Sunday, January 29, 2006
I have a feeling that it is going to be a very long couple of months, we now have to sit and wait for Michael's appointment for surgery, an appointment for a CT, and then we have to wait whilst the NHS argues over where we go for our ENT appointment.
Why can't it ever be as simple as - this child needs this doing so we'll do it. Why does it always come down to money?? Why yes my head is firmly planted in cloud-cuckoo-land!
The problem that we have is, our local hospital I have zero faith in, and I try to avoid it at all costs, no-one there is prepared to take responsibility for Michael, because he has a Resp, so when I try to discuss things with his Paed there, we get talk to his resp.
His Resp works in a different Health Authority, his hands are tied, because we don't live in that area. Its not that he's being difficult, it's just that he can't do it, the hospital and red tape will not allow it.
I may be looking at this from a very simple point of view, but to me, if the Paed is saying I think you should be doing this, because its best if it all happens in the same place, then the Health Authority that we live in should be paying for x & y, wherever is the best place for x & y to happen.
Who is it that suffers in all this???
Saturday, January 28, 2006
Friday, January 27, 2006
Wednesday, January 25, 2006
The last couple of nights I've had to video Michael sleeping, and making all kinds of weird and wonderful noises, to hand over to his Resp today. So this morning was spent desperatly trying to remove what I'd filmed from off the Camcorder and onto a CD to take with me...didn't work, so we had to do it the old fashioned way of recording it from the TV.
There were a couple of occasions last night whilst I was filming him, where I actually wondered if he'd stopped breathing, I could feel my heart racing, thinking do I poke him? Or do I leave him? Am I seeing things?? Am I having a flash-back to NICU days when he used to regularly stop breathing and we had to flick his feet to get him started off again! Am I losing my marbles?? (Don't answer that one!!)
Michael hasn't coped very well with seeing himself sleeping, and I'm not sure if it's not the noise he makes whilst he's sleeping that's worried him, but we had to turn it off whilst he was around.
So anyway, this afternoon we trotted off to see the Paediatric Surgeon, who examined Michael and said, "hmm not a lot there is there?
Anyway he needs a double Orchidopexy, because of Michael's lung issues we have to be admitted into the ward, and because he needs double surgery it may mean that they aren't able to do both at the same time, depends on how complicated it is, there seems to be some thought that one may be caught up in the scar tissue from his hernia operation.
In other news Michael himself was a dream! No repeat of Monday at all! Might just have to take DH with me next time!!
Tuesday, January 24, 2006
But I was talking to Michael's teacher and some of the other Mum's and we got onto the subject of Why? questions.
Michael has been asking lots of why questions just recently, he wants to know the why's of everything.
But I have to say the following conversation he had with his teacher made me laugh.
The conversation followed a session they were doing on Humpty Dumpty, the egg that sat on the wall.
Michael said to his teacher, "Why did Humpty break?"
To which his teacher replied "Because he's an egg Michael"
Michael then returns with "Why is Humpty an egg??"
ERRRRR!! Because he is - doesn't cut it with Michael!!
Monday, January 23, 2006
Collected Michael from school and we toddle off to clinic listening to Stephanie & co pelting out his favourite tunes....get to clinic fine no problems, get weighed 23.8kg..............so when he was weighed in school by the Nurse he was 24kg, when he was weighed by the Doc in clinic he was 24kg, so at best we've put no weight on in 5 months.
Long, long story short, we started off with a peak flow measurement, which Michael just wasn't able to do, doesn't have the lung capacity. No great surprise there to either me or his resp!
As for the sleep study, they want to do one at home, which includes video him having one of his breathing episodes, and take it in with me when we go back on Wednesday. He is going to arrange for Michael to get a pulse ox type machine to wear for 24 hours, so he can see what his 02, pulse levels etc are like over a 24 hour period, we have to include a period of exercise in amongst this too. The probe sits on his finger and the machine straps round his wrist like a watch - dinky little things they are!! But will mean it having to be splinted to his arm. Aren't we just going to love that!!
He cannot arrange another video fluroscopy, but is going to discuss with the SALT at school a feeding assessment done in school.
