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

Health Health Health Part 1

Last week, DS Dublin held a talk about the typical and common health issues in children and adults with down syndrome. It was such an informative and interesting talk, I've decided to transcribe the notes we were given, and try to add in what I remember. So I'm afraid this might not be too interesting to some, but to others, I hope it helps.

The talk was given by Joan Murphy who is a clinical nurse specialist in Tallaght Hospital. She works closely with Down Syndrome Ireland and she is available to all parents who have children with down syndrome, by email, phone and through the hospital. You don't need to be her patient, just give her a call and she'll answer any question. And if she dosen't pick up, then try again or leave a message. I'll include her contact details at the end.

The major treatable health problems are heart, growth, thyroid, hearing, vision and development & learning abilities/ gaps. Early identification and intervention are essential.

Family centred care is very important. The well being and rights of the child are priority. Parents are the key to the child's health and well being. Parents are the experts for their child. In other words, if you have a gut feeling that something is just not right, get it checked out. If you are not happy with your doctors explainations, give Joan a call!

A key resource in health matters is a book called "Medical Management of Children & Adolescents with Down Syndrome in Ireland". It is a medical guideline for the profesionals, but it's no harm to know where to get it and the checkup table on page 19 is in my opinion essential to have.

Growth should be charted on a down syndrome growth chart. As long as your child is following their curve, then all is fine. If they start to drop significantly or jump, then contact Joan or your consultant. Another great book for feeding in young children is "Supporting Feeding and Oral Development in Young Children". I have found this to be a great resource, and I dip in to it from time to time. Joan also recomended "The Down Syndrome Nutrition Handbook".

45.7% of babies born with down syndrome have Heart Problems.
20% of those are innocent murmurs
25% have an Atrioventricular Septal Defect
17% have an Atrial Septal Defect
15% have a Ventricular Septal Defect
11% have a Patent Ductus Areriosis
7% have an ASD VSD
2% have a PDA VSD
3% have a Pulmonary Hypertension
Check out Heart Children Ireland for explainations on these and support.

Thyroid screening is very important and should be carried out on an on going basis (at least once a year). A blood smple can be taken from just a finger prick. Underactive thyroid is the most common problem and it's side affects are tirdness, lethargy, over weight. About 4% of thyoid problems are caused by an over active thyroid and side affects are sweating and other things I can't remember......(sorry!). The improtant thing is too look out for changes in your childs energy levels, seemingly going backwards in terms of speech for example, check their growth chart, and then get it checked out.

Hearing screening is also very improtant. It can be done in three stages. The first is an otoscopy to test the external ear and the tympanic membrane. The second is a tympanometry to test the middle ear (eardrum and ossicle mobility). And the third is a DPOAE and measures cochlear function. Now, all this is absolute gobbledy goup to me, but basicly, there is a fourth test, the big brain wave one that does the job of the other three, which for the life of me I can't remember the name of. I would suggest you get that one for a little baby, but it's good to know that each section can be test seperatly. For more information on hearing loss and problems, check out the NDCS and "Down's Syndrome and Childhood Deafness".

50% of children will require glasses for their vision. Now hang on....I'd say 50% of the general popuation need glasses, and Cathal is going to get his shockingly bad eyesight from me anyway! Back to the point. Early detection in short & long sightedness, strabismus, cataract and glaucoma will prevent an unnecessary secondary handicap. So it's important to be on the look out for lazy eyes, squiting and anything that just dosen't look right.


I am going to take a break here, and continue this in a few days time! Stay tuned for more...


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

Is He Suffering??

According to TV3, he is. There I was, watching the news this evening, the headline report "The government does another u-turn on the budget"....horah! However, my joy was dampened slightly. During the course of the report, they showed a woman and photos of her daughter, and the report spoke over these images, " ....., who's daughter suffers from down syndrome...."

YES, that's right, every person who has down syndrome is suffering from some kind of dibilitating disease. I imediatly checked Cathal over, he has a cough and a sore throat. I've taken this to be a sign of his suffering, and I've quarintined him so that he can't infect anyone else with extra random chromosomes. I URGE YOU TO DO THE SAME!!!

Honestly, who let that one slip by? Surely someone who works in TV3 has a relative, friend or knows a friend of a friend who has a disability. Surley someone could have spotted this gross misuse of language. I don't know. It just throws the "ahh, god bless him" back in your face. So I've written to them, expressing my concerns....we'll see what comes of it.

On a lighter note, we had the DCA assesment yesterday. After waiting 6 months, we had a 10 minute appointment. We all met a lovely doctor for about 10 minutes, who then told us we that the DCA is automatic. Well, why on earth did we need to wait 6 months for a 10 minute appointment. There you go, another example of a waste of time and money by the HSE. Oh dear, well at least it will all be backdated, so I'm thinking of it like a savings account.



I have to ask, what next? Answers on the back of a postcard addressed to "the boy suffering from down syndrome" if you please.

Happy Halloween

Roarrrrrrrrrrr!

Thank you so so so much to South Dublin Dad, South Dublin Mam and Ava for finding the costume. He was a big hit at school yesterday

Know Your Child's Rights

Last Friday, the Ombudsman for Children, Emily Logan, came to John of Gods in Islandbridge for a bit of a chat. Well, my eyes were opened. Not only do we have an Ombudsman for Children in this country, we have some one who is prepared to fight for the rights of our children, especially our special children (and yes, I know, all children are special). It was a wonderfull talk, and unfortunatly I can't recall it word for word, or even attempt to transcibe most of the content here, there is one underlying feeling I'd like to share with you all.

