Scene from my settee

I'm thinking car mechanic? Pot Holer? Monster under the bed? What do you think of her future career prospects?

And look at that little drawn up leg. Looking at it like that, bent up, twisted out, shorter than the other one, it's obvious that it is dislocated. Why didn't we notice it before? Well, because it's been like that for months. And we have had it x-rayed before, in that position, and it has been absolutely fine. Still, I can be thankful. She is not in pain. It does not bother her at all. She is more mobile than ever before (witness her explorations). And she is my daughter.

Tia

How does she know?

Last night, I settled Mog into bed, in a very happy giggly mood, put her music on, and pottered about the house doing a bit of a tidy. Then sat down at the computer and pootled about on the 'net for a while, had a nice long bath, read in bed. During all these activities, noisy and quiet, I could hear Mog's sleeping breaths - there is no sweeter sight than a child asleep at night. All calm, sleeping sweetly.

I turned off my bedside light and she began to cry. Now there is no way she can see any light in my bedroom from her bedroom, and it's a silent switch, I was already in bed when I turned off the light, and had been for a while. Yet this is something she manages on a regular basis. How does she do it?

So, light back on, sorted her out and made her comfortable again, gave her some sleepy medicine, popped her music back on and crawled back into bed. Peace.

This morning Mog woke me up fairly early (very early for a Saturday!) crying and uncomfortable again. So I sorted out her morning medicines and tried to resettle her; not going to happen. Lots of cuddles, lots of rocking, and some really fantastic communication - she told me she was feeling sick, tummy ache sick, and also her hips were hurting. So dosed her up with some painkillers, laid her out on the settee to empty her stomach for her (she cannot vomit orally), she then wanted a blanket and settled back to a beautifully peaceful sleep.

I watched her for a while, carried on with my computering, put some music on, turned it off, generally alternated between early morning pottering and sitting quietly. And then decided it was definitely time to get up properly. The very instant I stood up to get dressed, Mog woke. How does she do it?

Tia

Talking to parents.

Patyrish has posted a list of things not to say to a special needs parent over at her blog, My New Normal. I think our dietitian and nurses could do with reading it.

I have to say, I like it when children ask questions about my girls. I'd far rather children had their questions answered (although it still makes me giggle when their parents tell them a nasogastric feeding tube is "full of oxygen" - yes folks, that's right, the little Y port at the top is actually the world's smallest concentrator, and that syringe full of what appears to be bottled water, the one I'm pushing though the tube, that is in fact liquid O2. Let them ask, I'll answer. As Patryrish points out, I might not answer in huge detail, if I'm tired or in a hurry, but ask me on a good day and your child (and you) will learn more than you could ever wish to know about enteral feeds.

I'd far rather your child looked and asked than just looked and stared. It's natural for children to ask questions - adults, you could perhaps have a little more discipline and think slightly about the impact your questions might have. But if my daughter is the first child your son has seen with a long plastic tube up her nose, then it's natural for him to ask about it. Children who come up and say hello aren't bothering us - although I must admit to having been bothered a little by the child who ran away screaming that my daughter was dead because she didn't answer. And I must also admit to having been caught cackling with laughter on more than one occasion when a child who has started walking backwards in order to continue to stare at my girls has walked straight into a lamppost/parked car/large muddy puddle. This makes my girls laugh too, so I suppose I should thank you for providing our entertainment - only fair really since we were providing yours up until that point!

If you want some specific conversation tips for my girls, Mog will almost always be pleased to receive a compliment on her shoes or her hair (and almost certainly kick you if you fail to notice her new shoes). Little Fish would probably prefer it if you didn't notice her at all - ignore her and she'll come to you, pounce on her and she'll panic. Unless you're a little boy, in which case she'll chase you and love you and giggle at you forever.

One thing I'd say as a general please don't - please don't insist on telling me, over and over again, in front of the girls, what a saint I am, how wonderful I am, how hard my life must be - think about what you're saying. I know you mean well, but in fact you are pointing out your assumption that my girls are a huge burden to me. They're hard work, I don't deny it - but so are any children. And I don't want them hearing the whole time how wonderful I must be for taking them in/taking them on/giving up my life to be with them. That isn't how I see it, and it isn't how I want them to see it either. I chose to have my girls, I love them, they enrich my life immeasurably. There is nothing sweeter than Mog's giggle, than Little Fish's arms around my neck, than the fact that Little Fish's first concern every morning is "I need a cug-cug Mog", and that Mog's first big grin of the day is saved for Little Fish's kiss.

