A letter to my son on his first day of preschool

Dear Oliver,

This morning you're at preschool for the first time, and I'm sitting at a coffee shop by myself, thinking about how we got to where we are. Let me tell you the story.

Three years ago today, I was in Germany with your daddy for his work. You were in my belly. I didn't know that a few days later, while we were still in Germany, you would be born, 12 weeks early.

You were so small.

In your first weeks, you lived in a glass box, with lots of silly tubes up your nose, in your mouth, and on your foot. For a while, you had this funny mask over your nose and mouth. You blew bubbles in it one day, which made you look like a little scuba diver. That made Mommy and Daddy smile.

But we were also scared. You were so small, and you were sick.

You needed extra blood.

The doctors gave you some.

Your brain got hurt.

The doctors did surgery to help you.

You had trouble breathing. Your bones were weak. A blood vessel near your heart had a hole in it.

The doctors helped you.

Mommy and Daddy helped you, too.

We sang to you. We held you. We gave you Mommy's milk.

Slowly, you got better. You grew, and you grew, and you grew. You got so big that on your first birthday, you were 10 times (!) your birth weight.

You were getting stronger, too.

When you were 13 months, you started learning how to sit on the floor.

When you were 19 months, you started learning how to stand.

When you were 25 months, you started learning how to walk.

And when you were 29 months, you spoke your first, glorious word: "Go!"

To this day, that's your favorite word—the word you say when you want to practice walking while holding onto Mommy or Daddy's hand; the word you say when we're stopped at a crosswalk but you want to keep walking; and the word you say whenever we ask you what you want to do.

And so today, on your first day of preschool—a day I am so thankful that our family gets to experience—I want to say to you:

Go!

Go experience the world!

Go learn new things!

Go forward, go backward, go upside-down!

Go!

(But always come back. :) )

Love,
Mommy

Make your own photo flash cards for language development

I wrote the following post back in February but for various reasons haven't gotten around to revising and posting it until now. My son has made some progress since then in his communication skills---for example, he now says "Go!" when he wants to practice walking and nods his head "yes" or shakes his head "no" in answer to the question "Do you want [a banana, to go downstairs, etc.]?" 

To be honest, we haven't really been using flash cards much, but I thought I'd share information about how I made some anyway, just in case it's helpful for anyone.

My 2.5-year-old son has a speech/language delay, and while he is understanding more and more of what I say to him (go little buddy!), he isn't yet saying any definite words. He communicates using gestures---reaching for objects, handing me a spoon when he wants help eating, grabbing both of my hands when he wants help walking, etc.---as well as vocalizations that don't have any specific meaning. While I can often intuit from his actions or his tone of voice what it is he wants, it would be nice to have an extra means of communicating with him.

Back in the fall, I asked my son's then-speech-therapist (who is now on maternity leave) what she thought of using picture flash cards. She didn't think my son was quite ready at the time but said that if I was really keen on trying anyway, it would be best to start with photos of familiar objects, set in a plain background.

Well, I finally started making some photo flash cards last week and thought I'd share with you my method, in case you're interested in making some for your own child. First of all, here's how a few of them turned out:

front

back

Here are the supplies/resources that I used, most of which I already had at home:

• an iPhone, to take pictures with
• a laptop computer
• an online photo service (I used hema.nl, but walgreens.com or snapfish.com would also work)
• white cardstock paper
• a printer
• scissors
• clear 8.5" x 11" photo sleeves/pockets (i.e., for a photo album)
• a small piece of cardboard
• a ruler
• an iron

It looks like a longish list, but the only things that I actually needed to purchase were photo prints and the clear photo sleeves, making for a fairly inexpensive project.

Step 1: Taking and ordering photos

I started off by taking photos of a bunch of different objects and foods that my son enjoys and/or often encounters---his toy dump truck, a shoe, a diaper, markers, a cup of milk, stairs, etc.---that I had placed in a plain setting or, in the case of fixed objects (e.g., stairs), were already in a plain setting.

I ordered 10 cm x 15 cm prints (roughly 4" x 6") of each photo on hema.nl and paid a few extra euros to have them shipped directly to my house.

