Archive for the ‘May's History’ Category

I’m an hour early for the celebrations this year. May officially turns 2 1/2 tomorrow, but we are celebrating now with her uncle and aunt who are in from Perth, Australia. What better gift for May’s birthday than two more people around to spoil her!

Considering how far May has come, I’m especially excited as to what the next six months will hold since May started with doing more physio and other therapies, and also – fingers crossed – will be starting at a special school in January.

In keeping with previous birthday posts, let’s all celebrate May’s amazing accomplishments!

(Bouncing encouraged, but optional.)

May, when you were born, here is what the doctors definitely knew you would be able to do:

– pee

– breathe

At two and one half years old you can:

– sleep in your big girl bed (but not through the night grrrr)

investigate your new sibling’s mouth

– enjoy being on your tummy so much you giggle rather than cry

even prop yourself up on your arms and have a look around 

– lift your head up and hold it up in awkward positions

– relax and remain in a side lying position without support

– show the potential to control your hands and arms more

– play independently in your Bumbo or bouncer for 30+ minutes

express your disappointment with Welsh rugby

Happy Birthday May! We love you!


You can read more from Stacie on BabyCenter or Twitter!

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I often think about the other parents. The ones who are in intensive care wards, or in the “bad news room” at the hospital awaiting results. The ones who are sitting next to incubators, who pray, who hope, who despair. We were them once.

I had so many questions then. Not medical questions – questions for my future self. And, I expected every answer would filled with more misery than the next.

Fast forward 2 1/2 years. How would I answer the questions of the woman I was?

Question from me 2009: Does life suck?

Answer from me 2011: No.

Question: But, surely it does and you are just covering it up to make me feel better.

Me: No, I’m not. Everything takes longer. I worry more about the future. I will never feel “grateful” for May’s brain damage. But, that doesn’t mean I hate my life. I love my life. I love my daughter.

Question: I know you are lying to me. What about her seizures? She has over 100 a day.

Me: They stopped. That was a major challenge, but we tried out various medications and got them down to almost non-existent.

Challenging, but not without its pleasures.

Question: Well, that sounds good, but she still can’t sit. Or, feed herself. Or, speak.

Me: Yes. I hate all that. But, I don’t let it eat away at me. I can’t. I focus on helping May become as independent as she can. I try to focus on what she can do rather than what she can’t.

Question: Oh, come on. Don’t you want to run-away or scream or anything but not have this be your life?

Me: My life has changed. It is definitely different than I imagined. But, the worst moments all happened when she was still at the hospital. After we left that behind, the only way was up. It never got that bad again. That’s the truth. When we were told of May’s injuries it was a blinding, desolation of my emotions I have never felt since.

Question: Are you sure you don’t wish every day that this never happened?

Me: I do. I would literally give of my body if it would cure her – anything to erase May’s injury and make her whole. It’s hard to watch her struggle to do what comes naturally to the rest of us. But, mainly I worry about her future when we aren’t around. But, here’s something to think about: almost everything I worry about, May doesn’t. She doesn’t even understand that there is anything wrong with her.

Question: But, you must look at her and know she will amount to nothing.

Me: I can’t wait for you to see everything May can do. Watch her Olympic level bouncing to see even a sliver of the joy she has brought into our lives. Society rates success on money and degrees and titles. And, okay, she won’t achieve those. But, how many of us can say that we made a member of our family smile every day?  Is that nothing?

Until you live with May every day, you will not understand how proud of her we are – how her most minor achievements astound us. It is simply not possible to love her more than we do.

There is much pleasure, love and silly songs in your future.

I really wish I had known that then.

Want to read more from Stacie? Check out her posts on BabyCenter’s Momformation!

VOTE for May and Mama! We are nominated for Best Special Needs Blog at Parents Magazine!

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You’ll excuse me if the following sounds a bit clinical, but it has taken me almost two years to put May’s delivery into writing. I find it easier to deal with if I am straightforward, so I’ve left out a lot of my own personal thoughts or fears at the time.

I don’t write it for sympathy. I don’t need comforting. I write it because it has been two years and it is time to move on.

WARNING TO PREGNANT LADIES: Do you really want to read this? It doesn’t end well.

When I was pregnant with May, there was no sign that anything was amiss. Nothing. In fact, I felt exactly the same in that pregnancy as this one. That is either very worrying or reassuring, depending on how I wake up on any given day.

