Cystic Fibrosis week - getting nosey

 More on CF. Because it's CF week, and I have a son with CF. An excellent cartoon video about a child with Cystic Fibrosis

Living with Cystic Fibrosis 

A CF Trust video

Did I say my son has CF?

(And I was one of the CF mums consulted on the making of this video.)

Cystic Fibrosis Week

   It's CF week, so I thought I'd post some information about CF, copied from the CF Trust site. Reading this brings me back to the reality of what my son may have to face. On the positive side several drugs are being trialled that may transform the lives of people with CF. There is even a gene therapy trial on here in the UK.

   None of these drugs will cure CF. But maybe one of them may help my Pup lead a more normal life. I hope so.

What is Cystic Fibrosis?

• Cystic Fibrosis (CF) is one of the UK's most common life-threatening inherited diseases.

• It is caused by a faulty gene that controls the movement of salt and water in and out of the cells within the body.

• Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.

• Over 9,000 people in the UK have Cystic Fibrosis.

• If two carriers have a child, the baby has a 1 in 4 chance of having Cystic Fibrosis.

• Over two million people in the UK carry the faulty gene that causes Cystic Fibrosis - around 1 in 25 of the population.

• Over 95% of the UK CF population is Caucasian, but CF affects many ethnic groups.

• Each week, five babies are born with Cystic Fibrosis.

• Each week, two young lives are lost to Cystic Fibrosis.

• Currently half of the CF population will live past 41 years of age, and improvements in treatments mean a baby born today is expected to live even longer.
  
  From Cystic Fibrosis Trust
  
  
    This does not indicate what daily life is like with CF. Pup has it pretty easy at the moment, he is fit and healthy, as long as he does his twice daily physio, keeps active, takes his medication,  eats well and avoids infection. But many people with CF will be seriously disabled by the condition, need oxygen therapy, feeding tubes and have very restricted lives. Many have to spend long periods of time in hospital. Lung transplants may transform the life of a CF'er with severe lung damage.
  
  
  
  

To Grandmas and back

No we haven't been to Grandmas.

Bedtime is a difficult time of day at our house, but I always try and say "I love you" to the boys when I've said goodnight (sometimes through gritted teeth) The response is usually a snort or grunt or question about something desperately important in small boy world. Tigs in particular is not verbally expressive of affection. He shows his love in short sweet cuddles.

Last night went a bit differently:

"Goodnight Tigs, love you!"

"Love you mummy. Love you lots and lots"

"Love you lots and lots too!"

"Love you lots more than you love me mummy!"

"Oh? I love you to the moon and back Tigs" He is obviously not very impressed by this.

"I love you..... to GRANDMA'S  and back, mummy!"

Top that, mummy.

 (Grandma lives 60 miles away, and he finds the journey looong and tedious)

Speaking of the moon. 

For my birthday Himself gave me a gift (that he insists hotly was NOT intended for him.) It's an attatchment so I can take pictures with his telescope using my camera. 

It was a little cloudy last night so we didn't get long, but this was my second attempt.   Tried a few of Venus as well, and hoping to catch Saturn tonight!         

2 boys for sale

Yes it  was one of those 'I've had enough of this, they're going back' weekends.

No this blog is not going to be a list of the boys crimes. Or mine - I mean the times when I lost my cool. I mean really lost it. No I wasn't the one in a tantrum on the floor, or kicking screaming and thumping. But it was close. No-one got seriously injured; even by Tigs when he went OTT with Pup's light sabre. The cats got a little nervous as noise levels were higher even than usual. Homework did NOT get done. We did no gardening, and minimal housework.

So take deep breath. Take cup of tea. Start again. 

Time for a quick sentence on how I am an imperfect sinner but God has forgiven me? I don't think so. No I'm not taking that for granted but that's between him and me. Maybe more crucial, have the kids forgiven me? And have I forgiven them?  

Hmm hmmm.

My too high expectations of how the weekend would go probably did not help. It was my birthday weekend and I wanted it to be good. It was indeed excellent in parts. 

