Monday, June 12, 2006
Is there a fine line between crisis and epidemic?????…
The most current statistics read. 1 in every 8 babies is born premature.
1 in every 28 babies is born with birth defects.
Approx 4000 of these babies lose their fight for life.
Many times I sit and think about these numbers, the statistics of a crisis that is still far too silent. The numbers are staggering. The facts are truly heartbreaking.
And the reality….
Somewhere right now…..A couple is celebrating the news they are expecting a Baby, unknowing to them their world is about to change forever.
Somewhere right now…..Bililights are being turned on.
Somewhere right now…..A Mother is on total bed rest.
Somewhere right now…..Blood gases is being drawn from a tiny life.
Somewhere right now…..An expectant Mother is sicker than she has ever been before.
Somewhere right now…..Cryotherapy just began.
Somewhere right now…..An expectant Mother is lying in a hospital bed praying for more time.
Somewhere right now…..A baby is being diagnosed with IURG.
Somewhere right now…..Parents sit hypnotized watching a fetal monitor
Somewhere right now…..A Mothers water just broke many weeks too soon.
Somewhere right now…..A Mother is experiencing pre-term labor.
Somewhere right now…..Parents are decorating a nursery for a baby who will never be using it.
Somewhere right now…..A baby is being placed on high frequency ventilation.
Somewhere right now…..A Mother is watching an ultrasound realizing something is terribly wrong.
Somewhere right now….. A Mother’s baby just stopped kicking.
Somewhere right now….. Expectant parents is given no hope.
Somewhere right now…..A Mother is receiving medication in hope of keeping her pregnant.
Somewhere right now…..A toddler still wears a pulse oximeter.
Somewhere right now…..A Mother is lying in a hospital bed crying in fear of what is soon to come.
Somewhere right now…..A baby is receiving Surfactant Therapy.
Somewhere right now…..A mother is being forced to birth a still born baby.
Somewhere right now…..ADoctor is performing an emergency C-Section.
Somewhere right now…..A Mother is having an amniocentesis.
Somewhere right now…..An umbilical catheter is being inserted.
Somewhere right now…..A Mother is diagnosed with preeclampsia.
Somewhere right now…..A baby is being taken from it’s protective world, and placed in a very clinical environment.
Somewhere right now…..A Mother is standing next to a plastic box looking down helplessly at her baby, making deals with God.
Somewhere right now …..A baby is being baptized in a NICU.
Somewhere right now…..A neonatologist is painting a grim picture.
Somewhere right now…..A Parent never imagined they could feel this kind of heartache
Somewhere right now…..A parent lives in fear, of all they do not understand.
Somewhere right now…..A baby has just exceeded its parents insurance limitations.
Somewhere right now…..Regardless of the diagnosis a Parent refuses to give up hope.
Somewhere right now…..A Baby is receiving Nitric Oxide.
Somewhere right now…..A Baby is having a G-Tube inserted.
Somewhere right now…..A Baby is being given a diuretic.
Somewhere right now…..A Baby just crashed.
Somewhere right now…..An apnea monitor just alarmed.
Somewhere right now…..A Mother is frantically dialing 911 because her baby just stopped breathing.
Somewhere right now…..A Baby is being placed on echmo.
Somewhere right now…..A baby’s life hangs in the balance.
Somewhere right now….Parents are rooming in with their baby.
Somewhere right now…..Parents dreams of taking their Baby home is being shattered.
Somewhere right now…..A Mommy is longing to touch her baby, that is too fragile to tolerate her touch.
Somewhere right now…..A baby is being placed on a vent.
Somewhere right now…..Parents are looking for someone to blame.
Somewhere right now….A parent is signing consent to let their baby go.
Somewhere right now…..A mother is replacing bandages around her baby’s newest procedure.
Somewhere right now…..A Baby is being buried.
Somewhere right now….The pain, uncertainty, and fear has become more than a couple can bear.
Somewhere right now…..A Baby is graduating to a C-Pap.
Somewhere right now…..A Mommy is singing to her baby in a whisper.
Somewhere right now….A parent is being awakened by an apnea monitor.
