So, MJ started high school yesterday. I was a nervous wreck. I was also very proud of her achievement. A day we thought might never happen, but it has and I was so excited!!!
MJ is thoroughly enjoying school. It takes a lot out of her though. All the stimulation she has had over the last few days tires her out. As a result her head hurts and she doesn't sleep too well. But, I think by the end of the week, when all her mates are used to her being back at school, and things are calmer, she may fair a lot better.
The kids got told off today by a teacher who happend to be in the Base during break. One of MJ's friends told the teacher that they all had permission from Mrs Telgar to visit MJ. Needless to say that the teacher was not happy so I think visitors will be restricted now. I hope not, but hey, there always has to be one sour lemon.
All I can say is, guys, don't let her put you off. Your visits to MJ are a huge part of her rehabiltation and you are really helping her feel normal again. If she ever takes MJ for a lesson, maybe MJ should pretend to go to sleep like she used to do in the hospital, then the teacher can have something real to moan about...ha ha ha! I really shouldn't be so naughty should I???
So, MJ has been in the paper again and finally on Midlands today. I think the piece was filmed about a month ago, but at least others can look at her website now and maybe, just maybe, we'll get the council kick started to get those crossings in place before Cortni gets to year one. If nothing else, perhaps other parents who are facing a similar situation will take a look at MJ's webiste and have hope and inspiration to not give up.
I was giving Cortni a bath today, and she was feeling a little jealous of MJ being on the telly. She said "I wish I was McAyla and she was me". My heart broke. I told Cort not to think like that as she will do something truely amazing one day and she too will be on the telly. I think I have managed to restore Cortni's confidence and I hope she realises that she is special to me just as much as MJ and Ashley.
I'm shattered! Today, I feel like I have been through every emotion on the planet! In truth, I feel like that most days. Anyway, I guess I should try get some sleep.
Tuesday, February 24, 2009
Saturday, February 21, 2009
School
I'm sorry for not updating regularly, but things get a little hectic sometimes and I find myself running out of hours in the day. This entry is just to give that little more insight into MJ and to thank a range of people for all that they have done.
As far as MJ has come, she still struggles with following conversations, she struggles with attention and her short term memory is still an issue. She still goes through a range of emotions and sometimes overreacts to situations. How much of that is normal teenage girl stuff and how much of it is because of her injury...I don't know. I do know that I'm more protective of her now as would be expected. I still let her go out and hang with her mates, and I try to give her independence, but I'm also very aware that those that don't see MJ everyday don't fully understand what she's going through.
She is not always able to convey what she means in the right way. For example when she says she's special. Sometimes she's joking and sometimes she is being serious. I tell MJ that she is special. She is my daughter and is special to me. She is special because she has survived a very traumatic injury that should have killed her (and almost did). At the very least, it should have left her in a very worse state, but it hasn't and that makes her special. Sometimes, when she does daft things that make us laugh, we tell her she's a bit special, meaning she's daft. This is a family joke.
MJ lacks tact at the moment. What I mean is that she calls a spade a spade. If she's irritated, she'll tell you. She's not pretentious. If your hair is a mess, she'll say it in a way that will probably offend you. She doesn't mean it like that though. Obviously, if you do the same back, it hurts her too. An eye for an eye makes the whole world blind. We are open and upfront within our own home and we say things as we see them. McAyla just has to learn when it's appropriate. Imagine a child having a temper tantrum. Sometimes when we are angry, we'd like nothing more than to cry and scream and stamp our feet. We don't. We learn what is acceptable behaviour. McAyla has to re-learn appropriate behaviour too. Like with all children, it doesn't happen overnight, it will not happen overnight with MJ either.
I guess what I'm trying to say is have a little patience with MJ when you chat with her. Sometimes she's an 11 year old girl who's able to chat about fashion and boys etc and sometimes she's younger MJ trapped in her 11yr old body.