SO, some of the good bits:

Pup did really well in his riding lesson and he got to try trotting. The helpers seem genuinely impressed with his progress. It is the perfect therapy for him on so many levels - excellent for his  muscle strengthening, balance, co-ordination, concentration, attention span; and for motivating him to keep calm and learn to control his over excitement. I still do not really 'get' the whole horsey thing, or why I must not call a pony white if it actually IS that colour, but I am trying to learn.

Tigs embarrassed me totally in church on Sunday morning. Yes this actually was a good bit. In our church any child who has a birthday the following week is given a card and his the birthday song sung to them.So the leader announced in his introduction that he didn't know of any birthdays this week. Like lightning Tigs shouts at the top of his VERY loud voice. "It's my Mummy's birthday today!" Cue for church to collapse in laughter. Yes the boys are a little infamous at church.

I had breakfast in bed on my birthday provided by all my boys. Pup's cup of tea was not up to its usual standard, it was cold and he'd forgotten to take the teabag out. No I didn't tell him this. Yes I drank it with appreciative noises.

Some bad bits?

It is always sunny on my birthday and it wasn't. It was wet and windy. So windy the night before that a lot of the young leaves have been stripped off our local trees, and many small branches have fallen. I was disproportionately disappointed. We have had a lot of wet recently (much needed), and had very little sun for weeks. Usually I love this time of year.

The car leaked somewhere, we can't find out where, and the carpets are soaked.

My mum was upset because the birthday card she sent me has gone astray. This is a bigger deal than you might think, because I usually help organise all the letters / cards etc that she sends, and she did this independently, and it got lost.

I think the moral of this post is that I must lower my expectations sometimes. Not hope for too much, then I won't get disappointed. Will try!

From the Scrap Bag.

This post isn't about anything particular, it's just about catching up, about bits and pieces that have happened to us recently.

   Tigs announced this morning that he was going to cycle to the Tower of London. He was leaving immediately, and would be wearing his Union Jack socks. I am not asking him what else he planned to wear - if anything?? Fortunately I was successful in persuading him to wait until after school. On the way to school he decided that he would  climb Everest after his London trip.  He is obsessed with visiting the Tower, and also with all things Star Wars at the moment. He has also taught himself to play the first few lines of the carol 'Once In Royal David's City' on the keyboard. He cannot read music so we know he wasn't cheating. That was one proud mummy moment! Himself persuaded him to do it again and caught it on video, so we can embarrass him with it when he's a famous musician.

  Pup saw the physiotherapist last week, and she is really pleased with him. He is getting a lot stronger. In particular she noticed that his hands are much less flexible; until recently you could bend his fingers backwards about 60 degrees (without hurting him I hasten to add!) Now they are a lot better. I really hope his fine manipulation skills will improve accordingly. I am not sure what Pup is 'into' at the moment, he usually just plays with whatever is available. He is getting a bit keener on reading, to my great relief - he confessed to me this morning that he forgot to put his bedroom light out until 9 o'clock because he was reading. I did not have the heart to tell him off, especially as I was a veteran 'under the blankets' reader as a kid.

  Tigs told us at teatime the other day "Pup needs more ketchup because he has cystic fibrosis." He said it without any apparent resentment. I am so glad he is learning this now, and does not seem to mind - at the moment, anyway. He told his teacher last term about how Pup needed more food than everyone else. We have tried to avoid making a big issue of this with Tigs, and I am surprised that he has noticed. Maybe I shouldn't be surprised; he can be a very observant boy. He did comment amazedly  at Grandma house the other day "I didn't know grown ups needed to take meds, I thought it was only children!" (After seeing grandads stockpile of pills.) That is what living with a CF brother does to you. :-(

   It is wet wet wet here. Water butts are all filled up andthe garden looking very damp. Our tadpolarium is overflowing. Ironically we are in the middle of a drought; there is a local hosepipe ban. The soil has been so dry and our local stream has only run intermittently for months - until 2 days ago.

    I met with Pup's teacher on Monday. He kept reassuring me that Pup is very intelligent. He just needs to get down to doing some actual work in class. And to learn to write. And to improve his maths a bit, and to learn to shut up and sit down and NOT to take over the class. (He just has to be in control in all situations and cannot remember that he is not the teacher.)  However his verbal skill are well above average, he is excellent at expressing himself and putting 'spin' on things. And he always uses ten words when one would do.  I just wish he could get on better with his classmates.

