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Sorry it's been a while since the last post, the last few weeks have been pretty hectic, nice hectic though I'm pleased to say. The weekend before last we had a visit from Martin's sisters, Mary and Angela and Martin's nephew Dan and his gorgeous daughter Honey. The weather was fabulous so we made good use of it and had a day out at the local food festival followed by fish and chips on the beach, good old fashioned family time, lovely. We were also able to set up Patrick's new 'Waterway' pool in the garden for the first time. It took him a few minutes to get over the initial shock of being plunged in the water on his own but then he seemed to relax and just laid back and floated in the water, pushing himself off the side every so often. The pool is supposed to help him build up his muscles and encourage movement, I think if he uses it regularly enough it should work but unfortunately he's been full of a cold since that weekend so we've not put him in it again yet.
Patrick had another good physio session last Thursday, he saw his physio and OT who are both pleased with his progress. They said that his sitting position is good and he's showing much more potential than they had previously thought he might. However, they are worried about his elbows as they are really tight and need a lot of work to loosen them up; we have to stretch his arms right out several times a day which is quite uncomfortable for him but if we can't improve them with the exercises he may end up needing splints which wouldn't be nice. Patrick has now been given a standing frame to use at home. They have managed to hunt out one that can be folded away which is better as we are so limited on space at home. He should be using the frame for about an hour a day, at the moment he manages about 20 mins before getting the hump so we'll build him up to an hour over time. We had a visit from Anne, Patrick's new social services OT, yesterday who has had to close his file for now because although she could get us extra equipment for Patrick, we just don't have the space to accommodate any more.
Patrick had another good physio session last Thursday, he saw his physio and OT who are both pleased with his progress. They said that his sitting position is good and he's showing much more potential than they had previously thought he might. However, they are worried about his elbows as they are really tight and need a lot of work to loosen them up; we have to stretch his arms right out several times a day which is quite uncomfortable for him but if we can't improve them with the exercises he may end up needing splints which wouldn't be nice. Patrick has now been given a standing frame to use at home. They have managed to hunt out one that can be folded away which is better as we are so limited on space at home. He should be using the frame for about an hour a day, at the moment he manages about 20 mins before getting the hump so we'll build him up to an hour over time. We had a visit from Anne, Patrick's new social services OT, yesterday who has had to close his file for now because although she could get us extra equipment for Patrick, we just don't have the space to accommodate any more.
The weekend just gone was an extra special one as we went to Warwick for my Dad and Allison's wedding. We made a weekend of it and went up on the Friday. It was a bit of a nightmare with everything we had to take; we took Patrick's Bee chair and his pushchair and he had one little suitcase just for his meds! Anyone seeing us arrive would have thought we were there for the week! Anyway, we had an amazing weekend, the wedding was fabulous and both Patrick and Isaac were on best behaviour - Isaac was a ring bearer with his cousin Owen and they did a smashing job. The only downside to the whole weekend was the fact that due to his cough and teething Patrick's epilepsy was quite bad, during the wedding service he actually had a seizure that lasted 10 mins, so we were a little on edge the rest of the day but he was OK.
On the Sunday after the wedding we went to visit our friends Karen and Gordon who only live about 30 mins from Warwick. They have just built their son Luke a little sensory room so Patrick was able to try it out which was great.
This week has been fairly quiet so far, Patrick was supposed to have his chicken pox vaccine on Monday but because his chest is still bad they wont do it so we've re-scheduled for next Thursday. We have Martins Dad coming down tomorrow for a few days, it's half term next week, we've not got anything planned but hopefully the weather will stay nice and we'll be able to give Patrick's new buggy a good run out (we should be picking it up this Friday). We are going to visit Naomi House next Friday as we finally got the news that Patrick has been accepted by them. We get 14 days pro-rata to use over the course of the year, Naomi house is in Winchester and does overnight respite care where we can leave Patrick in a room with the carers while we have use of a family room upstairs so it's not like we're leaving him completely and at least we might finally be able to get a couple of nights sleep. I'll let you know more after we've been there.
Anyway, I think that's about it for now, sorry it's been a long post.
Hope everyone is well and thank you all for your continued support and good wishes.
Lots of Love xxx
1 comment:
Enjoy Naomi House, it's been a godsend to us over the past few years.
Bev (NFWFC)
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