There are time where you just wish to curl up in a ball and not have to face the world as it is. Life as a family has been exstreamly tough all round
In Feb we went into crisis. With the help of social services and a great social worker we are just about managing to get back on our feet 4 months later. Its a long and hard road we have ahead but we are strong!
So the results of Ollie barium swallow/meal show like said previous a lot of reflux. In fact the boy is refluxing almost 24/7! It thankfully also shows that his swallow although a little immature still is safe which was our main concern. We are still seeing a large number of paroxysmal episode though his pead is not too concerned about those even though we are.
A lot of new developments over the past few months.
Ollie is doing fantastically well at preschool. His work with PECs is coming of great so much so he is now started working on 'social stories' This is a set of picture cards set out to tell Ollie what activities are being done now and next to help him cope with the change. His eye contact and speech is just amazing now Though alot of words are still very hard to understand.
Unfortunately not everything is so good.
Ollie mobility has slowly gotten worse. We had seen his pead but to be honest i really didnt want to ask the question. The physios last report mentioned the deterioration and Hemiplegia but Ollie pead didn't think this was correct as 'it' is effecting both sides and that as 'it' evolves they can treat the effects.
So slightly long story short we had another appt to see the pead where Ollie was diagnosed officially with Spastic Diplegic Cerebral Palsy. Although this is non degenerative but the effects of it are causing issues for Ollie. As he grows his muscles seems to be getting tighter but his core still remain weak so is becoming very unstable at times on his feet
The physio as well as more exercises is looking to see if a lycra suite will help support him. His boot as ever are still a problem and even with the new insole his feet are still collapsing but she is still reluctant to put him into AFO's at the moment.
The pead is looking into his Old MRI report and questioning if it need repeating now he is older.
We seems to be quite lucky that we have a great deal of support for Ollie and it doesn't matter what is put in front of him, he still manages to charm the pants of everyone he meets
In Feb we went into crisis. With the help of social services and a great social worker we are just about managing to get back on our feet 4 months later. Its a long and hard road we have ahead but we are strong!
So the results of Ollie barium swallow/meal show like said previous a lot of reflux. In fact the boy is refluxing almost 24/7! It thankfully also shows that his swallow although a little immature still is safe which was our main concern. We are still seeing a large number of paroxysmal episode though his pead is not too concerned about those even though we are.
A lot of new developments over the past few months.
Ollie is doing fantastically well at preschool. His work with PECs is coming of great so much so he is now started working on 'social stories' This is a set of picture cards set out to tell Ollie what activities are being done now and next to help him cope with the change. His eye contact and speech is just amazing now Though alot of words are still very hard to understand.
Unfortunately not everything is so good.
Ollie mobility has slowly gotten worse. We had seen his pead but to be honest i really didnt want to ask the question. The physios last report mentioned the deterioration and Hemiplegia but Ollie pead didn't think this was correct as 'it' is effecting both sides and that as 'it' evolves they can treat the effects.
So slightly long story short we had another appt to see the pead where Ollie was diagnosed officially with Spastic Diplegic Cerebral Palsy. Although this is non degenerative but the effects of it are causing issues for Ollie. As he grows his muscles seems to be getting tighter but his core still remain weak so is becoming very unstable at times on his feet
The physio as well as more exercises is looking to see if a lycra suite will help support him. His boot as ever are still a problem and even with the new insole his feet are still collapsing but she is still reluctant to put him into AFO's at the moment.
The pead is looking into his Old MRI report and questioning if it need repeating now he is older.
We seems to be quite lucky that we have a great deal of support for Ollie and it doesn't matter what is put in front of him, he still manages to charm the pants of everyone he meets