When I chat with her about the accident, sometimes she cries. Sometimes I cry. It's buried very close to the surface. She understands that our lives all changed and she understands how much we all love her and how close she came to dying. She cries when she thinks of the compassion her friends showed when she probably didn't even know who they were. I sometimes see tears in her eyes when she sees people with worse physical/learning difficulties than herself. She looks at her website and cries when she sees all of her photographs and reads the letters from all the people whose lives she has touched. I still cry when I read them.
So, MJ starts school on Monday. It's only for an hour, but at least it's a begining. Another landmark she has reached. I know MJ is a little scared and excited about starting high school. She's worried that her mates won't understand her disability and like any new kid, she's worried she won't fit in.
Needless to say, the thought of her in high school makes me proud, scared senseless, apprehensive and in general I feel like a nervouse wreck!!
She'll be picked up and dropped off by taxi. While it's great that MJ is now starting school, the physio sessions have moved to the afternoons. This is a problem as it's the school run time and Di won't be able to take MJ to physio anymore. I think we may have it covered with my father in law, but my mum in law is also very poorly most days and he is her carer and needs to look after her. It's another hurdle, but we'll get through it. I'm not letting it get me down as I know, one way or another, we'll manage. I just like to have the solution before the problems occur.
During the half term break MJ has tried trampolining again. She really enjoyed it, but hurt her ankle. Other than that, physio is going well, she's still enjoying hydro and this next week she'll be fitted for a new splint as she's quickly outgrowing the current one. She had a session with SLT and MJ was taught how to breathe when she speaks. MJ uses her shoulder to help draw in a deep breath as opposed to using her diaphram. Hence the whispering. We are still waiting for the results of the pshyc assessment.
Can I just add a huge thank you to Di Briggs for taking MJ to physio over the last few months. You have been fantastic and I am forever endebted to you.
Mrs Telgar at Nunnerywood High School for getting things in place so quickly when MJ was discharged from hospital. Also, thank you for understanding about MJ's shoe situation.
Mrs Hemmings for putting my mind at ease as to how and where MJ will start her school intergration.
Sarah Lane for getting the course work and teaching MJ at home.
Lynn Luchesse for understanding our needs as a family and for organising MJ's home schooling, re-intergration to school and the whole co-ordination of the different disciplines around MJ.
Nic B, Kim and Vicki and their families for being there with MJ when she couldn't communicate verbally, for including her in birthday parties, exercising with her and in general just making her feel normal. You have touched my soul with your kindness.
Dave's dad for helping out when we need you on short notice.
Ashley my beautiful grown up daughter things have been tough for you, but you have helped look after your sister and put your life on hold. I love you and I can never thank you enough. Thank you so much for doing all that you do.
Cortni my little baby for wanting to play with your sister, making sure she is safe even at your tender age and for giving MJ just that little bit of a hard time every now and then as sisters should.
Sam my 'adopted' daughter you too have been there for MJ, even before her accident. Thank you for being the shoulder for MJ to lean on when she cannot turn to others.
As far as MJ has come, she still struggles with following conversations, she struggles with attention and her short term memory is still an issue. She still goes through a range of emotions and sometimes overreacts to situations. How much of that is normal teenage girl stuff and how much of it is because of her injury...I don't know. I do know that I'm more protective of her now as would be expected. I still let her go out and hang with her mates, and I try to give her independence, but I'm also very aware that those that don't see MJ everyday don't fully understand what she's going through.
She is not always able to convey what she means in the right way. For example when she says she's special. Sometimes she's joking and sometimes she is being serious. I tell MJ that she is special. She is my daughter and is special to me. She is special because she has survived a very traumatic injury that should have killed her (and almost did). At the very least, it should have left her in a very worse state, but it hasn't and that makes her special. Sometimes, when she does daft things that make us laugh, we tell her she's a bit special, meaning she's daft. This is a family joke.
