Our Story: 2 years after a baby stroke

2 years ago, I imagined my baby might still be learning how to walk.

2 years ago, I wondered if he would be able to eat solid foods by now.

2 years ago, I wondered if he would ever be able to verbally speak.

2 years ago, I was devastated that my baby suffered a stroke.

Today, I often wonder how this stroke may actually have made me a better mother.

Today, I feel grateful for everything my son can do, but I feel blessed by the person he has become.

The devastation of yesterday has been replaced by the joys of today. It wasn't an easy road. It took a lot of hard, dedicated work to make it through that difficult time. 

Some of the progress is providential. Some of the progress was a lot fortunate circumstances coming together. Yet I know that we were fortunate to find treatment techniques that worked for my son. However, those techniques would not have worked if both my son and I did not dedicate ourselves to progress.

There are still things we need to work on.  He still needs to increase his chewing abilities, he still can't drink water, there seems to be some possible speech apraxia, he appears to have mild to moderate sensory issues, and possible auditory processing issues.  Recently, we found that he has not gained weight for 14 months, despite growing over 10 inches.  Considering the depth of issues I was expecting, these problems don't seem insurmountable.  

Yet sometimes I still feel overwhelmed.  There are so many therapies I want to try, equipment I want to buy, and techniques I want to improve.  So often I see everything I'm not doing and none of the things I'm doing seems to be enough.  I think that I'm probably not the only mother who feels this way, but it's hard for a perfectionistic super achiever like me.  It's hard to accept my limitations and see the things we are achieving. 

Baba really enjoys exploring new places, visiting his favorite buddy, figuring out new toys, trying to imitate new words, and playing peekaboo.  He is learning to read, sing a variety of songs, and dealing with his emotions.  He amazes me everyday!  

We went to the children's museum with my mom and brother last week.  At some point I gave him some rice crackers for snack.  We were sitting next to my mom who just ate something else.  We ate a few crackers in silence and then after taking a bite of his cracker, he silently gave my mother his cracker.  She smiled and thanked him.  He shyly smiled and took another cracker.  It seemed so natural and yet it was so heartwarming that he thought of her, when he barely knew her.  She hasn't been available because of chemotherapy and then our moving away, yet she felt the warmth of her only grandson's heart.

This is just the beginning.  Our journey is far from over, so I must continue to remind myself that it's a marathon, not a sprint.  It's not about how fast I can get everything done, it's how much we can enjoy the process of living and learning how to live with the things we are given.

Therapy Secrets: Wilbarger Deep Pressure and Proprioceptice Technique-An Update

Baby to Tot

We tried implementing the Wilbarger Deep Pressure and Proprioceptive Technique, but another flare of eczema has foiled our plans again.  This time we made it for a week and the results were fantastic!  He was really eating, trying new things, and being more social.  However, when the eczema really started to flare, he was very upset by the brushing and I couldn't blame him.  We tried going around the irritated skin, but we ran out of skin realty.

Our new plan is to try to get rid of the eczema.  We have already gone on a whole foods diet, but we are going to go organic.  It's amazing how much food affects our bodies, especially when your body is sensitive.  So we're getting rid of all GMO products and making our food choices organic.  Hopefully, this will improve the eczema and we can try again.

Creating a masterpiece is fun!

 Of course, the winter dry weather is not helping the situation.  We lather lotion 3-4 times a day, but it's still dry.  I have a vaporizer adding moisture to our home air and we are careful with his clothes, but it's still dry.  The eczema is much better, since we stopped brushing.  So we have the confirmation that the brushing irritates the skin, though we didn't really need that confirmed.

We have implemented a sensory diet, which is part of the program, with good results.  Baba is definitely more amiable to trying new things and he is more tolerant of crowds and new places.  I have a separate post on how to implement a sensory diet in the works.

It's really great to see how my son is growing and exploring his world.  He is a happy, curious, loving boy who is beating the odds against all my previous assumptions about babies who suffer a stroke!  We still have work to do, but most of the time, we are enjoying our growing, maturing relationship. 

How funny!

He is going to be 2 soon!  I feel like he's officially not a baby and I feel a little sad about it.  Not that I want him to stay a baby, I just miss the baby cuteness.  I'm a little scared about the terrible twos, but I think we will figure this out...the little guy and me.  I hope!

Our Story: 22 months after a Baby Stroke

"This is how I roll"

It's been a while since I've written or even read blogs.  I have been sick and on survival mode.  It's difficult being sick for a prolonged period of time and still having someone completely dependent on you for survival.  I guess that's why I wondered if I could be successful as a mother.  I am blessed with a wonderful supportive sister who is helping me take care of my baby.  I don't know how I could do this without her.  I definitely don't want to find out.

