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Obvious solutions, people!

My husband seems to have bad karma when it comes to toasters. He destroyed our very expensive 11 year old Dualit toaster, that we were given as an engagement present, with a potato farl. Instead of using the toast tongs that were attached to the side of the toaster, he kept pushing on the lever handle more and more aggressively until said potato farl got mashed to a pulp and spread all over the toasting filaments. A classic example of when an obvious solution completely evades a rational, intelligent human being. I mention this because I’ve just toasted a crumpet and the toaster smoked like it was sending signals across the prairie. I looked inside the toaster to see there were cinders of various sizes inside the toaster causing said smoking. I then spent five minutes removing all crumbs and cinders from inside the toaster so that it will now not smoke. I have to add that that was the first time I had used the toaster this week. My husband uses it all the time.

I can’t blame my husband. It seems that there are solution evaders in all walks of life. The one that has really got my goat at the moment is doctors. Moo has had a tracheostomy since the day she was born. At first, it was clear that she needed one as she had absolutely no airway and, without it, she would die. Obvious solution. Over the years, however, she has improved to the point that she now wears a Passy Muir speaking and swallowing valve for up to 12 hours a day. In tracheostomy terms, this shows that she has a very good airway around her tracheostomy because those things are permanently closed and only open when she breathes in. They are very hard to tolerate if your airway is occluded. Each MLB (micro laryngo broncoscopy, the op she has every year to check her airway and see whether her trache is ready to come out) she has had over the last three years has shown no change whatsoever, despite her growth and the fact that her Pierre Robin (cleft, abnormally small jaw) sequence has self corrected and her jaw is now in the normal position. Each time, her consultant mentions that Moo’s mouth doesn’t open that wide and it is a hindrance.

After her last MLB, I started thinking. Could the fact that her jaw does not open that wide be the reason that they can’t see her trachea safely? If they can’t see her trachea safely, they can’t remove the trache because she is classified as unintubatable. If she was knocked unconscious without a trache, they could not guarantee they could intubate her and save her life so the tracheostomy has to stay put.

So I go to an appointment at the cleft clinic at Great Ormond Street, where all of Moo’s complicated care is, and mention this to the doctor. The doctor talks to the ENT registrar. The ENT registrar talks to me. It is possible to make a jaw open wider. It’s not easy and it doesn’t always work but it is possible. There is a potential problem with the larynx that would mean it would be pointless and, if Moo’s consultant thinks she has this problem, there is no point trying. He’ll talk to the consultant and get back to me. I get a call a couple of days ago and the consultant thinks that, actually, it’s worth trying.

Basically, after three years of no change, there is the chance that widening her mouth may result in her being able to be decannulated and get rid of the life threatening tracheostomy. Now, seriously, why has no one thought of that before? Doctors are so stretched that they see patients, deal with what they see and can treat but all thinking seems to stop there. Could there be a way around this problem, could there be something we could try to make things better?

When Moo was a baby, she could projectile vomit about 30 feet. It was impressive. She managed to vomit across a brand new Starbucks; the carpet, the coffee table and the brand new leather sofas. My NCT group were shocked. The Exorcist had nothing on this baby. It was evident from birth that something was going on when she ate. It started with her wiggling and looking uncomfortable. She had terrible wind. At three months, the vomiting started and just got worse and worse. At first, it was only a couple of times a day, then it was after every single feed. We would keep her quiet and still for an hour and a half and hope it would stay down. Sometimes, it did. St George’s diagnosed reflux, our local hospital agreed with them. She was on Domperidone, Ranitidine, Gaviscon; the maximum doses of all three. The vomiting continued. She had two 24 hour pH studies done, numerous barium swallows; all of which showed minimal reflux or none at all. The hospital insisted it must be reflux. She vomited on doctors and nurses and, even though the milk would look like it had come from straight out of the bottle an hour after being ingested, they still said it was reflux. My mother said “maybe she has an allergy”. I told her the doctors would have thought of that. I was recovering from my trauma and only after six months on medication did I feel like my normal self and started thinking about it. At which point, Moo had been on medication for 10 months, to no avail. Finally, I put my foot down and demanded that they try changing her milk. So she went on Nutramigen which improved things slightly. Then they changed her to Neocate which your body has to learn to digest because it is milk broken down to its amino acids. Ten days later, the exact time it takes for the body to learn to digest it, and Moo stopped vomiting, completely. The irony is that she grew out of her allergy eight months later.

The doctor said, “so Moo has a milk protein allergy”. Really?! No shit, Sherlock. You let her suffer for ten months without thinking about it. She was on seriously strong medication for no reason. The only reason they found out about her allergy is because I put my foot down.

