A moment to remember #5

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Have a lovely weekend!

When bad things happen...again and again

 We lost 5 months worth of pictures!  We were attacked by a horrible computer virus.  A virus so bad, that we had to erase and start over.  We had been backing up everything on a portable hard drive, but today we found that it didn't save our photos!  It saved everything we didn't need, but it didn't save my son's photos.

5 months of adult photos is no big deal.  5 months of first year baby photos is horrendous!  He's changed so much in that time.  I can't remember all the changes...but I know there are many.

I must admit, I feel pretty down.  There were a lot of photos.  I was a crazy first time mom with a camera constantly in her hand.  I wanted to document everything...everything!  Sigh...

The good news is that this blog has some of the photos I lost...so some are saved!  It doesn't really make me feel that much better.

Just as my mom survived breast cancer, Baba had a stroke.  Just as we were feeling hopeful about Baba, we got robbed.  Just as we were letting that go, we lost the photos.  I'm scared about what will happen next.  Sigh...

It's okay.  I will be okay.  I just needed to vent a little.  Then  I needed to convert some of the recent photos from RAW format to JPEG and dump them here.  I hope you don't mind...my blogger friends.

 

  

Have a lovely day!

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!

Wearing Baby and Sensory Integration-part 4

If you haven't read part 1, part 2, and part 3.  On a side note, I am not being compensated for any of the products, I'm just sharing what I've used.  It may or may not be useful to you.  If you want to see more information on the product, I provided a link on the caption for your convenience.


Before Baba was born, I bought the Bjorn carrier.  It seemed to be a good fit and I liked that baby could be faced forward.  However, when he suffered a stroke the Bjorn didn't have the positioning I wanted and it was hard to get him out after he fell asleep for naps.  I started to look at other types of carriers, but I was overwhelmed.  Some books I read absolutely warned against slings and I couldn't decide which carrier would give me the positioning I wanted.  Why was positioning important?

Bjorn Carrier

Since Baba had a stroke, apart from the sensory issues, he also began to develop spasticity.  His right arm would catch when I would try to move it and it seemed to be getting worse.  He also had a tendency to draw his arms and legs backwards.  This positioning of the body is typical of babies who suffered a stroke.

favoring this position at 1 month, 2 weeks after discharge from hospital

Before I ruminated too long, my sister bought the Balboa sling.  She knew I was looking for a different type of carrier and figured we could try it.  It turned out to be perfect.  The sling put Baba in a flexed position, which broke up the extension tone.  It also provided proprioceptive input (deep touch). Which is comforting.  This combination of proprioception and vestibular input helped Baba tolerate movement without getting motion sickness.  It also helped him tolerate a flexed position for a few hours a day.

Baba in Balboa Sling at 1 month, same day as above

Within a month, Baba displayed decreased spasticity (We were also co-sleeping for positioning.  A post about that is coming in the future.). He also stopped favoring an extension position and began to play with his hands.  It was so exciting to see him start to explore his hands.

Baba on same day as above, after being worn, on Boppy Total Body Pillow

So I used the Balboa sling most of the time, but when we went for walks, I put him in the Bjorn.  He loved facing forward and being able to see everything.  This system worked well, until he got really heavy.  I didn't know the Bjorn had a new back support system, so I bought the old version.  When he was small it didn't matter, but when he got heavy (20 pounds by month 4) it really put a strain on my back.

Around that time, another mom introduced me to the Ergo Carrier.  She let us try it before committing to it.  Baba seemed to enjoy it and immediately fell asleep, so we bought the Ergo.  It has been a life saver.  Baba was starting to feel uncomfortable in the Balboa sling because he was so big, yet he wasn't able to tolerate being on the hip because he couldn't sit up.  It was good timing because he was no longer showing spasticity (increased muscle tone) and he was able to keep his limbs forward.  It seemed like we didn't need to use the sling for positioning anymore.

Baba in Ergo at 6 months

I still use the Ergo for carrying Baba.  He weighed 23 pounds by month 6 and now weighs 25.5 pounds at month 10.  Yes.  He's a big baby!  For a mom with physical limitations, I can't carry him without the Ergo.  This is especially true when he's sick and needs to be carried more than usual.

At 10 months, I carry him for 1-2 hours a day, mostly to help him sleep.  He is still working on modulating his arousal level.  He has a hard time winding down.  He has improved in his ability to tolerate movement and for the first time enjoys the swing!  If I could install a swing at home, I would leap tall buildings, but my landlord says no.  Sigh...

As far as choosing a carrier, mainly it has to be comfortable for both baby and mama.  Try out the carrier/sling and use it if it works!  If you're concerned about positioning, there are alternative ways to work on that.  Ask your OT or PT for specifics about your child's treatment, as spasticity, extensor tone, and sensory issues can be very different and unique to each child.

So what if your baby isn't a baby anymore?  This is when the swing becomes crucial.  Look for part 5, where I also share how I changed an 11 year boy's life with a swing!  Yes, I said swing!