Baba has been sick too. He had Toxic Synovitis of his right hip, a cold, and the Norovirus right after.  He has been quite the trooper and I'm impressed with his ability to endure discomfort and pain.

Despite these illnesses, he continues to grow and develop into a smart and loving boy.  He is talking more though he still has trouble saying the words on his command.  Most likely he is having motor apraxia, which I also see in his fine and gross motor skills, though much milder. 

His cognitive skills are flourishing and I'm constantly amazed by what he knows.  He can sing the alphabet song and Twinkle, Twinkle, Little Star with some word substitutions.  Aren't toddlers adorable when they sing?  He is also starting to read.  I know that sounds crazy, but it's true.  It's amazing and worrisome at the same time. 

Thinking before acting

I feel terrible because I haven't been able to provide the therapy that he needs.  I need to implement "The Wilbarger Protocol", start oral motor therapy, increase "Sensory Integration Treatment", and implement a sensory diet.  Yet everything is on hold while I recover from the worst Fibromyalgia flare up I've had in 2 years. 

It's hard not to worry that I'm missing the window to affect his brain most effectively.  We're almost at the 2 year mark.  Not only is his brain very plastic in the first two years, stroke victims generally make the most improvement in the first two years after the stroke.  It's not that they don't continue to improve, but the first two years are the most dramatic.  Of course, that's based on adult stroke victims. 

There is a lot less information on baby stroke victims.  The amazing progress I have seen with Baba is beyond all my hopes already, but he still has difficulties to overcome.  He still displays a positive Babinski Reflex, a sign that his brain has not fully healed and integrated his reflexes.  This may be the reason he is displaying motor apraxia, difficulty coordinating the muscles to complete motor actions.  This is affecting his ability to eat, learn new motor actions, balance when not focusing on his balance, and increasing his height insecurity. 

He is also hypersensitive to touch, environmental sounds, and taste.  These hypersensitivities affect his ability to enjoy public outings, social gatherings, and any new environments he may encounter.  This in turn affects his social skills, his willingness to explore new environments and situations, and eventually his success in school. 

More complex emotions

I am so grateful for the progress we've made so far.  He is doing so well.  We are so fortunate.  Yet as a parent, I can't help wanting to do all I can to make his life easier.  I want to do everything in my power to help him, but my own illness makes me feel powerless.  I can't push myself because I only end up making myself sicker, longer.  It's frustrating to have the tools and be helpless in using them.  Maybe it's as frustrating as having the power, but lacking the tools.  Neither is a great place to be.

I'm glad to have this place to air my feelings!  I didn't even know what I was really feeling!  I just felt overwhelmed, frustrated, and depressed.  Being a parent is definitely the hardest job I've ever had!

Someone recently said that they were impressed by my dedication to being a mother.  She's a wonderful mother herself, so I wondered what she really meant.  What made me more dedicated than an already dedicated mother? 

Ready to explore the outside

I think it's something all mothers of special needs children share.  We have a drive to help our children.  We need to dedicate more of our time because  our children have needs that require extra attention and dedication.  It's not that mothers of typical children aren't dedicated, for they certainly are, but special needs mothers also  need  to carve out time looking for resources that aren't always available, taking extra time to care for extra physical or emotional needs, and providing therapy.

I was also profoundly affected by seeing my child in the NICU.  My heart broke when I saw my precious baby hooked to a thousand wires, looking helpless, and alone.  It stirred strong emotions that still haunt me today.  It's the image that pushes me to do more and be more for my child.

I am sure I would have been a dedicated mother regardless of my baby's health, but I know that my baby's stroke changed me forever.  I know I'm not the only one who feels that way.  I know there are legions of mothers who are going through the same thing.  I hope that it has more positive effects than negative ones.  I hope everyone finds some peace after such a traumatic experience. 

Our Story: 18 months after a baby stroke

The Scary News

The ENT (Ear-nose-throat doctor) wants to do a Modified Barium Swallow study.  He wants to rule out aspiration (food going down to the lungs).  I thought Baba would be showing signs that he was aspirating (ie. coughing, wet sounding gurgle, aspiration pneumonia, etc.), but the ENT says that he could be aspirating silently.  It's so crazy.  I was worried that he wasn't eating enough, but now I'm worried about feeding him.

Somewhere in the back of my mind, I was worried about his swallowing.  I mentioned it to everyone I met.  I finally met a specialist who gave credence to my fear.  I guess it's a good thing.  Yet it scares me.  What if his lungs are already damaged?  Will they heal?