Step 2: Creating labels

I wanted to label the back of each flash card for a couple of reasons: (1) Even though my son is nowhere near ready to learn to read, perhaps these flash cards will come in handy someday when he is ready, and (2) I wanted to make sure that when I teach him the name of the object on the card, I use a consistent word each time. For example, I made a flash card with a photo of his baby doll and labeled the back with "baby" to remind myself not to call the doll or image of the doll a "doll" or "baby doll"---just "baby."

To create the labels, I used Microsoft PowerPoint. I "drew" two 10 cm x 15 cm rectangles, side by side, each with a faint dotted border and then, in roughly the center of each rectangle, added the text in 36-point bold print. I chose Century Gothic as the font because it closely resembles the way letters are handwritten (e.g., compare "a" in this typed font to the "a's" in the image below).

labels for flash cards, in a PowerPoint slide

I duplicated this PowerPoint slide a bunch of times, changed the text in the duplicates to create a bunch of different labels, and then printed out all of the slides on white cardstock paper. I cut out each label using scissors.

Step 3: Assembling the flash cards

I cut the photo sleeves into rectangular pieces slightly larger than the size of each photo, with about a half-centimeter or so margin on each side. I slipped the photo and its corresponding label card into one of the rectangular pieces and then placed it on top of a small piece of cardboard on top of an ironing board. (The cardboard was there just to protect the ironing board.)

I ironed the edges on low to medium heat by placing the iron briefly on the plastic and then picking it up and moving it down to the next bit of plastic, using a ruler as a guide, until all edges were complete. After the plastic had cooled, I trimmed all edges using scissors. (Rather than using an iron, you could of course have all of the flash cards laminated. I didn't have easy access to a laminator.)

And that's it!

Emergency department visit -- Part 2

This is a continuation of my previous post.

I have this memory from that night my son had a seizure, of me sitting on the couch, cradling my son like a baby, and us having the following conversation, with good eye contact:

Him: Mm.
Me: Mm.
Him: Mm.
Me: Mm.
Him: Mm.
Me: Mm.

Very profound.

But I cannot for the life of me remember whether this happened before or after his seizure. And it seems important now to know because it would help me answer this question: After his seizure, did we do the right thing?

The details of what happened right afterward, especially the order of events, are a little hazy:

I know my husband and I gave our son some emergency anti-seizure medication and afterward agreed that he needed to go to the emergency department at the nearest hospital. There was some debate about whether we should call for an ambulance (his preference) or go by bike (mine). The latter would take about 15 minutes.

I know that soon after the seizure I hurried out the front door to install our new special-needs seat into the bike trailer right in front of our house.

I know my husband called for me from within the house. I came running back in, and he said something about our son not being able to support his head while vomiting. My husband was kneeling on the floor with vomit on his shirt, trying to support our son in a sitting position.

I remember thinking at some point that our son seemed really sleepy and that that seemed logical considering it was past his bedtime and he had just had a seizure. (After his previous seizure, he had also seemed really sleepy and out-of-it.)

I remember my husband asking me if I was done installing the seat into the trailer and me getting annoyed about his apparent impatience and rushing back outside to finish.

I remember him questioning whether we should just take the stroller. He also at some point questioned again whether we should take an ambulance. I remember thinking an ambulance didn't seem necessary. Our son had responded to his emergency medication, and he was breathing. What more did he need so urgently?

I remember we put our sleepy son into the trailer and were getting ready to leave when we realized we hadn't taken off the two chains locking the trailer wheels. I quickly unlocked and removed one of them. My husband couldn't find the key to unlock the other one and ended up frantically cutting it off with a hand saw.

I remember leaving for the hospital and discovering soon afterward that the back of our son's seat was leaning forward in the trailer, causing his head to droop forward a bit. We managed to fix it by putting his monkey backpack under the front part of the seat.

I remember my husband and I getting angry and frustrated with each other throughout the ordeal as we tried to respond in differing ways to this medical emergency.

But I cannot for the life of me remember: Was our son responsive after his seizure?

Should we have called for an ambulance?

When we arrived at the emergency department around 11:30 p.m., we were immediately led to a room, where I placed our son on a hospital bed. Person after person came into the room---placing an oxygen mask on him, placing heart-monitor stickers on his chest, asking us questions in English, speaking to each other in Dutch. My husband and I sat down in chairs a few feet from the bed and held hands and worried.

