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!

11 month old toddler

toddling at 11 months

 Baba is toddling around the house and anywhere he finds open ground.  He's trying to run.  Yes.  I said RUN!  Crazy kid has fallen and cut open his mouth, but it has not deterred him from trying to run again.  He can't even walk well yet.

I can't even skip one day of doing the Masgutova Method because his balance and the right leg function really show a significant difference the next day.  Yes.  That means more falling.  I had no idea what a constantly falling child meant when I was treating kids...yes, before I had my own kid. 

In my nice little OT gym, where everything was covered with carpets and mats...falling was good.  I could work with that.  I could help the kid learn to improve his balance.  There was no hard wooden surfaces to cut open lips or even bash heads.  Bashing heads into hard wooden surfaces that could cause another brain injury NEED TO BE BANNED in a house where the kid has already suffered a head injury.  Right?

But how does one get rid of kitchen cabinets and dressers and wall corners...and beds.  Do we need furniture? 

Where's the light?

When I was out around town, parents would warn me..."Wait till he walks!"  Then they would solemnly shake their heads and let out a sigh.  I didn't know.  I didn't know what they were talking about.  I was so ignorant!  So a newbie mom. 

NOW I KNOW!  Now I know how your heart can stop when your baby's head gets banged by the bed.  The first time you see blood and have no idea where it's coming from.  Let it not be a hole in his head!  Augh!

I have a newfound respect for parents who have survived toddlerhood.  Will I make it?

I can do this myself!

I won't fall in.

This is my long excuse for not being able to post anything for a while.  If you haven't seen it, I'm done with the "Wearing baby and Sensory Integration" Series...all five posts are complete for those of you who are interested. Click the treatment tab above or here for part 1, part 2, part 3, part 4, and part 5.

For those of you who have older children, I'm working on a new series called "Therapy Secrets".  It will have ideas for kids of all ages. 

I have also found some cool Pinterest sites that offer ideas for activities with children.  I will be featuring those soon.

Meanwhile, here are a few toddling pictures!  Oh!  I almost forgot.  He's acting like a toddler too.  He has very strong opinions about everything!

Professional walker on the loose!

Already a little scientist.

What baby stroke...another milestone

Normally I join SouleMama on Fridays, but I was working on the "Wearing baby and sensory integration part 4" the whole week and was only able to post it today.  Then I was going to wait till Monday to break the news, but I just can't wait!

Baba is officially walking...or was yesterday night!  He took his first steps on February 7th, but he was only able to take one step at a time.  Last night after completing the Masgutova Technique, he took a few steps.  Then Auntie continued to get him to take steps by moving the iPad slowly away.  (yes, I use the iPad to bribe my son into completing the therapy). 

He kept taking steps to follow her.  I didn't take pictures but I videotaped it.  I would include it here, but I have no idea how!  I may have to learn soon.  I want to show you snippets of our therapy sessions.  Actually, I want to tape the before, during, and after therapy session.  It's amazing how much improvement he shows with just one session.  If I could just get organized!

Baba is finally over his first flu and it wasn't fun.  I am tired and cranky, but these moments remind me that the effort is worth the pain and fatigue! 

I'm not walking on command, Mom!

Have an amazing weekend!

10 months after a baby stroke, an update

It seems that Baba is growing up all at once.  He has reached more milestones so I thought I'd do an update.  It's also close to his doctor's appointment, which makes it duo-purpose.

10 month Assessment:

Gross Motor Skills (large body movement):

Achieved:
Baba is able to push to stand from a squatting position, without holding on to anything.  He is also able to play with his toys, while standing, without support.  While standing, he is able to pick up a 3 inch diameter ball from the floor and throw it approximately 5 feet.  He is able to climb up and over a 15 inch barrier.  He is also able to crawl up 3 flights of stairs with 3 rest breaks.  While standing and using the wall as support with one hand, he is able to open and close bedroom and bathroom doors when a stopper is used to prevent the door from closing completely.  He is currently attempting to manipulate the bathroom door handle and may be able to open it soon!  Ugh!  He is also cruising around the furniture, though not often.  Baba took a step, three times, just yesterday.

