Owen’s (Third) Letter to Nasal Cannulas

Dear Nasal Cannulas,

It was two years ago on Father’s day that Dad and I were in cahoots and we pulled the ventilator out.  Okay, maybe it was a scary accident to Dad, but I knew what I was doing.  I was through with that vent…well, at least for a week and then I got sick and needed it back, but that’s not the point… the point is, I know when I need help breathing.

Over the last several weeks, I’ve made it abundantly clear to Mom and Dad that I didn’t need help breathing anymore.  I kicked and screamed the minute you touched my face and I proved I can whip you out of my nose and on the floor faster than I can crawl away when Mom is chasing me through Kellen’s floor hockey practice (and that’s pretty fast, just ask any of the onlookers who were giving mom the “wow, he’s a handful” looks of sympathy…hahaha).

I made it as clear as I could to Mom that it was time to call the doctor to have my overnight study, but she’s got this fear of bad news…something about being afraid of jinxing positive momentum.  I mean seriously, she gets all cautious because she’s haunted by that first year, but I keep showing her in every way…I’m just not that same kid anymore.  I’m stronger now and this face is waaaayyyy too cute for a harness on it.  Those dang glasses are bad enough and at least they match my baby blues.

So anyway, this letter is getting a little drawn out…kind of like our two-year relationship…so let me put it to you as simply as I can.

I PASSED!  I PASSED!  Naa Naa Nuh Boo Boo!  I don’t need you!

Oh, and to your little friend pulse oximeter (that stupid monitor that mom punched a time or two…or more).  I quit it too!

Booyah!  It’s good to be a free man.

If you missed Owen’s previous letters to nasal cannulas, you can find them here and here.

The Little Things

There are certain milestones that gets nearly every parent excited. Like this one:

I could watch that video all day long.  That sweet voice and I love how he puts his hands over his face when I show my excitement.  Even better, when I do replay it (over and over and over) he says, “mama”

But sometimes, the little things mean just as much.  Like this:

truckThere is so much in this picture that makes me proud of Owen.

  • Look at the way he’s sitting.  Stretching across those belly scars that prevented him from sitting independently before he was 21 months old.
  • He’s using the toy appropriately.  It’s not in his mouth.  He’s not solely focused on the buttons that make noises and lights flash.  He’s pushing the truck forward, like a real truck would drive forward.
  • Speaking of those buttons, that he does occasionally push.  They are tiny.  To make them work, Owen has to point one isolated finger to softly jab the buttons.  You can’t see it in this picture, but that is some beautiful fine motor achievement, Little Boy!
  • He’s playing independently.  I did not pull the toy out and initiate the play or show him how to use a truck.  Owen found the truck and started playing by himself and decided for himself what the appropriate use of the truck was.
  • When I did sit down to take this sweet picture, Owen pushed the truck towards me.  He was initiating that I play with him.  He can play alone, which is important for his independence, however, he also has social desires to play with someone else when there is the opportunity.

I will watch the “mama” video 100 times with a huge, proud smile on my face, and I have the same pride when I see this picture of a little boy playing with his truck.  These, seemingly, small milestones, are just as important because they are the foundation of the next big thing to come.

big

When Problems Don’t Stink

Whew, Owen is down for his nap.  It’s been a busy morning!  He’s truly on fire lately.  I think he’s starting to live up to the red-head stereo type.  B-U-S-Y!

Busy is actually the way that only a mother could say it.  It’s kind of like when Grandma Sandy remembers Kyle’s teen/college years as “he had fun.”  I didn’t know Kyle during those years, but the stories I’ve heard, definitely sound like fun.  I’ve also nearly cried tears laughing so hard at the mullet pictures.  Yes.  Mullet.  Business in the Front, Party in the Back.  Minnesota Mudflap.  Hockey Hair.  Whatever you want to call it, that God-Awful 80’s do (that apparently was still cool in Kyle’s part of Minnesota in the mid-90’s).  I’d love to post one of the pics on here, but Kyle would be mortified.  I mean really, isn’t that part of what we bloggers are supposed to do?  Mortify our husbands in the most public, shareable way possible?

Oh, that’s right, that’s not the theme of this blog.  This blog is about celebrating the small things that make the way into amazing things.  For Owen, being “busy” (always) is pretty amazing.  We had a joint PT/Speech session and an Early Intervention with PT session this week and everyone is so excited about the things Owen is doing right now.  Fun, fun stuff.  Busy stuff.

