Help! What do you know about physio?

May has a physiotherapist. She is a member of May’s community team, so we don’t pay any additional money for her and she works alongside everyone else who works with May. She is professional and organized and I should feel like she is enough, but I don’t.

She isn’t just May’s physio. She is also May’s key worker, meaning she organizes new equipment or referrals if we need them. If I have a problem with funding or with a member of the team, she takes care of it.

But, she isn’t just May’s key worker. She is also the person at the center who measures and orders the lycra suits for all the children who need them, including May.

That’s a lot of stuff. And, I worry that in between all that, the physio itself gets a raw deal. She sees May with some frequency, say once every three weeks, but during this meeting often it is the administrative end of May’s care that is the priority.

May does the same daily stretches she did when she was a baby. That’s not necessarily the wrong thing since the stretches are about keeping May’s full range of movement as she doesn’t move very much or in the manner a two-year old should.

Are they helping? I don’t know. I know that May has a good range of movement for a child such as herself. So, yes, I suppose they are.

Is she progressing? Not sure. Her progress is very slow. I don’t like creating lists of what May can’t do, however there are some things I thought physio could have achieved. For example, May still pulls her arms in towards her chest or hyper-extends them. She delivers few relaxed, deliberate arm movements. Yet, she does thrust her arms forward to hit a toy. This implies to me that she does understand that her arms can be used to manipulate an object, even if her movement is clumsy.

Shouldn’t physio play a role in improving this?

It is disheartening to do the same stretches, songs and activities over and over again for two years in the hopes of stimulating independent movement and not help May achieve it.

On the other hand, maybe the progress  and range of movement May has is really amazing for her skill set. Maybe I should be thinking about further progress along the lines of what she is realistically capable of.

I don’t believe in the “It can’t hurt” philosophy. If it doesn’t work, we waste money, but the time with May is even more precious. If it is unproductive, if we could have enjoyed that time together and instead I forced her to do all kinds of nonsense, it will hurt.

My question for you readers in the know:

Should I invest in additional physio for May? And, if so, what kind?

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May’s reaction to Ieuan (VIDEO)

In my last post, I discussed how May doesn’t understand the concept of a sibling, nor does she recognize that someone new has taken up residence in her home. Still true. (It’s okay. Don’t feel bad. We don’t.)

She does, however, react to Ieuan when he is physically placed next to her, as demonstrated in the video below.

The video is a bit longer than I normally post. This is down to my lack of any editing software. I would suggest you start the video about 2 1/2 minute in to get a full flavor for May’s reaction, if you don’t want to watch the whole thing.

It is not my intention to bore you to death with long videos of my children.

That said, I can’t think of a better way to die…

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This week I’m… introducing May to her brother.

Since Ieuan’s birth, there has been one question we’ve been asked more than any other, even more than “Are you getting any sleep?” (Answer: No)

The question is: “How has May reacted to her new brother?” Sometimes people ask who really understand May’s cognitive functions. Always, it is asked with genuine interest. But, it is not a comfortable question for me to answer.

I’ve tried several answers:

“She loves hearing him cry. She loves a crying baby! Very funny!”

“She is being spoiled rotten so she is fine with it!”

“She’s enjoying being at home with her mama, daddy and new brother.”

What I really want to say is, “May has no idea she has a new brother.” Because, that is the truth. May doesn’t understand the concept of a new sibling joining the family. She doesn’t recognize that there is anyone new in the house. She is totally unconcerned. She is not excited. She is not upset.

I’ll be honest. I’m sick of answering this question. Every time I have to answer it, I lie. Okay, so they are white lies. (May really does enjoy laughing at a crying babies. The more screaming and pain the more rapturous her giggle.)

Only yesterday, I was still attempting to get May to recognize me. I walked into the kitchen quietly and stood directly in front of her with a big smile on my face. I willed her to identify my face while I remained silent. There was no response, and then, all of a sudden, she burst into a heap  of giggles. “She recognized me!” I cried out to my husband. He was just as excited, because even recognizing the faces of us, her parents, is difficult for May.

So, to be clear, though we may all want May to have a big reaction to her brother, she hasn’t.

But, that doesn’t mean she won’t in the future. If May is going to recognize her brother’s existence it will just take a bit of work on our end. Like everything else, May needs direct access and stimulation over time to build associations. She can’t just occupy the same room as him to know he is there; she has to feel his face with her hands, listen to his cries, be brought up close to him so she can see his eyes.

And, this is exactly what I’ve started to do with her. When I bring her that close, I think she shows a bit more interest. Okay, so she doesn’t grasp that she has a brother yet. But, he does amuse her. Especially, when he cries.

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Why new baby = zero posts (Also: Small Steps being evicted!)

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

Putney

London  SW15 6HL

www.smallstepssfp.org.uk

Registered Charity 1089161Join us at our Facebook page:

http://www.facebook.com/smallstepssfp

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May has a little brother!

Today, we brought May’s little brother home from the hospital. I still can’t believe they let us go! I am in total awe at how smoothly everything has gone – so different from our first experience.

I will tell more later. I’m too tired now. I’m only awake because I have to feed the little nipper soon!