After the swallowing test, he wants to put him under anesthesia and check his hearing.  He kept saying, "on the operating table".  All I could see was flashbacks of my son in the NICU with wires coming out of every limb.  I started having a panic attack.  As if my head was bobbing in and out of water, I kept struggling to breath, hear, and speak. 

I had so many questions.  Do we have to test the hearing now?  Couldn't we wait till he could tolerate the test without needing to put him under?  What are the risks for this procedure?  Are there alternatives?

I didn't ask any questions.  I stood, dumbly staring into space, trying not to have a complete breakdown. I kept seeing my son "on the operating table" with wires coming off of his head, his nose, and his mouth.  His tiny body surrounded by big people hiding their humanity in white gowns, latex gloves, and masks.  Do we really have to do this?  Will I see my son again?

A part of me realizes the chances of something going really wrong is a tiny percentage.  Yet, I can't help wondering if it will.  A baby has a 1 in 2000 or 0.05% chance of suffering a stroke at birth.  I believe the chances of something going really wrong on the operating table are higher.  I don't like percentages.  I was never a gambler.

Yet I know that knowing what hearing problems my son is having will have a significant impact on his speech and language, his emotional development, and his social skills.  Starting treatment early will definitely impact positively on his life.  It will definitely help him get the help he needs.  Yet a part of me wishes I could delay the testing.  I wish I could prevent another stay in the hospital.

The Good News

On the other hand, Baba is talking more.  He is more willing to say new words and he's started to sing the alphabet to the letter "g".  He will still need help with articulation and consistency, but he has made dramatic improvement in the last 3 months.  I am really pleased with his progress and I believe he is too!  He seems so proud of himself!

His physical development is still his strong point.  He is now able to climb up the stairs holding on to the railing, he can run, he can step over small items, and he is generally more coordinated than before.  He seems more aware of his body and is able to plan movement.

He is able to complete single piece puzzles, stack three large blocks, and flip through a board book one page at a time.  He can paint using a  modified tripod grasp and he is able to pick up small objects using a neat pincer grasp.

Cognitively, Baba is showing increased ability to problem solve, imitate behavior, and try novel activities.  He also displays decreased separation anxiety and is able to play on his own for 20-45 minute blocks.


The Terrible News

Baba has officially started the "terrible twos" early.  He has two crazy tantrums on his belt and he is ready for more!  He is definitely frustrated by the crazy things he wants to do...like moving the bookshelf...filled with books, working on mom's computer, spreading the peanut butter, and so many other things.  He also decided that diapers are a hassle and prefers nudity.   

He quite literally seems like a different kid!  I miss the other more cooperative kid.  Can I say that?  Oh well!!  I just felt emotionally drained after he tried to run away with poop smeared all over his butt, which led to a very loud and emotional protest.  Ugh!

The Better News

He seemed to sense that I was exasperated after the tantrum.  He walked cautiously and finally asked to nurse.  Then he took my hand and put it on his head, asking me to stroke his hair, which he usually hates.  He was "letting me" stroke his hair as an exchange, which amazingly did make me feel better! 

Though the future scares me.  I see that we are growing together and learning how to deal with his new overflowing emotions.  I'm sure that I'll learn to see the signs and I'll be able to deal with this new phase in time. 

On the other hand, his personality is really shining through and he is cuter than ever!  He is really connecting and sharing his world with me.  It's really adorable!

Everyday Therapy: Movement therapy inside the home

Sleeping baby

When we lived in San Francisco Bay Area, the weather was almost always good enough to go outside every single day.  Winter weather was really somebody else's Fall weather.  So it was never a problem finding a playground to get our sensory integration treatment...especially the swing.

New England weather is not going to be the same.  Extreme weather conditions may become our reality.  So I've been creating a veritable OT Gym inside our apartment.  My first priority was to install a swing, without creating gaping holes, yet safe for my little guy.

Ikea has been my favorite furniture store since they invaded the States with their amazing build your own furniture system.  They also have a great children's section, including this swing.  It no longer seems to be on their online catalog, but they had it in the store.  I grabbed one before I even knew if I could install it.

Baba was afraid of it at first.  However, he's intense curiosity overcame his fear and eventually asked to swing by standing in front of it and looking at me.  He promptly fell asleep.  He has been taking a nap in this swing ever since.  He also falls asleep in it, before being put to bed.

It's definitely not Sensory Integration Therapy, but it's certainly relaxing and comforting.  He has figured out when he needs to sleep and will now ask to swing when he wants to sleep.  Amazing!  It's been really wonderful to see that he is learning to read his own body and taking action to fill his own needs.

