January 2013 - Lalo's newest trick

It's embarrassing how long it's been since I've posted.  Lalo is 2 years & 4 months old now and big brother Caleb is 3.5 years old.  To make up for the blog silence, here is a little clip of our monitor today during nap time. Lalo can pull to stand! For an added bonus you get to hear him singing Frosty the Snowman :-) 

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.

Adios 2011!

Merry Christmas and Happy New Year! <3 Caleb & Lalo

Well I suppose now that the holidays are done, I can't use that as an excuse for not blogging.  I promised myself I would share at least one little update before we wrap up 2011, plus I will share a picture of these two cute distractions.

Things have actually been fairly mellow around here.  Lalito was still throwing up and refluxing even on J feeds.  He has had a few GI tests, but they didn't really give us much in the way of answers - just that he has a small stomach and somewhat slow emptying.  It has basically come down to us trying to figure out how/if we can move forward.  We made the decision to start using the G tube again, so that his feeds are going into his stomach.  So far we have been doing G during the day and J overnight, to minimize the risk of him throwing up in his sleep (really in our sleep is the issue). We have also been including small amounts of blended table food into his diet.  And then we are very, VERY slowly increasing the rate that we are feeding him so that he will get more breaks in the day.  The past week or so he has been ok, still throwing up a handful of times a day and arching a lot, but not absolutely miserable.  We feel like we have a couple of options left to try, and if we don't see any results we will probably start seeking 2nd opinions from other leading east coast hospitals (or further if need be). 

Lalo had also been having some issues with his right shoulder and balance following his surgery this fall.  His therapists thought possibly his shoulder was subluxed or dislocated.  Also, when we were fitting him in a new piece of therapy equipment, they thought he might have a slight difference in the size of his legs or also possibly a hip subluxation.  However, we saw an orthopedic surgeon in the beginning of December and based on his exam and xrays he said Lalo doesn't have any of these issues.  He also didn't see any signs of scoliosis, which can be quite common in cdh kids, as well ase kids who have had strokes.  We also got the all clear from the opthomologist to wait another nine months before coming back.  He does have some issues with his right eye floating a bit, but he wants to just see how the brain rewires to see if it corrects itself.

Lalo is really making some progress with speech.  He has about 10 words and has figured out how to tell us he wants something.  We are very anxious for him to gain some type of mobility.  He can roll, but doesn't often.  I think part of this is that now that he can sit, that is the position we have him in most often.  He can't transition himself between sitting and lying, so we have to decide at any given point what position he's in.  I think it will be so huge for him when he can decide if he wants to be sitting or lying, on one side of the room or the other, kitchen or living room, etc.  He has gotten two pieces of therapy equipment lately - one is a stander that basically straps him in frankenstein-style to put him in the standing position and get him weight bearing on his legs/feet and the other is a gait trainer - that is similar looking to a wheelchair but he stands instead of sits and we can wheel it and help teach him to use his legs to move. The poor guy also has his molars coming in right now.  He loved the wrapping and tissue paper this Christmas the most.  If only gift bags were full of calories...

Caleb is doing wonderful.  He speaks in paragraphs and we can have great conversations with him.  He is growing an inch a night it seems like, I'm not quite sure what happened to my little tiny baby boy.  He is a wonderful eater, often Lo and I exchange the "holy crap - this kid is going to eat us out of house and home one day" glance across the dinner table.  He also convinces us to read about 17 books a night to him ;) He really enjoyed this Christmas season - he loved looking at the lights, was so proud that he got to put the star at the top of our tree, and he nicely tolerated my obsession with Christmas music.  We still have a pile of presents under our tree because he is a dedicated player... he opens one gift and could care less about opening any more because he wants to play with that one for two hours. 

Oh what a year it has been! Plenty of good, but our fair share of bad too.  I think I can definitely say we are looking forward to the new year.  With any luck, I should be headed back to work part-time in the next few weeks and that will be a whole new chapter for us.  We have plenty of resolutions for the new years, but for tonight we are focused on overeating and laughing with some of our good friends and their kiddos. 

May you and your family have a blessed New Year!

MRI Results

Lalo has been doing good since surgery.  Recovery was SO much easier this time.  I think the most painful part of the last 2 weeks has been his two front teeth pushing their way through.  He is still having some issues with throwing up and refluxing, though it seems to have slowly improved a little bit.  The surgeon still wants us to drain his stomach to minimize the throwing up which puts strain on his diaphragm.  We go back in 2 weeks to evaluate again. 

We finally had his MRI on Tuesday and Thursday we went to see the neurosurgeon to discuss the images.  Lalo did great with anesthesia as usual (little ones have to be sedated so they stay still). The breathing tube did help turn his runny nose into a nasty cough, but luckily no ER issues like last time.  The visit with the neurosurgeon went great - no new issues!  His view is that the digestion issues Lalo has are not neurological.  He also is confident that Lalo's head is growing appropriately and there are no issues with plates fusing too early.  The main reason he wanted the MRI was to follow what would happen to the brain physically after such a big injury.  Our understanding was that the left side of the brain would not grow where the injury occurred.  What we didn't realize is that the part that was damaged basically disintegrates.  Instead of damaged brain in that area it basically just becomes a fluid filled space.  This actually makes it a lot easier to visualize what happened to him on the latest MRI images.  Practically all of the left side of Lalo's brain is gone, as well as a few other smaller areas.  The neurosurgeon said in an adult this would be devastating, it would mean absolutely no movement on the right side, as well as no speech.  Lalo has the advantage of time and neural plasticity though, and we will watch to see how Lalo is able to wire what is left of his brain to take over those functions. 

You may think an appointment with your son's neurosurgeon who shows you pictures of approximately 50% of his brain that remains would be depressing, but quite the opposite.  Take a look at the video I took last week and tell me it doesn't make you grin ear to ear...

I promise to put up some recent pic soon, I just wanted to share the good news first. 

Home sweet home

We are home as of last night.  Lalito did a great job tolerating his feeds as they switched him from IV fluids to formula through his j-tube.  His pain was pretty well controlled first with IV morphine and then oxycodone after he was up to full feeds.  Yesterday around noon they pulled out the chest tube, which made him a lot happier and I could finally pick him up.  The chest tube is a relatively small tube put in during surgery between the ribs and into the lung area to drain any excess air, fluid, or blood - it is G-R-O-S-S! Plus, I can't imagine it's very comfortable to have in, so needless to say I was very excited for it to come out.  Unfortunately, they weren't able to arrange scheduling our MRI until Friday at the earliest.  Since Lalo was up to full feeds at this point, his pain was controlled and he was off of the IV, we just needed a good xray and we got to leave.  It was a pretty quick recovery stay, but our surgeon is all about getting him out of the hospital full of sick kids.  The last thing Lalo needs is to catch something while he is at the hospital. 

We were all thrilled to be back home last night.  Both boys slept wonderfully and so did we.  Since Lalo had been doing great with not throwing up since surgery and very minimally even since our ER visit last week, we decided to try keeping his g-tube clamped (before we were basically letting his stomach emptying out through the tube to minimize him throwing up the normal, more painful way).  Unfortunately, he threw up 3 different times today and since the surgeon really doesn't want him throwing up, we unclamped it again. He again had some bile drainage and threw up one more time.  With any luck, this passes as his system recovers from surgery.  Overall Lalo is very happy and not in very much pain.