If you have hit a brick wall. If you feel that your childs right to education, medical treatment, housing, and anything else listed on the UN Convention on the Rights of the Child, has been comprimised in any way, go to Emily. If you have exausted all local options, the principal of the school, the GP, the consultant, the HSE, the councillor, the TD (and any one else who will listen).....go to Emily. That's what she is there for, to help you fight for that Special Needs Assistant, that vital operation and ICU bed, that home especaily adapted to your childs needs.

So check out their website, bookmark it, know that there is hope, there is some one out there who can compel others to do what is best for your child.

Know Your Child's Rights

Feelin' the love

Now, I'm not into chain mails, or any of these if you don't send this on to 57 people your tomato plants will die and your apple tree shall be fruitless. When ever I get them, I tend to ignore them....delete......DELETE

But how can I resist.....Hammie, Maman (Nan P) you shouldn't have....

x 2

So here goes, I'm to nominate 7 others. I'm not going to dish out the rules (I'm such a rebel), but I am going to let those who I nominate to do what they will, and if they want to keep spreading the love, then go ahead. And these blogs are all ones that I check on a daily basis, ones that I really do love, and you can find them all on the left hand side.

Numbero Uno: Hammie, Hammie, Hammie. The first blog I read, and one of the two that inspired me to get all creative and start my own. Your honesty is refreshing, you tell it as it is. Your such an insperational person, and I only hope that I can be half the woman you are.

Second: Nick, you have a great way with words, and your blog also got me going to write. Most of all, you get this award for all the support in the early days, for all the advice and information, but especially for sharing Jacobs early days with me through your blog, and assuring both of us (the Dad and I) that we were not alone.

Three: Sesame, internet addicted, vomiting bug fighting super mammy of four, living in her house on the hill (sounds like a nursery rhyme). I love reading about your life and your kids adventures (do I sound like a stalker now?) All us special mammies need to sick together, support one another, make each other laugh from time to time, and that's what you do.

Quatrième: And now for a bit of nepetism, Nan P. Ahh, you know, sure I had to nominate you (I'll never here the end of it if I don't :-) ). No, honestly, your support in Cathal's life has been fantastic, as has all the famillies, both sides. And once he is old enough, you can babysit him for whole weekends if you like....in your place.....(see, booking her already)

5th & 6th: Noah and Ava Cathal's Thursday buddies, both have wonderful parents who have decided to blog about their babies to share the ups and downs of having children with downs. Noah's dad's musings pre baby I think are so ensightfull and touching, they made me shed a little tear, and before Noah was born and we had even met him, I was constantly checking back for news. Ava's parents have such a great sence of humour (check out the passport photo) her blog just gives you a lift when you need it. Loving the holiday picks.

Seacht: And last but not least, Eadaoin. I went to college with Eadaoin (my second stint), and she actually worked where I work for a while too, before embarking on her travels. I love reading about what she is up to, the work she is doing, the amazing places she is visiting. She is doing such wonderfull work, looking after and helping lots of children with special needs who would otherwise be lost and forgotten. This is something I don't think I would have the courage to do (says the mammy of a baby with special needs!), to leave the comfort of home, and travel to a strange country, only to be attacked by giant flying coakroaches.

So these are my seven, do what you will with it my pretties!!!

Can He Hear?

Last Wednesday, we had a busy day, Cathal was pulled and proded and made to show off all his skills and fire eating skills. The day before, we got a call from our public health nurse (who we've met only once), to be told that Cathal was due his 7 month hearing test. So even though we were due the same day at the Coombe for the usual check ups, we walked down to the clinic, in the freezing wind. Cathal was all wrapped up in a hat, a blanket and his big cousins beautiful winter coat, you couldn't even see him in the buggy!!!!
Anyway, we got in to see a different public health nurse to the one who called the day before. She proceded to do the regular checks for a 7 month old:

• Asking if he reached for toys. Yes he does that, she then put a clear boring plastic rattle on the table in front of him to see if he would grab it. He just looked at it...."Well, what am I supposed to do with that?"
• She then sat him up, not very well, to see if he can sit up. Yes he can do that, if you position him well and let him find his centre. He of course started to tilt a bit...
• He was attentive to her, watched her. "Oh, you must play with him all the time, you can really see that in him". I do, I do!
• His weight, length and head circumference was checked, (7.59kg, 68cm, 44cm....hmmmmm, are you sure?)

Then she informed me she needed to get another nurse to help with the hearing test. After about 3-4 minutes, back she came with another nurse in tow. I'll pause here to tell you what I think happened outside the room. By the way, I hadn't mentioned any of Cathal's little extras.

Nurse A: "I've got a woman in there with a little baby, and I think he has down syndrome."
Nurse B: "Really?"
Nurse A: "Yes, and I don't think she knows, she didn't say anything about it."
Nurse B: "Oh my goodness, bless her!"
Nurse A: "What will we do?"
Nurse B: "I'll take a look when we go in, and I'll chat to her."
Nurse A: "Right so, god bless the little fella"

So in they both came, nurse B takes a good look at him, "Isn't he lovely, he's gorgeous". Glowing mammy holding him, beaming with pride.
Nurse B: "You know, there used to be an activity group up in such and such a place, run by such and such a person, and you know, it was for all babies, not just for...."
No. 1 Mammy with a slightly dropped jaw: "He already attends John of Gods, and he's in early intervention, there's a whole rake of people supporting him thanks."
Nurse B: "That's wonderful"
Nurse A, slight look of relief on her face: "Wonderful"
Nurse B: "He's great though, really great, you must play with him and talk to him all the time!!"

