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The devastation of yesterday has been replaced by the joys of today.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.

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!

More than words...

Thinking

 He can't say much, not with words, but he says a lot without words.  His face is constantly moving into different expressions, sometimes so quickly, it's easy to miss.  He has very strong opinions and he wants to be heard.  He wants to have a say in everything we do, because he likes feeling heard.  I know, because he tells me.  If he's trying to tell me something and I finally figure out what he wants, he claps for me...to let me know that I got it...to tell me he's happy that I took the time to understand.  He's happy to be heard.

Sometimes he asks me to repeat something...over and over.  He seems to hear, but has a hard time processing what he hears.  He gets a puzzled look on his face.  It's more apparent when he can't understand a word he already knows.

Where's T?

I started teaching him sign, but he has some motor apraxia (when there's a problem between wanting to move a certain way and actually being able to execute it, even though able to do it physically).  I tried moving his hands for him, but he refuses.  It embarrasses him that he can't follow my movements. He has a sensitive nature and is hard on himself. 

He finally learned how to sign "more".  It still tickles him that he can use this sign to ask for more swing, more swing, and more swing!  Sometimes, he signs for more funny faces, hugs, and kisses.

More swing!

But the happiness of communicating with sign didn't overcome, the frustration of learning it.  So...it's on the back burner until he's motor planning (ability to execute a desired motor action) improves.

Now I'm exploring the use of an iPad as an augmentative device.  I bought the app, "My first AAC".  I'll let you know how I like it.

Put down the camera, mom!

Some may wonder why I seem to be in a hurry to find a communication avenue, but I'm following my own advice about treating according to your child's temperament.  My son is very interested in communicating his wants and needs.  He is also very frustrated by not being able to use words.  Especially because he already knows so many of them. 

There is a large discrepancy between what he knows and what he's able to convey.  He knows all the upper case letters, some of the lower case letters, the basic shapes, numbers 0-22, he can independently maneuver to his apps on the iPad, the basic colors, how to open doors using auto keys and handicapped buttons, and...and...probably things I don't know about yet.

Creating a future, one block at a time.

I'm constantly surprised by his abilities and knowledge.  It makes me happy and indescribably sad.  Happy that he is so motivated to learn, but sad that this large dead area in his brain is making it hard for him.  That large dead area that will continue to get in the way...every time his brain requests for something that is now dead.  After many attempts to communicate with this dead area or try to get through this dead area, the brain finally realizes it must build new roads and create new ways of making up for what is lost. 

There is a constant fear...the brain will get super efficient and only build roads deemed absolutely necessary for survival.  Survival doesn't really include talking, jumping, coordinated sports, or many other desired things.  You see...the brain is a super efficient little machine...it knows how to survive. 

The face of joy.

My goal is to convince Baba's brain that talking, jumping, reading, drawing, socializing, and living a full life...is essential to survival.  I want him to be able to do more than physically survive.  I want him to be happy...whatever that means to his little heart. 

It's every parents dream to ensure happiness for their children, but brain injury certainly make this goal more complicated.  Did you know that there's a 50/50 chance that a child who suffers a stroke will grow up without any symptoms?  Well we're in the half that has to work harder.

Sometimes that's so hard.  Sometimes it seems too hard.  Sometimes I wonder if I can do it.  Therapy for years to come.  How does anyone survive it?

Then in a quiet moment of contentment, my son cradles my face with his tiny hands, looks deeply into my eyes, and gently kisses me.  It's more than words could ever say.

More than words

Leaving Babyhood Behind

Change is hard.  Before motherhood, change was easy for me.  In fact, I looked forward to change.  I got bored easily and change was a refreshing way to make things interesting.  Then...then, I became a mother.

A very serious baby

 Now, I can't wait to get back "on schedule" and keep things as similar as possible.  I feel scatterbrained and I can't remember where anything is!  Is that normal?  Is it the lack of sleep?  Well, I guess it's all a package.  At least, it's a very cute package!