Somewhere right now….Medical staff are trying to stabilize a baby.
Somewhere right now….A Mother is longing so much to hold her baby, it hurts.
Somewhere right now…..A parent is speaking to a medical supply company.
Somewhere right now…..A Baby is being bagged.
Somewhere right now….Parents are being medically trained to take their baby with special needs home.
Somewhere right now…..A baby is getting their heel stuck again today.
Somewhere right now…..A Mother is experiencing Kangaroo Care for the first time.
Somewhere right now…..A baby is experiencing tachycardia.
Somewhere right now…..A baby is getting their first bath in a plastic spit tub.
Somewhere right now…..A Babys nursery light remains off.
Somewhere right now….A nurse is inserting an IV in a baby’s tiny head.
Somewhere right tnow…..A central line is being inserted.
Somewhere right now…..A candle is being lit for a baby.
Somewhere right now…..A Mother is giving her child a breathing treatment.
Somewhere right now…..A family is having a picnic at a grave site.
Somewhere right now…..A home is being remodeled to accommodate a special needs child.
Somewhere right now…..Parents are walking out of a NICU for the last time with empty arms.
Somewhere right now…..A Parent is wondering what if???
Somewhere right now….A Mother is placing a teddy bear on a tiny grave.
Somewhere right now…..A Mother is awakening in tears from a nightmare.
Somewhere right now…..A child is being given Botox injections, in hopes of easing the effects of Cerebral Palsy
Somewhere right now…..An infection is developing around a central line.
Somewhere right now…..A respiratory therapist is adjusting pressure on a vent.
Somewhere right now…..A baby is going home after months in the NICU.
Somewhere right now…..A Baby’s feeds have just been stopped.
Somewhere right now…..A neonatoligist is sitting silently in prayer.
Somewhere right now….A Mother is feeling guilty.
Somewhere right now…..A Baby is experiencing Bradycardia.
Somewhere right now…..A Mother is walking into a NICU for the very first time.
Somewhere right now…..A small child is being fitted for leg braces.
Somewhere right now…..A Baby is enduring the examination for ROP.
Somewhere right now…..A Father is balancing a role of primary care giver to siblings at home, and work to allow Mom more time with her baby.
Somewhere right now…..A Mother is pumping breast milk to put down a feeding tube.
Somewhere right now…..Parents are searching for a pre-school that will accommodate their special needs child.
Somewhere right now….Siblings are being sent to stay with Grandparents for reasons they do not understand.
Somewhere right now…..Parents are trying to explain to a small child their sibling will never be coming home.
Somewhere right now…..A home is being remodeled to accommodate a wheel chair
Somewhere right now…..A family is living in hibernation to protect their Baby from the health dangers of the outside world.
Somewhere right now…..A Baby is being intubated.
Somewhere right now…..A parent is searching for some kind of normalcy.
Somewhere right now…..A parent is hearing their baby will be severely visually impaired.
Somewhere right now……A surgeon is operating on a heart the size of a strawberry.
Somewhere right now….Part of a baby’s intestines are being removed.
Somewhere right now….A parent is replacing monitor leads.
Somewhere right now….A child is playing as far as it’s oxygen tubing will allow.
Somewhere right now…..A parent is picking out a tiny casket.
Somewhere right now…..A shunt in being inserted into a tiny baby.
Somewhere right now…..Faces are being missed from a family gathering because of the health risk it poses to a Baby.
Somewhere right now…..A baby is aspirating.
Somewhere right now…..A Mother is deciding which one of her babies in the NICU needs her more.
Somewhere right now…..A Mother is too frightened to go home
Somewhere right now….. A NICU nurse is consoling a Mother.
Somewhere right now…..A Baby’s kidneys are failing.
Somewhere right now…..A child is being made fun of because they are different.
Somewhere right now…..A Mothers heart is breaking for them.
Somewhere right now…..A Baby is having a feeding study.
Somewhere right now….A mother is watching anxiously as her near 2 year old child takes its first steps.
Somewhere right now….A Mother is untangling her child from it’s oxygen tubing.
