Archive for the ‘This week I'm…’ Category

We’ve gone private. I never thought we’d ever do that. Honestly. Because I believe in the NHS. Despite May being born in the care of the NHS and feeling that the birth went wrong, I still believe that she is seen by some of the best medical professionals in the world.

Unfortunately, physiotherapy is not one of those areas. Originally, I was satisfied with the physio. Yes, I had my issues. But, I voiced them, and I felt they were seen to. Then came the crushing realization that May deserves better.

I don’t use the word “crushing” lightly. That’s how it feels. May deserves something, anything more than a physiotherapist who is reluctant to touch her.

Which leads me to the embarrassing, humiliating and, again, crushing experience of meeting May’s new private physio. That I felt these things is not her fault. It was the combination of seeing how beneficial she would be for May and having to justify the physiotherapy May has received so far.

These were the completely LAME answers I had to give. (SIDE NOTE: When will I become a good liar? Much less embarrassing.)

Her: How often does she have physio? Once, twice a week?

Me: Er, once a month? Maybe?

Her: And, what happens during these sessions? What does she do with May?

Me: Um, she’s kind of hands off.

Her: “Hands off?”

It was a statement rather than a question. A statement of total disbelief and disgust mixed with horror.

Hindsight is a brutal thing. I would give anything to go back and give May the physio she really needed over the past year. What a crucial year it was and now is lost.

Here’s what really gets me. Both May’s previous physios explained to me that physiotherapy was something they would instruct me to do with May. In other words, they would assess her needs and I would deliver it. When they explained this, there would always be this moment at the end of the conversation where they would say something like, “You do understand that right? Because some parents think it is our job to do the physio, or to come every week. And we just can’t do that. That is where you come in.”

And, I would nod.

But, now I see they were pushing that concept on me. Because it isn’t black and white – as in, the only options are 1) they do all the physio – unreasonable, or 2) they instruct and I do it – reasonable. There is a third option, where the physiotherapist works with us once a week, notes May’s progression, stretches her and does activities with her and THEN I try my best, in my untrained but motivated mama way, to replicate a small part of what she has done throughout the rest of the week.

That is what works. The only reason it wouldn’t be the case is either 1) laziness, 2) lack of resources or 3) lack of imagination.

As evidence that there are other things, new, simple things (that is the horrifying bit – how simple these things are) that we can do with May to help her progress:

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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Last night, in anticipation of the arrival of May’s glasses today, I asked to my husband, “Do you think the glasses will make a difference?”

“No,” he said, bluntly.

I made a kind of hmmm sound. The kind of sound wives make to husbands when a “no” isn’t quite a sufficiently long enough response.

He looked up at me, since I was still looking at him, thought better of it, and continued. “Noooo, but I hope.”

Like him, I can’t expect much more than that.

I picked up the glasses today, less than two weeks after doctors discovered she has an astigmatism. Just as you are, I saw her in them for the first time today. I hope hope hope this makes a difference. So, what do I think of them so far?

Hmmm. Very cute.

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Want May to win Best Special Needs Blog at Parents Magazine? The easiest way to vote is to register with your Facebook, Twitter or email account when prompted. May thanks you for your vote: Bounce!Bounce!Bounce!

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May and I celebrated BabyCenter’s Big Day Out by getting out in the sunshine and not prepping for the baby – due next week – at all.

Yep. I haven’t prepped at all. But really, what do you need besides some diapers, a couple of onesies and some just-in-case-breastfeeding-doesn’t-work formula? Right? Surely babies can shop for themselves. (Suggestions from readers very welcome.)

Besides, who wants to prep for anything when London is in the midst of a heat wave. Perfect for toddlers and mamas who like to sunbathe.

Besides enjoying some glorious weather, going outside is excellent stimulation for May. The sun warms her skin. The wind plays with her hair. The birds sing to her. The grass tickles her.

It is always easier to stay at home with a disabled child. Everything is there! But, if May is any proof, going out provides all kinds of wonderful stimuli for her to enjoy. None of which I can offer her in my flat.

On May’s Big Day Out, she practised pushing herself up on her arms in the grass. She’s much better at this, mainly down to her supergirl lycra suit, of which she was fitted for her third today. All her measurements have gone up! Wonderful news for the little girl who spent an entire year at about the same weight and suddenly, in the last few months, had quite a growth spurt.

1-2-3 and...

...up we go!

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May is learning to be more independent. How is she doing this? Because I am forcing her to.

Ah, yes. That old favorite of parents everywhere. The final countdown has begun to the arrival of Baby Two AKA Peanut. One month left. When Peanut arrives, little May will have to entertain herself more.

Is she interested in achieving this new found freedom? Not really. But, then, she wasn’t all that interested in sleeping between the hours of 2 and 4 a.m. and we forced her to do that too.

Independence for May, even on a small scale, is a big issue for us. May needs a lot of stimulation and assistance. For that reason, we will still be sending her to nursery (even when I’m on maternity leave, but for May’s sake, it makes sense). But, what of the days when May is home and the baby needs our attention? Or, I’m too exhausted to open my eyes let alone bouncybouncybouncy?

For all these reasons, I’ve been giving May more time on her own. I’ve bought new toys for her to play with. I sit her in her Bumbo or her special chair more, rather than in my arms. I leave her alone in her crib with her mobile playing or one of the other sing-song distractions hanging off it.