I used to jeer...yes, jeer at the mother's who obviously cut their own child's hair.  Why don't they take them to a professional?  It looks awful!  Then...I cut my own son's hair.

momcut

Why?  I am deathly afraid of taking him to get his haircut.  He is very weary of strangers, he's sensitive to being touched, and I'm afraid of a full out tantrum...when everything is already hard.  So...I cut his bangs, while he was watching Youtube.  It was hard.  It was really hard.  How do the pros do it?  At least, the hair is not poking his eyes anymore...the only reason I was "persuaded" to cut the offending hair.  Otherwise, it's just going to be long.  It's going to stay long!  Even if everyone keeps thinking he's a girl.  A girl wearing very boy clothes. 

For now, our house has 4 pieces of furniture...a table, two chairs, and a highchair.  Unless, you count the boxes and a couple mattresses on the floor.

Ikea table and two chairs

Studying the Alphabet

Baba thinks this is his playroom...since his toys dominate the living area.  There's no place to put the toys.  So they have taken over.

Ikea train set

It's fun to see how he figures out the toys.  I like how he experiments with them.  Stepping on them, moving them, trying to build using different toys together.  He's really becoming a boy...slowly leaving babyhood behind.

Exploring

He seems to understand more and he seems to want to communicate, but his words are mostly vowel sounds.  He can't seem to imitate sound when he wants, though sometimes he's able to imitate when it's automatic. 

He recognizes the difference between letters and numbers.  He knows what they look like.  When he holds his "letters or numbers", he corrects their orientation correctly.  He can correctly point to "0, 1, 2, 3, 4, 7, 8, 9, and 10".  He knows some of his letters, especially "A, E, O, U, H, B, M, P, Z, S". 

But, he really doesn't seem to know words.  He asks me to repeat the same word...over and over.  It seems like he's having a hard time, processing all the sounds together. 

Yet, he seems to understand things...intuitively.  He is very sensitive to emotions.  My emotions seem to affect him the most.  He will start to whimper, if he thinks I'm hurt.  If I'm anxious, he gets anxious too.  So I do everything possible to control my emotions.  To regulate them and not spend too long on negative emotions.  It's actually been therapeutic for me.  For the first time, in a long time, I'm more positive than negative.  I owe it to him.

Learning to walk on a hill

He's slowly becoming less cautious and a little more willing to explore new places, new obstacles.  I hold back my fears of seeing him fall and I encourage him to try...to make a new pathway for himself.  I let him know that he can be independent...even if he should fall...because he can always get up.  Most of all, I'm always nearby...just in case he needs me to reassure him.

Conquered!

Sometimes, I'm so close to saying "no".  But I take a deep breath, shut my mouth and watch.  Most of the time, he's careful.  Most of the time, he will ask for help...if he really needs it.  So, I am just a guide.  I am here to help him find his way into this world.  So that he can have the confidence to overcome the obstacles that are looming in the way. 

If he can find his independence...even if he's never able to use his voice...he will succeed in finding his own way. 

My only goal...is to not get in his way.

15 months after a baby stroke and other updates

It's been a long time since I've blogged and I'm sorry for the absence.  I've been so crazy busy with moving.  Baba is a trooper taking in the changes without too much trouble.  He seems to grow more cognitively than physically now and I'm always amazed at how much he seems to know or understand.  Yeah.  I'm being THAT MOM...the one who thinks her kid is brilliant.  I'm just so happy to see the progress he's making and it does seem amazing to me.  Not that long ago, I wasn't sure he would be able to understand my words...so everything above that seems genius.  He loves his letters and numbers!  He studies them everyday...on his own volition.  Only this week, he started to be interested in words.  Isn't that backwards?  I don't know, but I'm letting him lead the way.  Who cares if it's backwards?

We are still breast feeding at 15 months.  In the beginning, I wasn't sure if I'd last 3 months, but now I am determined to let him wean at his own pace.  All these changes are hard on the little guy, so it helps to have a safe place to land.  If we had stopped breastfeeding, we would have had to turn to formula because he is still not eating much solid food.  I think it's a combination of difficulty managing the food in his mouth and sensitivity to touch.  He seems more sensitive to touch in his mouth.  Brushing his teeth is quite a production.  It gives me a little relief that I am still able to breastfeed.  I have a feeling that he would reject bottles and formula at this point...though he had supplemental feelings as a newborn.