Somewhere right now….A child has just pulled out its g-tube.
Somewhere right now…..A parent sits anxiously awaiting test results.
Somewhere right now…..A baby is being extubated.
Somewhere right now….A Baby is having an echo cardiogram.
Somewhere right now…..A Surgeon is performing a lifesaving procedure.
Somewhere right now…..A Child is being fitted for hearing aids.
Somewhere right now….A Child is having a sweat test.
Somewhere right now….A baby is receiving a blood transfusion.
Somewhere right now…..A Mother is kissing her baby for the very last time.
Somewhere right now….A parent is inserting a feeding tube.
Somewhere right now…..A parent is feeling like they can’t go on.
Somewhere right now…..A Nurse is drawing blood from a tiny little vein.
Somewhere right now……. Grandparents watch helplessly.
Somewhere right now…..A parent is picking out frames for the new glasses their small child will be wearing.
Somewhere right now…..A child can only sit and watch children play.
Somewhere right now…..A Baby is being released to come with feeding tubes, oxygen, and monitors.
Somewhere right now…..A Mother is putting hearing aids on her Child.
Somewhere right now…..Parents are sitting with a Social Worker.
Somewhere right now…..Parents are holding a Memorial instead of a birthday party.
Somewhere right now ….. So many babies are enduring so much more, with some procedures surpassing the imaginable…..
Far too many.....................
Taking an overall average, the average person reads approx 200 words per minute. In the length of time it took you to read this.
7 Babies have been born premature
2 Babies have been born with a birth defect and
1 Baby is preparing to receive its wings.
Wednesday, April 26, 2006
We're back in 02 at night, when Michael's Heart Rate drops so do his SAT's. In order to keep his SAT's rate up, his heart rate is high, the resp said he would discuss this with the Cardiologist. He asked if Michael's heart-rate ever dropped into the 80's, and the only time it appears to do this is at night in his sleep, taking his SAT's with him.
So the 02 is our friend again for the foreseeable future, although it kind of feels like we've taken a step backwards, it's not one I am totally surprised about, given the difference in him when he was back in it a couple of weeks ago, but I have to confess it's not one I ever expected to take.
Thursday, April 20, 2006
Sunday, April 16, 2006
When it was revealed that this was a hoax, there was a sense of shock, disbelief, and anger floating around, from the members there who had believed this womans story, who had offered support and who despite their own experiences had been able to offer support to someone they believed needed it, in the same way as we did when our babes were tiny. The people who know what it's like to really experience this, who still carry the scars of their experience are now left wondering and questioning everyone else around them, and how genuine these people are.
I've read and re-read the article two posts down about the Sarah Everson and her partner, who faked the birth of 6 babies, and one quote leapt out at me.
"I’m so afraid they’re not going to make it," she sobbed. "Nobody understands how hard this is. I know that they’re here. I know what I had to go through to get them here."
There are genuine preemie parents who do know how hard it all is, who know what their babies went through to survive, who sat and watched their little ones undergo numerous painful and distressing procedures in their fight for life, there are preemie parents out there who sat by helplessly and watched, as their little ones lost that fight.
We have enough in our lives, and on our plates, without the sad people in this world, like Sarah Everson who seem to think it's ok to make up a whole new alternate life for themselves, and take advantage of what in reality is a situation beyond comprehension.
Reached by phone late Tuesday, Sarah Everson offered no explanation. "I’m not talking to anybody right now," she said, "because nobody gets it."
No Sarah, I don't get it, I really don't understand why you felt it was ok to do something like this. I'm sure I'm not the only preemie parent who will struggle to understand why you thought this was ok......perhaps these people need to walk a day in our shoes.
Friday, April 14, 2006
Couple’s 6 babies were only a hoax
By Matt Sednesky
GRAIN VALLEY, Mo. - The library books on multiple births crowded the couple’s coffee table. The bedroom-turned-nursery awaited the arrival of six newborns.
But in the end, authorities say Sarah and Kris Everson never had the sextuplets as claimed. All they had was what appears to be a big lie.
