May is pediatric stroke awareness month

Hi friends & family,

I know I am seriously behind in blogging, and I promise I am working on an update, but first I wanted to share something with you.

May is pediatric stroke awareness month.  Frequently, I will use the word stroke to describe the brain injury that Lalito suffered on ecmo.  I'm not sure if what happened to him would technically be a stroke, but the results are the same, so it's what I use.  Just like many of the pediatric stroke survivors, he suffers from hemiplegia cerebral palsy, likely vision issues, and developmental delays.  Just one of the many things that we've learned in the past 1.5 yrs is that kids have strokes too, often occurring before birth.  Strokes can be fatal, and frequently cause numerous long term issues.  CHASA - Children's Hemiplegia and Stroke Associations has been a great resource for us to learn and find other people going through similar challenges.  Here is some brief info from their site.  If you are interested in knowing more, please check out http://www.chasa.org/wp-content/uploads/2011/06/chasa_pediatric_stroke_fact_sheet_2012.pdf


Pediatric Stroke - A Few Facts

• Stroke in children is as common as childhood brain tumors, yet most people are unaware that infants and children can have strokes.
• 1 in 2800 babies and between 4 and 11 in 100,000 children will have a stroke each year.
• Pediatric stroke research is severely underfunded.
• Raising funds and increasing awareness will lead to early diagnosis, treatment, and recognition that more dollars need to be directed toward pediatric stroke research.
• Recognize early stroke. If your baby is showing a hand preference (left-handed or right-handed) before the age of 3, call your state's early intervention program and ask for an evaluation.

Thanks for listening :)

Here's Caleb & Lalito, our stroke survivor.
Notice Lalo's right hand in a fist?
Just one of the many reasons that strokes suck!

I will write a blog post, I will write a blog post...soon :-)

January catch-up

Well hopefully soon I can break my habit of only posting once a month :-) I have a ton of pictures that I should be sharing.  But, life is always crazy, so I make no promises.

Tomorrow is a big day for me.  It will be my first day back to work in close to a year and a half.  We found a great nanny to watch Caleb & Lalo 2 days a week, so that I can work.  It is very part-time, but I still want to be the one who runs the show in terms of his therapy.  Lalo has therapy 4-5 times a week, plus a nurse visit every other week, and still lots of doctors appointments, so even 2 days (plus Saturdays during tax season :) ) will keep us insanely busy.  I'm nervous on how well we will manage everything, but excited too to get back to that part of my life.  I think it will be really good for Lalo to have a new caretaker that can focus more on just fun stuff and I think it will be good for Caleb and Lalo to spend more time together.  Wish us luck on this big transition.

Not too much to report with Lalo.  He is getting over RSV.  RSV is a bad cold for most kids, but for kids with lung issues, it can be very serious.  Since Lalo has hypoplastic (underdeveloped) lungs and a history of chronic lung disease, he receives a monthly antibody that is meant to help him fight RSV.  It is very expensive so insurance is stingy about who they cover to get this, but I'm so glad Lalo does because he really fought RSV like a champ.  Too bad I think this is the last winter he will be eligible to get it.

We have also just started a weekly feeding therapist.  Hopefully, we will be able to get Lalo to start taking an ounce by mouth, so we can get a swallow study and make sure it is safe to move forward with a more intensive feeding program.  We are constantly working to move forward on his digestive issues and give him some more hours during the day without his tube.  It's very slow going. Our therapists are also
starting to discuss if Lalo is ready for constraint therapy.  This form of therapy puts a constraint on your good hand/arm, to make you really focus on your afflicted side.  This would surely be a huge struggle for him, but it is supposed to be very useful at gaining more use of your afflicted side.  We'll see what his rehab doctor at Kennedy Krieger thinks in the next month or so.