Thursday, December 29, 2011

When everyone is sick

I'm terribly sick with a "coughing your lungs up cold".  The little guy is teething and generally feeling down.  So we're taking things slow and auntie is helping us from completely melting down.  I think his expression in this photo explains it all...though I took this a couple of weeks ago.

Hope everyone else is doing well and enjoying some holiday time!

Wednesday, December 21, 2011

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.

Sunday, December 18, 2011

Sensory overload

I wanted to take nice pictures.  The kind that require nice outfits and beautiful settings.  I just didn't plan on the rest of the day.

The day went like this:
      11am--getting special clothes on
 12:30pm--drive in traffic
        1pm--ate Hawaiian BBQ
   2:30pm--nurse and nap
        3pm--long photo session
        5pm--busy bookstore cafe for too long
        6pm--walking among bright lights
   6:30pm--ate at really overwhelming cafe
       7pm--more walking in bright lights
  7:30pm--nurse and attempt to de-stress
      8pm--drive-got car sick
  8:30pm--stop at Babies R Us to recover from car sickness
      9pm--peak in Toys R Us--cause I'm crazy!
  9:30pm--back to Babies R Us to recover from Toys R Us
10:00pm--auntie almost gets a ticket for illegal u-turn because we're trying to
                find a place to park because Baba is crying
11:00pm--stop at In n Out parking lot for a break and nurse to calm down
11:30pm--long drive home
12am--crawl into bed

Yeah.  I was insane!  A 40 minute drive turned into a three and a half hour nightmare!  Good thing his memory is short!

    He just loves nature!

    Wish it was lighter, but perfect smile!

    He loves water fountains!

    Friday, December 16, 2011

    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!

    Wednesday, December 14, 2011

    Love Burst

    I thought I knew what love was...  I didn't.  I thought I knew how to love.  I didn't.  Now as I discover an ever deeper love for my son, I'm bursting with love. 

    Guiding him into becoming a good, loving human being is my goal.  He may have "disabilities" that make him different, but he will not be disabled in heart.  There, he will feel an abundance of love.  Hopefully, this abundance will overflow freely from him too.

    Then I will be happy.  I will not ask for more.

    Tuesday, December 13, 2011

    Wearing baby as therapy--Part 1

    There are many ways to accomplish a similar therapeutic goal.  It's a matter of finding what works for you and your child.  Of course, that's the hard part.

    I started "wearing" Baba (his nickname) long before I learned about "Attachment Parenting".  Before he was born, I knew my physical limitations would prevent me from picking him up and carrying him without assistance.  So I bought the one I saw on everyone...the Bjorn.

    When he suffered a stroke, I knew one of the usual problems was sensory regulation (the ability to organize sensory information in a useful way).  Vestibular or movement input is on way babies begin to organize.  It starts in-utero, when mommy is walking and continues outside of the womb for months.  Touch is also a powerful organizer, since the skin is the largest organ.  Deep touch or proprioception is below the skin level and is often a calming sensory input.  As you probably guessed, these are the main sensory inputs a baby gets inside the uterus.

    Being able to organize vestibular, touch, and proprioception input vastly affects a baby's ability to calm himself, his ability to perceive the physical world, and eventually his ability to learn movement.  Everything that affects his senses also affects his brain development, which of course affects his physical development.

    Sound like we're going round and round?  Hang in there!

    Typically this all happens without needing therapy.  Baby cries, mom picks her up and gently rocks her and starts breastfeeding.  Both activities provide touch, movement, and deep touch input and baby calms down and sleeps.

    Sounds easy?  Well...maybe not easy, but logical?  The problem is that babies all need different amount of input.  Some need very little and some need a lot.  The amount of input needed also varies from day to day and even hour to hour.  The key is learning your baby's cues, which most parents begin to learn.

    In general, boys usually need more vestibular and deep touch input for good development.  This later looks like rough play.  Of course, this is not always the case.

    A stroke can have profound affects on this developmental process.  The stroke victim's ability to process sensory input may be affected.  Most children begin to learn when they need more input (i.e. pick me up, rock me, I need to suckle, cuddle, etc.) or when they've had enough (i.e. put me down, look away, I need space, etc.).

    Children who suffer a stroke, may not be able to read their body cues accurately.  They may need to be picked up, but they don't realize it.  Their inability to organize makes them feel uncomfortable and when time passes they feel awful.  By the time they cry, nothing seems to make it better.

