Some good news to start this page off, we haven't been in hospital at all, so far this winter.
Michael did spend 3 weeks back in Oxygen before Christmas, because of a viral infection....BUT we've coped at home.
So this year we've had both Michael's birthday and Christmas at home!! I can't tell you how good that feels!!
I can't believe my little man is now 6, where does the time go??
Michael is enjoying school, he's moved from the Autism base and is now part of the main school, he is in a class with 8 other children, and doing well.
School run a Saturday club alternate Saturdays which he goes to, and really enjoys.
Some things around here never change though, Michael still has his thing for removing his clothes, as soon has he gets home from school.
But he has developed a sense of imagination - see my video page.
Tests and other things!
During the summer I noticed that Michael, has had certain *parts* of a little boys anatomy missing. Eventually we managed to get an appointment with our GP to ask for a referral.
When we went to see his Community Paed, I mentioned this and the fact that Michael snores very loudly at night, (this had been pointed out by my Mum who'd had to share a room with him.) Anyway the Community Paed, backed up the referral from the GP to see a Paediatric Surgeon. She has also asked for a referral to Ear Nose and Throat regarding the snoring, and also mentioned this to Michael's resp and requested a Sleep Study.
So we are currently awaiting a double Orchidopexy - to have his bits dropped back where they should be!
We're also at the moment waiting for a monitor for Michael to wear for 16 hours including night time to see how Michael's sat's are whilst he sleeps! But one things for sure, he doesn't half make some strange noises whilst he's asleep!!
Apparently children with Michael's swallow issues can have something called Obstructive Sleep Apnea.
We are back in 02 at 6, as a result of the overnight SAT's monitoring, it appears that Michael doesn't hold his SAT's during his sleep, which means that his SAT's are dropping lower than is seen as acceptable....so 02 is now our friend again.
We have an appointment for July to see the Paediatric Ear Nose and Throat Dr, we also have an appointment to see the Neurologist for July too, so we have some busy months coming up!
Ear Nose And Throat Consultant
We went to see ENT, who is a lovely Dr, we were advised that Michael has adenotonsillar hypertrophy, and the Dr recommended removal of both tonsils and adenoids. Although there are no guarantee's that this will improve things for Michael at night, because of his swallow problems and the hypotonia in his throat muscles - we live in hope that it will. So we are currently awaiting a date for Adenoid and Tonsil removal!
Dysphagia Clinic.
Two days before surgery we also saw the Dysphagia Team regarding the risk of aspiration and the possibility of another Video-fluroscopy for Michael...so something else we are awaiting a date for. It has been suggested that this wait until 3 months after Michael's tonsils and adenoids are removed. Removal of those will not alter the lack of swallow reflex, but will give another base line to work from. There were some questions raised in clinic as to his aspiration - not sure we're out of the woods on that one!
But the Neurologist in clinic was really impressed about how alert and with it Michael was in clinic - he made her laugh when he asked her if the (younger) Dr with her in Clinic, was her Daddy!!
July 2006.
Double Orchidopexy Surgery and Hernia Repair.
Done and can we say !!!OUCH!!! Believe me when I say it's not pretty!!
Michael's bits were caught up in the scar tissue from his hernia repair surgery, which meant that they had to be *dug out* from within. Apparently they are smaller than those of a full-term child his age, but premature baby boy's are smaller - we learn something new everyday!!
There are no guarantee's that they will work when he grows up, he could be sterile.....want me to be honest that question never entered my head about if they would work or not! He's my baby, him being an adult seems so far away.
Remember I said Mr Tumble was one of Michael's all time favourite hero's?? Well at Easter Michael and his classmates were taken to Wimpole Hall Farm and filmed for the series. I've uploaded the clip to Michael's Video page
They appeared in the Episode all about Spring.
Imagine my delight on seeing Michael go Baa!
(its at the bottom of my video page)
You know I am so disorganised it's scary. I have a frightening looking pile of letters, reports and notes on Michael that desperatly need to be filed, and the information I'm looking for in order to write this I cannot find, so if I get this wrong - no on second thoughts I won't use medical terminology for the tests Michael underwent until I find the reports.
We got some really good news a couple of weeks ago, following on from the overnight sleep study/Saturation monitoring some questions were raised with regard to Michael's heart rate becoming tachycardic, so about a month ago, we had an appointment with the Cardiologist and the wonderful news is that there is no sign of Pulmonary Hypertension. We are so pleased about this.
If you don't know what Pulmonary Hypertension is, then please let me explain, from what I understand it is a thickening in the right side of the heart, due to the pressures that the heart is having to work at. So as you can imagine we were really pleased to be given the all clear.
Taken age 6 years and almost 11 months!
The over-night SAT's readings that Michael has had done have apparently shown that there is no obstructive sleep apnoea. So his tonsil and adenoid surgery was cancelled/postponed until further notice.
Unfortunately this now leaves the question, why is Michael dropping his SAT's whilst he's sleeping?
In order to answer that question, at least in part, Michael will (hopefully) be having full lung function testing done in December. I say hopefully because it involves being in an enclosed space, and at the moment we're not sure if he will cope with this.
There seems to be some concern that Michael's lungs have not developed in the way that they should have done; which means a limited increase in lung capacity.
Michael's story featured in a book published recently:
Baby at Risk:-
Baby at Risk explores the growing phenomenon of "miracle" births and infants born with major medical problems that threaten or impair their health for life. The book examines the new assisted-reproduction technologies that are producing their share of miracle babies---but also a burgeoning population of imperiled newborns. Then there are the neonatal intensive care rescues that keep extremely premature and critically ill babies alive---some to live healthy lives, but others to face a bleak lifetime during which their families must care for them.
Baby at Risk asks some very hard questions: whether some high-tech rescues serve the best interests of babies, their families, and the wider social good---or are they just satisfying the contemporary and ever-increasing Western passion for using expensive technologies? And, who are the key people who should be making decisions about imperiled newborns? Like the Terry Schiavo debate, these issues affect not only the patients, their families, and health workers, but also the government, media, and society at large.
Through extensive interviews with parents and medical and nursing staff, and an exploration of ethical principles that guide deliberations about medical decisions, Baby at Risk examines the dilemmas that at-risk babies raise, considers the responses of those who care for and about babies, and proposes strategies for more effective and balanced decision-making in the uncertain world of imperiled newborns.
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