A lady on the other side of his bed had a worried expression on her face. Finally, another lady, a doctor, filled us in: After we brought him in, our son had another seizure, right there on the hospital bed. They stopped it briefly with medication. Then, he had yet another seizure. They stopped it again with medication, this time successfully.

She said that for one (or both?) of these seizures, his eyes were to the left and weren't moving in response to their calls. Apparently this was a sign of a seizure, even though he wasn't shaking.

And then this horrible thought came to me: Was he having a seizure when we left for the hospital? When he seemed so sleepy, was he actually having a seizure? I couldn't see his eyes then. As far as I know, they were closed. Could he have been having a seizure?

I asked the doctor this question.

She asked me to recount the order of events of the evening.

I did, as best I could.

She didn't answer my question.
_______________________________________________

Our son was admitted to the hospital overnight for observation. There was only one extra bed in the room, for one parent to stay overnight, but our son's nurse kindly transferred us to a room with two extra beds so that my husband and I could both sleep in the same room as our son.

Our son did fine throughout the night and was discharged just before lunch the following day.

Should we have called for an ambulance?

Yes, according to the doctor who discharged him.

I felt terrible.
_______________________________________________

Last week I met with my son's psychologist (an orthopedagoog, actually, but basically a psychologist), who is a part of the therapeutic toddler group program he attends and who had requested this routine meeting. At the beginning, she asked about my son's latest hospital stay and how I was doing. I told her I was sad that he had had more seizures and that both my husband and I had felt sadder than usual in the following week. I recounted some of the details of the evening and told her I was questioning whether we had done the right thing. Should we have called for an ambulance?

She was very kind. She said: "If you had called for an ambulance, the person on the line probably would have told you to just observe him. That's just how Dutch health care is. Since the emergency medicine seemed to have worked, they probably wouldn't have sent an ambulance right then. Of course we'll never know for sure, but you probably got to the hospital quicker by bike."

And later in the meeting, she said something that I really needed to hear: "Don't put too much pressure on yourself."
_______________________________________________

As a parent, I try to do the best thing for my child. But when dealing with medical emergencies, it's difficult to make the absolute best decisions all the time when there's so little time to make them. Especially when dealing with new-to-me medical events, like seizures. Heck, it's impossible to make the absolute best decisions all the time even when dealing with just regular, run-of-the-mill parenting issues.

So,  I'm telling myself to be gentle on myself. Everything turned out okay (my son seems like himself again), and I learned a valuable lesson: Our medical emergency plan for seizures needed to be updated. Our current plan is now to administer his emergency anti-seizure medication and then immediately call the Dutch equivalent of 911. Because we now know that the emergency medication itself isn't always sufficient.

Emergency department visit -- Part 1

We got a chance to try out our new seat for the bike trailer last night, but not in a way we wanted or expected....

My husband and I decided late last week that we'd go on a family bike trip to a large indoor playground on Sunday morning. In anticipation of this trip, I spent a good portion of Saturday adapting our new special-needs seat to fit my son comfortably and figuring out how best to secure it into our bike trailer. I sewed the chest-clip pieces of the seat so they would fit more snugly across my son's narrow chest, lengthened the lap belt so it would fit better over his belly (his belly isn't large, but the lap belt was too short; maybe we're missing a piece?), and figured out a way to use the bike trailer's existing shoulder straps and lap belt to secure the seat into it.

Around 10:00 Saturday night, I was just about finished modifying the seat itself and was taking a little snack break when my husband came downstairs with our son in his arms and asked me to dim the lights. Our son, who had been in bed since around 8:30, needed a diaper change.

We were changing his diaper together when he began coughing, forcefully. He had been having coughing fits like this off and on all day and, in fact, had coughed so hard right after eating his bedtime snack that he vomited it up. (He's probably getting a bad cold, I thought. The last time he had had a bad cold, his coughing fits had led to vomiting.) Now, post-diaper-change, he acted like he was about to vomit again, so I sat him up and cupped my hand under his mouth right before he threw up on me. My husband ran to get a towel and, then, a bowl. Our son threw up again. More concerning, his arms seemed a bit shaky.

Could this be a seizure? I thought. He had just been diagnosed with epilepsy at the end of December, so I'm still learning about seizures and what signs to look out for in my son.

He then started reaching for the bowl (of vomit), and I thought, No, this can't be a seizure. He wouldn't be reaching for the bowl if he was having a seizure. Maybe he's having a shunt malfunction.

