Archive for the ‘A bit of praise’ 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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If you think May is a superhero – if her Superior Power of Cuteness has directed you to read posts when really you should be working, there is no need to thank us. Who needs a job anyway? Mama and May approve of your devotion!

Here are a few ways you can spread the LOOOOVE:

1. VOTE for us! Parents Magazine is running a Best Blog Awards contest and we are nominated for Best Special Needs Blog.

2. Can you help out May’s special school Small Steps School for Parents? The company Give-It-Away has donated in excess of £150,000 to Small Steps over the years by renovating and selling on houses in London. Do you work for a building firm? Or, do a bit of plumbing?  If you think you can help, even to give them some publicity, not only Small Steps, but all the other small, underrepresented charities that they help will be very grateful!

May thanks you! (bounce, bounce, bounce!)

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You know why I love social services so much? Because working with them is an adventure; I never know what to expect next. What fun! Plus, I get to really focus on what May can’t do. That’s something I love doing.

Today, a social worker called to confirm an appointment. Her call was the first I heard of it. Today. An appointment at 3.00 today.

I couldn’t figure out what this appointment could be for. Then, I had a sudden realization, “Wait! Is this about respite care for May?”

Turns out it was. So, I said I was free.

The information the social worker collects goes to a panel later this week. There some people, as always strangers who have never met May, will decide exactly how many hours of help we need assistance with, based on a report compiled after our 40 minute meeting.

It doesn’t instill you with much confidence does it?

Me neither. And, given our previous experience with Social Services, I expected the worst. I was actually nervous. While Ieuan took a nap, I went outside and paced in the sunshine creating a list in my mind of reasons we need respite care. Newborn baby. May’s increasing heaviness. Not enough time to do basic stretches. Need someone to assist for the safety of both children while I’m concentrating on one. That I want just one cup of tea without being interrupted. Just one.

Is that too much to ask?

Here is where this post turns bizarre. I LIKED the social worker. I don’t think she’d be for everyone with her blunt mannerisms, dark sense of humor and business-like professionalism, but that is exactly what I want in a social worker. I want someone who will say, “On the form it asks about communication. I’m just going to write, ‘none’ and fill in the rest on your behalf later using the medical reports.”

Hello? What? Honest, to the point and helpful all at once? A social worker entered my home and had already read May’s case history. She did not ask me a single thing about the birth. She had handwritten notes on May’s reports. I didn’t need to explain anything except where she didn’t know what to say without asking me.

I thanked her. Repeatedly.

She acted like it was all part of the job. She doesn’t realize how rare it is that people do their job.

From her chair, one which reclined comfortably and she said she may never leave, the social worker snorted a chuckle. “It says here, ‘Did you meet with the applicant alone?’ as if May and I would arrange to meet!”

“Next time, I’ll leave you two be,” I said, “and you can meet for coffee.”

She chuckled again. This woman, with her notes and strong demeanor is what I have been fearing for so long. Good news for once from the department that trains the so-called experts.

We should find out in the next week what kind of respite comes from the report.

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

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I shouldn’t get too excited. The Prof even told me not to get too excited. (Side Note: You know they are medical big wigs when… everyone calls them The Prof or The Boss.)

I took May into Morefields Eye Hospital this week to get her eyes checked. The doctor in charge of the Developmental Vision Clinic at Great Ormond Street recommended attending the clinic. She said they would be sympathetic to May’s developmental problems and not shrug off my attempts to improve her vision with a flippant “there is no point” comment like we’ve received in the past.

The Prof didn’t shrug me off. He was honest. That’s different.

May has an astigmatism. That’s a fairly common eye problem. This means May finds it difficult to see fine details, and things look blurry.

Wouldn’t it be amazing if that was, even partially, the trouble with her vision and glasses could correct it?

I know. I sound too excited. The Prof said it was unlikely that it would make a difference to May due to her brain injury, but in a child suffering solely from the astigmatism, it definitely would. The correction needed is significant. He thought it wouldn’t hurt to give it a try.

So, following the appointment, I chose an adorable pair of spectacles for my May. Said spectacles will make their world debut on this blog in about a week’s time!

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

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Mama Lewis and the Amazing Adventures of the Half-Brained Baby has a new home now. Come visit us at mamalewis.com.

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When I wrote my 100,000 hits post, it was only February of this year. It took almost a year and a half to get there, and now a third of the time to get here.

But, that’s not what I really what I find amazing. 200,000 hits is small potatoes compared to everything else that happened in that short amount of time.

May discovered her mouth. She enjoys making clicking and humming sounds. She spits like a champ. She sings along with us. Her laugh is infectious. I defy anyone to not giggle along with her. What a joy she is!