MJ lacks tact at the moment. What I mean is that she calls a spade a spade. If she's irritated, she'll tell you. She's not pretentious. If your hair is a mess, she'll say it in a way that will probably offend you. She doesn't mean it like that though. Obviously, if you do the same back, it hurts her too. An eye for an eye makes the whole world blind. We are open and upfront within our own home and we say things as we see them. McAyla just has to learn when it's appropriate. Imagine a child having a temper tantrum. Sometimes when we are angry, we'd like nothing more than to cry and scream and stamp our feet. We don't. We learn what is acceptable behaviour. McAyla has to re-learn appropriate behaviour too. Like with all children, it doesn't happen overnight, it will not happen overnight with MJ either.
I guess what I'm trying to say is have a little patience with MJ when you chat with her. Sometimes she's an 11 year old girl who's able to chat about fashion and boys etc and sometimes she's younger MJ trapped in her 11yr old body.
When I chat with her about the accident, sometimes she cries. Sometimes I cry. It's buried very close to the surface. She understands that our lives all changed and she understands how much we all love her and how close she came to dying. She cries when she thinks of the compassion her friends showed when she probably didn't even know who they were. I sometimes see tears in her eyes when she sees people with worse physical/learning difficulties than herself. She looks at her website and cries when she sees all of her photographs and reads the letters from all the people whose lives she has touched. I still cry when I read them.
So, MJ starts school on Monday. It's only for an hour, but at least it's a begining. Another landmark she has reached. I know MJ is a little scared and excited about starting high school. She's worried that her mates won't understand her disability and like any new kid, she's worried she won't fit in.
Needless to say, the thought of her in high school makes me proud, scared senseless, apprehensive and in general I feel like a nervouse wreck!!
She'll be picked up and dropped off by taxi. While it's great that MJ is now starting school, the physio sessions have moved to the afternoons. This is a problem as it's the school run time and Di won't be able to take MJ to physio anymore. I think we may have it covered with my father in law, but my mum in law is also very poorly most days and he is her carer and needs to look after her. It's another hurdle, but we'll get through it. I'm not letting it get me down as I know, one way or another, we'll manage. I just like to have the solution before the problems occur.
During the half term break MJ has tried trampolining again. She really enjoyed it, but hurt her ankle. Other than that, physio is going well, she's still enjoying hydro and this next week she'll be fitted for a new splint as she's quickly outgrowing the current one. She had a session with SLT and MJ was taught how to breathe when she speaks. MJ uses her shoulder to help draw in a deep breath as opposed to using her diaphram. Hence the whispering. We are still waiting for the results of the pshyc assessment.
Can I just add a huge thank you to Di Briggs for taking MJ to physio over the last few months. You have been fantastic and I am forever endebted to you.
Mrs Telgar at Nunnerywood High School for getting things in place so quickly when MJ was discharged from hospital. Also, thank you for understanding about MJ's shoe situation.
Mrs Hemmings for putting my mind at ease as to how and where MJ will start her school intergration.
Sarah Lane for getting the course work and teaching MJ at home.
Lynn Luchesse for understanding our needs as a family and for organising MJ's home schooling, re-intergration to school and the whole co-ordination of the different disciplines around MJ.
Nic B, Kim and Vicki and their families for being there with MJ when she couldn't communicate verbally, for including her in birthday parties, exercising with her and in general just making her feel normal. You have touched my soul with your kindness.
Dave's dad for helping out when we need you on short notice.
Ashley my beautiful grown up daughter things have been tough for you, but you have helped look after your sister and put your life on hold. I love you and I can never thank you enough. Thank you so much for doing all that you do.
Cortni my little baby for wanting to play with your sister, making sure she is safe even at your tender age and for giving MJ just that little bit of a hard time every now and then as sisters should.
Sam my 'adopted' daughter you too have been there for MJ, even before her accident. Thank you for being the shoulder for MJ to lean on when she cannot turn to others.
Tuesday, January 27, 2009
Hydrotherapy
Jeez, so much has happened and my head spins with the thought of all the stuff still going on. Since my last update, MJ has started hydrotherapy. It's fantastic to teach her balance and help restore those core muscles. These are her stomach and back muscles, which help keep you upright. When MJ laughs, she kinda falls forward, so I'm always grabbing on to her to make sure that she stays up. As you can imagine, she laughs quite a lot, so my fists are permanently clenched around whatever item of clothes she happens to be wearing. She thinks this is very amusing, as you can imagine, so we often have a laugh about her stability, or rather, lack of it.