The couple’s dramatic story had holes in it from the start - from their mysterious withholding of information for more than a month to the unanimous response of area hospitals that they hadn’t helped deliver the newborns.
On Tuesday, authorities said the mystery had been solved - the entire tale was deemed a hoax aimed at tapping the generosity of others to pay the couple’s mounting bills.
"I have never dealt with anything like this," Police Chief Aaron Ambrose said. "The level of fraud like this involving people, I have not."
Gary Bradley, the city administrator, said charges against the Eversons were forthcoming. Prosecutors had not yet determined how much the couple profited from the scam or whether they would qualify for charges beyond the municipal level.
The Eversons - Sarah, 45, and Kris, 33 - claimed to have given birth to four boys and two girls on March 8. The babies were apparently in intensive care.
The tale exploded in the local spotlight Monday when The Examiner in Independence ran on its front page a photograph of the couple holding six one-piece baby outfits and announcing the births.
Hours before admitting it was a scam, Sarah Everson showed an Associated Press reporter pictures of her in maternity clothes, her baring a huge pregnant-looking midsection, even sonogram images she claimed were of her infants. She showed off a tiny nursery, a closet full of baby clothes and the tiny diapers premature newborns must wear.
She said the entire story of her children’s births was being kept secret by a court order enacted because a member of her husband’s family was trying to kill the Eversons and their new sextuplets.
"I’m so afraid they’re not going to make it," she sobbed. "Nobody understands how hard this is. I know that they’re here. I know what I had to go through to get them here."
Sarah Everson said a detective begin questioning her Tuesday evening; Bradley and Ambrose said the Eversons were interviewed at the police station for about an hour, during which they revealed the story was a scam. They were released pending charges.
After the Examiner’s initial story, the AP did not publish a story or transmit photos about the sextuplets over concerns of accuracy.
Reached by phone late Tuesday, Sarah Everson offered no explanation. "I’m not talking to anybody right now," she said, "because nobody gets it."
The Web site soliciting gifts was taken down Tuesday night.
Examiner Editor Dale Brendel said he was considering a front-page column to readers addressing the issue. He said the incident would force a review of his reporters’ verification practices.
"I think that we fell victim to the hoax. There were people out in the community who were doing fund-raisers already, and we feel bad for them and for us that we were the victims of that," Brendel said. "In retrospect, there were things we could have done better from a newspaper standpoint, in terms of our investigations and trying to flesh out some of the red flags there were about the story."
Thursday, April 13, 2006
So todays little bit of excitement, to liven up a fairly boring day was a trip to A&E. To have this removed from the right nasal passage. We haven't been to A&E for a while to have things removed from body orifices. I guess Michael kinda figured it was time for another visit.
Not sure you wanna hear the wise cracks flying round the office DH works in!!
Monday, April 10, 2006
Saturday, April 08, 2006
Sunday, April 02, 2006
He was wonderful, he was really, really good, didn't take him long to learn Michael's name!! But he had Michael up helping him doing some magic.
The real magic............ the look on Michael's face! It was priceless!
Monday, March 27, 2006
Next was our appointment with the Resp, unfortunately since our appointment two months ago, things don't appear to have moved on much, there still has been no word or assessment done by Speech and Language, despite a referral 6 months ago. Unfortunately due to sickness, holidays and other commitments there has been no Radiology Meetings, so we still don't know if we are to get a repeat CT done. The videos I did of Michael sleeping have not as yet been looked at.
I did ask about the chest deformity, and was asked if anyone else within the family has a chest of that shape, when we answered no, we were advised that it is due to the level of damage within Michael's lungs. The scars on the lungs have pulled Michael's chest into this shape, I guess just one more outward sign of the turmoil within his lungs.
We did however come away with an appointment for a months time, and a pulsox monitor to wear for 24 hours. This will monitor Michael's saturation levels for 24 hours, and give them some idea of how Michael SAT's.