Do by all means tell me how wonderful the girls are! I'll take any amount of that! Not as in "what a testament to your hard work" but as in "I see their gorgeousness". Perhaps you don't. Perhaps you do only see the hard work, the things they can't do. I'm genuinely sorry for you if that is the case. Because my girls are fantastic; they've changed my life, and they are changing the lives of other people who meet them. Mog brings Love. Little Fish brings chaos and determination and Passion.


When I moved from having one disabled child to having two, things changed a lot in my life. My house is no longer my castle; I have people coming into the house regularly to help with care, to help me keep the house clean, to inspect the house and the girls and myself (fostercare regulations). I was fiercely, proudly, independent. No help needed here, I can do it all myself. Once I had two children and one of them was no longer a baby, truth is, I couldn't. I can push two wheelchairs on level ground, but getting both girls across a road is a bit like the old puzzle about the man with the boat, the chicken, the fox, and the hay. I have had to rely on the kindness of strangers. And strangers have been very kind. People open doors, people push one of the girls across the road for me, move displays in crowded shops, carry trays in cafes, stop to pick up dropped toys. We live very close to our church , and always someone will walk home with us to help push one of the girls. One of our neighbours, who is not a church goer, nearly always times his Sunday morning paper run with our walk up to the church, and will push one of the girls there for me. Today I had a visit from the children's worker at church, planning how to include the girls more effectively in their Sunday School classes for the following year. People care.

These are all helpful things. Don't be afraid to offer help, if you have help to offer. But please don't be offended if we thank you for the offer and refuse the help. For example, right now, our babysitters need to be nurses or know about the girls' medical needs. I can't accept casual babysitting help from a 14 year old; the responsibility would be too great. I would love it if that same teenager would be interested in spending an afternoon playing with the girls whilst I get on with something else, or would like to come on a day out with us though. It isn't that I don't trust your daughter, it is that I know how quickly things can go seriously wrong with my girls.

Similarly, holding doors open is very helpful. But do please check we actually need to go through the door - sometimes we're just walking past! And also, when you hold the door open, it is most helpful if you can stand behind the door. If you stand in the middle of the doorway, pushing the door with your arms, we have to somehow walk through you to get through the door. I understand that walking through the door first seems like bad manners, but I'm also very uncomfortable about ducking under your armpit. Especially with a child who is still learning the finer points of driving her power chair!

Thanks for listening.
Tia

Cats and Little Fish

Little Fish is scared of cats. I like them. I'd almost go so far as to say a house is not a home without a cat somewhere. Before Little Fish came along, we had a wonderful cat called Henry. He moved out when the ceiling fell down on Bob, and we've been catless ever since (he wasn't hurt, just shocked, and he moved to a house further down the road where he lived happily for a couple of years. He seems to have disappeared completely now).

Last night I visited friends who have just had kittens. Not personally; perhaps I should say their cats have just had kittens. They keep pedigree cats (British Shorthair), and have three seriously cute baby kittens, two creams and a blue. Beautiful. Cute. Fuzzy. We won't be getting one of their kittens - apart from anything else, Bob still has not finished and I'm not introducing a cat into this building mayhem. But we are working on Little Fish slowly; last weekend she even managed to touch one of my parents' cats without breaking into a cold sweat. Progress.

Meanwhile I remembered why a kitten might be a bad idea. Especially when combined with Little Fish's willingness to "help".

moar funny pictures

We'll see.
Tia

Dear Dietitian

Thank you for seeing my daughters in clinic this morning. I appreciate the time you took to read their notes before seeing us, and I appreciated your ability to talk directly to each child, not just to me.

That said, I would like to tell you how upset I now feel after our appointment.

You took Mog's weight and were happy that she has put on weight. I am too, it's good news. However, I wanted you to look at Mog's weight in relation to her height. She has grown a lot recently, and as a result is very skinny. You did not do this, and would not look at her ribs, focusing instead on your chart, which put her nicely on the 25th centile. I know that she's on the 25th centile for weight; she has been for a very long time. However, she is five, and wears clothing for children age seven - she's very long. Surely then, to be in proportion, she ought to weigh rather more than she does?

I realise you are new to my girls, and that there has been a vacancy in your post for several months. But there were specific concerns raised back in the autumn, and I was hoping to deal with those today. You did not have that information to hand, so now we will have to wait again.

Next, Little Fish. Little Fish is overweight. Thank you for calling it "well covered"; I did appreciate it. I know that she is overweight. I'm not sure how to put a toddler on a diet, not when she already has an extremely healthy diet, that's why we wanted to see you. You said that she must not have cows milk any more, but that she should instead have a special medical formula. One which is higher in calories than cows milk. How will that help? I told you what Little Fish eats on a typical day; half a weetabix with a tablespoon of fruit puree for breakfast, a tablespoon of pureed savoury - made up proportionally of a little meat, a little potato or rice, and a lot of vegetables - and another tablespoon of apple puree or a mashed banana, sometimes a yoghurt for lunch. And the same again for dinner, with the addition of a small piece of chocolate. More stewed fruit as a snack, if she needed it.