Also, we have a name but I haven’t yet spoken to the whole family, so I will reserve the right to not say for a little while longer.

To sum up: happy happy happy.

Photos of May’s first meeting with Peanut, yesterday at the hospital:

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This week I’m… having a baby!

Happy 4th of July everyone! And, of course, Happy 5th of July for us – the big due date!

Tomorrow, May becomes a big sister! If all goes to plan and the baby is healthy, there is no telling how beneficial the little one will be for May. For us all! So, there is a lot to celebrate around here.

If you want to know anything about the baby’s arrival tomorrow, please check on BabyCenter. I asked my husband to upload a photo and info on to their site. I can’t really ask him to do the same here, when all you have to do is click over!

I’m not sure exactly how long it will be before that photo goes up, so don’t panic if you don’t hear anything from us by tomorrow. Both of us will be pretty exhausted!

In the meantime, get a load of Big Sister May in all her American finery. The gorgeous woman supporting her in three of the photos is her Grandma Barbie, here to meet Peanut, babysit May and nurse Mama Lewis back to health post-op.

Wish us luck!

Bounce…

bounce…

Bounce!

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Insensitive. Irresponsible. Midwife grrrrr.

Yesterday, I attended a cesarean clinic at my hospital’s birth center. During the clinic, a midwife prepared me in the same way as for a normal operation: pre-op instructions, blood samples, necessary prescriptions…

I thought it would be reassuring. The midwife would explain the before, during and after op, and I would ask all my serious and silly questions. When I saw my consultant on Thursday, he said not to worry, whatever I wanted, she would write it down and it would be done on the day. No problem.

Except, for the midwife, there was a problem. Several. There was a problem with the timing of the meeting; she kept looking at her watch. There was a problem with all my requests; like getting skin to skin contact since they need to wipe and warm the baby first. But, most importantly, there was a big issue with my requests about post-birth care of my baby.

“Because of my previous birth history, I wondered when the baby would be checked out by a pediatrician?” I asked.

“Oh, usually they examine the babies 24-hours after the birth. But, it’s not a problem, one of the midwives will do an initial check.”

My insides twisted up inside of me when I heard that. “Is there any way we could get someone in sooner,” I asked.

“I doubt it. The doctors really don’t like coming down earlier than they need to if the baby presents okay.”

She already asked a detailed round of questions regarding May’s birth, so she knew the circumstances. Yet, while we spoke, she jotted down notes in my file – mundane things like, “swab provided” – while simultaneously speaking from script. There was nothing ordinary about May’s birth, but she gave me the brush off in the manner people do when they think they’ve heard it all before.

Therefore, when she said, “The doctors don’t really like coming down…” I fell into a kind of emotional coma. Inside, I screamed, “They can’t come down one flight of stairs and check on a baby that might die? What? What?”

But, on the outside, I exhibited no signs of life. Instead, I calmly said, “Issues with my daughter weren’t discovered for 12-hours. I don’t want that to happen again.”

Very casually, like we were discussing food on the ward, she asked, “And, what kind of signs were those?”

I collapsed inside as I delivered a list of a series of symptoms that anyone, medically trained or not, would know could kill a newborn: “She wasn’t breathing. She had major seizures. She wouldn’t feed. She didn’t cry.”

She is unfazed. “Well, if that happened, I can assure you a doctor would come down immediately. And, there will always be midwives on hand to check her.”

“No offense, but there were midwives on hand to check May as well, and when I thought she wasn’t breathing, my midwife didn’t even pick her up to check her vitals. I’d really feel more comfortable if a pediatrician could check the baby over as soon as possible.”

The midwife looked at her watch again and said, “I would like to say I could guarantee that, but I can’t. So, why don’t you ask the team on the day and they will see what they can do. And, if that is all…”

I was encouraged to leave. And, I’m ashamed to say, I did. I left. I found myself smiling at her and walking, of my own accord, out of the office, down the hall, into the elevator and out the hospital doors.

For the next three hours, I didn’t do anything. I didn’t listen to any music on the drive home. I didn’t eat any lunch when I got there. I sat at my kitchen table and I stared into space and thought, “No one is going to watch out for my baby. My baby is going to stop breathing and I will be too tired and drugged out to realize.”

Finally, my husband phoned to see how it all went. As soon as I heard his voice, I sobbed. I told him what happened. He was furious. “What is wrong with these people? Don’t they know that May almost died?”

“I tried to explain,” I said, feebly.

He calmed his voice. “I know you did, honey. Who did you talk to? I’m calling the hospital. I’m calling them right now.”

Ten minutes later he phoned me back. “Don’t worry. I spoke to one of the obstetricians. He is putting in the request now, a pediatrician will examine the baby. There was no question. He didn’t argue with me. He was in total agreement.”

He gave me the number of the doctor, who I called. By the time I got a hold of him, the request had already been made and filed. “Don’t worry,” he said. “You are completely right to worry. There will be no problem having a pediatrician look at your baby. It is totally justifiable.”

I felt so much better. But, so much better is still not the carefree mother-to-be I was when I entered the hospital yesterday. The midwife – that insensitive and irresponsible woman – reminded me all too clearly that the care you get greatly depends on who you get on the day. Fingers crossed it isn’t her.

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