My cousin has just had a baby. Said little dude is suffering with all manners of trapped wind. The story sounds familiar. Has he been tested for intolerance or allergy? Apparently not, as the doctors will only do that as a last resort. Is it just me or is that ten tonnes of stupid? A child may or may not have an allergy to milk but they’re going to make the child ingest it until they have tested every other avenue. Here’s an idea. Why not test for milk allergy or intolerance first, rule that out, then move onto reflux? To treat an allergy you change the milk, to treat reflux you have to dose the poor child up with meds and get the balance right. However, if a child has an allergy, no amount of medication (which costs the NHS thousands) is going to help.

The moral of this rant is really this: if you think you have an idea of how to solve a problem with your child and you are dealing with the establishment, speak up because, if it’s obvious, they won’t have thought of it. They simply don’t have the time to analyse and think about each and every case. And sometimes, the most obvious solutions are the ones that are missed completely.

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I’m supposed to be ironing, but . . .

I just have to say this. Special needs is expensive!! Granted Moo has her own private, unique little cocktail of conditions going on but the one that costs a bomb is Sensory Processing Disorder. It doesn’t help that I haven’t finished The Out of Sync Child, otherwise known as the parent’s SPD Bible. Between being a full time carer, mother, wife, house cleaner, pet owner (you wouldn’t believe how much time my two cats take up), administrator and slayer of the mammoth ironing mountain that never shrinks, I just haven’t had time to read it in full. Of course, Moo’s SPD doesn’t care about that. It is developing relentlessly and what it is doing now could make all of Moo’s other issues raise their ugly heads en masse. Basically, it won’t let her get to sleep. This is a child with a very limited energy resource and a strength of will that would have made Hercules baulk. So, what we have is a child whose mind thinks it can conquer the world continually and a body that can’t make it through the day. If she doesn’t get enough sleep, her body will crack up. There will be chest infections that could lead to hospitalisations, transient ischaemic attacks (TIAs) (that’s mini-strokes to you and me), headaches that make her scream in pain and, of course, the real evil monster lurking in the wings; the ever present chance of a major stroke.

And she’s not happy about it. We’ve had nights with tears when she just can’t get to sleep and she is so tired that all she can do is weep. Moo never cries so it is heartbreaking. We’ve had hours of playing in her bed, as fresh as a daisy in appearance. We, as parents, are very lucky. Once in bed, Moo just doesn’t get out, unless she needs a wee, thank goodness.

So we’ve tried a weighted blanket that I made, the beads cost a fair bit. It worked for the first week but things have moved on since then. It now works after she’s been up a couple of hours and I’ve given her a deep massage and then she only wants it on her legs and hips. Then we’ve bought the relaxing classical music, she likes it but it doesn’t relax her. I’ve bought a massage brush but it you do it too early, she loves it but it does jack to relax her. She’s taken to kicking her bedroom walls for the pressure feedback in her feet. It sounds like she’s having a party with a herd of elephants. Now I’ve ordered Lycra fabric to make a bed sock and a salt lamp. “What, pray tell, is a bed sock?” I hear you ask. It is exactly what it says on the tin. It’s a sock for your bed, well, mattress. Basically, you sew Lycra into a sock shape and slide it onto the mattress. It should be snug but not stretched too tight, a bit like a condom. The person climbs under it and it gives a deep pressure. The bed sock should give the right pressure feedback and the salt lamp should help with the orange glow to get her to relax but also the salt in the air will help her lungs.

All this on top of the private neuro assessment that we have booked with Hemispheres. I am hoping they will be able to tell me everything so I know what I am dealing with. At the moment, I deal with the obvious and hope I don’t make other stuff worse. It’s all a crap shoot.

And, yet, I still wouldn’t change a thing. This is the child that I took to London Zoo yesterday for the Special Children’s Day and let her loose in the shop. She was allowed to choose anything she wanted. There were books, girlie things, cups and saucers and what did Moo choose? She chose a very large, long, stuffed snake. No namby pamby pink teddy for her. No, sirree. She has a bright red and orange snake that is actually longer than her. With her bonus features, her desire to live life by her own rules, her medical puzzles; my kid rocks! God bless her.

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Shooting Star and what it means to us

Shooting Star CHASE is the local children’s hospice that literally saved my life. When Moo came home from the hospital for the first time at nine weeks old with a tracheostomy, just before Christmas, she also came with a chest infection and no care package. Here I was with a 9 week old baby that I had tried to have for 5 years and she required 24 hour care. Her airway was utterly blocked and she was fed by naso-gastric (NG) tube. She had had a 6 minute cardiac the day she was born as they tried to intubate her for surgery. Her life depended on my being on the ball. If her trache fell out or got blocked, she would die, quickly. She required feeding every 4 hours, day and night, and would pull out her NG tube. The nurses wouldn’t train me to put one in while I was learning about the trache so we would have to go to hospital and wait around for someone to be free to do it, often in the middle of the night.