Well, what else would I do all day with him. They must see a lot of babies who are just left in a corner for the day with no stimulation.

Anyway, finally the test started. I was sitting in the middle of the room with Cathal in front of me on the edge of my lap. Nurse B stood in front of him while nurse A hid behind me. Nurse B made a funny noise and went:
"Cathal!!!!"
while making a funny face, then she stopped suddenly, crossed her arms and tilted her head to the side. He's looking at her going,
"What the hell just happened?"
Nurse A in the meantime leaned over my right shoulder and started to whisper at Cathal,
"Pshwshwsh...pshwshwsh...Cathal Cathal Cathal"
And he turned to face her,
"What?"
Nurse B, made her funny nosies again infront of him....
"Ohhh, she did it again"
Nurse A repeated the whispering on his left. By this stage though, he'd cop'd on and he knows that the woman infront of him is far more entertaining, so he didn't pay a blind notice to the other one.

So they swithed places and started again. This time he just ignored them completly.
"Bored now!"

Then there was the, "Well, I'm sure he is fine, he can hear on the right anyway". I went on to explain that I already know he can hear, due to the magical test they did in Crumlin. "Oh, that's wonderfull, we'll repeat this test anyway in a couple of months". "He's great". "Bless him".

To say I had to try and contain the laughter is an understatment. Can't wait for the next one!

Just a note on the weight, length and head measurments, in the Coombe that same afternoon, they were all taken, and there may be a few discrepancies. Lets study them shall we?

Public Health Nurse Coombe
Weight: 7.59kg
Height: 68cm
Head: 44cm

Coombe
Weight: 7.4kg
Height: 70cm
Head: 41.5cm

I am more inclind to believe the Coombe to be honest. So to all those breastfeeding mammies who are told that their baby is too light and needs to be topped up, or even put on formula, because just look at that weight, don't do it. All scales are different, different times of the day appear to produce different results, judge your baby, not the numbers.

Regarding the Coombe visit, he's doing very well, growing perfectly according to the down syndrome growth chart, but I knew that anyway.

Drum Roll Please....

It is with great pleasure that I am announcing the launch of a fantastic new Irish based website all about breastfeeding (my second favourite topic, the first being Cathal).

www.thebreastway.ie

A huge congratulations goes out to the creator of the site (well done boobies!!!), and to all the women and babies who turned out just over a week ago in Cabinteely to have pictures taken to help promote the site. A great day was had by all, even if we did look like a bit of a cult with Gingerpixel snapping our photos and Jo selling her nipple cupcakes.

Breastfeeding has become such an important issue to me, and the low precentage of women who do continue to breastfeed past 6 weeks is truely shocking. The majority of women feel let down by our health system in terms of support (no shock there, especially to us special parents too), many feel that they are doing something wrong when their 6 day old babies won't settle and everyone (including some health professionals) tell them that they should just pack it in, a bottle will sort them out. Only a few women seem to know that things get better, very quickly. Why is that?..... Lack of education, knowledge and support that should all be provided to any woman who decides to "give it a go".

But finally, there is a place where these women can go for honest, researched answers. So in the future, if you have a baby, and you think...hmmm....I would like to breastfeed, arm yourself with the knowledge and information, check out my breastfeeding links on the left hand side. And any questions that you might have, there is support out there.

Tick A Box

This may surprise you, I may have fooled you up till now, but it's time to tell the truth.
I am a complete introvert....shocking, I know.

On my second attempt at college (the successful one), as part of my course, I had to do a bit of psychology. Nothing too taxing, bit more of an Idiots Guide. I remember very little of it, but what I do remember is one particular lecture about Jung's introverts and extroverts. We each took a little test to find out which box we fit into, and low and behold, I fit snugly in the introvert one. I was one of two or three out of a class of almost 30 to be like that. I've never been terrible social. Not that I don't go out, I just don't get the staying out very late, getting tipsy, having to shout over loud music. Do I sound like an old bat yet? Hang on, I'll just whip out my knitting and wave a needle around critically. I like to socialise in small groups of good friends, nothing too strenuous, with my own comfy bed waiting for me at the end of a long (no later than 1.30am) night.

But now I think that Cathal is changing all that. Suddenly, I am not happy to stay home and mooch around the house. Now I need company. I have never been very good at meeting new people, making new friends, but all of a sudden, I am craving chats and tea. Does mammyness do this to you? You make that extra effort because of your new little bunddle? You need to seek out adult conversation before you go mad singing Twinkle Twinkle Little Star for the 47th time that day?

The Mammy Box: Very soon after Cathal came home for the second time, a little summer walking group was formed, through the magic of RollerCoaster. We only got to go walking a few times before the rain drove us indoors, and chatting and tea took over.

The Special Mammy Box: Recently, a few of us mammies of babies with DS have been getting together once a week, in each others houses to chat and yes.....drink tea. Cathal has made some friends at this little get together, Ava, Noah, Liam and more recently Mannix.

The Breast Feeding Mammy Box: Also, in the last few weeks, I've been meeting a few other breastfeeding mammies to chat about, yes, you guessed it, breastfeeding. Again we all met through the amazing RollerCoaster.