It also gives me time to figure out how to present the food in a more tantalizing way.  In a way that would make it easier to eat.  It also gives me time to figure out what therapy techniques to add to the regimen.  I've always found dysphasia and feeding therapy daunting.  I also need to find a specialist, who can give me specifics about babies, since it's not my area of expertise. 

Trouble eating, translates to trouble forming sounds, which of course affects speech.  So Baba isn't talking yet.  He can say "mama", and I've heard him repeat a few sounds like "a".  But he doesn't consistently "speak".  He does, however, communicate using gestures and sounds.  He also seems to understand simple language, though it's hard to say how much. 

My main concern has to do with his hearing.  I know he can hear me, but he doesn't seem to be able to locate the direction of the sound.  When calls out for me and I answer him from behind, he doesn't turn towards me.  He keeps looking for me in front and if I don't touch him, he starts freaking out because he can't find me. 

I would ask the pediatrician, but we don't have one yet.  We are in the process of finding one, a not so easy task.  Sigh...

My mother is fighting cancer like a warrior, but it isn't easy.  My brother has really stepped up to the plate and is caring for her with supreme kindness and love.  It makes being far away seem less awful.  My mom understands why I chose to move.  She knows I did it for my son, to give him a better life.  Still, it's hard for her.  It's hard for us.

I've been struggling with the "art of blogging".  I started this blog to share our story.  I wanted to help other parents going through similar circumstances and hopefully be a source of helpful information.  I still do.  Yet they're is so much going on and so little time to spend writing.  I also struggle with how much to share about my personal life.  I tend to be a private person in the public venue, though I tend to be quite open with my circle of friends. 

As far as reading other blogs, I personally gravitate toward the ones who write positive messages.  It's comforting and fun to read.  Yet I wonder, are their lives really this magical or are they simply writing to encourage, not to share sordid details of their lives.  Where do I fit in this "blog world"?

I guess I don't know where this blog is going.  I feel like my mission is unclear and that makes writing more difficult.  I feel lost and I'm not sure when I'll find myself again.  I'm going to be 40 in a month.  Is this just a midlife crisis?  I hope that I will figure things out soon.  I have so much to share.  Things will calm down after we move to our permanent home in 3 weeks and we finally settle down.  We moved 3000 miles to the New England coast.  It's really beautiful and really hot! 

I hope you are having fun and staying cool! 

p.s.  a photo story

The future sometimes seems ominous.

Sometimes we have to be willing to take a step in a new direction.

Sometimes we have to learn something new.

Sometimes it feels like the obstacles are insurmountable.

New starts can be a little scary.

But if we keep smiling, we may just be able to succeed.

Recovering from NICU trauma

 It's early morning and he starts to shift from side to side looking for me, but some how he's ended up on the other edge of the bed.  I scoot towards him and slide him towards me.  He rubs his nose and I know that means he's hungry.  I place him close to me and let him nurse.  He's still asleep, but he nurses diligently.  He always nurses every hour in the morning, when he dreams and tosses about from side to side. 

This morning I'm awake, reading amazing blogs and wishing I could write half as well.  I watch his face as he bursts into laughter.  He's having a fun dream.  I'm so glad!  I remember the early months when he used to cry in his sleep.  It used to break my heart.  It still breaks my heart.  I wondered if he was dreaming about his NICU stay...about the times when I wasn't there...when they were holding him down to poke his spine 12 times...unsuccessfully.

I remember when the APRN told me how odd it was that no one was able to extract spinal fluid from him.  She was so distracted by her failure, but I was distracted by how many times these people hurt my baby to satisfy their type A need to succeed...only to fail anyway!  I was also mad that they decided to poke my baby twelve times, without telling me.  They risked paralyzingly my baby twelve times without informing his mother.  Why does the mother have to know anyway? 

But I'm afraid to say anything.  I'm afraid my anger and fear will be labeled as difficult mother and it will negatively affect the way his nurses treat him...especially when I'm not around.  So I smile, brokenly, but she doesn't notice, she is still amazed by her first failure in eleven years.  I try not to imagine how many people held him down...because I believe you have to lay on your side or hunched over in a sitting position.  I try not to visualize it in my head.  I must stay strong.  I must stay strong.  My baby needs me. 

