I haven't updated for a while......I think it's about time I did.
Let's start with some good news. Michael was an Angel in his school Nativity, which was wonderful to see, and ok, it brought tears to my eyes. We spent ages working on his lines with him, and he said them beautifully, but only so as The Virgin Mary could hear him.
Michael has also stayed well over the Christmas Period and remained at home which was wonderful. He is back in 02 at night, but at least he's home and not in the hospital, I cannot describe how wonderful it was to wake on Christmas morning and have all my children there, opening their Christmas presants, being together as a complete family and not having one member missing.
As for other things, we have a new Developmental Paediatrician, as Michael is now in a school for Children with Special Needs, she is the Consultant attached to the school.
I think she and I are going to get on well. On our first meeting she stated that her intention is to pull everyone together, to make sure that some-one is in charge of Michael's case. Making sure that everyone knows what everyone else is doing and why.
I have already recieved a copy of her first report and in it she has requested information from everyone involved in Michael's life from the Opthamologist to the Dieticians. It is so nice after all this time to know where to go when I need something. We have not had this up until now.......there have been so many Consultants involved all with their own area of specialism and no-one with over all control.
Diagnosis & presenting difficulties
Learning Disability:-
generally, cognition appears within the moderate range
Severe speech and language disorder
Difficulties with attention and listening
Autistic Spectrum Disorder
Behavioural Difficulties
Feeding and Dysphagia swallowing disorder
penetration of thin liquids - risk of aspiration
Fatigability
Selective eater
Pockets food or spits it out
Chronic Lung disease of Prematurity
Pectus carinatum with intercostal flaring
Recurrent lower resp tract infections
Intermittent 02 dependency
Reflux
Bi-lateral ROP
ASD & Pulmonary stenosis
That's a long list, and I know it like the back of my hand the difficulties that Michael faces, but it is never easy when you see them written down like this.
We've also been to the Dentist in London too, Michael seems to have been fairly lucky and avoided some of the fairly common preemie teeth problems, so far.....but he does have some wear on his teeth, I wonder where that comes from??
Eating too many non-edible materials perhaps!
MRI -
We had EEG facial muscle testing and an MRI up in London. Michael has some subtle changes in his brain, and has lost some of the white matter around the ends of his ventricles.
But I guess the thing that threw us most is the Facial Muscle Testing. This showed that there is a real problem in the nerves, and damage to the area that controls swallowing. Michael now has a new diagnosis, one of Bulbar Palsy.
Please come and meet my son's hero.
Justin, Thank You for Mr Tumble.
Click on the picture, to take you there.
Michael loves it.
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