When Michael was younger we were always told his 02 (oxygen) saturation levels had to be above 95% and even now 6 years later, that level still sticks in my mind as being the level needed. So can you imagine the heart sink to realise that if we hit 95% we were doing well?!?! Michael sat mainly between 89% and 94%
I remember a couple of years ago taking Michael to see another Consultant who had his SAT's monitored, he was quite happy with Michael sat'ing at 89% because as he put it "he probably doesn't sat much higher than that anyway." I remember feeling quite indignant because Michael could sat at 97% with no problems, I remember thinking at the time, 'that is so wrong, how can you accept 89%?? why aren't you concerned?'
Now here I sit and it appears that 89 - 94 is 'normal' for my son, and I guess I'm the only one who is surprised by this.
I also know this is part of my ongoing battle; to let go of the expectations of the past.... I have to confess that his 02 needs are something that I have trouble letting go of, they are such a big part of his life and have been for so long, that magic figure of 95% still looms large!!
Sunday, March 26, 2006
March 26, 2006
Doctors call premature babies ‘bed blockers’
Sarah-Kate Templeton, Medical Correspondent.
PREMATURE babies who require months of expensive intensive care in neonatal units have been labelled “bed blockers” by one of Britain’s royal colleges of medicine.
The Royal College of Obstetricians and Gynaecologists (RCOG) says the huge efforts to save babies born under 25 weeks are hampering the treatment of other infants with a better chance of survival and a healthy life.
As the NHS faces an increasing financial crisis, with beds being closed and jobs axed, it says these very premature babies are “blocking” much-needed intensive care cots, sometimes forcing expectant mothers with potentially healthier babies to be transported by ambulance to other hospitals.
In a submission to a two-year inquiry into premature babies by the Nuffield Council on Bioethics, the college says: “Some weight should be given to the economic considerations as there is a real issue in neonatal units of ‘bed blocking’, whereby women have to be transferred in labour to other units, compromising both their and their babies’ care.”
The statement reflects a growing view among child specialists that babies born under 25 weeks should be denied intensive care and allowed to die.Next month the Royal College of Paediatrics and Child Health will debate a motion at its annual conference that it is “unethical” to provide intensive care routinely to babies born under 25 weeks. In practice, they would only be saved in exceptional circumstances.
It would shift Britain towards practice in Holland, the only European country that accepts such babies should die. One paediatrician opposing such a change described it as “involuntary euthanasia”. However, Susan Bewley, chairwoman of the ethics committee of the RCOG, said: “I would prefer that every baby could be treated, but we cannot get away from the fact resources are not endless.”
About 800 babies are born each year under 25 weeks. Medical advances mean about 39% of those born at 24 weeks now survive, and 17% of those at 23 weeks. A normal-term baby is born at 40 weeks.
The cost of treating very premature babies is high. A neonatal intensive care bed costs about £1,000 a day and very premature babies can require intensive care for four months.
Research to be presented at the Royal College of Paediatrics conference shows babies born at 25 weeks or under cost almost three times as much to educate by the time they reach the age of six as those born at full term — £9,500 a year compared with £3,900.
Professor Sir Alan Craft, president of the Royal College of Paediatrics, said: “Many paediatricians would be in favour of adopting the Dutch model of no active intervention for these very little babies. The vast majority of children born at this gestation who do survive have significant disabilities. There is a lifetime cost and that needs to be taken into the equation when society tries to decide whether it wants to intervene.”
Any change to a Dutch model would be opposed by parents such as those of Joey McCormick, born three weeks ago at 24 weeks’ gestation. Doctors say he has a 90% chance of living. His father Daniel McCormick, a chef from Norwich, said: “The doctors behind the proposals must regard Joey as a number and an expense, but to us he is our little boy.”
Joey’s doctor, Paul Clarke, a neonatologist, said: “To me it all sounds too much like attempts to bring in involuntary euthanasia at the opposite end of life.”
David Thomas, from Oxford, was born at 24 weeks, spent 4 months in hospital but now at two is healthy. His mother Michelle, a psychiatric nurse, said: “Not to have given David the right to life would have been unethical
Friday, March 24, 2006
Wednesday, March 22, 2006
We are so looking forward to the day when all this ends, when there is no more sickness, and the oxygen concentrator is returned. We were saying last night how we don't ever want to go back to the days that have gone before.