    Her parents try to figure out whats wrong, but it seems that what worked before isn't working anymore.  They try rocking, feeding, light rubbing, and finally swaddling seems to work.  She needed deep touch.  Suddenly she starts to cry again.  They take her out of the swaddling and she screams harder.  They put it back on.  She stops crying for a minute, only to start crying again.  Mom starts rocking her gently and singing soothingly.  Baby finally goes to sleep exhausted.

    What happened?  By the time baby cried, she was extremely uncomfortable, which also made her more sensitive to stimuli.  So everything the parents were initially doing was making her feel worse.  She needed deep touch to desensitize and followed by movement to calm down. 

    Most babies are able to read their body cues a little more accurately and they aren't as sensitive to stimuli.  This means that they are able to communicate their discomfort in a timely manner and are easily comforted by rocking, feeding, swaddling, rubbing the back, etc.   

    So how does "wearing my baby" help with this problem?  Read Part 2 here!  Part 3 here. and Part 4 here.

    still napping in sling after being carried


    The little guy is teething.  The two upper teeth and two bottom teeth are coming in at the same time!  Is that even normal?  Not only is he a giant 8 month old...over 25 pounds...29 inches, he's also getting four teeth at the same time!  Isn't there some kind of rule against that?

    The pain is causing fever and even vomiting!  He already woke up a few times, screaming in pain.  He doesn't cry much, so seeing tears in his eyes is so disconcerting!  Acetaminophen is helping to bring the fever down, I'm not sure the pain is better.  I wish he could talk.

    Mama:  Does it hurt?

    Baba:  Duh!

    Mama:  I guess it's obvious.

    Baba:  Duh!

    I guess I don't need to ask.

    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!

    Sunday, December 11, 2011

    Individual milestone schedule

     I'm so sorry for the delay in posting.  Baba (nickname) is crawling and pulling up to stand, but he thinks he's walking and talking at the same time!  He is so dangerous in this temporary, but child unfriendly house!  I really thought he was going to be delayed so I didn't think this hazardous house would be a problem! 

    I can't leave him alone for a second.  Sigh...   Although he's moving pretty well, he doesn't always pay attention.  He's also trying to do things way beyond his capability.  This sets him up for nasty accidents...already many close calls. 

    Goes to show you that no on can predict when a child will reach their developmental milestones!  I was dead wrong!  So if anybody tells you what your child will NOT be able to do, just ignore it.  They can't possibly know for sure.  Assume your child will reach every milestone on their schedule, not anyone else's schedule!

    Thursday, December 1, 2011

    Baba wins!

    Baba:  I want to stand up, mommy.

    Mom:  That's a great idea!  Why don't we go to the living room?

    Baba:  The living room's boring.

    Mom:  Why?

    Baba:  I've done the pull to stand on the sofa a 100 times!

    Mom:  You can count to 100?

    Baba:  Mom!

    Mom:  But this bathroom is seriously dangerous!  You could hit the toilet, bathtub, and sink in one fell swoop!

    Baba:  I won't fall.

    Mom:  But you might.

    Baba:  Aren't you a therapist?

    Mom:  Yes.

    Baba:  So isn't that why you're here?

    This is an example of the conversations I feel like I'm having with my 8 month old.  In reality, just replace all words with "mama-baba".  Then repeat.

    Wednesday, November 30, 2011

    Is therapy working?

    Did the therapy really help my son?

    A parent once asked me, "How do you know that a certain therapeutic method is working?  What if the problem got better spontaneously?  How can you really tell?"  I thought it was a really good question.  Don't you?

    I certainly wouldn't want to waste my time with methods that weren't working.  I want to make sure that my efforts are not in vain.  So how do I know?

    When I'm treating a client, I always have very specific goals.  Every activity I do with a child has a specific purpose.  A parent watching may think it just looks like fun and play, but it's therapy disguised as play.  Every task is graded to be at just the right amount of challenge: easy enough to accomplish, but hard enough to push to the next level.  This is the basis of sensory integration treatment.

    What does this look like in practice?  Let me give you an example.

    Allan (not his real name) was a six year old boy diagnosed with moderate-severe Autism.  He did not use words or gestures to communicate.  He had severe sensory problems which interfered with his family, social, and school life.  He frequently used flicking saliva with his fingers as a self stimulatory behavior.

    When I evaluated Allan, he ran around the room in circles.  He appeared fearful and anxious.  When I observed him in class, he appeared to have difficulty sitting still and focusing on tasks.  During recess he did not attempt to engage in social contact with either teachers or other students.  He spent the entire time trying to find a way to flick saliva without getting stopped by a staff member.