Anyway, the pool is really warm, so she is only able to do a half hour, as it relaxes the muscles and takes the strain off of her legs. She was very tired after last weeks session, but is very excited about returning tomorrow.
I took her back to BCH on Monday for her psych assessment. For 2 hours they questioned MJ to test what she is able to recall and what level she is at. We have to return to get the results.
Last Thursday we were at BCH for MJ's eye test. This also took 2 hours. They did the normal eye test, then she did a field test. This test was to check her peripheral vision, so she had to spot where the light was, while staying focused on the hole in front. After that, they put drops in her eyes to dilate the pupils. This made her eyes sting and very sensitive to light. We then saw the consultant who advised that the optic nerve is still swollen and will still need to be monitored. I pray it comes right by the next visit in April/May.
After the consultant saw MJ, she advised that photo's of the inside of the eye would need to be taken. This is when things became interesting for me. The photo looks like a red planet and the bit they are concerned with is the white disc shape - the optic nerve. They explained that on a healthy eye, the outline of the disc is clearly visible. In MJ's eye, the bottom of the nerve is not clearly visible. They will send us a copy of the photo's so we can post it on the website.
SLT advise that MJ's voice might never return to normal as the vocal cords might have been damaged because of the ventilator and subsequent chest infection MJ had in ICU. The SLT is also going to investigate if MJ's taste buds are non existent - as in non-receptive to texture and taste - or if she has to have more therapy to learn to chew again. If MJ doesn't chew, the gums don't get the massage they require, thereby leaving the gum susceptible to disease and subsequently her teeth will fall out.
On the plus side, we went to Nunnery and visited the centre where MJ will be when she eventually returns to school. It's called the Base. There is disabled access to the base, so MJ doesn't have to negotiate the stairs, or the thousands of kids that go to the school, and her friends can get to have lunch with her in the base, so she doesn't have to fight her way through the cafeteria lines either. Also, they have fantastic facilities inside there, so MJ will get lots of support. I think she may get to type her work out rather than write, as the ability to hold a pen is still not easy for her. I'll be able to tell you more after the meeting we are having on Thursday, so watch this space for further updates.
Anyway, the pool is really warm, so she is only able to do a half hour, as it relaxes the muscles and takes the strain off of her legs. She was very tired after last weeks session, but is very excited about returning tomorrow.
I took her back to BCH on Monday for her psych assessment. For 2 hours they questioned MJ to test what she is able to recall and what level she is at. We have to return to get the results.
Last Thursday we were at BCH for MJ's eye test. This also took 2 hours. They did the normal eye test, then she did a field test. This test was to check her peripheral vision, so she had to spot where the light was, while staying focused on the hole in front. After that, they put drops in her eyes to dilate the pupils. This made her eyes sting and very sensitive to light. We then saw the consultant who advised that the optic nerve is still swollen and will still need to be monitored. I pray it comes right by the next visit in April/May.
After the consultant saw MJ, she advised that photo's of the inside of the eye would need to be taken. This is when things became interesting for me. The photo looks like a red planet and the bit they are concerned with is the white disc shape - the optic nerve. They explained that on a healthy eye, the outline of the disc is clearly visible. In MJ's eye, the bottom of the nerve is not clearly visible. They will send us a copy of the photo's so we can post it on the website.
SLT advise that MJ's voice might never return to normal as the vocal cords might have been damaged because of the ventilator and subsequent chest infection MJ had in ICU. The SLT is also going to investigate if MJ's taste buds are non existent - as in non-receptive to texture and taste - or if she has to have more therapy to learn to chew again. If MJ doesn't chew, the gums don't get the massage they require, thereby leaving the gum susceptible to disease and subsequently her teeth will fall out.