But it started me thinking, about how things have been, and the things we've not been able to do. Simple things that lots of families take for granted, such as being able to celebrate Christmas altogether as a family, or even being able to plan things for Christmas, like going to relatives, and winter birthdays, we have missed many of the things that families are supposed to be able to do together.
There are certain places that we know it is just impossible to take Michael too, such as museums, and aquariums. I tried, and it wasn't pretty!! Michael loved the aquarium, but he scared the fish silly! And yes we got told off, and told to control him, and stop him from banging on the fish tanks. So he ended up strapped in a pushchair, which then left him fighting and screaming round the aquarium.
Holidays abroad are just a complete no.....the thoughts of spending x number of hours on a plane with Michael, scares me silly. I don't think it would just be him that needed sedating!! It's not just that, but the extra cost of taking Michael, in insurance, and needing 02 etc puts holidays abroad way out of our budget.
We have however discovered that we can do theme parks, because Michael is registered disabled we can get passes to save us having to queue! But we learnt that lesson the hard way, after spending 5 hours wandering around because the queues were just too big for Michael, so we got more done after 5pm when everyone else went home.
On the way out the park we discovered a scheme for disabled persons, which most theme parks have, and would have saved us a lot of tears and a lot of trauma.............but left me with guilt.
Michael's disabilities are hidden disabilities, there is no obvious sign of a disability, so getting to the front of the queue means walking past all these people who have been waiting patiently for their turn, so do we go to the front or do we wait our turn with a flailing, screaming, wailing child??
The first appointment is with a Paediatric ENT and that is at the beginning of July, the second appointment is for the Dysphagia Clinic and is 3 weeks later. So we'll have two trips into London on the train, fortunatly they are both early afternoon appointments, but I'm thinking we'll still have one rush hour to deal with, as Michael doesn't do crowded commuter trains very well!
Last time we took him into London on the train, was for his Videofluroscopy, when we discovered that Michael has his swallow issues, and we bought nibbles from the concourse to eat on the train on the way home, and just as the train was pulling out of the station, Michael's gag reflex kicked in, got us some strange looks from the others on the train!!
But I'm looking forward to going and hopefully getting some answers as to what is going on with the snoring, SAT's dropping etc.....if its something and nothing and therefore can be forgotten about, or if it's just one more complication to add to the list!
Tuesday, March 21, 2006
Saturday, March 18, 2006
Sunday, March 12, 2006
So, what can I tell you?? Michael has been seen by the SALT, regarding his stammer/stutter or to give it it's correct title, Dysfluency!! So there you go another label to hang around Michael's neck!! The SALT who specialises in Dysfluency, is working with the SALT in school at the moment, and has given her some suggestions and ideas to work on to try to improve the stammer!! She's then due to see him again in about a weeks time, to see how things have improved. I have to admit things do seem to be slightly better, but oh boy when he gets stuck, he really gets stuck!
When I spoke to the SALT at school I asked if she'd received a request for a feeding study, from the Resp, that was sent 6 months ago......guess what??? She hasn't.................
She has now though, because I sent her a copy of the letter!
We still don't as yet have a date for surgery, but we did get a letter to say we are on the waiting list, I guess I should ring to find out how long the waiting list is!!!! (I just haven't got around to doing that yet!!) Because then at least we'll know what the chances are of him getting to the top of the list, in the middle of some of the things DH has planned for this year!
Michael is also going to be taking part in some research into the long term effects of Retinopathy of Prematurity, or ROP as it's known around these parts! ROP is a condition which affects the eye development in premature babies, and means the blood vessels grow in places they wouldn't normally grow in the eyes of term babies. Michael had Grade 3, stage 3 ROP and narrowly avoided needing lazer surgery. Anyhow we have been asked if Michael could be tested as part of this research, so we have agreed, and once he's had this done it will then be appointment with the Resp on the same day! Last resp appointment was awful, so DH is coming with me, hopefully he will be able to keep Michael under control while I talk with the Doctor!
