Our Story: 2 years after a baby stroke

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

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

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

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

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

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

The devastation of yesterday has been replaced by the joys of today.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

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

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

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

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

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

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

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

Baby to Tot

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

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

Creating a masterpiece is fun!

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

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

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

How funny!

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

Our Story: 22 months after a Baby Stroke

"This is how I roll"

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

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

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

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

Thinking before acting

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

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

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

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

More complex emotions

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

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

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

Ready to explore the outside

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

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

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