Working on:
Baba is still bear crawling most of the time, though he is capable of cross crawling.  This may be due to a weak Cross-Extension Reflex.  Though he has started to cruise around the furniture, he has great difficulty walking while being supported with both arms.  Usually, the Automatic Gait Reflex kicks in, but it appears to be absent in Baba.  He appears to have decreased body awareness, though it's difficult to tell if it's just his temperament.

Fine Motor Skills (hand skills):

Achieved:
Baba is able to point his finger, but has difficulty curling his thumb in (so it really looks like he's making the gun gesture).  His accuracy at pointing to specific objects has dramatically improved and he is delighted to use the IPad.  He is also able to stack 1.5 rubber block, a 3 inch cloth covered foam block, and a 1inch building block (kind of like Legos).  He is also able to carry the Oddball, while he crawls.  He is able to manipulate a variety of objects that very in size, texture, and shape.  He is able to turn the pages of his board book, with moderate set up.  He is also able to tear tissue, by holding the tissue with one hand and pulling with the other (usually right hand, his affected side).

Working on:
Baba's pincer grasp is still immature.  He is sometimes able to grab objects with a modified pincer grasp (pad of index finger against the side of the thumb, instead of against the thumb pad).  It is not very effective and is a source of frustration for him.  For this reason, Baba is unable to feed himself the tiny melt in your mouth snacks, though he has been trying for 4 months.  Baba is able to press the buttons on toys.  Recently, he succeeded in pressing the keyboard buttons on his Leapad Laptop.  His gross grasp is very strong and he is now able to pick up a 6 inch diameter sensory ball with his right hand and throw it.

Activities of Daily Living:

Achieved:
Baba is able to feed himself with a spoon, when the spoon is placed in his hand with sticky food.  He is able to feed himself crackers.  He just learned how to drink from a small sippy cup today, though he needs reminders to drink a little at a time and needs help placing his hands in the handles correctly.  Baba is able to assist with donning and doffing his shirt, by pulling his arms out of the armholes to undress and pushing his arms in to dress.  Baba is able to imitate brushing, using a toothbrush. 

Working on:
Baba is having difficulty feeding himself small finger foods.  He is less than 10% successful at being able to place food in his mouth, despite concentrated effort for 4 months.  He is not really delayed, but it is a great source of frustration for him. 


Social/play:

Achieved:
Baba is very curious and loves to explore.  He is cautious in new surroundings and frequently checks with mom for reassurance.  He appears to be interested in other children, but is usually the observer.  He plays with a variety of toys, though he has clear favorites.  When he is finally able to achieve a personal goal, like press a button, he will squeal in delight and repeat the action many times.  He is happy to receive outside praise, but seems pretty satisfied with his own achievements.  Baba is self motivated and usually does not require encouragement to learn new tasks.  Baba is able to play on his own with supervision for 30 minutes at a time.  Baba is able to request attention, using sounds and gestures.

Working on:
Baba is often frustrated by not being able to an activity the way he imagines it.  He will sometimes get very frustrated at himself and start to cry.  Baba wants to imitate everything his mother does and will often get frustrated when he can't imitate the same action.  He is also unwilling to receive help and will frequently give up, rather than be assisted in most activities.  Baba also has difficulty with transitions and will sometimes protest intensely if not given fair warning.


Sensory Skills:

Achieved:
Baba displays increased ability to tolerate loud sounds when given warning, so he can prepare for it.  He is also showing increased tolerance for touching sticky substances with his hands.  He is showing increased tolerance to touch on his feet, recently tolerating grass on bare feet.  Baba displays decreased carsickness after his carseat was turned around.  (It's against recommendations for forward facing until 1 years old, though he is 5.5 pounds over the weight recommendation).  He is finally enjoying being swung on a swing!

Working on:
Baba can be overstimulated in crowded places and has a difficult time calming down after an outing.  Baba can still get startled with loud sounds and will sometimes cry.  He is still working on vestibular sensitivity and tactile sensivity.  As he increases his motor skills, Baba will also need to learn how to self modulate.  Currently, he sometimes sucks on his index finger to self modulate.