When I was asked what the referral to the surgeon was about, I told them about the missing boy bits issue, and was told that this should have been done before his first birthday and at latest by the time he was 2. Anyway the registra decided he would see if he could find Michael's "bits", I'm not kidding he poked that hard, he made Michael squeak, but he found the flaming things. He then tells me this is fine, because they're there!!
I know they are there, I'm concerned because they never come down by themselves...so we will be going back on Wednesday to see the surgeon about his testicles.
All in all, it was a pretty decent run to the hospital, but this is where the red mist descends....
Michael has put on a pretty good showing of why he got his Autism dx this afternoon.
We got out seeing the Dr and went to book another appointment, and Michael opened the double doors out of clinic and shot off down the hall...I went and got him brought him back, and he was throwing himself around, flailing his arms and legs screaming and wailing.
I eventually managed to get him back to the car, and then get him in the car, and he screamed, wailed, shouted, ranted, raved and generally behaved like well an Autistic child...he was throwing things around the inside of the car, he emptied my handbag all over, he was kicking the doors and the dashboard of the car............... and then his party piece, he opened the window and started trying to open the car door, telling me he wants "out the car".
So I stopped, put him in the back of the car, with the child lock's on, and drove the rest of the way home with him wailing, crying, kicking, screaming, throwing things, I'm trying desperatly to keep one eye on the road, and one eye on him to make sure he wasn't clambering out the window.
What was it all about???? What caused this earth shattering major melt-down????
A chocolate biscuit - he wanted & I didn't have....
So I was just a tiny bit stressed when we got home, and I have it all to look forward to again on Wednesday.
Saturday, January 21, 2006
Anyway I thought I'd go and do some work on Michael's website, because I haven't updated in a long time, and thought it was about time I did.
Only to discover I've exceeded the bandwidth and they've frozen the website!! Hmmmm wonder if I've had lots of visitors this month!!
So my appologies but you can't get into Michael's website tonight, I've sorted more bandwidth, hopefully it will be back tomorrow!!
Wednesday, January 18, 2006
So what happens when, Mum is upstairs putting clothes away and Michael wants a drink??
He makes it himself, which is wonderful, (ok maybe not,) for most children I guess it would be seen as a step towards independance, and I guess, it is the same for Michael.
BUT the one thing that worries me and sets off warning bells in my head, is his lack of a sense of danger. It's how we balance his need to do things for himself with his awareness of the dangers.
The other kids will come find mum or shout "mum I want a.......??" but not Michael, he never has done.......I want therefore I will have.
If he is going to continue to make himself drinks, then we need to work on; doing it safetly and also making it drinkable!!
The milkshake carton was full, so in that mug of milk is 350gms of powder!! YUCK!!! It didn't dissolve in the milk, there was just too much powder for the milk to cope with it. It just sat in the mug, a pink gloopy mess!!
It just wasn't drinkable, which is a real shame, but on the positive side, he didn't spill the milk which is awesome!!
Sunday, January 15, 2006
We send our children to school thinking they will be safe, and that no harm will come to them, and yet here we are, with our Goverment Ministers approving convicted sex offenders, to teach.
It makes it all the more scary in light of what I have just read here ...."what do we say?" What Jordan's mum discovered and the trauma Jordan went through, that here we are in the UK with our goverment giving the green light to sex offenders to work in schools.
Saturday, January 14, 2006
Michael's school run a club on a Saturday morning, for the children with Autism and their siblings, they had a place become available and wanted to know if we wanted it for Michael.
So this morning, after our little session with the Lazy Town album, we all went off to school to see what it was like.
J, unfortunatly fell outside the main door to the school, which managed to put a dampner on his enthusiasm, but when I got out from cleaning up the war-wound, Daddy was throwing himself into the "keep-fit" activity that was going on, trying to encourage Michael to join in.
Michael was somewhat confused by being in school, but doing something totally different to what he would normally be doing. His classroom was locked, only some of his class mates were there, his teacher wasn't there....so it took him a little while to adjust to being there to do something different, and I have to confess to starting to wonder if we'd done the right thing in bringing them. J, with his injury took a long time to actually come round, and for a while no amount of persuasion etc, would get him to budge.