    In my professional opinion, I thought Allan's sensory issues and his inability to communicate his needs or desires prevented his full participation in school activities.  I began to see Allan twice a week for occupational therapy.  He also received speech therapy twice a week, play therapy once a week, and music therapy once a week.  Allan was enrolled in a special ed. class, with a 3 to 1, student to teacher ratio.

    In 6 months, Allan was able to participate actively in circle, his self stimulatory behaviors decreased, he occasionally made social contact with staff members, his anxiety appeared significantly reduced, and he could speak in two to three word sentences!  He was also able to tolerate more outings and new experiences! 

    How did I help Allan to reach his goals?  I had to find and use his inner motivation.  I had to start at his level.  In the beginning, he's only comfort was the visual and tactile stimulation of flicking his saliva.  I had to give him a replacement behavior that gave him more satisfaction and the means to communicate his desire for it.

    After trying water, I tried bubbles to entice him.  It was a success!  He absolutely loved it!  But how would he request for it?  Since communicating his sensory needs was vital to his progress, I began to work on recognizing and communicating his needs.

    The first time I used bubbles, I used it freely without expecting him to request it.  During other tasks, I would bring out the bubbles when I could see that he needed it (i.e. fidgeting, frustrated, decreased attention, attempt to run, etc.).  It was important to show him that bubbles was more effective than flicking saliva.  It's usually ineffective to try to explain why a behavior is inappropriate to a child that isn't using words to communicate and who doesn't know any other way to satisfy his sensory needs.

    It was also important to show him that I understood his sensory needs and that I wouldn't try to prevent appropriate sensory seeking.  It was also a way to build his trust in me.  This trust would become the foundation of therapy.  I always take time to build this trust, so my client will try things they wouldn't normally try.   

    The second time, I placed the bottle within sight, but not within reach.  This time I waited until he looked at the bottle, before saying, "You want bubble!"  Then I would reward him with extended bubble time.  I would still give him bubble time without request, if he needed it, but the amount of time would be shorter.  Eventually, he learned that requesting bubbles got him greater satisfaction.  "Ah-ha!  Communicating gets me what I want or need!"

    At the fourth session, he began to reach for the bottle.  I would immediately affirm what he wanted and give him extended bubble time.  By the sixth session, I put the bottle right in front of me.  This made it possible to make eye contact before rewarding him.  Eventually, he would initiate eye contact and I would reward him with extended bubble time.

    When he was consistently able to make eye contact to initiate communication, I would ask him to approximate the "b" sound.  At first I would reward any attempt because it was obviously difficult.  He would use his whole body to try to get the sound out. 

    When he was consistently able to approximate the "b" sound, I would ask him to say "ba-ba".  Every time he mastered a request, I increased the difficulty.  Every initial attempt was rewarded with extra time.

    Eventually, he was able to say "bubbles", "want bubbles", and "I want bubbles".  The first time he was able to say the full sentence, I rewarded him with bubbles for the rest of the session.  It turned out to be a turning point.  He began to communicate his needs and desires in words.  He began talking all the time!

    This wasn't the only thing we worked on in therapy, but it was a focal point.  Obviously, speech therapy and classroom staff also worked on communication as well.  But in OT, the focus was on recognizing and communicating his sensory needs and using appropriate sensory stimulation.  AS the results show, we reached these goals. 

    How do I know it was the therapy?  Because each session was focused on smaller goals.  Whenever we achieved these smaller goals, I readjusted the goals for the next session.  Reaching these smaller goals helped me to assess if therapy was working.

    How do you know if therapy is working for your child?  Ask your therapist for more details about the short term goals.  Walking may be the long term goal, but what stepping stones will be achieved first?  What methods is the therapist using to achieve these goals and how can you supplement at home?

    Actually providing therapy at home will help you see, or actually feel the progress.  You'll feel how your child needs less and less help.

    The parent above was asking me about her son who was suffering from difficult bowel movements.  He would only have one bowel movement every 14 days and it would cause him pain for two hours.  He had suffered botulism as a 4 month old and spent a month in NICU.  I showed her a few Masgutova techniques and a few therapeutic massage techniques as well. 

     The next day she reported that her son immediately started to pass gas after the first session.  Within 24 hours, he had a "stealth bowel movement".  For the first time, he had a painless and uneventful poop session.  I suggested she continue treatment for 4 weeks.

    For two weeks she followed the suggested regimen with several resulting "stealth poops".  However, illness delayed treatment one week.  He immediately stopped pooping.  She continued therapy again and eventually saw permanent results.  She was convinced that these techniques had worked for her son.