Cognitive/Language Skills:

Achieved:
Baba has learned the simple cause and effect principle.  He is able to recognize mommy's and auntie's picture.  He seems to understand the concept that the symbols he sees on the page are what we are reading.  Baba understands object permanence and is able to look for items that have disappeared from view.  He is able to remember some recent events, like recognizing the park in the photos I show him.  He is also able to play with toys in a variety of different ways.  He seems to enjoy learning the names of objects, the alphabet, and numbers.  He seems to understand some cue words, like "hot", "no touch", "out", and "all done".  Baba is able to do an activity for 3-5 minutes at a time, but is frequently able to come back to the activity after a few seconds to achieve a self made goal.  Baba is very self directed and can often play for 30 minutes by himself, as long as mom is within 5 feet.  He loves being read to and we can frequently read 3-4 books in on sitting.  Baba is also able to choose an object in an array of three choices.  He is able to say "mom" and he sometimes imitates sounds.  He has great inflections and his vocalizations are more complicated, with seeming attempt to communicate.

Working on:
Baba can often be frustrated by what he wants to do and what he is capable of doing.  He can sometimes get very upset and start to cry.  He is working on simple problem solving and learning his limits.  Baba is experimenting with his voice, sometimes screaming to his own delight.  He seems to be learning more vocabulary and sometimes surprises mom with his understanding.


Summary:

Baba is doing very well.  Despite the injury to his frontal/parietal lobe, he has made amazing progress.  He no longer displays spastic tone or muscle weakness of his right side.  He is on schedule for all his milestones and some of them are slightly ahead.  He has some remaining issues with his cross-extension reflex and the automatic gait reflex, but mom will continue to use the Masgutova Method to integrate those reflexes.  This will hopefully help Baba eventually walk.

He calls me mom

 I finished writing part 3 of the baby wearing, sensory integration, and NDT series, complete with links and photos...but somehow lost it.  Blogger posted a blank page.  I don't know how it happened, but I'm so frustrated.  I guess blogging has a learning curve.  I'm posting this one because it was already written.  The other post took days to write.  Ugh!!

My son first called me "uhm-mah", when he was 4 months old.  I was kissing him and making the exaggerated kissing sounds, "um-muah".  He thought I was trying to get him to imitate me...I guess.  He started to frown, so I stopped.  Then with apparent stress and difficulty, he said "uhm-mah".  It just happens to mean mom in Korean.  Fortuitous?  Maybe.

From that point on, whenever he was distressed and wanted my attention immediately, he shouted "uhm-mah".  But I don't speak Korean to him.  It's not my first language.  So I continued to call myself "mommy".

Well one day, around month 6, I heard a very loud distressed, "maaaa  uhm".  From that point, he has called me mom.  Yup.  He calls me mom.  Sometimes, he calls me mom with all the angst and irritation of a teenager.

I try hard not to laugh, but sometimes it cracks me up.  He's intonations are spot on.  Especially, when he's upset, irritated, or bored.

The little guy is his own person.  He knows what he wants.  He won't usually compromise.  Though he's pretty good at walking away from something he's not allowed to do.  I think he figures he'll wait until I'm not paying attention.  So when it's suddenly very quiet, I know it's time to go looking for him.  He's probably trying to do something crazy.

In a way, I might savor these moments more because I didn't expect them.  When I found out he had suffered a stroke, I just assumed I wouldn't be suffering these antics until much later, if ever.  So I'm grateful...even though sometimes I'm flustered.

My son may have suffered a stroke, but he is like any other kid, he has personality...the good, the bad, and the ugly...like any other kid.

this moment

Joining SouleMama on <this moment>.  No words needed.

Have a great weekend!

Fibromyalgia brain fog mess

I'm finally over my cold!  Yeah!  But...I still have a mild flare up (fibromyalgia)...boooo!  I wanted to write lots of helpful articles about treating a stroke, but I can't think straight.  Why?  Brain fog.  What's that, you say?  It's another symptom of fibromyalgia.  Yup!  My good friend does not disappoint.  Ugh!  

I open one of my many drafts, but I stare at the screen.  Sometimes, I attempt to write a few sentences, but they don't make sense.  It's harder because I have to write them in "layman's terms".  That means I have to define everything and attempt to explain myself in a way that would make sense to anybody, not just therapists.  

In person, I can easily adapt to the person I'm speaking to by reading their cues, but online I have to be clearer.  Otherwise, y'all will think I'm incompetent.  Or, at least that's what I think.  I guess it could be part of my perfectionism problem.  Sigh!  Aren't I supposed to be over this personality flaw by now?  I'm 39 years old!  Ugh!