So, when my waters broke, no one fussed. The midwife visited me at home to test my waters for infection and told me I could labor there for up to five days if I wanted. (I didn’t. FIVE DAYS!)

The following day, I received a call from a different midwife who told me my waters had tested positive for Strep-B. This is an infection that can kill babies, so I urgently needed to come to the hospital. The process of all this happening, from waters breaking to booking in, was 36-hours.

Once there, it was another five hours before a drip with Penicillin was administered to fight the infection. Still, I had no contractions, so they decided to induce.

A drip of Pitocin was administered and I went from no contractions to full, constant torture in under ten minutes. From then on, I had an epidural.

I pushed for a long time before a doctor checked and discovered that I wasn’t fully dialated. This was the first time, since I arrived in the hospital, that I saw a doctor. By this point, we were already over 60-hours since my waters broke.

The doctor asked me to make a choice: continue to push (as the baby didn’t show signs of distress) or move to the operating room for further assistance. At this point, I hadn’t eaten or slept in days. My body shook with exhaustion, but also a reaction to the epidural. I thought I was going into shock.

Once in the operating room, May was delivered fairly swiftly. But, her arrival only came after a failed suction, and successful forceps delivery. She had a gash on her head from the failed suction for days afterwards. Really, you would have thought she’d been in a car wreck not a delivery.

May after delivery

That is the reason why I didn’t question her not wanting to feed, or shaking, or any other signs that I now know were signs of distress.

May was rushed to the Special Care Baby Unit the following morning after a midwife recognized she was seizing. She stayed there for almost six-weeks.

But, what exactly caused the brain-damage? We may never know for certain. A lot of people have theories. A midwife for my current pregnancy, told me that Strep-B needs to be treated with Penecillin within 18-hours of the waters breaking to be effective. Strep-B is known to cause brain-damage. The obstetrician assigned to my current pregnancy believes it was the combination of a protracted labor with the Strep-B. My mother thinks it was socialized medicine.

I’ve always thought it was a combination of a lot of small things that isolated would have caused no harm, but together damaged May irrevocably.

We don’t know what the future holds for May. We aren’t deluding ourselves, which I’m thankful for; she is severely brain-damaged. Our goals for her have much more to do with independence (feeding herself, using a toilet) than they do with attending a university.

We haven’t sued anyone. We looked into it, but it is a very difficult case to prove. So far, it doesn’t look like we have one. But, that might change.

Here is what we focus on: our love for May, the joy she gives us and the security we can give her.

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For almost two years, May’s entire life, she has been afflicted with seizures. These ranged from her first week with seizures so severe her doctors worried she’d stop breathing, to minor seizures that didn’t affect her health, but did disrupt her concentration. At their peak, these kind of seizures occurred several times every 10 minutes. They numbered in their hundreds each day.

To have a small idea of what this was like for May, imagine trying to concentrate on something you found difficult, but could not stop hiccupping: no physical repercussions, but they would destroy your focus. Then, imagine that they never stopped. Sleeping, eating – even the most pleasurable moments disrupted by those annoying hiccups. Hiccups in your brain.

Doctors tried to control the seizures with various medications. One was a controlled substance – like morphine. Actually, come to think of it, one of them was morphine. It’s amazing how traumatic something is at the time – in this case when May was born and she was put on morphine (and two other powerful sedatives) to control her seizures – and I would forget.

In total May tried ten different medications. One tasted bitter, like licking ground up aspirin. Several made her gag. Some were easily pushed out (especially sprinkles). Some melted into a thick paste as soon as they hit her tongue. One did this and turned a bright, turmeric yellow that stained everything. It didn’t taste so hot either.

Pharmaceutical companies make medicines for adults. If they are for kids, they make them sweet (and sticky – watch out). They don’t make them for babies. They don’t consider that babies can’t drink from cups. They don’t think that a seizure medication might be given to a brain-damaged baby that has difficulty swallowing or digesting. They don’t anticipate you delivering the medication through a bottle so that their powder, instead of dissolving completely, might collect like cement at the bottom of the nipple.

Often, we would be using one brand for months and then pick up our new prescription only to find out it was a new brand that May could not tolerate and we’d be completely screwed. Those were moments of real panic for me.

If there is anyone struggling for any reason to give their child a medication, email me. I know ways doctors don’t even know. I’m your pusherman (or mama).

