Posts made in April, 2012

From the archives: This week I’m… eating big girl food! (May 1, 2010)

Posted on Apr 30, 2012 | 0 comments

From the archives: This week I’m… eating big girl food! (May 1, 2010)

While we marvel this week at our little three-year old, where was May developmentally at her first birthday? Rewind almost exactly two years ago: we’d been working with May on eating for six months at this point, but she had made very little progress and was losing weight. Step in May’s SALT (Speech and Language Therapist) who taught her to eat. How we take for granted this simple and extraordinarily complex set of skills! Tonight, while you eat dinner, note the passage of your food from plate to stomach: lifting it on to a fork, placing it accurately in your mouth, pulling the food from the fork into the mouth, chewing it down and finally carrying it from the front to the back of the mouth so that you can swallow it. Then, we counted May’s intake by spoonfuls. “She’s had five spoons today,” her key worker at nursery would say. And, that was good. Bad was zero, which was all too frequent. Now, May finishes a bowl of food with a stew-like consistency and a dessert. May was meant to be tube fed for her entire life! Our SALT is a superhero to us. Literally, she gave May the power to sustain her own life. ____________ May 1, 2010 For months, we’ve been trying to wean May of her bottle. But, she loves milk. She loves milk and we thought she hated everything else. She didn’t cry or scream when we tried other stuff, but she spat almost all of it out. Yesterday, May’s SALT visited her at nursery. She showed the staff and I how to help May eat. She placed the spoon just inside her mouth and then left the spoon right there, at the front. I’ve been doing something similar for months, and have met with some success. The poor nursery team have been very anxious that they can’t seem to get May to eat anything at all, so they were excited to try this new method out. They tried. May did her typical spitting. The team and I laughed and made remarks about cheeky May being so picky. “No,” her SALT said, in her lovely, melodic voice that can get children to do anything she pleases, “she likes the food. See how she moves her mouth and tongue. She wants more.” The SALT leaned in with more food for May and cooed at her, “Come on. Would you like some more? Yes?” I saw how May smacked her lips and stuck her tongue out in a sucking motion. I had seen her do this a thousand times and it never occurred to me that she wanted anything more than milk. At dinner that night, I was determined to get more food down May. I no longer saw it as a battle of wills (and yes, these thoughts do run through my mind: me vs baby with baby usually declared winner). Instead, I saw how May is using the muscle of her tongue in a back/forwards motion, as you would do when sucking, and she needs to improve her forward/back, what you use when chewing. I tried the baby food. May wasn’t pleased with that. I opened the fridge. What’s a Jewish mother to give her baby that is soft and tasty? Smoked salmon and cream cheese! May loved it! And then, this morning, scrambled egg with cheese and orange juice happily sipped out of a bendy, pink cup. More smiles and feet kicking! The ultimate sign of satisfaction. We are on our...

Read More

The Mystery of May’s Supergirl Suit (UPDATED)

Posted on Apr 28, 2012 | 3 comments

The Mystery of May’s Supergirl Suit (UPDATED)

I suppose it was inevitable given my uproar. About six months ago, when May was fitted for her new lycra AKA supergirl suit, I was told she would not receive another one if she had growth spurt a few months later. Put aside the lunacy of making a medical decision based on financial constraints and focus instead on my uproar itself. If you had been May’s physio, what would you have done? When May received the suit, it was a bit loose around the legs. This goes against the whole principal of the suit – it is meant to be the snuggest fit possible. But, since her legs weren’t her main problem I accepted it. The suit works wonders and I didn’t want any further delay. It only works if worn all the time; at that point, she’d been without one for a couple of months. Fast forward six months. May’s suit has lasted longer than any of us could have anticipated. However, it is rubbing against the inside of her thigh and around her wrists – normally a sign it is too snug. At the fitting, May is measured by her old physio and another physio from the team. Every one of May’s measurements is smaller than the ones for the previous suit. Every single one. How is that possible? May has definitely grown. Many mornings, I change her out of an outfit because I discover the dress is now a shirt, or the bottom of her jeans hit the middle of her shin. Besides, some of the measurements are for places on the body like her wrist. How often in your life has your wrist shrunk? We try on the suit. “What do you think?” May’s old physio asks her partner. “Looks loose to me.” “Me too,” says the physio, nodding her head in agreement. I am baffled. “But, I swear May has grown.” I list all the reasons I say above, and to be honest, I’m a bit embarrassed. These suits are expensive and my desire to have one for May doesn’t mean I want to spend the council’s money without any need. I point out the rubbing and we take the suit off to check it, after measurements are done. Sure enough, there are red spots where it has rubbed against the sensitive skin of her thighs and wrist. But, what I thought was tightness, was just the zipper and worn lining. The physio feels the material. “I think what’s happened is that May has had the suit so long that the material has become loose. How often do you wash it?” I admit to washing it several times a week. She only gets one, and needs to wear it every day. The physio agrees that washing it is essential, but seems to think that may be what caused the loosening. Regardless, they agree that May needs a new one and it’s been ordered. As I dress May back in her normal clothes, it hits me. The mystery of May’s supergirl suit. Are you thinking what I’m thinking? _____ UPDATE: First of all – the mystery of the disappearing post (for those of you who noticed): I “unpublished” the post because I wanted to update it and didn’t republish it. Secondly, I guess the mystery of the suit was not as obvious as I thought. Not even to myself. I went out with some friends last night, one of whom has a child who uses a supergirl suit and she said her suit did stretch out after too much use and washings. Apparently, you are...

Read More

Happy Birthday May! You are THREE!

Posted on Apr 23, 2012 | 9 comments

Happy Birthday May! You are THREE!

