8 weeks and counting!

Hiya,

Just a quick one to update on a few things. Firstly, Patrick is now 8 weeks seizure free! He has the odd vacant episode and the odd twitch but that may be the drugs. We're seeing his new Neuro on Monday to get his EEG results and discuss his medication, Patrick is overly sedated at the moment, the combination of drugs really knocks him out, he often sleeps all morning until 1-2pm so we're really keen to get that sorted as it has a negative effect on his development.

I saw his speech and language therapist a couple of weeks ago, she watched him drinking from various different cups and with his syringe and she's concerned that he may be having problems swallowing. This could answer a lot of questions about why he keeps getting chest infections, if he's not swallowing properly any liquid can go straight into his lungs causing him problems. Anyway, he's booked in for a videofluoroscopy next Friday which is a special xray that will show exactly what happens when he drinks and eats. If it proves that he's not swallowing properly he may end up having a 'button' fitted which is basically a tube that goes straight into his tummy. This would be a last resort and we're hoping it wont come to that as I can't help thinking it would be a step back but if needs must... In the meantime we've been advised to give him thickened liquids in a special cup that makes it easier and less messy for him.

I took Patrick for an eye test at Southampton hospital last Thursday, because he's on Vigabatrin which can cause sight problems he has to be regularly tested. It turns out he has a slight squint and is slightly longsighted in his right eye. Bless him, as if he isn't cute enough already he now has to wear glasses! Hopefully as his sight is still developing, wearing glasses now will correct his vision and he may not have to wear them long term, we'll have to see how he gets on. I'm not sure how well he's gonna cope with glasses, he's likely to have problems keeping them on and I don't think he's going to like them but we'll give them a go. He has a spot of eczema behind his left ear so that might flare up with the glasses rubbing, as if he doesn't have enough to deal with! Anyway, he'll get his cute little Mr Bump glasses in about a week so I'll post a photo when he's got them.

We have a busy week next week, Neuro on Monday, Oxford on Wednesday, videofluoroscopy Friday so I'll have lots to update after all that.

On another note, on 29th March I'm going to be abseiling down the Water Tower in Poole raising money for Julia's House, the hospice Patrick goes to for pre-school sessions and toddler group. It's a fantastic charity that really does a lot for all of us so if you could please take a look at my Justgiving site and sponsor me I would be really grateful. If I don't reach my £100 target I can't do the abseil and I'm really looking forward to the challenge. PLEASE SPONSOR ME HERE.

Thanks for all your continued support and interest in our precious little boy.