The good news is that I've started to do the Masgutova Method with Baba again...with good results!  I was so sick, that we had to put this method on hold for 3 weeks!  I feel terrible, but it couldn't be helped.  It was just too hard.  He no longer wants to lay around while his mom "massages" him.  He's always on the go.  That means Auntie and I have to do crazy things to get all the reflexes done.
 

He's starting to cross crawl (on knees, rather than on his feet), which is good.  We still have a ways to go, but it's much harder now because he's used to bear crawling (on his feet). He's decided he wants to crawl that way, even when it's obviously harder on certain surfaces.

We are also working on developing his pincer grasp.  He finds it extremely frustrating that he can't pick up small objects.  He's not behind per typical charts, but it's obvious that he finds it frustrating.  Each child has their own developmental timeline and I believe Baba would be more advanced in his fine motor, if he hadn't suffered a stroke.  How do I know?  Mommy intuition, coupled with therapeutic observation.

If I don't help him develop his fine motor at his pace, he might get so frustrated that he'll give up.  This will adversely affect his motivation, making it harder to work on later.  It will also affect his self confidence, which will affect performance in other areas.

Baba suffered a stroke mainly in his frontal lobe, on his left side, though it also damaged part of his parietal lobe.  The frontal lobe controls executive functions (problem solving, memory, etc.).  It also can affect frustration tolerance, attention, and learning.  Many children with this type of injury may also develop emotional problems when they're older.  

The left parietal lobe houses the language centers.  It is my secret fear that he'll understand language, but won't be able to communicate his thoughts.  It's not the articulation part because with IPads, kids can now speak.  No.  The worst language problem is understanding everything, but not be able to communicate verbally, written, or sign.  In this type of problem, the person thinks he is clearly speaking, but it sounds like gibberish to everyone else.  They can't communicate in any medium.

It doesn't look like he has this issue, as he is perfectly able to use gestures and intonations to communicate now.  Yet I still have panic attacks that Baba has this communication problem.  Yes, I know it's crazy.  I know it's most likely not true...yet...  What can I say?  My mind seems to like drama.

Hopefully, my brain fog will clear soon, and I'll be able to finish writing "wearing baby, part 2" or any of the other 5 articles I've started, but can't seem to finish.  Perhaps I will have a posting spree when I finally finish the articles!

All the photos are from our day in the park, last weekend.  He really seemed to love it!  He's usually reticent, but this time he couldn't wait to explore.

The crazy kid tried to go down head first!  I guess he hasn't learned about heights yet! 

I think he wasn't happy that I was "helping" him.

We had so much fun!  The milestone of the day was trying to climb back up the slide.  Of course, he needed much help!  However, I thought we'd celebrate the attempt!

Milestone: Going up steps

Baba went up 3 steps by himself.  I didn't have to show him how to do it!  He was so proud of himself!

I didn't know I would be celebrating milestones on a "typical" schedule.  I really feel blessed.

a different point of view

Taking time to look at a different view!

There is so much I wish I could impart all at once, but time is short and there is so much to say.  I didn't realize how complicated my thought process was, until I began to write it down!  However, I am continuing to work on Part 2 about "wearing baby as treatment".  I am also simultaneously writing other informative articles.  So come back and visit us!

Milestone of the Week:  

Baba stood on the bed without holding on to anything for 4 seconds before plopping down!  Yeah!!

I hope everyone has a great weekend!  Baba and I are going to spend some time outside!

Rejoicing the milestones

A good writer, blogger, and mom, who has adorable twin boys, posted something that really rang true for me.  Her son Malachi suffered a stroke and is a little delayed in reaching his milestones than his brother.  Recently, Malachi was able to reach several milestones within a few days, yet she didn't feel ecstatic like her friends and family.  After a good cry, she realized that she was so focused on his future and the milestones ahead that it sapped the joy of his current success.  (Read the post here.)

I realized that I was doing the same thing, only I was still blind!  I feel so grateful to Shasta for writing such a moving post.  Perhaps, I would have spent several more months missing out on my son's progress and sapping the joy of his successes!

My son, I rejoice over your success at starting to crawl, pulling yourself up to stand, and really trying to talk!  I guess it's better late than never!