    How about my son?  Yes.  Therapy has definitely helped my son.  I can tell that his movements are not as smooth on the days we miss therapy.  In fact, when he was 4 months old, we took a 2 week therapy break.  I wanted to enjoy being together without thinking about strokes, therapy, or the future.  We had a great time, but his development definitely slowed down.

    After the 2 week break, we started a more relaxed version of therapy, by fitting it in throughout the day.  I also don't stress out if we miss specific techniques for a day or two.  We do what we can and enjoy being together. 


    Thursday, November 24, 2011

    I understand now...

    Going home!!

    Therapy for my son formed into a system organically.  Since it was my first time working with a newborn, I had to figure out how to apply treatment methods in a whole new way.

    The hospital did not send me therapy right away.  The doctors figured we'd wait and see, but that didn't make any sense to me.  When treating adults who suffer strokes, we know that we see the most gains within the first 6 months after the stroke.  Then we see slower, but steady gains for the first 2 years.  After 2 years, the gains are slower and sporadic.

     Of course, children's' brains are more flexible.  The timeline is probably different.  But why wait to see a problem?  Why not help the brain create healthy pathways from the start?

    That's why I started therapy the day he came home.  I didn't want to take a chance that his brain would have difficulty creating pathways so he could reach his milestones.

    Honestly, it was really hard.  I was frequently overwhelmed.  I couldn't believe how all the parents I worked with survived.  My respect for all parents with special needs children increased with a deeper understanding that comes only with a shared experience. 

    It took me 6 months to come out of my shell and look for support.  I was really surprised to find a large community of supportive parents sharing their experience with the world.  I don't know how many times I cried and felt inspired by both the children and their parents. 

    So for all you amazing parents...and their even more amazing children...Thank you for sharing your life!

    I hope to use this medium to share our story, find solace in the midst of craziness, and share my knowledge with anyone who might find it helpful.

    Wednesday, November 23, 2011

    Treating a baby stroke

     How do you heal a baby who suffers a stroke?  I asked the same question too.  Although I've been an occupational therapist for 15 years, I worked with patients 3 years old and older.  I really had no experience working with babies!  It's also my first experience having a child, so I pretty much had no experience with babies at all.

    I'd often wondered what it would be like to be a parent to a special needs child.  I worked with a lot of parents and often empathized with their situation, but I knew I didn't understand what it was really like to be in their position.  How do they do it?

    The answer was simple, they don't have a choice.  It's a steep learning curve and it's really overwhelming, but you just don't have a choice.  You have to use all your resources to help your child reach their potential.  You do what you can and you accept that it might not be everything you wish you could do.

    Though I wish my baby never had a stroke, we are lucky that I'm a trained therapist and my learning curve is not as steep.  I was able to get extra training and successfully treat my child.

    Truthfully, I'm amazed at how well he is doing!  I really didn't expect these amazing results!  Though he will continue to need therapy for some time, for now he is reaching all his milestones.  The future seems brighter for my little guy!

    In this post, I will just give the overall treatment methods.  Unless you're a therapist, some of them won't make any sense.  However, future detailed posts will hopefully be understandable to everyone.

    Treatment Methods

    1.   Masgutova Method
    2.   NDT (Neuro-developmental Treatment) or Bobath
    3.   Sensory Integration Treatment
    4.   Therapeutic Activities/Exercises
    5.   Cognitive Rehabilitation
    6.   Breastfeeding (I know this can be a hot topic, but there are reasons why I list it here)
    7.   Co-sleeping  (Another hot topic, but bear with me.  The reasons are therapeutic)
    8.   Using baby carrier 3 or more hours a day...for therapeutic reasons
    9.   Therapeutic Massage
    10.  Other...all the things that may not have an official name

    What was I treating?

    1.  Right-sided weakness of arm, trunk, and leg
    2.  Left-sided weakness of left face/mouth muscles
    3.  Right arm spasticity (increased muscle tone)
    4.  General extension posture (head, arms, legs pulled towards back)
    5.  Sensitivity to tactile input (touch)
    6.  Sensitivity to vestibular input (movement) and hearing
    7.  Fine motor problems

        Wow!  That was hard to write.  I've been so busy "doing" that I didn't have time to reflect until now.

        So this is just the beginning.  I will be describing each treatment method, how I applied it to my son, and why I used the specific methods.  I will also be sharing our adventures as they happen, for I wouldn't want you to think that we just do therapy!

        Thus we must end with a cute picture!

        Baba at 5 months

        I know he's my son, but can I gush a little?  Isn't he adorable?