My son has hydrocephalus, or excess fluid in his brain, which in his case was caused by a brain bleed that led to blockage of the normal flow of cerebrospinal fluid. The good news is that it can be treated---with a surgically implanted shunt that drains the excess fluid from the brain to the abdomen, where it can be reabsorbed. The bad news is that shunts sometimes malfunction. Vomiting can be a sign.

In case this is what was going on, we decided around 10:30 that we needed to take him to the emergency department at the Academic Medical Center in Amsterdam, which has a neurosurgery department that has my son's medical records. Calling an ambulance would be pointless because the only cure for a shunt malfunction is neurosurgery, which obviously cannot be performed in an ambulance. Also, while neurosurgery must be performed soon after signs of a malfunction, it need not be performed immediately; we had some time. So we needed to get ourselves ready to transport ourselves.

I ran up the stairs to mine and my husband's bedroom, where I grabbed some clean clothes for our son and changed out of my vomited-on pants. Soon afterwards, my husband and son came upstairs, and I remember my husband saying something to the effect that our son wasn't feeling well. It was then that I noticed that our son's arms were shaking again. I called his name. He didn't respond.

Ohmygod, he IS having a seizure, I thought.

So we ran downstairs, and I grabbed his monkey backpack from the stroller at the base of the stairs, ran into the living room, opened the monkey backpack, pulled out a syringe of his emergency anti-seizure medication, and began to furiously review the instructions for administering it. My husband laid our son on the floor, on his side, facing away from me.

I stuck the plastic tip of the syringe into a packet of lubricating gel, then inserted it into my son's rectum, slowly pressed down on the plunger for 1...2...3..., kept the syringe in for 1...2...3..., removed the tip, and squeezed his buttocks together for 1...2...3....

Within a few minutes, he stopped shaking.

To be continued...

Special-needs seats for on-the-go or at home

My family has been living in the Netherlands for about 9 months now, and we plan on staying for a total of 3 years. My husband and I decided that 3 years isn't long enough to warrant us purchasing a car, especially since the town where we live is so easily accessible by foot and bike. We're about a 15- to 20-minute walk from the train station and just a 10-minute walk to the town center, where there are plenty of shops. By bike, of course, it takes even less time.

Our 2-year-old son, who has cerebral palsy affecting his left side, attends a therapeutic day care program 2 mornings a week at a local rehabilitation center. The walk there takes longer---30 minutes---and is quite boring for my son and tedious for me, so traveling by bike would be ideal. We've tried biking before, with me cycling and pulling him behind me in a bike trailer designed for small children to sit in.

July 2015

But I found that the trailer's bench seat with its 2 shoulder straps, a strap between the legs, and a long lap belt just wasn't enough support for him: He was so tired after 3+ hours of day care that on our way home, he'd slump over on his left side, with his head lying almost horizontal on the left shoulder strap. It looked very uncomfortable, as well as unsafe and not good for development of his spine.

So I've tried finding an alternative solution. A lot of moms in the Netherlands bike with their child or children in small children's seats at the front and/or back of their bike, like this:

© Nadezhda1906 | Dreamstime.com - Mother and daughter on bike

This doesn't seem like the best option for us, though, because I think: What if I lost balance or got into an accident? Oliver had a brain injury soon after birth, and I hate the idea of him falling and injuring his head and brain further. And I'm concerned that a helmet wouldn't offer enough protection, especially for his neck. (Some would say I'm a bit paranoid. But better safe than sorry, I say!)

So I've decided to stick with the bike trailer and try to find a special-needs seat that I could install into it. I've done quite a bit of research online, and here are some options that I've found. These weren't designed specifically for use in a bike trailer---some were designed as feeding seats, for example, and/or as seats that could be easily transported and strapped into chairs at restaurants, friends' houses, etc.---but they seem like they could be easily adapted for other uses.

1.) Tumble Forms Deluxe Floor Sitter

Photo from www.nrshealthcare.co.uk

This seat was designed for correct positioning of a child during feeding. Some of its top features, in my opinion, are that it....