Like opening doors.  Nothing is sacred…he can get into any room of the house, including bathrooms.  Joy!  No, seriously.  Joy!  The balance it takes to reach on your tip toes and open a door.  The ability to stretch through the scars covering your core to reach waaaaay over your head and pull down a lever.  The curiosity to explore and cognition to remember what’s behind that door.  The fine motor skills to grasp and pull.  Child proofing never felt so good!

Picture3

There is also a lot of climbing into the dishwasher and pulling out the drawers, silverware, plates and pans.  The help with the dishes can be a little annoying…for about two seconds…and then I think about the fact that he’s interested in helping.  Wants to pull things out of silverware trays AND put them back in.  Traversing a BIG step up.  Stretching his whole body as he pulls open and pushes shut those relatively heavy drawers.  It’s pretty hard to stay annoyed.

busy toddler

And then when I do remove him…he does this!  A temper tantrum.  As in, thoughts and opinions about how he wants to spend his time.  He is learning to negotiate and communicate his wants and needs.  And seriously, that sad face is pretty hard to resist.

sad toddler

I’ve already told you about this type of busy that Owen has started to be…but here he is caught in the act of disconnecting is tubing from the O2 tank.  I posted this picture last night on Facebook and opened it up for captions.  Click the link to add your suggested captions and like your favorites (you don’t need to be on FB to see the captions, but you do need to have an account to comment or like).

toddler on oxygen

What I can tell you for sure, not all problems stink.  Owen is keeping us busy and it’s nothing to do with his health.  I love these problems.  Love them.

Anyone else having some problems that you love that you want to share?

Before I go, I’m feeling a little guilty about telling you about Kyle’s mullet.  Not guilty enough to delete it before hitting publish, but guilty enough that I suppose I should add in some self-deprecation as a show of good will.

You want to know the worst kind of problem?  When you didn’t realize that this was a problem.  Ahh, the hat, the bangs, the perm.  The eyebrows.  (Yes, those eyebrows do deserve to be their own sentence.)  The MC Hammer-inspired, tight on the bottom and baggy on the top pants.  If it weren’t for the buttons, I’m sure I would have tight rolled them.  The serious, look-out-the-window-profile-pose.  1989, I’m glad you’re history.

20130222-123046.jpg

20130222-123059.jpg

On that note, enjoy your weekend!

A note:  I’ve been asked if Owen knocks his Oxygen tank over.  The answer is, no, once he became mobile we started laying the tank down so he couldn’t pull it on top of himself.

Are WE Ready?

photo (60)There were forms for Owen and Kellen.  Being excited for this big step, I started with Owen.  Name, Birthday, Parent’s Names and Contact information all were filled in quickly.  As I got further along, the questions got harder.

With each medical question, the potential scenarios started creeping into my brain.  What if he started crying and they couldn’t calm him and he started having breathing issues like he sometimes does?  What if the other kids are having crackers at snack and he took one and started eating it?  What will we do for feedings?  He’ll only be there for 3 hours so shouldn’t need food, but if he’s thirsty from playing outside, he may not be drinking from a cup yet.

I started to think, “is Owen ready for a few hours of school each week?”

Then, I got to the question asking, “What do you want most out of this Early Childhood experience?”   The answer was easy,

Owen to have the opportunity to learn from, and play with, his peers.

That question helped me realize that it’s not Owen who needs to get ready for him to go to school.  Of course he’s ready.  He loves to go to school to drop off and pick up Kellen.  When we arrive, Kellen and I go to his locker to get off his coat and boots and Owen crawls into the classroom like he owns the place.  He doesn’t interact with the other kids much (as is developmentally appropriate for someone at his level), but he loves to be in a space with other kids and willingly plays with the teachers.  Just like most kids, he loves music, playing games, discovering toys and socializing with the teachers.  I really believe it; Owen will love school.

Not only is he ready, he will benefit greatly from regular social experience with his peers.  The program would have one teacher dedicated to Owen but they will participate in the classroom setting with typical needs children.  This 1:1 teacher would be trained on Owen’s specific needs.  She probably will have had several students with g-tubes in the past and will be trained in epi-pens and what breathing issues are concerning.

It’s not Owen who may not be ready.  It’s me, who needs to get ready to TRUST his care to someone else.  It’s me who needs to look at Owen and see how far he’s come and give him the opportunities to continue going further.  I need to realize that I won’t always be the best/only person for that role. I need to know he’s ready.