The Baby/ Toddler Group Mammy Box: Tomorrow I am going to go to my first real, properly organised, baby and toddler group, to meet more mammies and babies. I'll drink more tea (I do like tea) and catch up with my sister-in-law.

The School Mammy Box: Don't forget that mammy, the most important one. We go to school once a week to sing songs and look at twinkly lights on the ceiling. There is also some tea involved.

A different Mammy hat to put on every day


That's my life now, different boxes that I tick, a range of different mammy jigsaw puzzles that fit together to make up a picture of me. For a complete and total introvert, I think I'm making great progress at socialising, if not for my sake, but for Cathal's. It's good to stimulate both our brains.




P.S. Cathal got his medical card today, I didn't even have to put up a fight!!

Counting Down

Although I know what is to come (we have already had a taste), although I know my eyes will be red and swollen from crying, although I know I will not be able to sleep, I really cannot wait for Cathal to have his heart operation. I just want it behind us. The worry, the fear and the tears will all be worth it to get our lives back on track. It feels as though time has stood still, and all I am doing is waiting.
There is no date yet for the operation, all we know is that it should be around March, when Cathal is a year old. We will see his cardiologist (I really must learn how to spell that word) in about a weeks time, so maybe then we might be able to pry some information out of him. Until then, all we can do is wait and wait and wait....

I don't want to bring Cathal on holidays outside the country in case he doesn't have enough oxygen on the flight, or the cabin loses pressure. I don't want to bring him to a hot country, in case he gets too hot and too sweaty causing him to dehydrate, which could cause his shunt to clot. I don't want to be in a country where I don't speak the language and he might have to go to hospital. All these things play on my mind. It's much safer to stay at home, a 5 minute drive from Crumlin Hospital. What can I say, I'm a little paranoid about his heart. I think I have a right to be though, in all fairness!!!

So, what can I say, I'm looking forward to having my little boy, all patched up and ready to fight the world. The sooner the operation, the sooner that can happen.

For the moment though, Cathal is just happy to bake cakes and play computer games.

hmmm, orange and apple pie!!

staying up late to help out on a raid in WoW

A Bit of a Ramble....Forgive me

When our little bundles of joys are born, they don't come with instructions. There is no Beginners Guide to Babies

Cry A= Hungry
Cry B= Thirsty
Cry C= I am so bored I am just going to keep shouting at you until you do something to entertain me

You are given the minimum training in the manic days after the birth.

• Here is how to bath your baby without making him swallow half the contents of the bath.
• Here is how you change a nappy without getting pee'd on.
• Here is how to feed your baby (well in the case of breast feeding, the teaching is few and far between, but that's a whole different post).

So when you are handed your baby, and suddenly you are told that something is not quiet right, no one seems to want to explain to you the true meaning of your child's specialness. Fair enough, Cathal was sent up to Crumlin fairly soon after he was born, and we were not going to hang around for informtion. In Crumlin they were concerned about his heart, not his down syndrome, so no info there. Because half the babies on the heart ward had down syndrome, there are lots of Introduction to Down Syndrome "Welcome" Packs, supplied by DSI. This is how we got our introduction to exactly what down syndrome was. That and the wonderfull world wide web (where would we be without it!!). No one ever explained that he might have problems hearing, seeing, speaking, walking, crawling, ear infections, chest problems, more colds, thyroid problems, and so on and on and on and on........
We have found these things out over time, speaking to other parents, reading the books, the internet, anything we can get our hands on. There is no leaflet "What to expect for the next 10 years". I know that we can never predict what can happen, but maybe there should be a little something, like a person in each childrens hospital and maternity hospital who can sit down with the terrifed parents and explain things, what this syndrome is all about. It's taken so long to gleam all the information we've learned, and still I can't shake the feeling that we've been left in the dark. Maybe this is down to the way all the medical tests have been organised. Mystery appointments come through the letter box. As it happens, I have only recently found out that Cathal's original pedeatrician in the Coombe refered him to have his eyes and ears checked. Bloods are taken every time he goes to the baby clinic to check his thyroid, and again it took a couple of visits to find out why.

Should anything else be done for him? I really don't know.

The referal system for early intervention was never explained, or even where he was being refered to, again, left in the dark about my son. This could be down to poor comunication, lack of Mammy being able to think on her feet and ask the appropriate questions. It's still a little hazy as to what will happen when Cathal is a year and the Coombe will not look after his general health. We should be refered to someone else to take over the job, but this process is also a litlle unclear.

That's just the medical side, what about all those benifits and state aids that could help ease the medical finances? You are certainly not given a list of those. Should the Department of Health and Children or the Department of Social and Family Affairs not direct you to what help there is available. All it would take is a leaflet outlining all the benifits available to you, distributed in the childrens hospitals, in the maternity hospital, the socail workers. There are so many people who don't know what they are entitled to, for example, did you know that if your special child is not potty trained by age 3, you are entitled to free nappies....that one slipped you by did it? I'm not surprised. It's like drawing blood from a stone.

So you apply for all your bits and pieces to help make ends meet while you drive your precious cargo from physio to the cardieologist to early starters to anything else you can think of that might help in any way to make sure your baby reaches his full potential. And you agonise over whether you should go public or private and hope you can pay for it all, because you know that your baby will probably get better medical treatment if you go private. At the moment, we are private for Cathal's heart, we have helath insurance, but we go public for everyhting else, in the hope that nothing else crops up. If something does, by god we will go private with that too. We'll scrimp and save if we have to, but in the meantime I've applied for all we can apply for (I hope).