Miraculously, it is working! Like while I was typing the above, May was playing in her crib and I when I went in to check on her, I found this:

She’s asleep, by the way, not unconscious (worried grandmothers take a breath!). She goes to bed – naps or at night – awake, without endless cuddles as was the case. Another move towards independence!

It’s the final countdown to Baby Two’s arrival! Follow the last month of Mama Lewis’ pregnancy on BabyCenter, or via Twitter!

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May has conquered the Everest of the baby seat world THE BUMBO.

For those unfamiliar with The Bumbo Seat, it is one that babies can sit upright in as soon as they can support their own neck. The seat is made of a kind of firm foam that cushions and supports. The seat secures the baby’s legs, hips and lower back, leaving the upper back, arms and head free.

What the Bumbo manufacturers didn’t realize was that their design was actually a vehicle for kicking your legs and bouncing forwards and backwards (the point of the seat is that it won’t topple).

It took a long time for May to feel comfortable using the Bumbo. Archie’s grandma, Jill, our friends from Small Steps, encouraged me to drag it out from the depths of our closet and put May in it for just a few minutes once a day. At first, a few minutes was even difficult. But, over the course of a couple of months, and with the strength in posture her Supergirl Suit brings, May learned to love it.

Here’s the other thing I love about it… this is one more step towards independence. There is very little May can do on her own, and this is one.

Our resident Supremo Cute-o demonstrates below.

It can be hard to find toys for special needs kiddies. If you are interested, I posted about other toys May loves on BabyCenter this week. 

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I would like to officially call my daughter a loser.

After two weeks of trial by fire, and a lot of help from Nana, May is now sleeping through the night! We are victors in The Sleep Experiment!

The system is not perfect. She wakes from time to time – she gets stuck and needs readjusting, or has a seizure – but, the important thing is she doesn’t stay awake. Moreover, she doesn’t stay awake screaming for hours on end.

Because, if you recall, that was the state of affairs just over two weeks ago. May had been ill for almost a month, cuddling in bed with Mama and Daddy and she did not want to go back to her crib. She is a pretty determined young lady when she wants to be.

It is easy for me to get caught up in the idea that because May is brain-damaged she can not do normal things, like sleep through the night. But, a combination of desperation and sleep deprivation will make a mama try anything.

Here’s what I did:

– Established May wasn’t in pain when she woke screaming like someone was amputating her arm

– Gave her a bottle to calm her initially, but not later when it was clear she wasn’t hungry

– Once she calmed down, I put her back awake

– Or, if she wouldn’t calm down, I put her back screaming

– Then, I’d leave her for five minutes before checking on her

– If she was still screaming, I’d pick her up and give her a cuddle, but then back she would go

– If she had a seizure, or anything else that wasn’t just a temper tantrum, I’d give her all the time she needed

Does that sound easy? Try doing it for days and nights on end without hallucinating.

But, if you succeed, let me tell you… Sleep is a wonderful thing. It feels GOOD.

May is benefiting too. She is eating better. She is happier. She is startling less. She laughs all the time. Belly laughs of the kind that make a little pee come out (it’s okay, she’s in diapers).

Yes, all is well here. And long may it continue!

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Oh, the delights of good health! Ah-goo! Ah-gah! Oh-boo!

Since May’s health has returned, so have her giggles and cooing. She’s also back to bouncing, something she didn’t do for a couple of weeks.

Now that was a terrifying realization for me. No bouncing? Seriously ill. Cue conversations with my husband where I ask, “Should we take her to A&E?” (We didn’t.)

It has been a tough month. Fevers. Puking. No sleep. Screaming as the main form of communication.

No, it wasn’t fun. For the first time ever, my husband and I discussed respite care, which seems like both a godsend and a cheat. I’m a capable woman and it is not easy to admit you need help. But, lots of other parents like us receive it gladly, but it makes me feel like I’m giving up on May. Like many things related to May, it is another emotional hurdle to get through and once I’m through, I’ll feel all the better.

When I next meet with May’s key worker, I’ll ask her about respite care. We are thinking about now, but more importantly once the baby comes. Who will do May’s stretches with her? Who will take her to Small Steps School? Who will coo silly sounds back to her when she asks?

Because, in May’s own way she has been communicating more of her desires. It isn’t a sophisticated system (I want water during dinner = screaming). But, one of her new techniques, to pretend she is being tickled in order to get tickled, amuses me to no end. May squints her eyes, pulls herself toward her tummy and starts to giggle. Adorable.

Also, May enjoys hearing me repeat sounds she makes. She even recognizes that I’m doing it – which is a big step in itself.

She also responded to this hilarious video of twins imitating two old Jewish guys. “Oy, gevalt!” said May. (She’s also Jewish – though I exaggerated a bit there with her use of Yiddish.)

Actually, everything to do with her mouth she loves these days. Getting her teeth brushed. Making bubbles. Chewing on things. Oh, and grinding her teeth – an unfortunate result of her inability to lift anything to her mouth to chew on. I can’t stop her and I can’t hold a teether in her mouth 24/7.

Any dentists reading this? Or, parents with know-how? Advice on teeth grinding much appreciated.


You can now follow Mama Lewis on BabyCenter, where I will be writing about my pregnancy, or Twitter!

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