So, on to the good news! May had her first seizure in a week last night! Seven days seizure free. Incredible.

She is only on three medications now: Topiramate, Sodium Valproate and Lamotrogine (the newest one). Seven days is by far the longest she has ever been seizure free. The relief we feel is enormous. Very hard to describe actually. Suffice to say, it is probably the single greatest triumph not accomplished by May herself.

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Babies are not the only thing born on their birthdays. Mamas are born as well.

– September 17, 2009

100,000 hits ago I started this blog about May. She was four months old. I felt lost, uninformed and in love – the pressure of those three things in combination was enormous.

I thought if I could log everything I did with May, I could better evaluate what worked and what didn’t. I also hoped that friends and family would read it so I wouldn’t have to impose myself on them via bulk emails and phone calls endlessly repeating the same depressing refrain: “No, there is no improvement.”

I’m not sure I accomplished any of that. Especially the last bit. Clearly, that didn’t happen.

So what did we accomplish?

May learned some adorable sounds, strengthened her arms, learned to hit some toys and took charge of the household. Check out the Highlights page for some of the best moments.

Here are a few of my favourites:

May says, “No!”

Witness the Fitness

May is American!

And, my favorite bit of writing that didn’t appear on this blog:

A Hero or Just a Parent?

For anyone new to this blog, the sentiment I wrote in that piece still stands. I’m nothing more than a parent. And, May is nothing more than the most adorable half-brained baby in the world.

Finally, one last cause for celebration far better than 100,000 hits. No seizures for four days. May’s new medicine is working.

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Behold! May the Superhero Princess!

This week, a new weapon in her cuteness arsenal – her Supergirl Suit.

May’s lycra suit is made to measure and fits like a glove. May has to be zipped into it at six points: front, back and both arms and legs. Once inside, I challenge you not to think she looks like a contender in the Tour de France only, of course, much much cuter.

The suit is meant to help her in two ways. First, it will give her added support. Two different materials are used, one with a greater give than the other. Along her back, for example, the white lycra is stiffer than the pink, to support better posture. Second, as it acts like a second skin, it is meant to increase her sensory awareness of her own body.

May’s physio instructed us to trial May in the suit for a couple of hours a day, building it up over time until she wears it all her waking hours. While I nodded in agreement at the physio, inside my head I already had May wearing the suit 24/7.

Like many things in this world, I was wrong about that one. It was very obvious from Day One that May would only be able to handle the suit in short intervals. At first, she found it unnerving. She didn’t want to be put down while wearing it. She didn’t like being held in certain positions.

By today, almost a week on, May can wear it twice a day for two hours each. I believe her sensitivity is encouraging.

In May’s first weeks, she lived in an incubator in the Special Care Baby Unit. We could not hold her, so would gently stroke her through an opening in the side. As we ran a finger along her cheek or against the soft skin of her stomach, she would tremble from the over-stimulation.

We were warned to expect this, but rather than be put off, I continued. After her release, May would be held, kissed and bounced, and to do that she needed first to tolerate being stroked. Luckily, my hypothesis was correct. The more we stroked May, the less she trembled.

The suit will do what we can not: stroke May all day long. If the first days are any indication, it will have as positive an effect as we did.

If you can handle the supersonic snorting noises in the video below, you will be rewarded with May propping herself up with her arms. An amazing achievement!

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And baby, look at you now!

Here is what May could do when she was born and it was all her doctors could assure us she would ever be able to do:

– pee

– breath

Continuing with the updates about May’s amazing accomplishments, here is what May can do now:

– bounce

– bounce, bounce, bounce!

– sit with support

– laugh hysterically to herself, over funny stuff she creates in her head

– control her parents

– reach (ever so slowly) to play with her monkey toy

– pretend she is upset and then giggle when she gets her way

– block yucky food from her mouth with karate chopping skills

– make a mess (yeah!)

– lean into her arms and hands to support her weight

– play the keyboard with her feet by kick kick kicking

– recognize her mom and dad’s voices

– recognize the sound of her door creaking open in the morning – “Yeah! Time for bouncing!”

Happy Birthday May! We love you!

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Some of you may have noticed that I removed an earlier post about a complaint to my MP. I removed it because I haven’t sent it yet and it seemed unfair to publish it into the blogosphere without her reading it first.

It will reappear…

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