  Himself has had a bug, but is thoroughly 'aunty-botted' and now on the mend. The four-footed members of the household have been so frustrated by the rain and not being able to go out that we've had more than the usual number of scraps and some very bad language between them. And I just seem to run at a low level of tiredness all the time at the moment. And I've only got 2 kids.

Hols

It's the holidays. We've been bowling, we've tried kite flying, but it started to sleet, and Tigs and I were getting very c-c-cold, so we came home. We've festered at home, played on the Wii, watched TV, done some gardening, played with the neighbours grandsons, done some homework - oh sorry, not got round to that one yet. We are visiting Grandma and Grandad soon.
But today was nearly a disaster. The boys and I had a big plan to visit the leisure pool ten miles away. Much more fun than our local pool, it's got a wave machine and a slide. I hadn't driven there before and got slightly Ok totally lost. Then when we finally found the place and got to the pay desk I suddenly realised I hadn't brought my wallet.  I had NO money on me at all, but I did have two totally overexcited small boys. What could I do? We took the 20 mile round trip home to pick up the wallet  (fortunately it was at home not dropped somewhere en route). The boys did get their swim in the end, and had a wild time in the water. Both can just about swim - underwater; but are not reliable if they get out of their depth. I had a stressful time trying to watch both of them. Being short sighted does not help, as I can't see a thing without my specs, and when they are off playing all over the pool I keep losing sight of them. Next time we go I am going to insist they wear red vests or something.

Sleeping partner

She doesn't get many mentions on this blog. She is ten years old, a bit of a matron; and her favourite hobby is sleeping. Her second favourite is keeping all other cats in their place. including The Ginge.

She has her wild moments of frantic rushing around the garden, but not if The Ginge is in sight - mustn't compromise her dignity! He is already longer than her and taller, but she is still heavier, and she can still cow him with a look.

Megan. Monocat, 'Her Majesty' (Her Maj for short) thinks she rules the house. She does have a point. Right now I am perching on the very edge of the computer chair so as not to disturb the royal presence, she has chosen it as her throne for the evening. Her other favourite places to sleep are laps, Himselfs pillow at night, the sofa, under the table on a dining room chair. She is a bit of a Daddy's girl and will usually choose Himself to sit on if she has a choice. She also loves to sit on his shoulders; he usually has breakfast with a fur collar around his neck. Can get painful if he makes any sudden moves.

She will NOT tolerate any other cats on her territory, except The Ginge and he is barely tolerated. Until 18 months ago she lived with her brother. 

http://bearsbabiesandbananas.blogspot.co.uk/2010/11/for-mungo.html

with Mungo at 10 weeks

  After we lost Mungo we thought she was grieving, and partly for her sake we got The Ginge to replace him about 6 months later. We thought it would take her mind off Mungo. Er ... you could say that. She devoted all her energies to hating our new addition and she was wildly jealous.Things have improved slightly; these days she seems to accept The Ginge, but barely. But this morning Tigs shut them into our bedroom together. I didnt notice until lunchtime that they hadn't been in evidence all morning, when I got suspicious I went upstairs and found the bedroom door shut. On opening the door two furiously indignant cats emerged, Mono was swearing and hissing at The Ginge as if it was his fault.

  She is a gorgeous girl, not a hunter, although she went through a phase of catching frogs last year. She had a really hard patch after Mungo dies, when she lost a lot of weight and got very hyper and anxious. We took her to the vet as she was starting to look like a skeleton covered with fur.  They diagnosed an overactive thyroid; which was treated with tablets at first, but forcing her to take those twice a day became too stressful for her and us. Catching her and getting them down het throat was a nightmare. We would often find discarded tablets on the floor. She was starting to distrust us, and run away whenever we entered a room, thinking we were going to 'pill' her. So we agreed to let her have a thyroidectomy. She looked tragic afterwards with a great scar in her shaven throat - but it has done her so much good! She is such an affectionate cat these days, and a real ' stay at home' girl. We'd be lost without her.