Six-months ago, when I wrote my bi-annual birthday review of May, I really despaired. I didn’t say so in the post – these birthday posts are times to reflect on progress and celebrate May’s happiness. But, her list of achievements was not all that distinguishable from the six-months previous. When I composed it, I panicked. Was May’s progress petering off? Would she still progress and develop in a healthy way? Six-months ago, just as I was writing that post, May was about to have a stimulation immersion. This after my very troubling discovery that May had been in receipt of very little therapeutic stimulation for some time. So, it was about six-months ago that all this began: one hour private physio every week a half hour music therapy every week finally saw her OT again after languishing on the waiting list for months acquired a standing frame in school and at home started at her special school in January (morning sessions) moved to a new room at nursery (afternoon sessions) so received a lot of attention and mixed with children of her own age Where previously we had only the added input of the Small Steps School team (and, where would May have been if I hadn’t received their support and guidance?), now she has stimulation coming from every direction. Did her stimulation immersion help her progress? Did it made a difference? In keeping with previous birthday posts, let the celebrations begin! May, when you were born, here is what the doctors definitely knew you would be able to do: – pee – breathe At three years old you can: – sleep through the night! (WOOHOO!) – relax your muscles, particularly your hands – move in far more natural way (less jerky and tense movements) – move your arms and legs independently of one another – twist your torso from side to side – go pee-pee on the potty (if brought to it at specific times and held there by mama) – recognize (by laughing hysterically) when a light changes color and look in its direction – sleep through the night (Double WOOHOO!) – make sipping movements with your mouth when I ask, “Do you want water?” – play an instrument – eat three full meals a day (that’s major – May often couldn’t finish meals) – be unbelievably happy almost all the time for several months straight – fully appreciate our new home entertainment system that is Baby Ieuan – sorry, did I mention SLEEP THROUGH THE NIGHT??? Given enough time, I probably could have come up with ten more things. Happy Birthday to May, my amazing half-brained baby genius! Who knows what incredible feats your third year will...

Read More

Learn from my mistake: lock up your strollers, people!

Posted on Apr 19, 2012 | 1 comment

Learn from my mistake: lock up your strollers, people!

A few weeks ago, our beloved Britax B-Ready double stroller was stolen from the front of our house. Even more perplexing, one of the wheels was broken, so how they traveled further than our front gate is beyond me. We were managing to use it – with a bit of trickery – while we waited to hear about a replacement wheel, but I was quite certain that no one would take it because of this. Of course, after, I felt like a complete idiot. Buggies like ours cost almost £500/$850. Why I hadn’t locked it away – when I live in a major, metropolitan city – I have no idea. Our buggy was irreplaceable. First of all, it isn’t even sold in this country, so it is literally irreplaceable. And, it is a far better stroller than most of the ones out in the market. For those of you with a disabled child with a sibling under-4, you will know that the combined weight of both kids plus the stroller is immense. But, I could turn the Britax B-Ready with one finger. And, it was one of the few that would take her weight until she was four or five years old. Out of this catastrophe, came a lot of generosity. Many people wrote me with all kinds of suggestions about how I might acquire a new or used double buggy. One of my good friends, lent me an extra one while I figured it all out, while others fished into the black holes of their attics and garages to dust off their old double strollers. Thank you to all of you! In the end, the good people of Britax helped us acquire a new Britax B-Dual – which is very similar to the B-Ready, only slightly smaller and sold in the UK. (See photo of a happy Ieuan modelling it!) In addition, BuggyGuard contacted me with their sympathies. They sent me one of their BuggyGuard locks – a very cute panda – which I immediately attached to my buggy (You can see it in the photo to the right). I don’t plan on ever getting in this predicament again. Actually, I’m surprised I don’t see more locks like the BuggyGuard on strollers. It is very small and uses a combination (good if you have a tendency to lose your keys, something I have been known to do, like EVERY DAY OF MY LIFE). Also, it’s for people like me, who despite having their buggy stolen out of their front yard still leave their purse in their stroller when they need to do a quick diaper change – don’t judge me, people. The thin chain loops around both the stroller and my purse, which is stuffed into the compartment at the bottom, in front of the second seat. (Can you see it? I’m not sure. Rest assured it is.) Finally, I want to add… for some reason, transportation for two kids under-3, when one is severely disabled is one of the areas I received zero help with. So, at a later date, I plan on doing a post listing all the products I found that would be suitable – from double buggies to travel systems to connectors that allow wheelchairs to push a buggy. If you use something that you find indispensable, please email me or add a comment to this post so I can add it to my list! Disclaimer: BuggyGuard sent me the lock free of charge to use in this review and on a daily basis. A big thank you to them for their generosity and...

Read More

This week I’m… bouncing (VIDEO!)

Posted on Apr 18, 2012 | 2 comments

This week I’m… bouncing (VIDEO!)

Ah… if only all therapy could be bouncing therapy, May would be an Olympian by now. Normally, I wouldn’t recommend a baby bouncer for a child with cerebral palsy. I know that it can reinforce all the wrong kind of movements: for example, hyper-extension of the legs and an over-reliance on the support of the frame rather than garnering strength from their own positioning. (Therapists, if I need to be, please correct me!) So, I don’t recommend it. BUT, I do let May use it. Moreover, I like her to use it because it is one of the only situations (though her standing frame is proving to be another) where she will play independently. And get exercise – also difficult for May since her movements are so limited. Here’s what I like about this video: 1. It shows her new shoes in action. She is on her tippy-toes, but not nearly as often, nor as pointed as she was. 2. Her legs move independently of one another. It almost looks like a walking movement, which is AMAZING. Literally, one step closer to walking. 3. She doesn’t cross her legs as much as she used to. It used to be that in this bouncer, her legs would be constantly crossed at the ankles. No more! Compare her leg movement above to this video here, from over a year and a half ago. Can you spot the...

Read More