I still have 6-9 months to come to terms with Owen going to school a few hours a week.  Applications are due this month, program acceptance is announced in March and Summer Program starts in June and the regular school year starts in September.  I’m sure this won’t be the last you hear on the subject, but for today, WE are ready.  (Now, we just need a healthy cold and flu season, so there aren’t any big set backs).  We also need the school to have open 1:1 spots.

Owen’s TV Debut

I hope everyone is feeling full and content from a wonderful Thanksgiving! I know I said I wouldn’t post today, but we had a visit from WCCO reporter Rachel Slavik and cameraman, Joe to do a story on Owen’s first time enjoying a Thanksgiving meal. Thought you’d love to see a little slice of our day in this newsclip.

Also, thank you, Cate and Rita at Gillette Children’s Specialty Healthcare for taking an interest in Owen and helping spread his story.

Here’s a (very grainy) picture of Owen watching himself on TV.

20121122-213916.jpg

Eating Update

I haven’t talked a lot about Owen’s eating progress and so wanted to update you on what he’s up to these days.

Background:  At the time of his feeding evaluation in August, Owen was not swallowing food.  He also would not allow me to put anything in his mouth.  He would take a spoon from my hand and then use his other hand to wipe off most of the food from the spoon, stick the spoon in his mouth and would drool out any food that happened to still be on the spoon.  At his evaluation it was determined that he was physically able to eat, but he had no interest and needed help with his skills.

How is he doing today:  I’m sorry to be that parent that brags about their kid, but the changes in Owen’s eating in just two months of therapy, is by all accounts  pretty amazing.  He still has a long way to eating steak, but he’s made great progress for such a short amount of time.  He went from eating nothing to now eating 2-3 containers of 2nd baby foods every day.  Not only is he swallowing, he’s allowing me to feed him and I no longer have to sneak the spoon into his mouth.  When I put the spoon up to his mouth, he opens his mouth to take in the food.  He also puts a variety of crunchy/puff foods in his mouth and swallows a small portion of these bigger solids.

He’s doing so well on his feeding that the therapist and I decided that his appointments will now focus on fine motor skills – rather than eating.  I’m sure we’ll go back to eating again, but right now he’s moving at a pace that it’s not beneficial to try to push him any faster.  Early Graduation!!  I will continue working with him on eating at home and each week when we meet, give a verbal update and ask any questions, but the bulk of those appointments will be helping Owen use his hands to manipulate objects.

What is working for us:  The big thing we’ve learned about Owen’s personality is that he has to want to do things.  If he wants to do something, he will figure out a way to do it.  For example, well before he could crawl, he figured out how to scoot on his back to get where he wanted.   Once he’s motivated, he’s very tenacious in his practice.  With that in mind, the key for Owen was giving him every opportunity to taste foods and find the items that get him excited.

I’m having the most luck finding these items at Trader Joe’s for three reasons.  1) They have a wide variety of snacks that do not have egg or wheat.  2)  Owen seemed to prefer stronger flavor profiles than what was offered in baby foods.  3)  At Trader Joe’s you get a big bag of snacks for $2 and at Target the tiny tin of Gerber L’il Crunchies is $2.50+ – much better value at TJ’s especially since Kellen likes to sample whatever Owen is eating.  From Trader Joe’s we get dried banana’s and apricots, cheese puffs, cheese crunchies (generic Cheetos), dried pea pods, potato strings and generic pirates booty.

None of these favorites of Owen’s are highly nutritious  but he really doesn’t eat much of them, he just sucks and chomps and then spits them out.  What they do, however, is give him flavors and objects to try and distract him when I come in with the spoonful of the more nutritious options.  When there are not crunchy items for him to try on his tray, he will not participate in eating the purees.

The result, is a complete mess.  I end up picking up handfuls of mushy, half eaten, “crunchies” off Owen, his high chair and the floor.  It’s not the way I’d choose for him to eat, but it’s what’s working and so I don’t mind sweeping my floor 3 times a day and mopping it every other day.  Well, okay, I do mind, but, first thing is to work within Owen’s comfort and then bring him slowly to my comfortable place.  Anyone who knows me will say that I’m Type-A, as in, I like control…a lot, but I’m learning that I can best control this situation by giving Owen the control he needs 🙂

The other thing that we do is really work to make eating times fun.  I sing to him, make animal sounds, talk to him about what he’s eating, repeat after his babbles, sign “more” and “eat” when appropriate and if nothing else, make goofy faces at him (all things that will never show up in a video).  If he wants to play with a spoon or six, he plays with a spoon or six (seriously, I’ve used 8 spoons for one meal).  If Owen shakes his head “no”, I try one more bite.  If he shakes his head “no” again, we stop.  If he gets visibly upset, we stop.  When he finishes a container of food, he’s rewarded by getting to play with it.  When we are done, I sign and say, “all done”.  He is now getting to a place that before we eat, if I sign and say, “eat”, Owen shows excitement.

