We were at the hospital 3 times in the last fortnight. Ezekiel's hip ultrasound went really well. His shallow hip socket has sorted itself so no need for treatment. Malachi has new piedro boots on order.
Isaac had his eye appointment last week. His operation in June wasn't successful, probably due to his hypermobility so he needs more surgery in October. Until then he has to wear an eye patch for 3 hours a day.
The bathroom is finally finished. We have a shower that works and a toilet that doesn't leak! Next job - fixing the guttering.
Ezekiel currently weighs 4.7kg which is about 10lb 5oz. We are currently feeding him every 3 hours, which usually involves waking him up to feed and him taking a long time to finish the bottle. This usually means I have about an hour to get some housework done and play with Malachi before it's time to express and feed again. I am going to the baby clinic to get him weighed now which is good in a way as I can go when it suits me which doesn't happen so much with home visits. On the downside we often end up seeing a health visitor who doesn't know Ezekiel and who tries to make "helpful" suggestions when I hadn't actually asked a question.
Although we've had a lot of comments from adults about Ezekiel's lip, some positive, others not so much, children seem to not notice, or not comment anyway. One of the children In Isaac's class was talking about it yesterday at the end of school and Isaac's friend interrupted him saying "but he's cute and we love him". Sums it up perfectly and made me smile.
Lastly I haven't got a date for Ezekiel's first operation. I'm trying not to think about it which isn't helped by people constantly asking.
Showing posts with label piedro boots. Show all posts
Showing posts with label piedro boots. Show all posts
Tuesday, 24 September 2013
Tuesday, 4 September 2012
Orthotics, a party, EDS awareness and going back to school
It's been a very busy 2 days for us. Yesterday Isaac had his orthotics appointment. We were late because the bus driver refused to let us on because there was a buggy in the wheelchair space. Don't get me started on that. The orthopaedic surgeon has decided that piedro boots aren't giving him enough support so he needs inserts in his piedro boots. When he does pe at school the teaching assistant will take the inserts out of his piedro boots and put them in his plimsoles.
On our way out Jeremiah noticed a sign about a party and free cake. It was the hospital's 70th birthday and there were lots of 1940's themed stuff going on. A journalist came and interviewed Isaac and Jeremiah and took photos. http://www.tauntonpeople.co.uk/Musgrove-Park-Hospital-throws-40s-themed-birthday/story-16813667-detail/story.html - this is the story. http://www.tauntonpeople.co.uk/pictures/Musgrove-Park-Hospital-Taunton-70th-birthday-bash/pictures-16813628-detail/pictures.html - these are the pictures.
Maddy's campaign has spread further. She won the Pride of Australia award and appeared on television as well. http://au.news.yahoo.com/today-tonight/health/article/-/14753623/maddisons-disease. She asks that everyone google Ehlers Danlos syndrome and read about it for 5 minutes.
Today both the big boys went to school. Malachi and I were nearly late, thanks to the bus, but we got there on time. Jeremiah went in without a backward glance and Isaac had to be prized off my leg. He had a good day though, he is absolutely shattered now. Pictures tomorrow hopefully.
On our way out Jeremiah noticed a sign about a party and free cake. It was the hospital's 70th birthday and there were lots of 1940's themed stuff going on. A journalist came and interviewed Isaac and Jeremiah and took photos. http://www.tauntonpeople.co.uk/Musgrove-Park-Hospital-throws-40s-themed-birthday/story-16813667-detail/story.html - this is the story. http://www.tauntonpeople.co.uk/pictures/Musgrove-Park-Hospital-Taunton-70th-birthday-bash/pictures-16813628-detail/pictures.html - these are the pictures.
Maddy's campaign has spread further. She won the Pride of Australia award and appeared on television as well. http://au.news.yahoo.com/today-tonight/health/article/-/14753623/maddisons-disease. She asks that everyone google Ehlers Danlos syndrome and read about it for 5 minutes.
Today both the big boys went to school. Malachi and I were nearly late, thanks to the bus, but we got there on time. Jeremiah went in without a backward glance and Isaac had to be prized off my leg. He had a good day though, he is absolutely shattered now. Pictures tomorrow hopefully.
Monday, 23 July 2012
Malachi's orthotic appointment
Jeremiah and Isaac are away on their holidays so it was just me and Malachi at the hospital this morning. The good news is that they now do piedro boots small enough for Malachi's feet. The bad news is the tiniest ones look like the shoes you hire when you go bowling. Hopefully it won't be long before his feet are big enough for the boots like Isaac has which look a lot nicer I think. I also took the opportunity to take some photos of the old building before it gets knocked down. I have fond memories of pacing up and down the corridors there while in early labour with Malachi.
Friday, 11 May 2012
Malachi and physio
Malachi had his physio session on Wednesday. We nearly didn't make it thanks to the bus we needed to catch being a double decker. The physio was really pleased with his progress and thinks he will be walking in the summer. I sometimes feel that I don't take Malachi's issues seriously enough because he is not as bad as Isaac so it was good to know that he really was doing well and it wasn't just me thinking that. He is into everything at the moment, trying to nose dive off the changing mat and will crawl towards an open stairgate at the speed of light.