My family live abroad so couldn’t help, even though they desperately wanted to. My in laws, some of whom live close by, were too scared of the whole thing. I tried to do it all by myself, as Mr G returned to work after Christmas, because I didn’t have a choice. Every where I asked for help, I got turned away, except for by Shooting Star. I started to have anxiety attacks, became very depressed and went to the darkest places in my mind. Finally, while a couple of the nurses were at my home during a Hospice at Home visit, I was woken with a shock and had one of the worst anxiety attacks of my life and nearly fainted. They took one look at me, called the hospice and had Moo admitted for a two night emergency stay. We ended up living there for three months while they campaigned on our behalf to get us the care package we so desperately needed. They wouldn’t let us go home until we had it in place. I received psychotherapy and was diagnosed as severely traumatised. With medication, time to recover and the support of Mr G and Shooting Star, I returned to my normal self. Without them, I wouldn’t be here now. To this day, they are still the only practical and respite support that we have. No one else is trained to look after Moo, it’s just Mr G and me.

Every year, they hold a Christmas Carol service for the families that they support. Last year, I offered to do a reading. This is what I read:

Hi. My daughter, Moo, has been supported by Shooting Star since she was 9 weeks old and released from hospital. She’s just turned 6. When I volunteered to do a reading, I was very confused about what to choose. Christmas, as well as being a time for thanksgiving, is also a time of reflection for me. So I thought I would share some of our story with you and how life has not turned out quite how I planned. God had other plans for us and He really does know best.

I’ve wanted to be a mother since I was an egg. I have had a blessed life, wonderful friends and family, challenging and fulfilling jobs, foreign adventures but all I’ve ever really wanted was to be a Mummy. I was going to have four children. My husband wanted two. We still needed to discuss that. However, like a lot of people, our path to parenthood was long and traumatic. It took fertility treatment and two years and 11 months to get pregnant the first time. Our son, Ziggy, was stillborn at 5 months. Two years later, after failed fertility treatment, we got pregnant naturally. After yet another traumatic pregnancy, 9 weeks of labour (yes, I am that hard core) and a c-section, our amazing, beautiful daughter, Moo, was born. We were thrown into the world of life threatening conditions, hospitals, hospices and special needs from the moment she arrived. Life was so hard. This was not the parenthood we had envisioned. It took me 18 months to apply for a blue badge because I could not see that Moo was disabled despite having a tracheostomy and pronounced motor delay. She was just my Moo, my beautiful girl. Then I read something that brought me comfort and, bizarrely, peace, which I would like to share with you in a moment.

As for us, we are a very happy family of three with three cats. Life is different for us than most of our friends. Moo continues to face challenges but handles them with such grace and always has that beautiful, joyous smile on her face. She is so strong in spirit and mind, very funny and full of life. She is our inspiration and our joy. Our version of parenthood may be very different and can be very, very hard emotionally but we wouldn’t change a thing. We have gained far more than we have lost. I, personally, have learnt so much. I am far stronger, wiser and more compassionate than before this journey. I have met some truly phenomenal people who I admire so much who dedicate their time to families like ours but, most of all, I am so grateful for the children I have met. The angels on earth, like my Moo, and those who have gone to Heaven. I think of them all the time. All have touched my heart and proven over and over again, that just because you are different, it does not mean that you are less.

Now that reading:

WELCOME TO HOLLAND

By 
Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this . . .

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around . . . and you begin to notice that Holland has windmills . . . and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy . . . and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away . . . because the loss of that dream is a very, very significant loss.

But . . . if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things . . . about Holland.

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Some life lessons learnt the hard way

2011 was a really tough year. It was the year that I lost someone I loved deeply to cancer, my mother in law. As with the loss of a loved one, all manners of emotional chaos preceded and ensued after her passing. I wrote these life lessons four months after she passed away and I may sound a little bitter at times but it is all good. I needed to learn these and they have been the greatest gift.

1) Deep gratitude for a life lived really can assuage the grief of its loss.

2) No matter what my intentions or how well someone knows me, people can completely misinterpret what I say and do and judge me to be a bitch.

3) Sometimes I perceive a friendship that does not really exist. Some relationships in my life are very much on other people’s terms, they’re happy to take but don’t want to give because I’m not that important to them.

4) Just because I love someone and feel utterly loyal to them doesn’t mean they appreciate it or deserve it. Sometimes, you’ve got to accept that things will never be how you want them to be, no matter how hard you try to make it so.