I tried to provide definitions as I wrote, but if I missed something, feel free to ask me in the comments section or by email astrokeofot@gmail.com.

Streaming thoughts of a special needs mom

barely 1 month old

 Today my muscles ache from deep inside, where knots have lived for years.  He needed to be worn all day.  He didn't want to get down.  My muscles screamed, but I ignored they're incessant complaints.  They always hurt, a little rest won't stop that pain. 

When I put him down to eat, he fell.  When I turned away to get something, he slipped.  His body is not cooperating today.  His right foot seems to be lagging behind when he's cruising.  He almost face planted on the activity table.  Is this because we didn't do the Masgutova Treatment Method today?  Can we not skip one day of therapy?  No I guess we can't skip therapy.
 
Sometimes it's hard being a therapist and mom.  Sometimes I wish I didn't know so much about the body and effects of a stroke.  I don't know if I worry more than the average special needs mom, but I worry.  I worry even when things seem to be great.  I worry more when I see him struggle.  I can see the difference when he's having an off day.  I guess I'm not that great on my off days either.  I guess I'm having an off day.

When he cries, it's heartbreaking.  He doesn't cry often, so when he cries it feels like something is horribly wrong.  Did that fall hurt his brain more?  Is that why he's screaming?  No.  He didn't lose conscious or start throwing up.  No.  He didn't have another brain injury.  Falling is a part of learning to stand, learning to walk.  He hasn't learned about gravity yet.  He will.  I hope he will.

It's going to be okay.  He's doing amazingly well.  Yes.  He surpassed all my expectations.  I have to stop having expectations.  I have to treat him like a "typical" child.  He's not sick.  He just has a brain injury.  He's not going to die.  He just has a brain injury. 



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Robbed, but not beaten

We were robbed.   Due to some extenuating circumstances, we had to move from a sprawling two bedroom to a tiny one bedroom.  We didn't have much time and at the time Baba was a newborn, so I couldn't help much.  So we decided to get a storage compartment to hold stuff, until we could slowly organize.  Well, it was robbed. 

I'm very grateful that it was a storage place and not our home, but I still feel violated.  Someone decided that they didn't need to respect other people and it was perfectly fine to take their things by force.  Ugh!  I was going to get rid of stuff and keep only the special things, but the special things are gone.

They stole some electronic equipment, our old CD's, my fashion jewelry, 3 leather jackets, and my nice collection of shoes.  As you can see, none of it was expensive.  It was worth a lot to me, emotionally, but had little market value.  We were mostly worried about identity theft, but it doesn't look like they took paperwork and there is no weird activity on our credit cards.  So these guys (or gals), don't seem to be sophisticated enough for identity theft.  Hopefully.

There a few items they missed.  They didn't find my sister's pink sapphire and diamond necklace, the one I bought her.  Yeah!  It's not really expensive, but it's really special.  They also didn't take my art supplies.  Woo...hoo!

I'm really going to miss my shoes.  Shoes, people!  They'll probably sell for less than $10, but they were worth more to me.  I've been slowly adding to my shoe collection for 15 years.  I had a sizable debt after college, so I didn't have a lot of money.  I also struggled with weight issues and shoes were the only things that could make me feel beautiful.  Most of them were bought on sale, no more than $40 a pair.  I had about 35 nice pairs of favorite heels, a few I had only worn a few times. 

Yeah.  I feel sad.  It's sad that people degrade themselves to the point of stealing.  Since they stole inexpensive items, perhaps they aren't exactly making big money on this venture.  Apparently, someone else was robbed too.  The policewoman was already on the premises for that reason.  Hopefully, they didn't lose really valuable items.

bbrrr!!  I'm still cute!  (5 months)

 I'm sad, but I'm grateful.  They didn't rob our home.  We are all safe.  I didn't lose anything I can't replace, eventually.  Organizing is going to be a cinch.  I get to start anew!  It's not so bad when you like new things, like I do.  Yeah.  We're all going to be okay.

I feel sad about the lost memories of some of the special items, but I guess I'll have to make some new ones! 

They may have taken my stuff, but they couldn't take the most important things in my life.  They couldn't take my dignity, my strength, or my precious memories.  My family is safe.  Yes, the important things are still here.  For that...I am truly grateful. 

Enjoying the simple things!  (5 months)

 I hope you all have a lovely and joyful day!  Thanks for stopping by!

Having fun at 2 months old!

A moment to remember

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Have a fantastic and lovely 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.

Reason to living

 Baba thrashed from side to side on the bed.  He was trying to sleep, but he was so wired from the shopping, from the lights, and from the drive.  He started to vocalize his frustration with "go", "bah", "ugh", and stringing them together like a broken lullaby.  He pressed his tiny form against mine and giggled.  Then he put his hand on my stomach and cooed.  I put my hand on his head and rubbed it.  He looks up and I meet his gaze.  His eyes are dripping with sleep, but full of gratitude and love.  He's 10 months old going on 40 years. 