The biggest lesson I’ve learned is there is no magic formula.  It’s trial and error and very messy and mostly very slow.  We got lucky and found something that worked for Owen pretty quickly, but we still have a long way to go before he’ll swallow something that is not a puree.  Owen’s nowhere near losing his g-tube, and that’s not even a goal that I have in my focus.  I try to keep the goals really tiny and incremental so I don’t get frustrated and give up, because if I give up, Owen’s going to give up.

Wish us luck, there is still along way to go, but all progress is worth celebrating!

What’s working / has worked for everyone else?

Some of the “crunchies” that Owen likes.

 

Owen chewing on a dried pineapple for the first time. Note all the mushy crunchies on his shirt (we normally use a bib, but he’s about to get changed).

 

Sweet Recognition

One of the many silver linings of having a special needs child is that as a parent you notice EVERY milestone.  Actually, I often make up my own milestones as they come, so there aren’t many days that I don’t get to have a proud mom moment.  Monday Owen’s milestone was especially sweet and I had to share.

With, just the two of us in the room, we were laying on the floor together and looking through pictures of our family saved on the iPad.  With each picture, I was telling him who was in it.

“Owen.”  he looked at the screen

“Kellen”  he looked at the screen

“Kellen and Mommy”  he looked up at me

Daddy and Owen” he looked at the screen

“Kellen and Owen” he looked at the screen

“Owen and Mommy” he looked up at me

“Daddy and Mommy” he touched the screen and then looked up and touched my cheek

Ahhhh – moments to never forget.

 

What is Periventricular Leukomalacia (PVL)?

I’ve mentioned both in this ANRC blog and CaringBridge that Owen has a form of brain damage that is a risk for babies born as early as he.  I’ve never spent a lot of time describing it for a few reasons.  1) We needed to come to terms with it.  2)  It often seems to me that scientist know more about Jupiter than the brain, so it’s not easy to explain.  3)  Knowing what it is doesn’t give a ton of insight into what it means to Owen.

However, implications are slowly coming to light – especially with his eyes – and so I figured its a good time to put a name and brief description to the brain injury that Owen has and why it affects some of the medical and developmental decisions we make for him.  As is the case with all medical information on this blog, remember, I’m a mom, not a doctor.  I do my best to convey the information, as I understand it.  I’ve included links to some sites on PVL so anyone with further desire to learn can get it from the true experts.

What is Periventricular leukomalacia (PVL)?  PVL is an injury to the inner part of the brain that transmits information from one part of the brain to another.

This image from the University of Maryland Medical Center website shows the area of the brain that is injured with PVL

What causes PVL?  PVL is most common in premature infants.  Those especially at risk are born before 32 weeks, weigh less than 1500 grams (3.3 lbs), are very ill due to infection at or near birth and require PDA surgery.  Basically the smaller and sicker you are, the greater your risk for PVL.  For reference – Owen was born at 24 weeks, 5 days, weighed 800 grams, had multiple infections, including one extremely bad in CMV and had PDA surgery at 8 days old.

What are the outcomes of PVL?  PVL outcomes depend on the extent of the damage and specifically where the damage is.  PVL can occur on one or both sides of the brain.  PVL with Cysts (truly dead, not just damaged areas) is more advanced injury.  The greatest risks are Cerebral Palsy and/or Developmental delays, vision and hearing disturbances, mental retardation, learning difficulties, epilepsy and behavior problems.  Every child is different in terms of how well they are able to compensate for the damaged areas and early intervention through physical, occupation and speech therapies is essential in helping the child reach their maximum potential.  Some children with PVL are only developmentally delayed and eventually “catch up” while others are physically and mentally impaired for life – the variation is great.

To what extent is Owen’s PVL?  Owen has bi-lateral (both sides) PVL with cysts.  The area of damage is relatively contained.

What are the expectations for Owen’s abilities in regards to his PVL?  I’ll refer you to the Known Unknown post for the best answer to this question, but essentially his eyes are the first confirmed issue due to PVL.  We also know that Owen has significant development delays – especially in gross motor and language skills, but that could just as easily be explained by the extent of trauma and illness that he faced in his first year.  Owen’s development is tracked very closely by many doctors, therapists, a special education teacher from the school district and, most closely, by Kyle and me.  With each day and every skill that Owen masters, I get more optimistic.