Recently, I sent in the medical card application form, however I foolishly filled it in Cathal's name and "modified" the form to include all Mammy and the Dad's financial details. Letter number one arrived:
"Dear Mr. Cathal,
Please forward you most recent payslip, travel to work expenses, loan payment details."

Well obviously because Cathal is 5 months old, he dosen't work, but they seem to have failed to look at his date of birth, and the 101 documents I attached with the form. So I walked down to the office with Cahal in tow.
"Hello, this is Cathal in the buggy, but all our info is with the form."
"Oh, well look at that, so it is. But you know you can add x and y if you like."
"I don't think I need it, Cathal should get this card because HE is entitled to it, due to his genetic and medical conditions you see."
"Oh no, it's all based on the finances"

Sigh. I could have told them we won't qualify under that. So I brought down documents x and y a week later, only to get in the post another letter, a few days later, asking for my most recent payslip, even though I had explained twice, in person, that my most recent payslip is dated January because I am on maternity leave. I rang them, and expalined this again. Now I am psyching myself up for the refusal letter that I know will arrive any day.

Why do they make it so hard? Why when I am already fighting they make me fight even more? His conditions are there in black and white, all typed out and signed off in triplicate from two hospitals, and yet they insist I take the long, round about way to get what Cathal is entiteled too.

The sad thing is, this is only the begining, there are a lot more fights to come, and already I feel tired.

Luckily, there are some people very willing and able to help. When Cathal came home after his operation in April, he was put on two very expensive drugs. The local chemist would not take payment for these drugs until we were all signed up on the same drugs payment card. Again, I sent in the application, but heard nothing back. I kept going back, trying to pay, but they would have none of it. Last week, I had to order another bottle of one of the drugs, and again, they would not take payment. Instead, they made me fill in an emergency form, and I payed for everything, including some tablets for the Dad under the same month, so in total, three bottles of Cathal's medicine and the Dads medicine cost €90, when in reality, I think it would have cost €300. Thank goodness for the good people out there.


The moral of this story is support your local chemist, none of those big chain ones. The family run chemist on the corner is the one that will look after you.

And Now He Can See You

Official announcement number two:

Cathal can see

Yes, it may come as a shock, I know you were not expecting it, but it is true.

Seriously though, Cathal had his first eye sight test today. We spent all night learning his ABC's, and it turns out that he didn't even need to read a chart for the test. Oh well, I guess I'll just start him in school now that he knows how to read *sigh*.

At this age (between 5-6months) all they are looking for is that he can focus. I could have told them that. He was a little young for some of the pictures and he was more interested in the lovely doctors face than the picture cards (he's got a bit of a thing for pretty ladies at the moment), but she was very happy with him and is not concerned. His next eye test will be at the end of January, and this will determine whether he is long or short sighted and whether he will need glasses. Apparently there are glasses out there for little babies, and honestly, I'd say it is likely that Cathal will need them, if he is anything like his Mammy.

Some things you can't put down to the downs, like eye sight, if short sightedness runs in the family, well you've got a 50/ 50 chance of getting it anyway. So any child of mine runs that risk. Hopefully he will have 20 20 vision like the Dad. Some things you just can't blame on a dodgy chromosome, like a bad mood, poor sight, cutest nose in the world, super ticklish cheeks, neck and tummy.

Cathal is 50.5% me, 50.5% the Dad, 101% perfect.



On a separate note, I'd like to warn you all that Cathal has a bit of competition in the greater Dublin area. Yes, there are a few other little babies out there that are competing against him for the title of "Cutest Baby/ Toddler Who Happens To Have An Extra Chromosome" (I'm working on the title, the sash might be a little to big otherwise). The nominees so far are Noah, Ava (Cathal's debs date) and Liam. We've met them, and the competition begins in earnest. If you have a suitable candidate that you would like to enter, us Mammies are trying to meet and compete (well when I say compete, I mean eat biscuits, drink tea and chat) once a week. So if you'd like to join in, please feel free to e-mail me.

Rollin' Rollin' Rollin'

Rollin' Rollin' Rollin'



The Worm

HAPPY BIRTHDAY!

Happy Birthday (on the 21st of August) Nan P


Ahh do do do do do
Ahh do do do do do
Ahh do doooo do do do dooooo
Happy Birthday to you!!!

He Can Hear You

It's official, Cathal can hear.

Yippy!!!

Yes, he had his first hearing test on Monday, very exciting. How do they test a 5 month olds' hearing I hear you cry, do they wear headphones, do they need to raise their little arms? Bleeepppp.....did you hear that love? Why yes I did Mammy.

No no, they stick three little sensors onto the baby, one behind each ear, then one on the forehead and connect them up to a computer. Then little ear phones are put in the ears and sounds are played. They measure the response through the brain, somehow, through the magic of science. They are able to measure from the outer ear to the 'hearing' nerve, so they know that Cathal can hear down to 20 decibels, which is what you need to hear language and speech. Right now though, they can't determine how he is processing what he is hearing, in fairness, he can't answer back yet. But I can already tell that he has selective hearing.....Cathal, Cathal.....shushh Mammy, I am watching the Olympics. Swimming is great, the water is so shiny and splashy.