I feel fuzzy from the pain and fatigue.  He's been sick for days and he's been a little needier, but he's also been exploding with new skills.  He's so excited that he keeps practicing, tiring himself out, then needing to be carried.  He can't just lie around.  He's either on the go or cradled in the carrier.  It scares me.
 
I don't want him to be like me.  I want him to learn to relax, to be at peace with laying still.  I want him to find the joy of stillness and quiet, to not be afraid of the thoughts that are stirred in the silence. 

He closes his eyes and smiles, rolling back to the other side, and let's out a squeal.  He rolls back and touches my thigh, squeals and rolls back.  I keep massaging his head, hoping it will relax him.  He starts to babble pleasantly, as he slams his arms onto the bed. 

I get up and get ready to wear him in the carrier, but my sister comes in and offers to carry him instead.  I gratefully give her the carrier and pick up Baba.  He's used to being carried by auntie.  They've become pals.  As I wait for her to put on the carrier, I wonder what I would have done without her.  She is my rock, my sanity. 

When we were children, I was her little mommy.  I used to take care of her even though I'm only a couple years older.  She says that I raised her, but now she takes care of me.

I watch my younger sister, my first baby, carry my child and I realize that I am filled with love.  There are two people in my life that I love unconditionally, who love me in return.  Isn't this why I push through the pain, the anxiety, and the sadness?

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Auntie and Baba at 6 months old

Photolicious #3: beauty therapy

I took these back in October while wearing Baba on our walk to the community garden.  I just love flowers!

Periwinkle wrinkle

 I love finding tiny flowers and making them large.  It feels like finding little treasures on my sometimes dreary path.  It reminds me that I have to go searching for the treasures in my life because they may just be hiding somewhere outside my current view.

Sunlit Pink

 Beautiful flowers lighten my heavy heart and pushes the anxiety out of my body.  Even if it's a short respite from all the things I must do that day. 

Orange Belles

 Beauty gives me reason to ponder on the beautiful things in my life, even though the ugly ones still loom.

Purity

These two pictures are of the same flower!  It reminds me that things can look different from a different point of view.

sun drenched

Sometimes, what's underneath is brighter than what's on top.  I might have to take the effort to bend my knees and look more carefully.

red fire

What do you do to help you through the hard times?  Did you find a little peace of happiness this weekend?

I hope you did!  Have a lovely rest of the day!

My bad, mommy bad...

This was supposed to be posted yesterday, but life happened. Thought I'd post it before I had to trash it. Have a great weekend!

Baba has the flu.  He was cranky for a couple days and I was starting to get irritable too.  I was having visions of putting him in a naughty chair, when I finally realized he was sick...drippy nose.  The mild fever didn't clue me in.  Mom's a dunce!  Every time he's gotten cranky, he ended up being sick or teething or both.  When will I finally figure that out?  Poor kid, he got the inexperienced mom.

snot wipe emergency!

He probably caught it when this 3 year old kid decided to pet him...on the face!  I was so shocked that I just stood there completely taken aback.  He didn't mean to be rude, he was just touching my son all over his face in an annoying way!  Actually, I was torn between thinking it was sorta cute and really rude!

cute or annoying?

Baba was shocked too and just froze.  Mom's not coming to the rescue.  He finally looked up at me and I gave him a big smile.  After all the kid wasn't trying to hurt him.  Baba chuckled!  Yup.  My 10 month old thought the 3 year old kid was a crack up!  Then he simply crawled away.  You might not believe me.  You might think I'm just seeing what I want, but he has "won" these battles with other kids.

Once, while looking at the Koi fish in the pond, Baba spotted a 7-8 year old girl, not surprisingly she was beautiful.  He definitely prefers pretty girls!  He stared at her for a few minutes, while she was looking at the fish.  They were on a mini platform, so she was kneeling on it and he was crawling.

staring

At some point, she realized that he was staring at her, he was only 10 feet away.  She looked a little confused because he was staring at her intensely.  Suddenly, he started crawling towards her, the little guy had intent.  She froze and looked scared.  My sister had to scoop him up before he rammed into her!

not watching where he's going

"hmm..."

In retrospect, I think she was blocking the path and he decided to crawl around her.  He was probably checking to see if he could take her.  I think he smelled fear.  He was right.  That poor girl looked frightened.  When do you start teaching manners?

Update:
Auntie says that he was actually going straight for her, that's why she was scared.  She was closer...so she would know.  I guess I can't be annoyed by the boy who petted his face!

"what's this?"

Anyway, I'm so tired!  I feel like a walking zombie (as opposed to the one that's still in it's tomb)!  My sister has to repeat everything twice and I still don't get it.  He's attached to my hip and won't let his auntie carry or play with him.  Ugh!

"mom hasn't figured out that I'm sick"

To say I hurt would be an understatement.  Colossal understatement!  I used to be able to take Vicodin to take the edge off the pain, but breast feeding and narcotics?  Let's get him addicted early!  Aahh!

So I must pretend it doesn't hurt and play like I'm having the best day of my life.  I just need to convince my brain to release more feel good drugs...along with the ones released with breast feeding!  Yeah!

A moment to remember

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Have a lovely weekend!