We also received a letter in the post from hospital z, remember my post about going all the way round the houses in order to be seen in the hospital we wanted to go to?? Well the Paed has referred him to hospital Z, which is a children's hospital so therefore has Paediatric ENT's. So I received a copy of the referral to the ENT dept, but as yet haven't heard anything from them.
We also received a form to fill in, for the Dysphagia Clinic, at the same Children's hospital. So I shall be posting that tomorrow, not sure how long it will take for the appointment to come through.
We're having a bit of a weight issue at the moment, and this is probably going to seem silly, but weight gain has always been a major issue with Michael, he just didn't gain weight....even with a g-peg he still didn't gain weight. Until about a year ago, when he suddenly started to put weight on, which is awesome as far as we're concerned, mind you he was on major calorie intake!!!
So the dietician, concerned that he was putting on too much weight, changed the calorie value of his formula, and since she did that Michael has been losing half a pound a month. At the moment it feels like we are undoing all that hard work to get weight on him. I'm not happy, but I seem to be the only one who's concerned about it!
Oh and to top it all off, with the weight loss seems to have come this!
Tuesday, February 14, 2006
There are too many questions and not enough answers in this research, for example, what do they consider independant living??? How much support is needed, to make that living independant??? If it's with support, is it ever truly independant?? Is living in a care home, consider independant living?? Is attending Day Care classed as continuing education??
Many children with disabilities walk away from school with 'qualifications', but they won't be on the same level as you or I have. Any qualifications they may gain, will not equip them for a job where they demand A & O' levels. There are so many career paths out there that just are not available to people with disabilities, too many predjudices and too many people willing to take advantage of those less fortunate than themselves.
I know deep down that my son will never live independantly, not without a huge amount of support. That may be independant from me, but it isn't truly independant, as most of us would see it.
ELBW babies/adults, what gestations are we talking about here?? How many of these ELBW babies are the micro-preemies that they are able to save today, babies who in reality are far more fragile than a lot of the babies they were saving 20 years ago.
To me there are so many things within this research that may bring false hope to parents of premature infants. Too many questions that need answering before I start jumping up and down.
It's only when questioned deeper that you realise this research is not as positive as it would first seem. For those of us with preemies with disabilities as a result of their premature birth, they are not going to awake on the morning of their 21st birthday and find they have "recovered" just as we didn't on their second.
Traditionally, educational attainment, getting a job, living independently,
getting married, and parenthood have been considered as markers of successful transition
To describe and compare the achievement and the age at attainment of
the above markers between extremely low-birth-weight (ELBW) and normal birthweight
(NBW) young adults.
Design, Setting, and Participants
A prospective, longitudinal, population-based study in central-west Ontario, Canada, of 166 ELBW participants who weighed 501 to 1000 g at birth (1977-1982) and 145 sociodemographically comparable NBW participants assessed at young adulthood (22-25 years).
Interviewers masked to participant status administered validated questionnaires via face-to-face interviews between January 1, 2002, and April 30, 2004.
Measures Markers of successful transition to adulthood, including
educational attainment, student and/or worker role, independent living, getting married, and parenthood.
At young adulthood, 149 (90%) of 166 ELBW participants and 133 (92%)
of 145 NBW participants completed the assessments at mean (SD) age of 23.3 (1.2)
years and 23.6 (1.1) years, respectively.
We included participants with neurosensory impairments (ELBW vs NBW: 40 [27%] vs 3 [2%]) and 7 proxy respondents. The proportion who graduated from high school was similar (82% vs 87%, P=.21). Overall, no statistically significant differences were observed in the education achieved to date.
A substantial proportion of both groups were still pursuing postsecondary education
(47 [32%] vs 44 [33%]).
No significant differences were observed in employment/school status; 71 (48%) ELBW vs 76 (57%) NBW young adults were permanently employed
In a subanalysis, a higher proportion of ELBW young adults were neither
employed nor in school (39 [26%] vs 20 [15%], P=.02 by Holm’s correction); these differences did not persist when participants with disabilities were excluded.
