to and only tipping over when he lost his balance. He was better able to pull his legs forward in assisted walking. A bonus was that he was using his hands so much better. Because he wasn’t working so hard on his legs he could focus on other areas. He was holding his spoon, opening drawers and really perfected isolating his pointer finger for use on the iPad. His thumbs up indicating “yes” became more pronounced. He was able to work on a new sign for “no” crossing his hands.

And then it was gone. I could tell you to the day when it had fully worn off just before Christmas. I was fighting his body to get him in his car seat and was thinking – why is this so hard? And then I realized.

He is able to tell me that his muscles hurt more now that the Botox has worn off. It’s like in the cartoons when someone is granted a wish or turned into something, but then the magic wears off and they are back to themselves. The magic has worn off.

But the good news outweighs the bad news. 

The good news is that he has retained some of the skills – the thumbs up and pointer finger are so good and I assure you the “no” is here to stay. Though he can’t maintain it as long, his independent sitting in criss cross applesauce is better.

Though he can get the injections every three months the only doctor I trust to do it is on medical leave so it will be awhile before he gets it again.

The bad news is that eventually it will stop working. For most, as if there is an immunity built up, he will someday no longer respond to the treatment. I don’t know when that will be so for now we are hanging on to the good stuff.

For those of you who don’t have children with physical disabilities I know this all seems strange. Sometimes having a child with special needs can make me feel like we are living part of our lives in an alternate universe and – in a way – we are. Casting and Botox on a five year old would have seemed strange and admittedly may have seemed  a little bit like torture if I didn’t live in this world.

But from where we live I am adding both serial casting and Botox to my list of Bizarre Things I am Thankful For.