5) I can’t blame or resent someone for their hurtful behaviour, if I haven’t told them it hurts me. How they respond is completely up to them and not my responsibility.

6) If I rock the boat, I should be prepared to be pushed out of it. Some people care about my feelings, some care more about their own and don’t want to know. It’s all part of life’s rich tapestry. Beautiful on the surface, with painful knots underneath. Just have to come to terms with it.

7) Some people really don’t understand that a relationship is only between the two people involved and shouldn’t be judged unless you’re one of them. A person’s perception of a relationship between two other people is never the reality. I was very disappointed and deeply hurt by the accusations leveled as a result of this one, but I learnt from it.

8) Even if you don’t agree with someone’s point of view, you can support them just by listening and being there.

9) Sometimes the anticipation of a painful conversation is often far worse than the conversation itself.

10) My perspective is my perspective. If I’m hurt and raise the issue, it’s because I want to resolve it which can only be done by discussion, mutual respect and open hearted listening. It’s not up to me whether you want to participate.

11) If I love you and something is important to you, that makes it important to me and I want to know, but I can’t be held responsible if you have decided not to tell me.

12) I really can not bear lying, false promises and deception. Tell me the truth. I can handle it.

13) My husband and my daughter really are the most important people in my life. I will hurt myself, if I feel I have to, to protect them.

14) I really have some truly lovely friends, my urban family.

15) If I make it a priority to spend time with you and you do not do the same, eventually I will change my priorities. I want to be a part of your life but only if you want to be a part of mine.

16) If someone sincerely apologises to you, it’s up to you to decide to believe them and let go of the associated pain. If you do, it really can heal years of anguish and improve your relationship dramatically. I wish I’d asked for the apology years ago.

And finally . . .

17) If you put too much on Facebook, no one needs to call you to find out what you’re up to. Have to stop using it like a diary and start being more private. This will make my husband really happy. At last, he’ll be able to have conversations with friends where they don’t already know what he’s going to say!

Since I wrote these, Mr G has actually joined Facebook so he is as much in the know but now I’ve started a blog instead! People will have to consciously choose to read my witterings, rather than being blasted by the newsfeed.

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I miss working!

Just had so much fun redesigning a friend’s CV. He wants to move after 16 years in his current job and, while his experience is amazing, his ability to design an easy to read CV is shocking. Poor bloke. We went to his house for lunch and he asked for our input. Mr G was very gentle. I took a pen and ripped it to shreds. He wanted constructive criticism so I gave it. He seemed appreciative. The problem that I have is that I love proof reading, grammar is an obsession although I know that I am not perfect at it, and designing documents so they are easy to read is something that I find so much fun. It’s one of the reasons I loved the PR element of my degree so much. I love to write, to sell and to edit. When I worked in the City, I helped to produce Equity Research reports. I loved it. I loved the proof reading, the editing, the layouts, even the graphs and presentations. Some of the people were are a bit odd, though. Swings and roundabouts. Then when I ran my business, I drove my business partner crazy with how much I would get into the detail of things. Quite handy when it’s someone’s ‘once in a lifetime’. Unfortunately, it extended to the office. I wouldn’t let her put labels on our files because they all had to match, at the same level, equal on all sides and absolutely spirit level straight. It drove her nuts. She wasn’t that surprised when I was diagnosed with OCD after Moo was born. It turns out that I am an obsessive thinker and you don’t need to be compulsive to have OCD. It was somewhat ironic, though. She’s compulsive and I teased her mercilessly about it. Karma, people. It exists and it will bite you. Be nice. It sort of makes sense of why we were such a great team and enjoyed working together so much. Although, it really is annoying when you are walking down the street with someone having a full blown conversation, only to turn to look at her and realise that she isn’t there. She’s halfway down the street behind you, checking her handbag. I had to build in faffing time for when we left the office. She got help and is a lot better. I should have learnt from her and done the same thing before I had Moo. I’m a lot more compassionate about the whole thing now, of course. Nothing like a bit of a breakdown and depression medication to make you realise that we are all not perfect, that each person deals with their stuff in different ways and we should not judge. Her way is a lot healthier than mine, let’s put it that way. At least she can sleep like the dead at night.

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Hello and welcome

I’ll keep this brief. It will probably be the first and last time I ever post a short post. Basically, please read the About Me section to learn more. I will update this blog when time and my Moo allow me but I am very excited about my new venture and thank you for taking the time to start it with me. It will take some time to get up and running and probably anywhere near interesting but, as they say, how can you expect your boat to sail in, if you haven’t built a port? Just turns out that a blog port takes quite a while to set up. Now the husband is calling and I have to depart. Adieu!