Oh, and by the way, the baby needs to be asleep for the test....they need to arrive awake, and then sleep at the click of your fingers. So in preperation, I kept him awake all day, well, he slept 15min midday. He was a cranky, cranky boy going ino the test....poor little man. He went out like a light.

Honestly, while the test was being carried out, I started to get a little worried. The Dad got the jitters before me though, all of a sudden you think, what will we do if he can't hear? How would we cope with that one....We already have the heart, how could we deal with another issue? It's like a check list that we have to go through now with him,
heart? bad
hearing? good
thyroid? good so far
eyesight? that's next, in a couple of weeks

It's funny, we get these mystery appointments in the post. What's this for? Ummmmm, eyes maybe?

I think this will be what it will be like for the next few years, never mind the milestones and mental development, its all the health and medical issues that throw you. Hopefully, because we got the raw deal with his heart, we will have no other trouble. He is hitting the milestones like any other baby, so I have high hopes for him.....my little, smily, happy baby

To Work or Not to Work

The question that all Mammies ask when they come up to the end of their maternity leave, "How can I possibly go back to work?" I was due back to work in September, when Cathal would be about 6 months old, but he is just far too little to leave for the whole day every day. At only 6 months old, how can such a tiny baby cope in a crèche, demanding the attention of a carer who has to look after two other babies and fight crime at the same time? Well this question has been racing around in my head for some time. Then, a couple of months ago, I started to hear the rumours, 5 people let go, a few weeks later 10 people let go, a few weeks later and they are asking everyone to take a 10% pay cut......what is going on???

I work in the doomed construction industry, and it's all going to pot. In fairness, I do think most places had over hired a few years ago, and this little blip is now taking it's toll. So I weighed up all the factors. With Cathal's little extras, I had decided that going back to work full time was just not an option, after all, who would take him to "school" on Friday mornings to sing songs?

We did the maths, wages in, benifits in, mortage and childcare out, food and expenses out, and the sums just did not add up. I would be earning peanuts working 20 hours a week, and peanuts, although quiet tasty, just dosen't pay the bills. It was decided by a vote of three to nothing, that I will take the extra 16 weeks (genourosly) unpaid maternity leave, and add to that all the bank holidays and holidays I will rack up, I would not be due back to work till early 2010 (yippy, extra long holidays). By then, Cathal should be going in for surgery, so I am going to take at least a year of carers leave to help him recover from that little event.

And guess what, my employers are fine with this. It gives them breathing space, saves them a bit of cash in these tough times, and gives me time to concentrate on Cathal and help him achieve all that he can (he'll be playing Grade 6 air piano by this time next year).

So I going to be at home for about a year and a half, you know just lazing about, drinking cups of tea, watching Murder She Wrote and Dr. Phil (a deadly combination). I am looking forward to it though, I'm just not ready to join the workforce just yet, Cathal changed all that, I was totaly prepared to go back to work before he was born, but now his big smile tugs at my heart and I just can't leave him......*sigh*, the joys of motherhood.

Holidays....la la la la la Holidays

I saw a sheep

We went on holidays, yippy! Three days in Westport, yippy? Our last holiday was two years ago. Those were the pre recession, pre mortgage, pre baby days....ahh, I remember them well, we were young, careless, free, we had a disposable income. Where did it all go? Because we knew that we would be buying a house the following year, we decided to splash out, we went on a Caribbean cruise and three nights in Miami (a far cry from Westport, let me tell you!)

This year, after all the stresses of the last few months, we decided to take a tiny break. With Cathal's little heart, we didn't want to go somewhere too far on a plane or too hot....the West it is then.

I must say, what a beautiful little town Westport is, it has won many tidy towns competitions and it shows. The air.....ohhh the air.....so clean and fresh. Cathal kept sneezing, not used to that pollution free, pollinated air.

We went on a little day trip to Achill too, magnificent. Delicious food, beaming sun, clean (cold) sea, sheep, what more could you want.

It was all too short though, next year, I've decided, that respite grant is going to be used on a big holiday (two week cruise anyone?)

Gosh, that water's cold and splashy Mammy

Merci aux “frenchies”

Merci à tout le monde pour tous vos bons souhaits, et surtout pour tous les emails envoyés via Nan Pascale depuis le début.

Un merci spécial à la famille Claes pour la carte – photo de la réunion en juillet, et tous les beaux messages écrits dedans. Merci à tout le monde (branche Perrot, branche Claes et côté Citté) pour les beaux cadeaux. Cathal les apprécie . . . même s'il ne sait pas trop quoi faire avec certains, mais cela viendra!

Pleins de gros bisous à tous.

Cathal, Martin et Sylvaine

PS – Traduction: Pascale

1000

Hip hip Horray!!!

My first 1000 visits to my little blog (well, 1025 as of midnight last night, to be exact).
Thank you to all of you who keep coming back to read and share

bouncy bouncy bounce

Happiness for me.....

Just like Sesame, Hammie tagged me (I don't even know what this is!) to come up with six things that make me happy, so here goes:

1. Martin
The love of my life, my partner for the last 8 years, and the father of my beautifull little boy. He is my best friend (I know, get the tissues, it's all getting a bit weepy again), he is a rock in my life. When things get very hairy (and I ain't talking about my legs), I can break down and cry in his arms, and he takes it, and supports me. He is a mirror of me, we are so alike that I feel he completes me.