When I finally bring him home, he starts having crying dreams.  He doesn't always wake up.  Huge tears roll down his face as he struggles to move.  I had a hard time moving after the c-section.  It was so hard to get him out of the bassinet.  It felt like an eternity passed while I struggled to bring him next to me.  I guess this is the hard part of being a single mother.  There's no one else to bring him to me.  After a couple weeks, I leave him on my bed.  It's so much easier.  I barely wake up to nurse him.  Then when he cries, I pull him closer and nestle him in my arms.  He seems happier, more settled. 

He's 13 months old now.  He's such a toddler already, threatening to be independent tomorrow.  He rarely cries in his sleep now.  He mostly cries from frustration when he falls.  He lets me comfort him, but he avoids eye contact.  He doesn't want to be embarrassed.  He's such a happy boy!  He loves playing hide an seek...he can really squeal when he finds me around the corner.  Sometimes he waits after I've gone around the corner as he revels in the anticipation!  Then he practically runs, squealing with flailing limbs, almost hitting whatever is in his way, while staring at my face.  I just love to see the pure joy in his face!

I am so grateful to be here!  I am so ecstatic that we are doing so well!  I know there is more therapy and more struggles to come, but I feel more confident today than a year ago.  Maybe I can do this motherhood thing after all!  Maybe I'm strong enough, smart enough, and good enough to be his mother.  I do know one thing for sure.  I love this kid more than I have ever loved anyone before.  I feel so connected to him...whole body, heart, and soul!

Lost therapy post and sensory integration tip

Does it look the same upside down?

It happened again.  I lost an entire post!  Ugh!  Blogger always manages to eat the therapy posts.  The ones that are so hard to write.  This one was going to start the series, "Therapy Secrets".  It took me weeks to finish it...a little at a time.  Ugh!  At least I have the bulk saved onto Evernote.  I still have to add pictures and text explaining the pictures.  Hopefully, it will be up before the end of the week.

Does this only happen to me?  I hope I can figure out how to have a back up copy, so this doesn't keep happening.  What a waste of time!


Sensory Integration Tip:

I have less time lately because we're preparing to move.  Baba is a little disconcerted by the changes in the environment: boxes everywhere and moving furniture to accommodate them.  He is not good with change, though he's handling it like a trooper. 

Children with sensory issues have more difficulty adapting to changes in the environment because they have to learn to adapt their senses to the new environment.  So the greater the change, the greater their possible distress.  Baba's sensory issues are mild, so it's not as difficult as it can be for children with moderate to serious sensory issues.

Generally, I try to keep his space similar so he doesn't feel like the rug was completely taken from under him.  I also give him more ways to self soothe and increase sensory therapy. 

This is generally a good idea for any child who suffers from sensory issues. 

I hope this little tip suffices while I re-write the other longer post! 

Have a lovely day!

One year after a baby stroke

I don't know how many times I've started to write our birth story, but I just can't seem to make it coherent.  It's been a year and the memories of that time are dampening the good of today.  I know I'm suffering from the trauma.  It was such a difficult time.  I will eventually be able to write about it and heal, but for today I will focus on how far we've come.  There are definite challenges up ahead, but we are stronger together. 

Baba has changed my life for the better and I'm so grateful to him!  He is the light in my life and he brings out the best in me.  He is a unique little guy, who is already acting like he is a leader.  People think he is hilarious! 

He loves learning his numbers and letters, though ever since he started walking, his verbal output has decreased.  He has even stopped saying mom.  However, he is clearly able to communicate his wishes and desires with gestures and sounds.  I love to hear his little sounds because they so clearly indicate his opinions.  He has very clear opinions about his little world and I love learning about who he is as a person.

 The neurologist says that Baba may have delayed speech development and there is a slight inward turn of his right foot.  We have to keep up with the therapy to prevent bigger problems.  Baba and I do therapy everyday.  Some of it is very boring and some of it is just fun.  It's become a part of of life, so it's easier now.  At first it felt like my head was filled with therapy, but now we have more fun.  Sometimes I even forget we're doing therapy! 

