Lucas has seemingly been better for the last few days, though we do now have a date for his GOSH admission. Should be there for 3 or 4 days in a couple of weeks. Bloods every two hours for 4 days. Great.
School have been a bit slack - we have been asking frequently for over a year for Lucas to get suitable Maths games, which his peers get every week, to be sent home. It's happened once so far (in his last IEP there was mention of his Maths skills not keeping up with his literacy skills. Hmmm). We have a home/school book which we are going to highlight every day until we get something for him!
Friday 26 September 2008
Monday 22 September 2008
Day to Day
Lucas was back at school today. When asked about how his day was, he responds with the immortal, "yeah, it was fine" and provides scant details!
He was working on numeracy, which means I'm going to have to work harder and start actually working on my Braille Maths! I'm leaving reading and contractions to Sarah for the moment - I'm reasonably good at reading Braille but as Lucas is learning his contractions it's getting trickier!
Lucas is really quick on his Mountbatten. I really don't know why people bother with Perkins anymore - it's not as if they are cheap! It's like sighted kids being provided with a 19th century typewriter instead of a computer nowadays. If only the RNIB would start buying in bulk to bring the price down. I feel a campaign coming on!
He was working on numeracy, which means I'm going to have to work harder and start actually working on my Braille Maths! I'm leaving reading and contractions to Sarah for the moment - I'm reasonably good at reading Braille but as Lucas is learning his contractions it's getting trickier!
Lucas is really quick on his Mountbatten. I really don't know why people bother with Perkins anymore - it's not as if they are cheap! It's like sighted kids being provided with a 19th century typewriter instead of a computer nowadays. If only the RNIB would start buying in bulk to bring the price down. I feel a campaign coming on!
Sunday 21 September 2008
Daily Medication
To give an insight into Lucas' life, here is a list of his daily medication:
- 8am - 5mg Hydrocortisone
- 8am - 50mcg Thyroxine
- 12pm - 2.5mg Hydrocortisone
- 5pm - 2.5mg Hydrocortisone
- 8pm - 4mg Melatonin
- 8pm - 50mg Growth Hormone (intra-muscular injection)
- 11pm - 2mg Melatonin
- 11pm - 2.5mg Hydrocortisone
DI
Lucas is still having issues with water so Diabetes Insipidus is still on the cards - it is a possibility we understand that this could link into his episodes. We are still waiting to speak to GOS about inputs and outputs and are going to have an admission to get his bloods checked. If we can avoid this one I will be happy as the medication counteracts the cortisol replacement. That's not going to be easy to manage.
Weekend
It was Grammy's birthday on Saturday so we went into town to get her a present. We then took her to Corfe Castle to have a nice cream tea!
Lucas went and investigated the bridge to the castle and was able to practice his click. He didn't spot the barrier and gave his head a bit of a knock - it's all part of the learning process of self directed discovery (or that 's what I keep having to tell myself - it's good for him in the long run!).
Civil war re-inactment was going on so we tried to grab someone with a musket to try and explain what the explosions were all about but alas, we missed them.
We then got stuck in traffic for an hour waiting for the ferry! Grammy had a nice time.
Lucas went and investigated the bridge to the castle and was able to practice his click. He didn't spot the barrier and gave his head a bit of a knock - it's all part of the learning process of self directed discovery (or that 's what I keep having to tell myself - it's good for him in the long run!).
Civil war re-inactment was going on so we tried to grab someone with a musket to try and explain what the explosions were all about but alas, we missed them.
We then got stuck in traffic for an hour waiting for the ferry! Grammy had a nice time.
Saturday
Looking back at the summer holiday we have been pleasantly surprised by the amount of stuff we managed to pack in!
Lucas did:
Lucas did:
- Climbing on an indoor wall
- Sailing (with Grandpop in a Wayfarer)
- Kayaking
- Steam Train x 2!
- Met David James at Julia's House
- Played football
- Trampolining
Saturday 20 September 2008
Ongoing
Complicated just became a little bit of an understatement.
Lucas has been having strange episodes, which leave him disorientated and emotional. We took him into Poole hospital and we have had a EEG on for 48 hours. We believed that he had another episode, but the result showed no abnormal brain activity, but did show seizures from when he went to sleep to when he woke up.
Looking for one thing and discovered another; not only do we still not know what is causing the episodes but we now need to find out what impact the night long seizures are having on him.
Lucas has been having strange episodes, which leave him disorientated and emotional. We took him into Poole hospital and we have had a EEG on for 48 hours. We believed that he had another episode, but the result showed no abnormal brain activity, but did show seizures from when he went to sleep to when he woke up.
Looking for one thing and discovered another; not only do we still not know what is causing the episodes but we now need to find out what impact the night long seizures are having on him.
Wednesday 17 September 2008
Intro
Lucas is 6 years old. He has Septo-Optic-Dysplasia, Bi-Lateral Optic-Nerve-Hypoplasia, Unilateral Retinal Aplasia, Tetralogy of Fallots (repaired Nov 2002) and a few other things we are not sure of!
I'm his Dad and I'm very proud of him. I feel he is and can be an inspiration and want to share some of the details of his life, from how he deals with the medical aspects of his life, and how he (and we - his parents) deal with blindness. We feel that blindness can be reduced to a physical inconvenience (see National Federation OF the Blind) and have adopted the "No Limits" approach to mobility (see World Access for the Blind) as we feel it is our job as parents to give our son the best chances in life.
He uses a proper long cane (i.e. not a symbol cane - or "Chocolate Teapot" cane I prefer to regard it as) at the age of six and has done since the age of three. We wish we had introduced it earlier. He used passive and advanced Echolocation to assist him get about, but most importantly, he learns through "Self Directed Discovery" - so definitely no sighted guide as this serves no real purpose in most cases other than to help the guide. He is learning true independence, mostly in part to the help from Daniel Kish and his colleague Brian Bushway.
I'm his Dad and I'm very proud of him. I feel he is and can be an inspiration and want to share some of the details of his life, from how he deals with the medical aspects of his life, and how he (and we - his parents) deal with blindness. We feel that blindness can be reduced to a physical inconvenience (see National Federation OF the Blind) and have adopted the "No Limits" approach to mobility (see World Access for the Blind) as we feel it is our job as parents to give our son the best chances in life.
He uses a proper long cane (i.e. not a symbol cane - or "Chocolate Teapot" cane I prefer to regard it as) at the age of six and has done since the age of three. We wish we had introduced it earlier. He used passive and advanced Echolocation to assist him get about, but most importantly, he learns through "Self Directed Discovery" - so definitely no sighted guide as this serves no real purpose in most cases other than to help the guide. He is learning true independence, mostly in part to the help from Daniel Kish and his colleague Brian Bushway.
Subscribe to:
Posts (Atom)