Ikea swing with platform swing

I didn't know that the air bag was sold separately, so I had to improvise using a small platform swing I bought on Amazon.  Eventually, I will buy the air bag and use the platform swing separately.  But for now...my son thinks it's his sleeping tent.  I'm okay with that.

Since Baba is so small and this was not a clinic, I chose to use the Ikea attachments to install the swing, using very heavy duty screws.  It turned out, that our ceiling is held up with steel beams.  So I feel extremely safe with this arrangement.

If you plan to put up a swing, make sure to get a very knowledgeable person to help out.  It's important that they take into account the amount of pressure exerted on the screws as the swing moves.  In a clinic setting, we usually account for 1000 pounds of pressure.  It's strong enough for an adult to use the swing safely.  Our swing would probably take 300 pounds of pressure, safe for up to a 50 pound child.  Since Baba is 28 pounds, this is good enough for now. 

If your child will be using the swing, independently, more safety measures may be necessary.  I bought attachments from Southpaw Enterprises, so I can take the swing down easily.  If you have plenty of room for putting up a swing and leaving it there, you won't need anything fancy. 

I'll be posting more information on using the swing as therapy soon, but I thought I'd put this idea out there.  Apartment Therapy has a great "do it yourself" post on putting up a simple swing here.  Design Mom's "Living with Kids" series showed one home with three swings in the playroom here.

So if you have an area with 6 feet radius of free space, consider putting in a swing for the long winter months.  It might just make you a parental star in the eyes of your child!

Everyday Therapy: Gross motor and sensory fun outside

Going outside with your child is probably the easiest "everyday therapy".  There are many opportunities for practicing skills.

Baba has some mild sensory issues that affect his ability to eat, to tolerate sounds, and try new things.  However, when he's outside he shows a remarkable ability to tolerate sensory input.  It also motivates him to try new things and practice his gross motor skills.

getting muddy

Normally he wouldn't touch anything wet or muddy, but he was inspired to walk through mud on this day!  He got the mud all over his feet.  Of course, he was unhappy afterwards and I had to wipe them.  Several weeks later, he walked in on his bare feet and didn't mind that his feet were covered with mud!

This is typical of children with sensory issues.  They are more willing to try new sensory experiences, when they can do so on their own terms, when their neurological and mental systems are prepared.  They also have days when their systems can tolerate more sensory input and days when they can't tolerate much at all.  Their body is affected by sleep, diet, stress, developmental stages, etc.  This is true of adults, but we have more coping skills to help us when we wake up on the wrong side of the bed.  Children are in various stages of learning these coping strategies.

walking on grass

It took Joshua a long time to start walking on grass.  He really didn't like how it felt.  We started with completely covered shoes, then the fisherman sandals above, and now he can walk on grass barefoot!  He had trouble with both the uneven ground and the feel of the grass.  He still has days when he can't tolerate it, but he no longer goes out of his way to avoid it.

beginning to run

Being outside, helped Baba learn to run.  I would write the numbers in chalk and he would walk from number to number, until he slowly began to run.  In this picture, he is still mainly walking fast.

vestibular/movement therapy

Baba hated the swing when he was younger, but watching other babies increased his curiosity, until he agreed to get on himself.  Now he loves the swing.  We recently installed one at home, so we wouldn't miss this important treatment during bad weather days.  Vestibular/movement treatment is one of the "big guns" for sensory integration treatment.

trying different things

Baba is very cautious and reticent of trying new things, especially if they involve possibly falling.  Yet when he's outside, he regularly tries new things.  In this picture, he decided to take the ball to the grass area, which required climbing over the barrier.  It's beautiful to see your child try things they might not try at home, when they feel inspired.

climbing a hill

There is a much larger variety of surfaces and inclines outside, giving your child more ways to practice or learn to challenge their balance.  In this picture, Baba practices going up and down a steeper incline, on a slightly slippery surface.

Even if your child is not really walking, they can still benefit from being outside.  If they're crawling, let them crawl on different surfaces.  It's a great sensory experience.  If they are using wheelchairs, walkers, or any other device, the different surfaces outside give them opportunity to challenge their skills.  Even if your child is not moving much, let them lay on a blanket and take in the sights.  They might just love it!

Why not enjoy the outdoors, while you still can?

A quick apology

I'm not sure what's happening, but for some reason blogger is publishing posts without my assistance.  Please forgive the intrusion into your emails.

I am writing a post and I'm not sure if somehow it's mistaking my saving the post, as publishing it.  I'm not sure how an old post got re-published, as I haven't even looked at that one in a long time.

Please accept my apologies.