        Sunday, November 20, 2011

        My baby is in NICU

        This is the narrative of my first visit to NICU, when I knew about the seizures, but not the stroke.

        The entrance to the NICU is guarded.  They check our identification bracelets and let us in.  We pass 3 separate NICU rooms, turn a corner, pass the staff room, and face a closed room.  Just briefly pausing, my sister opens the door.

        A large island counter blocks our way, so we awkwardly move my wheelchair out of the way so my sister can close the door.  Large mechanical incubators are pushed up against the walls. 

        They look like they’re swallowing their babies.  Next to them are smaller machines beeping, demanding our attention.  

        “Baby’s heart rate down.”  “Baby’s oxygen level low.”  “Baby’s having a seizure.”

        My sister and I look around, trying not to look at the babies, afraid to see their pain, their loneliness in this cold, medicinal room.  I feel like I should know where my baby is by some mommy instinct, but I don’t.  I’m already failing in motherhood 101.  

        “What are you doing here?”  Someone asks.  That’s what I hear, but I realize she asked if we needed help.

        “I’m here to see my son.”

        “What’s your name?”

        My sister murmurs my name after she realizes I look confused.

        “Right corner.”

        “Baby’s heart rate down.”  “Baby’s oxygen level low.”  “Baby’s having a seizure.”

        In a brightly lit corner, my son is being warmed by a machine simulating my heat.  My sister pushes me close and I can see him through the glass, sleeping.  He’s so tiny.  He can’t be sick.  It just isn’t right.  I reach out to touch him, but the nurse interrupts.

        “You have to suit up.  He might have an infection.”

        She hands us two paper gowns, two masks, and two pairs of gloves.  

        How will my son recognize me?  At least he’s sleeping.  He won’t be scared of the giant yellow monster.  He’s on his back, but facing away from me.  I can’t see his face.  I can’t see his face! 

        I wince through the pain and use the mechanical heating machine to support me as I stand up.  
        His face looks so peaceful, but then he frowns.   

        Where have you been mommy?  How could you leave me?

        No.  I didn’t leave you.  I’m here.  I’m here my son.  

        Look at what they did to me.  They hurt me.

        His hand moves towards me and I realize that it’s splinted and a needle is stuck in his tiny little hand.  The same needle that hurt like crazy, when they stuck it in me yesterday, just in case they needed to medicate me for labor.  His needle is hooked up to an IV, half his size.  I wince, feeling his pain.  How did they get that thing in his hand?  

        I look up at his face and realize that his little hat has a hole on top and a mass of wires are protruding from his head.  Suddenly a wining noise starts and I see that his other arm is attached to a blood pressure cuff.  It takes his blood pressure and beeps.  Are those numbers supposed to be normal?  I look down at his heart, a metal duck is stuck to his chest, with a wire attached.  As my eyes follow the wire, I see another wire stuck to my son’s foot.  It’s flashing a red light.  

        I look back up to his face.   As if on cue, he frowns again.  Something bursts inside me and the dam overflows, flooding my face.  I don’t know why I’m crying.  I know that the wires are just monitoring him.  They don’t hurt.  He’s not on life support.  Yet I can’t stop the flood of tears streaming down my desperate face.  My sister starts to cry too.  We cry silently.  Trying to hide our tears from my sleeping son.  My son who cried when I yelped in pain yesterday.

        It took 15 minutes before the nurse noticed our silent tears.  

        “He’s okay.  He’s on medication to control his seizures, but otherwise he’s doing well.”

        Words could not be formed.  I just nodded and continued to cry for another 15 minutes.  

        Saturday, November 19, 2011

        My baby suffers a stroke...

        Seven months ago, the future of my son was bleak and uncertain.  On his first day of life, he suffered a major stroke to the left side of his brain.  He was suffering from seizures and he was living in the NICU (Neonatal Intensive Care Unit). 

        As an occupational therapist, I knew that his life would be different from the one I had envisioned.  I was prepared to accept that my child would be different.

        I was ready to deal with right-sided weakness, trouble breastfeeding, trouble holding up his head, trouble rolling, trouble sitting up, trouble swallowing solid food, trouble crawling, and many other milestones.

        I prepared my heart and mind for the challenges to follow.  I was going to be a super mom/therapist.  I would do everything in my power to help my son reach his potential.

        I knew it wasn't going to be easy.  I knew my own illness would make things even more difficult. 

         Almost 6 months old

        Things didn't turn out as difficult as I imagined.

        Not only is he reaching his milestones, he's reaching some of them ahead of schedule!  How did we do it?  That's coming next!  Stay tuned!