No significant differences were found in the proportion living independently (63 [42%]
vs 70 [53%], P=.19), married/cohabitating (34 [23%] vs 33 [25%], P=.69), or who
were parents (16 [11%] vs 19 [14%], P=.36).
The age at attainment of the above markers was similar for both cohorts.
Our study results indicate that a significant majority of former ELBW infants have overcome their earlier difficulties to become functional young adults.
JAMA. 2006;295:667-675 www.jama.com
Sunday, February 12, 2006
Boy was I wrong.........I have slept pretty much solidly since Friday, I am awake now, but my entire body hurts.
So it is now half term, the children have a week off from school, be interesting to see if they come down with it during the holidays or as they are all due to go back to school.
We are supposed to be going to Grandma-with-the-white-hair's house tomorrow!! Let's hope we're all well enought to go, cos I know one little boy who is going to be very unhappy if we can't go!
Thursday, February 09, 2006
Basically this means waiting x number of months for an appointment with ENT here,
to then be told we can't do this, we will refer to Y,
so then we wait x number of months for an appointment there,
When we could have all been saved a load of hassle, by being referred to Y in the first place.
Can someone please tell me where the best interests of the patient comes into this game??
Monday, February 06, 2006
I've been to bed, and as soon as I laid down my head filled with all these things I suddenly needed to think about, like Mic-Key buttons that may or may not be too small.
I'm sitting here with Hot Chocolate, thinking I need to go back to bed, I know I have to get up soon, because children need to go to school!!! But as soon as I lay down my head fills with all this useless information and my brain is running!
Sunday, February 05, 2006
Michael developed a stutter/stammer which was around for a little while and then seemed to vanish almost as quickly as it appeared. We were put in touch with the "stutter" Speech and Language Therapist, who sent us some information on stuttering, and I have to admit we never went to see her, because the problem seemed to have cleared itself up.
Well, the Stutter is back, and back with a vengence. I have to say it's actually been quite painful listening to Michael trying to make himself understood. So tomorrow I will be ringing the SALT to see if we can meet to discuss this.
If your interested in seeing what I mean, then click here
Thursday, February 02, 2006
I have to confess to being really confused now, the first night we did, when I put Michael onto the SAT's monitor he was sitting at 89% and the desire to put him into 02 there and then was immense, but I restrained myself thinking we needed a clear picture of just what was going on.
He did not have a good night, when I printed it off Tuesday morning his average was 90% with 20% of the night sat's in the 70's and 80's.
So we tried again Tuesday night, I sat watching him for a while, just to see what was happening with his numbers...he was sitting quite happily at 95% which was wonderful, and then he started dropping his numbers, finally settling on 82% before he picked himself back up to 95% He did this half a dozen times before picking himself up and sitting at 95%.
When I printed it off Wednesday he had an average of 95%, with a small percentage down into the 80's.
So we did it again last night, just to see, again when he went on the machine, he wasn't snoring and his sat's were sitting at 95% and this morning that was his average, with a small percentage of drops into the 80's.
So, now I am totally confused, was Monday just a bad night???? But what about the dips in his SAT's into the 80's on Tuesday and Wednesday night.....is this normal?? Do we all do this normally as part of our sleep pattern??
But going on Tuesday and Wednesday nights readings maybe his snoring isn't affecting his sleep that much, but then why does he look so tired right now, and why am I having to peel him from between his sheets in the mornings??
Confused.......?? Me too???
Wednesday, February 01, 2006
What is retinopathy of prematurity?
Retinopathy of prematurity (ROP) is a potentially blinding eye disorder that primarily affects premature infants weighing about 2¾ pounds (1250 grams) or less that are born before 31 weeks of gestation (A full-term pregnancy has a gestation of 38–42 weeks). The smaller a baby is at birth, the more likely that baby is to develop ROP. This disorder—which usually develops in both eyes—is one of the most common causes of visual loss in childhood and can lead to lifelong vision impairment and blindness.
Michael had Grade 111, ROP, and narrowly avoided lazer treatment for it, however this morning a letter dropped through the door asking if we would take part in some research on the affects of ROP in Premature infants.
As you can imagine we have said yes!
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)