May’s seizures disappeared. We go weeks without seeing one now. Let me repeat that for those of you new to my blog. We go weeks after almost two years of frequent seizures, at their height over 100/day. To rid herself of these, May had to endure medicine trials. That’s how she learned to spit like a champ.

May learned to sleep through the night. We should win a medal for that.

May moved on to chunky food and put on the pounds! Finally! (And, from this, I learned that my instincts are right. Two fingers to so-called experts who doubt and patronize thoughtful, reflective and informed parents.)

May became more independent. She mastered the Bumbo seat. Which means, she can sit – be it aided. That is an amazing step forward. Not to mention, she LOVES her Bumbo. She also loves her bouncer. In both of these, she will happily play on her own for 20 – 30 minutes at a time.

And, just in time – because she needs to be more independent after the major event of the year. A healthy, baby brother for May!

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After your baby was born, where was the first place you ventured out of the house to?

I’m American. I went to the mall.

Worse, I went directly to the baby store. (I also went to the book store. A girl’s gotta have her fix.)

At the baby store, my husband pulled the stroller up to the elevator doors so we could go upstairs. The doors opened and two women pushing a stroller came out. Nothing unusual in that except the boy in the stroller was wearing his pacifier around his head.

He wasn’t holding it, it was attached to his head by a piece of elastic fabric. “Genius!” I said out loud.

Gareth got in the elevator and I walked off. I left him and the baby on the elevator. I abandoned my newborn baby. I was fixated on one thought: May-teeth-grinding-May-teeth-grinding.

Determined to stop the women, I ran off after them crying, “Excuse me! Excuse me!”

They stopped and turned around. “Your boy. His pacifier.” I wasn’t explaining myself properly. I gestured towards his face. “My daughter, May, grinds her teeth and she can’t hold, she doesn’t know how… and I saw your boy.” I never know how to explain May to complete strangers.

Thankfully, they were both very nice. His mother asked, “Does she have cerebral palsy?”

“Yes,” I said, gratefully.

Turns out Sasha (I hope I have his name right – and, if his mother is reading this, feel free to correct me!) can’t hold his pacifier in his mouth any better than May can. His mother explained that it calms him down and he hates to be without it. She came up with the ingenious idea of tying a bit of elastic band into the holes on the side of the pacifier, wrapping it around his head and TADA!

I can’t promise that May looks as adorable as Sasha did in his. I wish I’d taken a photo of him as a demonstration – he was such a cutie.

May and I are indebted to Sasha’s mother who, like I’ve already said, is a genius. After months of trying to figure out how to stop May from grinding her teeth, Sasha showed me the way. All hail this adorable blondie boy and his mother!

FYI: May uses a Tommy Tippie Xplora Gummy Teether, not a pacifier.

UPDATE: Sasha’s mum, Kate, has been in touch! Not only that, but she has her own blog where you can see a photo of Sasha and read more about him and his adventures. 


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

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You can probably guess why I’ve been a bit under the radar of late.

I have all the normal new baby joys and troubles (mainly: Joy! Joy! Joy!). In addition, there have been some particular troubles breastfeeding Ieuan that have left me feeling not only exhausted, but quite ill. You can read about them on BabyCenter.

Besides that here are my top three unbelievable moments of the past nine days:

1. Hearing Ieuan cry immediately after delivery. Incredible. I knew he’d be fine just from his voice. He is!

2. That the staff discharged us from the hospital two days after we arrived. I still can’t believe that we spent less time in the hospital than my entire labor for May.

3. How incredibly amazing a healthy newborn baby is. It is such a different experience and we are so grateful.

Something I do want to mention which has nothing to due with Ieuan is that Small Steps School for Parents, May’s school, is being evicted. They are too nice to call it that, but that’s what it sounds like to me. I don’t have the details, but I do have this email from the school which I hope you will share or share via Facebook, etc, as requested.

Small Steps only moved into this space just before May joined. It is very small, and although it is attached to a special needs school, I’m not sure how the space could be utilized differently. It is not a normal classroom size.

Small Steps School is the only school of its kind for children under-4 in South London. But, it serves a far wider area than just South London – as if half of London wasn’t big enough!

Please help if you can!

Dear Friends, 

Small Steps is looking for a new home!  The local authority has asked us to vacate these premises asap, by December at the latest, so we need your help.

If you know of any empty suitable (large, accessible) premises in South West London, please let us know.  Sole use is preferable, though all reasonable (and radical) options considered.

 Please help us in our campaign to ensure Small Steps’ survival.  Spread the word far and wide, copy this email to your contacts, Facebook and Twitter… we can’t do it without you!

 Thank you.

The Small Steps Team 

P.S.  Please contact us if you would like any more information or if you can help…

Small Steps, School for Parents

c/o Greenmead School
St Margaret’s Crescent
London  SW15 6HL
Registered Charity 1089161Join us at our Facebook page:

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