• can be easily wiped clean
• has a 4-point harness
• can be attached to a wedge using a large Velcro® strip, allowing it to be tilted at a wide variety of angles

availability: 
In the U.S.: eSpecial Needs, Medical eShop, and more
In the UK: NRS Healthcare

price:
In the U.S.: $295 and up for the sitter + wedge
In the UK: £139 and up for the sitter alone, or £280 and up for the sitter + wedge
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2.) Special Tomato Soft-Touch Sitter

Photo from www.specialtomato.com

As the name suggests, this seat is made of a soft-to-the-touch material rather than a hard plastic. Some of its top features, in my opinion, are that it....

• can be easily wiped clean
• has a 5-point harness 
• has 2 attachment straps that allow it to be secured to a regular chair

availability:
In the U.S.: Adaptive Mall, eSpecialNeeds, Tadpole Adaptive, and more
In Europe: Global Carehab

price:
In the U.S.: $225 and up for the sitter alone
In Europe: €295 for the sitter alone
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3.) GoTo Seat

Photo from www.fireflyfriends.com

This seat was recently redesigned to be more easily adjusted so that it can fit more kids. Some of its other top features, in my opinion, are that it....

• is lightweight, allowing for easy transport
• has a 5-point harness
• can be strapped not only into a regular chair but also into a child's swing or even a shopping cart

availability: 
In the UK: Firefly

price:
€299-339, depending on size (The old model is also available in size 1 for €199, while supplies last.)
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Each of these seats comes in multiple sizes.

Ultimately, I ended up purchasing a Tumble Forms Deluxe Floor Sitter, really just because I found one on ebay that was the right size and reasonably priced. I just received it last week and tried it out this past weekend. More on that later!

(Disclaimer: I have not tried the latter two seats for my son. Descriptions of them are based purely on online research.)

The beginning

I've been thinking about starting this blog for a long time now. In fact, I wrote most of the text below about a year ago! Fear has been getting in my way of actually publishing it. I just now tweaked it a bit---mostly to reflect the fact that my son is now almost 2.5 years old. Thanks for visiting my blog, and I hope you enjoy reading it!

I feel really scared to start this blog, to put myself out there, to put my son out there, for anyone to see.

Where does this fear come from? Am I afraid of the potentially mean comments that could appear down below? And that those comments might affirm the negative thoughts that sometimes creep into my mind? I’m not doing enough for my son. I don’t quite know what I’m doing, or where I’m going. I worry too much.

Yes.

Am I afraid that people I know will read it and silently judge my choices---my choices to put the brakes on my career and stay home with my son, to move the family to the Netherlands last spring for my husband’s career, to isolate my son during his first few years of life? (And by “my choice,” here, I really mean “our choice”-- mine and my husband’s.)

Yes.

Am I afraid that my son will someday, as a teenager perhaps, be mortified and angry that I chose to share details about his life, about his struggles, on the internet?

Yes.

But will it be worth it?

I think so.

Mean comments and silent judgments shouldn’t matter. (I say “shouldn’t” instead of “don’t” because my skin is a little thin; something, among many things, to work on!) 

And as for my son, I’m hoping that he’ll someday see this blog as I do, as a place for me to connect with other parents of special-needs kids and to hopefully help them in some way by sharing our story.

Our story began almost 2.5 years ago, when I was diagnosed with a rare pregnancy complication called HELLP syndrome and had to deliver my son via emergency c-section, 12 weeks and 1 day early. He weighed just 1 lb. 12 oz. (As if giving birth to a medically fragile infant wasn’t stressful enough, it happened while my husband and I, both Americans living in the U.S. at the time, were visiting Germany for my husband’s work. Eek!)

Soon after birth, my son developed a brain injury called an intraventricular hemorrhage, which is common in preemies born very early and very small and led to hydrocephalus and hemiplegic cerebral palsy affecting his left side. He has endured numerous medical tests and procedures, including 6 surgeries and 1 heart catheterization procedure, and has had many, many therapy and doctor appointments. In fact, he’s listened to so many doctors talk about so many different medical specialties that he's just about ready to become a doctor himself....

photo taken in January 2015

(Proficiency in Curious George is necessary for completing medical training, right?)

He's now 2.5 years old and learning to walk, increase usage of his left hand, and communicate more effectively, all with the help of physical, occupational, and speech therapy.

I'd like to use this blog to share with you some of my son's struggles and triumphs and some of the things I've learned during our medical and developmental journey. Enjoy!