You appeared to be listening. But then told me that she needs to eat lots of vegetables (she does, I've just told you this), lots of fruit (again, I have just told you this), and that she should "fill up" on fruit. She doesn't ever feel full - she has limited sensation in her stomach. I told you this too.

I feel strongly that you did not hear what I was saying. You looked at me. I am overweight. I know this. I am overweight because I eat too much (why I eat too much, well that's a different issue and a much longer post). It does not render me incompetent in the kitchen. I am well aware of how to give children healthy nourishing meals. I fed Goldy for years, and despite being immobile, and having eating as one of the greatest pleasures in life, she was not in any way overweight. I know how to cook for children. I know what children need to eat in order to sustain life, in order to put weight on, and in order to maintain healthy lifestyles. I also know what foods to avoid. Little Fish has never had any kind of junk food - she can't; it doesn't puree. She doesn't eat biscuits or cakes or popcorn or crisps or chips or deep fried anything- she can't.

What I needed was advice on how to feed her a diet which gave her everything she needed without causing her to put on more weight. If I cut her food down further I am worried that she will not be getting sufficient fruit and vegetables. If I cut out the meat and dairy, cut out the potato and just leave the fruit and vegetables, that's not balanced either, is it?

I didn't need a basic lecture on healthy living. I am well aware of that. I needed some specific suggestions for how to help Little Fish. I know that she receives all her liquids via a tube. But that is simply a method of delivery. Her cousin the same age drinks her cows milk. Why are you insisting that Little Fish has a jar of artificial paediatric formula instead? One which is higher calorie than the milk you are so worried about in the first place? I know she is less active than her cousin, she receives proportionally less food than her cousin to compensate. Her cousin has two weetabix in the morning, Little Fish has half of one. That continues throughout the day.

I would appreciate it if you could get back to me with some advice tailored to Little Fish's needs, rather than targetted at my own weight issues.
Many thanks,
Tia

Hip Op Replay?

Mog had major surgery in September. She's been recovering ever since, found her legs again fairly recently and enjoys kicking me anything in reach. She's doing really well. Yesterday we had a follow up appointment, a hip Xray and a consultation with the surgeon. He's very happy. She still has pain, she still needs to sleep in her brace, but he's more than happy for her to start taking some weight again and for us to be led by her as far as physical activity is concerned. Hurrah.

Little Fish also had a check up appointment yesterday. Same surgeon. This is the appointment she should have had last week. In my innocence, I had assumed someone with sense had rearranged her appointment so that it would coincide with Mog's. But noooooo. Since I had still had no paperwork telling be about the appointment by Monday, I phoned the surgeon's secretary to find out what time she would be seen. Imagine my delight at being told her appointment was the first of the day, at 8.50 again. Mog's appointment was not until 11.30, our carer was arriving late as she had to see to another child first, so getting to hospital for that time was really not feasable. Nevermind, we will race as much as we can, and I will have time for a nice hospital breakfast between their appointments.

We made it. Just. Two minutes to spare. I suppose it was therefore inevitable that the notes would not have been sent down to the outpatients department for some reason. However, eventually Little Fish's notes arrive, and we are sent down to the X-ray department. I heft her onto the table, strip her off, don my lead apron, deny any possibility of pregnancy, and hold her down for the vvzzzzt of the X-ray machine. Redress her, steer both girls back to Outpatients, and wait to be called. Little Fish likes the orthopaedic hospital. The little shop which sells chocolate is just next door to outpatients, and the doors are automatic. I therefore spend considerable time chasing her back into the department and foiling her attempts at shoplifting.

Eventually we are called in to see the consultant. We talk about Little Fish, and then I head back to reception. Mog's notes have arrived, and she does indeed need an X-ray (I could have told them that, in fact I did tell them that). So, back down to X-ray, same radiographer, same procedure. We've only been away an hour, she still has to ask me again whether I might be pregnant. I tell her I've been a little busy, re-don the lead apron, strip Mog off, hold her down. Vvzzzzzt! Hold on, it hasn't gone low enough, they can't see the bottom of the pins in her femurs. Vvvvzzzzt again and we are done. Just in time - Mog is giving a fine example of why we don't lie her flat on her back.

Back through to Outpatients, back to the receptionist. Do I have time to visit the canteen? No, the surgeon would like to see Mog next. Or she could put another child in but then we'd have to wait. No thanks, I'll survive without coffee for another half hour or so.