The physio wants Malachi to have piedro boots but his feet are so tiny they don't make them small enough. He is being referred to orthotics anyway to see if they can suggest anything. She also remembered Isaac which I thought was impressive seeing as she last saw Isaac at 5 months old. She said nobody could forget Isaac but I'm not sure if that's a good thing or not!
Isaac has a GP appointment next week to be referred to the orthopaedic team to sort out shoes for him to wear for PE at school. Then occupational therapy to measure him for a chair. Jeremiah is doing well. They had a supply teacher yesterday who brought his guitar which was very popular with the class. Even the little girl who has autism and doesn't do change well really liked him.
The physio wants Malachi to have piedro boots but his feet are so tiny they don't make them small enough. He is being referred to orthotics anyway to see if they can suggest anything. She also remembered Isaac which I thought was impressive seeing as she last saw Isaac at 5 months old. She said nobody could forget Isaac but I'm not sure if that's a good thing or not!
Isaac has a GP appointment next week to be referred to the orthopaedic team to sort out shoes for him to wear for PE at school. Then occupational therapy to measure him for a chair. Jeremiah is doing well. They had a supply teacher yesterday who brought his guitar which was very popular with the class. Even the little girl who has autism and doesn't do change well really liked him.
Tuesday, 28 February 2012
busy days
Yesterday Isaac had his feet measured and he needs the next size up piedro boots. I had a scary conversation with someone who's child has hypermobility about as severely as Isaac. Her son dislocates his joints which Isaac doesn't and I thought he wouldn't do but she told me that her son wasn't dislocating at Isaac's age, he started at 5 years old. There are times like this when I feel scared for his future. Then today a lady came to the breastfeeding group with her 2nd baby who had been going when Isaac was tiny. She asked how Isaac was, if he still had his feeding tube? He has come a long way in his short life.
Isaac had his assessment by the lady from the PIM's team (Physical Impairment Medical I think) at preschool. I stayed and watched. There wasn't any difference physically between him and the youngest children and he walked up the steps to the slide which he doesn't normally do at home. He went to sleep for 2 hours leaving me wondering how he will cope with a full day at school and if not how will I cope with walking into wellington and back 3 times a day.
Malachi was weighed today and had lost a tiny bit from last weigh in but gained from the last weigh in on those scales at that time of day. I suggested that I increase Malachi's infatrini again but the community nurse was reluctant to suggest that without approval from a paed so I have increased the infatrini back to 2 bottles a day and I need to phone Nicola tomorrow to tell her. We seem to have developed a pattern of Malachi gains weight, infatrini gets dropped/reduced, Malachi loses weight, infatrini increased over and over again. This time I will keep him on the increased dose for longer. For those who are interested Malachi now weighs 7.34kg which is 18lb 3oz if I remember rightly.
Isaac had his assessment by the lady from the PIM's team (Physical Impairment Medical I think) at preschool. I stayed and watched. There wasn't any difference physically between him and the youngest children and he walked up the steps to the slide which he doesn't normally do at home. He went to sleep for 2 hours leaving me wondering how he will cope with a full day at school and if not how will I cope with walking into wellington and back 3 times a day.
Malachi was weighed today and had lost a tiny bit from last weigh in but gained from the last weigh in on those scales at that time of day. I suggested that I increase Malachi's infatrini again but the community nurse was reluctant to suggest that without approval from a paed so I have increased the infatrini back to 2 bottles a day and I need to phone Nicola tomorrow to tell her. We seem to have developed a pattern of Malachi gains weight, infatrini gets dropped/reduced, Malachi loses weight, infatrini increased over and over again. This time I will keep him on the increased dose for longer. For those who are interested Malachi now weighs 7.34kg which is 18lb 3oz if I remember rightly.
Wednesday, 2 November 2011
Lots of little things
This week has been really busy with lots of little things. Isaac's new piedro boots have come. Not red ones like we ordered but he likes them anyway. I have been chasing up my blood test and getting nowhere. Malachi and I have been allowed back to the breastfeeding group where there were 3 other mums and a very sheepish looking health visitor! I have made lentil and bacon soup. Isaac has been going to preschool. Jeremiah has been building things out of lego. Lots of little things
Monday, 24 October 2011
Photo of Malachi
My gorgeous littlest one
I can't work out how to turn the photo round.
Half term holiday this week. Isaac is absolutely shattered. He refused to walk for most of the day on Friday. It's been a long half term for him. He could really do with this holiday and some new piedro boots too. The piedro boots have been measured for and ordered so hopefully it won't be too long. I've got my blood test this afternoon, hopefully they get it this time.
Half term holiday this week. Isaac is absolutely shattered. He refused to walk for most of the day on Friday. It's been a long half term for him. He could really do with this holiday and some new piedro boots too. The piedro boots have been measured for and ordered so hopefully it won't be too long. I've got my blood test this afternoon, hopefully they get it this time.
Subscribe to:
Posts (Atom)