30 August 2008

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.

27 August 2008

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.

22 August 2008

Rollin' Rollin' Rollin'

Rollin' Rollin' Rollin'

The Worm

20 August 2008


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!!!

14 August 2008

He Can Hear You

It's official, Cathal can hear.


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

10 August 2008

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.

07 August 2008

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