But can I say they had a ball, they had a wonderful time, after keep fit, they got the choice to do Computer's, Art or Cookery.
This is the point at which both Michael and F. thawed out, they opted for Cookery, making Pizza's. Both love cooking, so really threw themselves into rolling out dough, spreading tomato sauce on the pizza base and then the cheese etc!!
After going to look around the other rooms I ended up in cookery with J too, but he didn't want to take part, he just sat in the corner looking and feeling really miserable, so DH made his Pizza!! He does find it difficult going into a new enviroment, filled with people he doesn't know, so the fall just added insult to injury with him.
But by the time snack time, and outside play-time came even J had a grin on his face, as he scooted round the play-ground on a two wheeled scooter.........
On the way home the three of them chatting excitedly about what a nice time they'd had and wanting to know if they could go back tomorrow!!!! So I think this may have been a success!!
we had melt down this morning over the Lazy Town album, not wanting it on the CD player in the house............ but in the car! I had thought putting it on in the house so we could listen to it before we left for Saturday Club, would be a good idea....didn't take me long to discover, it wasn't one of my better ideas!
It went on in the car on the way to Saturday Club, it was on in the car on the way home from Saturday Club and it followed us into the house........where it has been in the CD player all day!!
So we have sung and danced along to LazyTown's Album .......
Click here : this is the Nick Jnr Radio page if you move the dial to the picture of Sporticus you too can sing along with Lazy Town.......... believe me, they are those types of songs that get in your head, and you'll find yourself humming!!!
So now the million dollar question is - do I do him any favors, in pandering to his "obsessions" should we realistically be working towards losing this behavior?
If so how??? (Ok I know that's two questions!!)
Friday, January 13, 2006
Thursday, January 12, 2006
BUT............... I have a problem....I don't believe I'm about to post this....I really don't believe that I am about to write what I am about to write.
I need a picture, and if anyone can provide this picture believe me I would be incredibly grateful.. I need a picture of Stephanie's ears! (Believe me it feels really strange asking for this!!)
No ears...... in any of the pictures of Stephanie, so therefore in my son's little world........ Stephanie has no ears.
Yes, you and I both know, that Stephanies ears are in fact under her big pink wig, we know they are there.......but Michael can't see them, so to him they are missing. Please believe me when I say that it is distressing him greatly that Stephanie has no ears!
LazyTown is a funny, fresh show that blends movement, music, comedy and great storytelling in a colorful, fast-paced, upside-down world.
Stephanie comes to LazyTown from the outside world and meets a zany mix of kids and grownups, including the world’s laziest super-villain, Robbie Rotten.
Fortunately for Stephanie, LazyTown is also home to Sportacus, an athletic super-hero who jumps, leaps and flips his way across LazyTown while helping Stephanie navigate between healthy lifestyle choices and easy but unhealthy ones.
The unique look of LazyTown combines the worlds of CGI, puppets and live characters. The stories are always lively and entertaining, motivating solid values. LazyTown may have the laziest name on Earth, but it’s jam-packed with action, energy and a powerful message that tells all kids they have the will to succeed.
Wednesday, January 11, 2006
We had a visit with the Paed, who overall, was pleased with Michael, despite dodgy scales and height measuring equipment, his height and weight are good! We had a discussion about certain area's of a little boys anatomy that have not put in an appearance yet!! So she has said she'll follow up our GP's referal letter, with one of her own. So we're now waiting on an appointment with the surgeon!
I also mentioned my concerns that Michael may have some adenoid issues, and what was the possibility of a referral to Ear Nose and Throat?? Before I knew where we are, we're talking about how obstructive sleep apnea is a possibility.
Apparently this is not uncommon in children who have the kind of swallowing issues that Michael has, the throat collapses whilst they sleep....so the Paed has said she will write to Michael's Resp, requesting an assessment of Michael's sleep.
We have an appointment with the Resp at the end of the month, so I'll let you know how that goes!
The Dietician has changed Michael's formula - is that what it's called or is it more a liquid feed?!