We see the surgeon, he pronounces Mog healthy, and we are released for another three months. Well almost - you'll notice I didn't mention what he found when he examined Little Fish.

He asked me if I'd noticed anything about Little Fish which was concerning. I pointed out a rib which had become more prominent in the past couple of weeks, and her left foot which is now very flexed, no matter how we splint it. He showed me the X-ray. Little Fish's hip is completely dislocated. As she has no feeling in her legs, this hasn't been causing her any pain. This is a blessing, since it could have been very uncomfortable. And a curse, since a little pain might have warned us that this was happening. There were no obvious signs. Now the surgery Mog has just been through will probably not work for Little Fish; Spina Bifida works differently to Cerebral Palsy and I'm still learning. So instead he wants to book Little Fish in for some exploratory surgery - inject dye into the joint and see what is going on. He will at the same time snip the tendons in her feet which are causing it to flex. And he will refer her to the spinal consultant who will review her spine as this is likely to be causing the rib deformity.

This has come completely out of the blue. In 2 weeks' time Little Fish has surgery scheduled - a long awaited operation to fit a feeding tube directly into her stomach to replace the tube which has lived up her nose since she was a baby. A minor op, but with Little Fish's breathing problems, no anaesthetic is minor. We had thought that this would be the only surgery she would need until she is about six, when she will have various different surgeries to give her a semblance of continence. And now we learn she'll have to have another anaesthetic soon to take a look at her hip, potentially followed by more surgery to put it right. Whilst I would be happy to leave it out as she does not walk or take weight, and she has no feeling so is not in pain, there is a problem as her other hip is firmly in socket. One hip in and one out is not good news - it will twist her pelvis and her spine will twist to accommodate that - this is probably what is causing her rib to stick out, and what causes the lop sidedness people have previously assumed was just poor positioning.

So for now all we can do is make sure that Little Fish's position is good whenever possible. Adjust her various chairs to make sure they support her properly, look at how she sleeps at night, watch her when she is wriggling around on the floor. She can fold those floppy legs backwards and upside down and right around. Probably not a good thing to be doing.

Tia

Crochet away!

I may have mentioned my fabric explosion. Sewing is great for keeping hands and body busy. But the machines are noisy, meaning I can't use them at night, and they are big and heavy, so I can't take them with me when we go to hospital or away.

I have a wonderful knitting box. It was my grandmother's, and still has many of her old patterns and women's magazines from the '60s and '70s. I can't imagine ever wanting to knit up a pair of woolly britches, and I cannot figure out how to do cable stitch either. But I love the smell which greets me when I open the box; slightly musky, wood and wool and paper and just the faintest hint of Grandma. And I love the fact that my needles were her needles. Her fingers flew across the wool; whether she was knitting or crocheting even the biggest project visibly grew through the course of the afternoon. I'm a lot slower; I have to be content with measuring my progress in inches rather than feet. But I still enjoy it.

When Goldy died, I reached for the needles and made a very boring plain brown blanket. I don't know what we'll do with it; it's long and narrow, too wide for a scarf, too thin for a lap blanket, too ugly for a baby. Little Fish will probably annex it for her dolls. Or possibly to carpet a pretend play house.

Over the weekend, Trina sent me here. And here. And here! And we sent each other to lots of different places courtesy of You Tube (search on crochet, far too many to list). Which inspired me to put my knitting needles away and dig out the crochet hook. This lady's you tube video clips were really helpful in helping me figure out what I'd forgotten (turns out I was trying to knit with a crochet hook. It doesn't work.

Inspired, I went off to our local wool shop to pick up something yummy. I don't have a wool stash (yet!), so am forced out to the shop. Oh the hardship. Forced to go shopping. In a craft shop. Awful! Imagine my feelings when I discovered the shop had a sale on all their wools. All their discontinued ranges were marked down. A lot. I now have the most yummy Rowan plaid yard, seven 4oz balls for the price of 2, five balls of pale blue alpaca silk for the price of 2, and two packs of ten balls of baby double knit, one cream, one white. We have a lot of babies due in our family over the next six months or so, and these wools will be perfect. Not right for crocheting, but hey, can't have everything, right?

So, do I go back to the wool shop and fill another bag with bargain wool, running the risk of finding even more knitting projects, or do I give up the idea of crocheting for now, and run with the knitting instead? I definitely want to have the crochet down pat before Little Fish's hospital trip - a ball of wool and a hook take up less space and are less pointy than a pair of long needles. But if I go back I just know I'll end up with more packs of bargain knitting wool. I wonder if I should just risk playing around with the silk - it's so soft.

Watch this space!
Tia