If you’re interested in learning more, below are some of the resources I found most helpful in understanding Owen’s diagnosis.  The below are summaries, but I’ve also spent a lot of time reading research in medical journals. If you are a parent of a child who has PVL and would like to learn more about how to get to those articles, feel free to contact me.  If you’re wondering how to cope with the new of PVL, I’ve shared our story here.

Emedicine, Medscape Reference

National Institute of Neurological Disorders and Stroke

CP Parent 

Children’s Hospital Boston

Eye and Lung Updates and Farewell Scout and Dolce

Wow, we had a busy week!  Kyle traveled for work, Grandpa Mike was up Wednesday through Sunday when he took Scout and Dolce down to their new homes, Grandpa Corky stopped by Friday, Early Intervention and Eye Check on Wednesday and Pulmonary visit on Thursday.

Eye Exam Results & Plan

Not surprisingly, the Ophthalmologist confirmed Owen’s eyes are crossed (Strabismus is the medical term).  Essentially eye crossing is caused by the brain not properly communicating with the eye muscles.  His eyes are healthy and his vision is exactly what is expected in a baby his age, so crossing is not effecting his ability to see or use his eyes.  Crossed eyes are very common in children who have PVL (the type of brain damage that Owen has) and the doctor feels confident that the injury is the root cause.

Sometimes, if a child has crossed eyes and very impaired vision, glasses may be the first tool used to try to correct eye crossing – theory is these people are crossing their eyes in effort to focus.  However, because Owen’s vision is not impaired, glasses are not in his plan.  Eye patching is sometimes used for mild cases of eye crossing.  Owen’s wouldn’t currently qualify as mild.  Therefore, the ophthalmologist suspects an eye surgery is in Owen’s future.

Typically, when an infant is diagnosed with crossed eyes, surgery is performed pretty quickly following diagnosis.  However, in children with PVL many doctors like to watch and wait before performing the surgery.  I’ll spend a lot more time explaining PVL tomorrow, but essentially PVL is associated with development delays.  Those delays also apply to the eye, so Owen’s eye crossing still may improve or worsen and they don’t want to correct until they understand where he’s going to land.  The best estimate is eye surgery in 6-12 months, but it could be as much as several years if it appears his eyes are still changing.  Our next check in with the Ophthalmologist is in September.

Pulmonary Visit Update

We also saw Owen’s Pulmonary doctor last week.  Overall the visit was positive.  Besides listening to Owen’s lungs and watching how he breathes, the best indicators of lung health to her are growth and development.  Growth, both weight and height, tells her that Owen’s body is not using up all its energy breathing.  Also, the best way to get healthier lungs is to grow taller because lungs grow as you lengthen, and this new lung tissue should be healthy tissue.  We saw last week that Owen’s had quite the development surge lately which indicates that he’s got some lung reserve beyond breathing and growing.

Now that we are back to a healthier place, the plan is to start working towards Owen doing his breathing without support.  He currently get’s both oxygen support and drug support, via diuretics.  On oxygen settings as low as Owen’s, of the two forms of support, diuretics have more potential negative side effects than the oxygen. Therefore, before trying to reduce his oxygen any further, we will first work at weaning Owen off the diuretics.  That plan means we aren’t looking at a close in plan to lose the tank and cords (boo), but by losing the diuretics, we lose three prescriptions that are each given twice a day which is a nice mid-term goal to look forward to.  It’s three prescriptions because Owen has to have some good supplements put back into his body to replace the ones the diuretics have him pee out.  The doctor wants to give a couple more weeks to let him settle out from his last hospitalization, so the plan is to start lowering his dosages in early June.  Fingers crossed!

Pet Free House

Grandpa Mike made the long drive from Springfield, IL to take Scout and Dolce to their new homes.  The house doesn’t feel the same and we are heavy-hearted.  Scout figured out something was up over the weekend and it was hard to see her so sad.  We know she’ll adjust and be well-loved, but this week, that doesn’t make it easier.  It’s not an easy decision,  but it’s worth it all in effort to give Owen healthy lungs.

PS – Thanks Grandpa Mike and Grandma Roxie for rearranging your schedules to leave a day earlier. Making a 8 AM doctor appointment at Amplatz would have been a challenge had I also had to get Kellen to school.  It was so nice for Grandpa to finally be able to visit when Owen wasn’t in either the NICU or PICU.  They had some nice bonding time and Kellen always loves Grandpa days at the Mall of America.