Wanna be in My Band?

A & E is So Much Fun

Ah yes, he is keeping us on our toes, this little one. It all started last night, while Cathal was asleep. We noticed that he was short of breath and a little wheezy. So this morning, when he was still no better and he had an annoying cough that sounded more like a bark, we decided to visit our local A & E in Crumlin. And a good thing too. Turns out when we got there that his oxygen saturation levels were low, even for him.....between 58 and 60 (normally he is between 75 & 80). His chest was listened to in great detail, the doctor looked down his throat and discovered that his throat and airways are a bit inflamed. So yet another virus strikes again. When will they end?

A few doses of inhalers were administered, a steroid and after a few hours, he was jumping around the place. Ahhh......it's good to be able to breath again. His sats jumped up to 79/80 so we were let go....wohoo!!!

We've been given an inhaler to give to him as he needs, but he hates it. It's a two person job. How I'm going to give it while The Dad is at work, I don't know. Any takers??

They All Said It was Just Man Flu

I was sick!

You may have heard, I was sick over Christmas. I had a rotten time, big swollen runny eyes, nose that was so stuffed up and runny I couldn't even breath, a horrible cough and a sore throat. To top it all off, those parents of mine opened most of MY presents while I tried to get a bit of kip on the big day itself. Bahumbug to them anyway. But don't worry, I got my own back, I managed to rub my nose in my mammy's face lots of times while pretending to give her those cute sloppy kisses. Ha, she fell for it, the fool, and I managed to spread....I mean share my germs. Sharing is Caring!!! She's still a bit sick, but well enough to look after me.
And I was teething and have nothing to show for it. Poo to Christmas. It's a bloody pain.

But I have managed to eat my way through most of my presents now. They all taste delicious by the way, hmmmm.....wooden toy trains are tasty. Those pesky parents keep trying to give me bits of orange and "healthy" biscuits to chew on, but toys are so much nicer.

Don't forget, my Nanny has organized a grand-parents day on the 14th....check on the left for more details and such. I'm off to have a bath now, I love my bath!

Heart Update

I know, I've been incredible lazy the last few weeks. What can I say, lots to do at the moment it being the festive season and all that.

Anyway, Cathal went for his regular 2 monthly(ish) check up to have his heart looked at, and I am pleased to announce that he is doing great!!! We had a target weight to reach (8kg) and he weighed in at 8.27kg. And that's all down to me I might add, he's not a great eater, not a big fan of solids, so yes, I'm proud (see that light? It's me beaming with pride). We were also told that his pulmonary artery has grown a little. BIG JUMP FOR JOY! If it keeps growing little by little, it should make the operation a little less tricky. Surgery should be around spring/ summer. So now we keep waiting.

But poor Cathal, he did not like having the echo done. All it is is a scan, but as soon as Dr.McM put the gel on his chest, he screamed blue murder, and kept screaming. Even when he was dressed and we were sitting at the desk, every time he looked round to Dr.McM, he would start off again. My son knows how to hold a grudge, that's for sure.

This book is good mammy, can't wait to find out what happens

And Cathal met Santa, although he was more interested in pulling the little girls hair. At least he didn't try to pull Santa's beard, he would be on the naughty list for life otherwise!

Great Hair Day

Part 2 of Health Health Health

Ok, here goes again. Health continued.....

There is a very small risk of Cervical Spine Instability in children with down syndrome. This occurs at the top of the neck and affects the two small bones in the spine that allow nodding (like yes/ no). It is very important not to ignore the signs and to seek specialist attention. Apparently it is very curable with a very small operation. Look out for:

• pain at a spot near the hard bump behind the ear
• A stiff neck which doesn't get better quickly
• Alteration in the way a child walks or he/ she looks less good on their feet
• Deterioration in a child's ability to manipulate things with their hands
• Incontinence developing in a child who has previously had no problem

Coeliac Disease is an intolerance to gluten. The lining of the small intestine becomes damaged reducing the person's ability to absorb certain foods. The symptoms are diarrhoea/ constipation/ chronic tiredness/ anaemia. The risk in children with down syndrome is just under 18%. Joan stressed that it is very easy to test for. When you are getting bloods done to check your child's thyroid, request a test for coeliac disease too. Sure, while the needle is in there, you might as well take a little extra blood to test for this, and what's the harm in getting it done once a year along with the thyriod. This condition is life long and requires a gluten free diet (no cereals). Check out the Coeliac Society of Ireland and the Coeliac Society UK for more information. The Down's Syndrome Medical Interest Group recomend screening.

As we all know, there can be (well lets face it, it's very likely) Speech and Language Problems in children with down's syndrome. Receptive language skills are increased, expressive language skills are decreassed and grammer can be more difficult. No speech and language problem is unique to children with down's syndrome and it can be linked to hearing impairment like otitis media with effusion (???) and fliud in the middle ear without signs/ symptoms of ear infections. The trick here is to start therapy the moment your child is born (which all parents do anyway). Feeding, family talk, touching, looking, listening, encouragement are all important speech therapy you can do at home, and formal S&L is also important.

CONSTIPATION!!!! I have some lovely pictures and diagrams in my notes, but you will all be sad to know, that they are a bit too small to scan in and post here (and I am far too lazy to dig the scanner out and plug it into the computer), so I'll save you the details. Lets just say that normal poo for a child should be smooth, soft and snake/ sausage shaped. If it's hard and lumpy (or worse)......CONSTIPATION. If it's little soft blobs (or worse again) with clear liquid ....DIARRHEA. If it's a baby (Cathal), in my experiance, anything goes. Anyway, for constipation, introduce more fibre (fruits, prunes, cereals), increase water or juice, take more exercise, cut down on high-fat and high sugar foods, encourage regular bowel movements and go to the GP if the poo is softer (could be hypothyroidism). Also, another tip that Joan had was if your child seems to be straining, hold your child against you, their back to your tummy, bring their knees up to their chest and give a big hug! Aparently this gets things moving.

Sleep, the holy grail. Sleep all depends on age, if the child is well/ unwell, hot/ cold, hungry/ thirsty, teething, learnt behaviour. If sleep problems continue, write a record (when did it start/ happen, time it takes to go to sleep, time the child actually sleeps and what position the child sleeps in the bed/ cot) Chat to your GP, or Joan.....she seems to have all the answers and asks all the right questions.

Understanding Behaviour, it all has a purpose. Either to get atention, start social contact, escape/avoid, obtain objects/ events, express emotion or reduce stress, sensory stimulation. Again, it's the same advise as sleep, take a note of the behaoviour, when, where, why and listen to your gut instinct.

Dental Health, but sure that's all the usual stuff!! No need to explain.

Independance can start from 1 year old. For example, when out and about, sit the child in the trolley and have them get the cornflakes. Have a list of shopping with pictures to illustrate what is needed. This can give children pride in the ability to put items into the trolley. So while doing the shopping, you are practicing and teaching coordination, S&L, physio and OT. Be inclusive from an early age, get involved in the community, local events, drama, football, swimming.

And finally, you, the parent. It's important to take care of yourself, take time for you. We are all running around from one appointment to another, and just sitting down to relax and to be relaxed around your child is the best thing. The hoovering can get done tomorrow, the washing can wait another few hours. When playing with your child, just play with them, drop the down's syndrome for one day each week and do what you want.

"It's in the the atmosphere of love and acceptance that the best growth occurs"




Joan Murphy
Clinical/ Research Nurse Specialist
Department of Paediatrics/ TCD
Phone: 01 8963785/ 4142000/ bleep 7193