 It certainly hasn't been an easy year, but I guess motherhood is harder than I ever could have imagined.  It's also more rewarding than I ever imagined.  I just love to make him smile!  It really lights up my heart and makes every exhausted part of my body happy.  I couldn't have asked for a better match in temperament.  He keeps me on my toes! 

My life hasn't been easy, but I know that I am blessed with an amazing little person who makes my life better.  I don't know how I lived before he came along! 

I'm learning so much about taking photos of children from this little guy.  He's so adorable and I can't stop snapping pictures, but I have so much to learn.  More than half of my pictures are awful.  I'm used to taking photos of flowers and things that just stand still at dusk.  It's so much harder to take photos of a fast moving object in all kinds of different lighting, but it's so much fun!

Right now, I'm so inspired by the other amazing photographer bloggers!  These are some of my favorite mommy bloggers who also happen to be great photographers!

The Paper Mama--who also happens to have lots of photo challenges, which I hope to enter soon!

Moosh in Indy--she's a popular mommy blogger, who also gives great photo tips!

Enjoying the Small Things--a super popular mommy blogger, who also happens to take amazing photos of people!

Have an amazing day everyone!

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.

Metamorphosing into a mother

Metamorphosing from child to adult has been excruciating.  The stench from the rotting cocoon fills my nose and reminds me of my journey to this place.  The place where healing finally begins and the past can finally be burned into ashes.  Even the ashes must be set free into the wild ocean, for the tame ground of my soul is too tender for its teeth.  The scars are still healing and sometimes they burst open revealing the puss that must be extricated and thrown into the acid of no return.

This is just the beginning.  This is just the beginning of washing the stain of my pain.  The stain that tried to tattoo itself to my heart and body.  It won't be a short journey.  It's already lasted 39 years.  Many things have changed during that time, but the pain is always the same.  It started with my reluctant birth into a world where I was not wanted.  Into a world, where my presence burdened two broken beings together.

The healing began when I birthed another being.  One I had not expected.  One I didn't know I could mother into human form.  Then a lightening stroke broke open a wound in his brain and my mothering instincts pressed the pedal to the metal and a mother was born.  She is fierce.  She is capable.  She is trying to transform my broken form into the woman I need to be.  The kind of woman that becomes the mother of a strong man, without a man.

At the climax of all that could go wrong, a gift was given.  A gift I could not refuse, even when I thought it would be best.  I found my passion in loving a little form that clarifies my understanding of unconditional love.  I found that after all, I was meant to be a mother.  After all, I was meant to be his mother.

2 months old

  Linking up to Just Write.

Developmental Specialist Appointment

We met with the Developmental Specialist last Wednesday.  He had seen Baba when he was 4 months old.  At the time, he felt Baba had some spasticity and weakness on his right leg, but he seemed to test average for everything else.  At that point, there was always a possibility of developing more asymmetry (decreased strength and function on one side).  So they wanted to keep an eye on his progress.

At this appointment, he couldn't get over how well Baba was doing.  He couldn't believe that he was walking!  Baba also tested cognitively at 12 months (slightly above), verbally at 10 months (average), fine motor at 10 months (average), and gross motor at 12 months (slightly above). 

After the fellow (a doctor who is getting training in a specialty area) left, the attending came in excitedly.

"Will he walk for me?"

I wasn't sure.  Baba is very wary of strangers, for he probably didn't remember her.  My jaw absolutely dropped as he not only seemed comfortable with her, he asked her to pick him up!  I couldn't believe it!  He played with the toys she brought and showed off his walking, turning, and squatting.  Oh yeah!  He was flirting!

The attending felt that Baba was doing very well and she could not detect any asymmetry in his body or any other problems at this time.  They hoped to see him again, but we're moving far away, so it would be impossible. 

At home, we're noticing that his right toes are curling in when he walks.  So when he loses he's balance, it's almost always on his right side.  So we're continuing the Masgutova Method to try and encourage his brain to keep his body in symmetry.

These results are beyond all my expectations and even the expectations of the doctors.  We are all pleasantly surprised.  It is the best kind of surprise.