Anyway, we are no longer on Nutrini we now have Tentrini, and instead of 200ml bottles we now have to find space for 500ml bottles!! Tiny things they are - yeah - who am I kidding, they're huge, they are bigger than a pint glass!
We also managed to feed him with completly the wrong feed for a week - yes I know that makes me an appalling mother, the bottles are the same, the labels are the same colour, this was our first shipment of this feed, and neither I nor DH, actually realised till we opened the next box that what we'd been feeding Michael up until that point was adult feed!! Luckily he appears to have survived without any harm being done!
I guess the downside of playing this game for any length of time is that you think you can do it in your sleep..........when something like this happens and you realise that you can't!
I don't think I shared this, but I managed to get a few days away in Rome, back in November, and can I say it seems like a million years ago now!! But it was wonderful, Rome is the most amazing place, my friend and I stayed in a hotel close to the Spanish Steps, so most of central Rome was within walking distance, the Colosseum was 20 mins away.
I have to say that there is something incredibly moving about the Colosseum, knowing what occured in that arena one of the first things you see is this:-
Friday, January 06, 2006
I have been in reflective mood, wondering if I have created some kind of monster - and no I'm not talking about Michael, although he has been recently....... more about that later.
It stems from Shelley having Jacobs photos stolen, and used on a false website, some person kinda figured they'd get off on having preemie twins, and introduced themselves on a premature baby forum.
Anyway it got me kinda thinking, about not only my blog, but Michaels website
I created Michaels website because I wanted to share the reality of life with a premature baby. To show what it's really like to live with the fallout, the rollercoaster ride of emotions that we faced, the reality of disability and the days of tears, frustration and anger, trying to get your child's needs met, the side not portrayed in the media, and in my experience, not shared by the Dr's either.
I am fed up with the amount of wonderful preemie success stories that float around, proclaiming what wonders are being done to save such tiny babies. There is no thought to the realistic side of saving a preemie, there is no information shared with future preemie parents, about the reality of these miracles. Headlines scream of the "Worlds Smallest Baby goes Home", but no-one goes back 5 years later to see just how this child is doing.
More often than not you do not skip off happily into the sunset with this perfect miracle child, some are lucky, some do........the very real side to life with one of these miracles, for many parents, is being dragged kicking and screaming into a world of Special Needs. Fighting anyone and everyone to get support and services for your child.
So I was honest and open about our lives over the last 6 years, I have shared personal photo's, videos and memories. I have described the anguish we felt and continue to feel, and the aim of this was, that other parents of preemies would know that they are not alone. My hope also being that any of the professionals we deal with, that may wander across the site, would sit up and take notice of this world from a parents perspective.
I know this has happened because I've had contacts from professionals who wanted to use Michael's site in teaching the next generation of professionals.
Unfortunately my site is also open to abuse, and this is the bit I have struggled with...in sharing so much information, have I left other preemie parents open to abuse by those who think it would be a good idea to pretend to be preemie parents??
I sincerely hope not.
The Vulnerable Child
What is the Vulnerable Child Syndrome?
Sometimes parents continue to think of their former preemie as fragile and susceptible to problems even though the child is physically and developmentally healthy. They become overly protective, worry excessively, and unknowingly slow or change their child's development. The former preemie may fail to develop self confidence and/or a sense of independence.
How can I prevent the Vulnerable Child Syndrome?
First, try to interact with this child like you would if s/he had been born at term. Encourage socialization and age-appropriate activities.
When considering expectations and when to introduce activities in the first two years of life, use the child's "corrected age", his/her age corrected for the number of weeks of prematurity. For example, if your baby is ten months old and was three months premature, your expectations should be that for a seven month old. After age two, you do not need to correct for prematurity.
Things you can do to prevent the vulnerable child syndrome:
Encourage interactions with other children their age
Let them do things by themselves when they can
Let them have opportunities to make decisions; give them choices
Find play experiences outside your home, such as at parks, play groups
Give words of praise when they do things independently
Don't be too quick to intervene in trial and error learning
Set appropriate limits and be consistent with them
Establish consistent routines so they know what to expect and can develop independence in following the routine
Don't speak for them if they are capable of expressing themselves
Talk to them in age-appropriate language, (not baby talk to a 3 year old)