2. Cathal
My little boy who I cannot even imagine life without. He has introduced me to a world I hardly knew existed. We have already met so many kind and lovely people through him. I love when first thing in the morning, when the dad or I go into his room to get him up at 8.30/9, he is usually awake just looking around, sucking his fingers. It takes him about 5-10 seconds to recognise us, but when he does, he gives us the biggest, toothless smile in the world and his limbs swing up and down with excitment.

3. Lazy Sundays
I love nothing more than lazying on a sunday, get up late, breakfast, brush teeth at 1, eat junk all day, watch trashy tv (Murder She Wrote in particular), just being a pig. With Cathal, this hasn't happened for a while, and is not likely to happen until he is 14, can't wait!!

4. Holidays
Love holidays. Love sun. Love heat. Love walking around a new city. Love discovering lots of tasty places to eat. (The dad and I don't care for boozing, so we make sure to find all the best places to eat, including the best places for dessert. Other people drink, we eat sugar.)

5. Owning my house
Well, the bank owns most of it, but I can do what I like to it, and we both slept in a brand new bed for the first time when we bought our house (we are both products of the last recsession, hand me downs for both of us growing up)

6. Retirement
I can't wait to retire. I love it already. I am looking forward to that day when I know I never have to work again. I will be fighting for Cathal to be as independent as possible as an adult, if only so that the dad and I can retire and travel the world (selfish, I know, but who can pass up a permanant holiday)





Now your turn.... think of 6 things that make you happy, feel free to add them as comments below, or write them in your blog

The Muse
Travels of a Lemonead
Purring not Laughing

Breast Feeding, the taboo topic

I have started this post so many times. Will I write it....no I won't, no, I will, nah. Well now I have finally decided to do it. Breast feeding is something that, to me, was one of the most natural things in the world and is now something I feel very passionately about. I was breast fed, so was my brother. The Dad was breast fed, the only one of four. My aunt has breast fed all three of her boys. My three sisters in law breast fed all their children. So of course I was always going to breast feed. I was shocked to find out that it's just not the norm in this country. The breast feeding rate is shockingly low, approx 40%, but I believe the number of women who continue after a few weeks drops again.

The one thing that you are not told is how bloody hard it's going to be for the first few weeks. Natural my arse. Nothing this "natural" should hurt this much (this goes for child birth too by the way, maybe I should have had that epidural). And it is hard, very very very hard.

I had planned to go to a local breastfeeding group the week before Cathal was born, but he had other ideas and entered this world on the day the group was on. So that was that, I really hadn't a clue. Then he just would not take to breast feeding when he was born. I now know that it was due to his sleepy, I've just been born, and I have downs, and low muscle tone all over, poor me thing he had going. Also, the three little heart conditions didn't help in any way. He wasn't breast fed at all the first day. He was put on a drip when he got to Crumlin that night, and I think I tried the next day, but now joy. The nurse was lovely, and did try to help, but she didn't really know what she was doing either. I think that the nurses and midwives in this country only get minimal training in breastfeeding, so can't give any practical or knowledgeable advice. They do try, but nothing beats first hand experience. This seems to be why so many women give up so quickly, the lack of good advice and the lack of support. A few posters in the maternity hospital and a leaflet I just happened to spot in one area was my guide before Cathal was born. If this is any indication of the support out there, it's not surprising why the numbers are low.

Luckily, one of my sister in laws had lent me her pump (thank you so much L!!) that she had finished using. This was a life saver, I was able to get my supply going and bottle feed Cathal EBM and he also got formula. I kept on trying to latch him on over the next few days, but he was so sleepy (very common for new heart babies), he would suck away for 5mins, then go to sleep. He was getting more and more jaundiced, which just made him sleepier. So, that was three things making him sleepy, downs, heart, jaundice. It was a vicious cycle. Even though I kept trying to latch him on, we would bottle feed him too. The routine for the day was, get up, express, go to hospital, spend all day there, home at about 10pm, express before bed while boiling everything that needed to be sterilized (including the actual motor part of the pump, it still works though), alarm set for 4am, get up express while falling asleep in the kitchen.

By the time he left hospital, I was expressing enough for him. I kept this up at home for a few days (and we bought a sterilizer, well worth it for the two weeks I used it). Then I hit a solid brick wall, I just coudn't do it. He wasn't getting it, I wasn't getting it, we were both all over the place. Expressing is such hard work, firstly, you feel like you belong on a farm, so that doesn't help your confidence, secondly, I could not express enough for Cathal. He wasn't latching on, I was so exhausted from the 10 days he was in hospital, I broke down. I remember crying in the Dad's arms saying that I needed to sleep just for one night. When Cathal got home, I would have to wake him up at 4am(too sleepy to wake himself up), try to feed him, which would take about 30-40min, then express for another 30min. I went out that evening to buy a box of formula (NOOOOO.....don't do it!!!) We made up a feed (it's far too complicated, you need to boil water, then let it cool, then exact measuring and mixing and then warm it up again!?! Takes 5 hours to make up a bottle) It did not go down too well, he threw most of it back up, awful gloopy stuff. Mister Cathal was used to booby milk and pre made little packets of formula, if you don't mind.

I posted my dilemma and crazy stressed out cry for help on roller coaster, and the fantastic ladies on the breast feeding board showed me the light!! Hallelujah, people who know what to do and what I am going through. They told me I was not alone. Most breast feeding women go through this, they sent me to Kelly Mom . This is an amazing website, full of practical, step by step, picture described latching on positions and other fantastic information. I tried the techniques, and low and behold, it worked!!!! Cathal was latching on. Good buy pump (or so I thought).

The second time Cathal was in hospital, I was able to breast feed him on demand in hospital, express enough for him during the evening and morning for the night nurses. He got formula once, by accident (don't ask, I am still raging about it). While he was in ICU, he was tube fed my milk, and I truly believe that because of this, he made such a speedy recovery. He was waiting 2 weeks for the operation and during these two weeks, there was a nasty tummy bug doing the rounds on the ward. Did he catch it? Not at all, he's a strong boy.

If you can breast feed, you should. Feeding a special needs baby though is tough, small mouth, low muscle tone, tongue tie, heart problems, all contributed to Cathal's slow start. But we got there. If we can do it, any one can, you just need the motivation, the drive to keep going.

It is hard to start, and painful, but it does get easier. Breast feeding is a supply and demand thing, no matter what size you are, you will always have enough (I am a testament to this, not too big on top am I). Trust is one of the things that you also need to learn. Your baby knows how much he needs, so no need to obsess over how many ounces he's taking, trust him.

I plan to breast feed up till he is a year old, so that he can get the full benefit of my immune system while he recovers after his big operation. I would encourage all the lovely mammies to be out there to try it, that's all, just try it, and give it a chance. You do grow to love it, eventually.

Not a boob in sight

Chapter 10: How Great My Son Is

I am going to take a moment to list all the fantastic things that Cathal does. So much that we are told by the medical people can be negative, lots of "delayed development" is bandied about. The books outline all these delays in detail, the likely medical problems. Well, now I'm fed up with it all, I know all about the delays he is likely to have, and now I'd just like to focus on all the fantastic great things my son can do right now.

Numbero uno: When he is on his tummy, he can lift his head really high. He also now tries to tuck his knees under his bum and lifts it up. He manages to inch forward very very slowly. Only problem is he hasn't figured out how to get his right arm out from under him, so he doesn't get very far.

He laughs when he gets tickled under his arm and on his tummy.

He smiles at me when I pick him up out of his cot.

He has the best conversations and can make lots of different noises.

He holds his head up very well and can sit up with just a little bit of support from mammy and daddy.

If he goes to bed without his sleep bag on, he manages to get on his side and wiggles around so that he is lying across the cot instead of length ways.

I'm going to lie this way, if you don't mind

He loves listening to singing and smiles when we sing to him.

He is really great at shouting at me when he is not happy, and only a boob will comfort him (he has me wrapped around his little finger)

He can roll onto his side from his back and he can roll from his tummy onto his back.

He can through a punch at his toys that hang over him when he is on his play mat, chats to them, catches them with both hands and tries to get them into his mouth.

He can lift his legs up 90 degrees when he lies on his back.

He is still breast feeding, even with a bit of low muscle tone, a smaller than average mouth and a little tongue tie.

He plays peek a boo. If he is lying on Mammy or Daddy's chest, he looks up at us then flings his head forward to hide.

He likes watching Richard & Judy (well, this isn't necessarily a good thing, he likes looking at people on the telly).

Ohhh, look what Richard has said now!!!

Best of all, he has decided which fingers he prefers to suck. His middle and ring finger on his right hand, just like his Mammy and Mammy's brother used to do.

Baby on Board

I don't know how many of you got a chance to see the latest edition of Baby on Board on RTE.

http://www.rte.ie/tv/babyonboard/s2_episode5.html

I bring it up because the similarities were uncanny. The couples son also had downs and four heart conditions (damn, he beet us with our measly 3 conditions). It was so nice to see others in the same situation, not that I would wish this on any one, but to see that we are not alone was a huge comfort. We recognised everything, the gauntlet of emotions, the door into ICU, the waiting room were you wait while your baby is in surgery, even our surgeon, Freddie (that's Prof. Freddie), was there. I did shed a few little tears, because even though we have been through a surgery, we haven't had the big one yet. It's the heart and lung machine that scares the bejesus out of me. The six hours of waiting doesn't help either. I wish we were on the other side, but we are not, and we still have to wait for the time to come. I try not to think of the upcoming surgery too much, you could start to get obsessed with it. The best thing, as with everything, is to take it one day at a time, and cherish every moment, even when all that Cathal does sometimes is scream in my ear the entire day.

Slowly, I have come to realise that we are not alone with Cathal, there is a huge community out there, and I am starting to get involved. I recently joined the Down Syndrome Ireland discussion form, and so far loads of people have said hello to me. I also sent in the application form to become a member of DSI (look at me being organised!!). Rollercoaster has been fantastic too, and it's there that Nick (Downsdad) introduced Jacob to me and sent me 'Welcome to Holland'. I realised that it was ok to grieve, and I found it easier to accept it all through Jacob's story. (Thanks Nick).

I would like to thank every one who has sent their best wishes and support over the last few months, and I hope you keep reading.

I have a feeling that I am going to meet a lot of good friends on this little journey that the three of us are on.

Bye Bye Pussy Cat

I am so sad to announce the death of our pesky beloved cat Leo. He died on Sunday afternoon, while we were out. He seemed to be doing much better after just starting on some tablets and special food for his liver failure that was diagnosed about a week ago. Even though he was a pest, he was our likeable pest, and we miss him terribly.

Cathal and Leo on Sunday morning after kicking
mammy and daddy out of bed
"Now we can final get a bit of kip"