On the plus side, we went to Nunnery and visited the centre where MJ will be when she eventually returns to school. It's called the Base. There is disabled access to the base, so MJ doesn't have to negotiate the stairs, or the thousands of kids that go to the school, and her friends can get to have lunch with her in the base, so she doesn't have to fight her way through the cafeteria lines either. Also, they have fantastic facilities inside there, so MJ will get lots of support. I think she may get to type her work out rather than write, as the ability to hold a pen is still not easy for her. I'll be able to tell you more after the meeting we are having on Thursday, so watch this space for further updates.
Friday, January 16, 2009
Neuro visit
Today we got to see Mr Solanki and he was very impressed with MJ's progress. He showed us the 3 MRI scans taken of MJ during her stay at BCH. There was a lot of surface blood around the brain, particularly to the right side and back of her head. He couldn't show us the x-rays, as he didn't have them. He has given MJ a challenge. In 6 months time, he wants to see her again and has said he wants her to walk into his office without crutches.
He also told MJ that the headaches are normal, and we need not worry. He also said that the more she exercises, the more flexible she'll become, and the easier it'll be to move and walk.
Spoke with the physio today, and she said MJ will have to be fitted with a new splint, as her feet are growing and "Fred" is hurting MJ anyway. She's developed a corn (kind've like a hard blister) which will be sorted on Thursday.
Tomorrow we finally get our family portrait! Yeah!!! I can't wait to see the photo's. Wish I could have them all.
He also told MJ that the headaches are normal, and we need not worry. He also said that the more she exercises, the more flexible she'll become, and the easier it'll be to move and walk.
Spoke with the physio today, and she said MJ will have to be fitted with a new splint, as her feet are growing and "Fred" is hurting MJ anyway. She's developed a corn (kind've like a hard blister) which will be sorted on Thursday.
Tomorrow we finally get our family portrait! Yeah!!! I can't wait to see the photo's. Wish I could have them all.
Wednesday, January 14, 2009
MJ does a rolly-polly
I watched MJ do a rolly-polly today. She has been so determined to get her feet to touch the floor, over her head, which she has been able to do for about week now. Then, she was determined to get her knees to touch the floor, over her head...which she achieved today. As always, being the ever determined MJ, she performed a rolly polly. Still not content with this, she stood herself up, and decided to perform a rolly polly, from a standing position. Whatever next!?! It won't be long before she's performing cartwheels and hand stands.
So, we have been watching the BBC midlands today and Inside Out on BBC to see when MJ will finally be on the telly. She's so bored with watching the news now and as she says: I'm sick of being famous mum". That gold fish feeling is begining to set in I think....
When I'm at work, I constantly worry if MJ has slipped again, or if she has choked on food or drink, and most recently, her headaches seem to be getting worse. Thankfully we get to see the neurosurgeon on Friday, so I can discuss this with him. I know that Ash takes brilliant care of her sister, but I'm a mother first and formost and I will worry about all of my children all of the time. It's a life long deal I signed up for when I decided to be a parent.
McAyla's teacher did a reading and writing assessment on MJ and the report came back as 8.6. This means that MJ can read and write at the same level of a child who is 8 years and 6 months old. This may shock you, but in fact, it is brilliant news. So many people who have this type of injury never even get this skill back, let alone reach the level of an 8 year old.
Well, the next big event we will be looking forward to is the hydro-therapy. MJ can't wait to get in the pool. I think it will certainly help build up her muscles, without them suffering the fatigue they currently do in a normal physio session.
We had a bowling session with MJ's mate Kim and her family. Thanks guys for a brilliant day. Pity I got beat by Cortni...mmm perhaps I shouldn't advertise the fact that I got beat by a 5 year old...lol! Oh well, it was so much fun, and I was so proud of MJ for bowling the ball and getting the odd strike. So amazing! I can honestly say that since MJ's accident, this has to be one of the best day's I've had...we've had ... as a family.
So, we have been watching the BBC midlands today and Inside Out on BBC to see when MJ will finally be on the telly. She's so bored with watching the news now and as she says: I'm sick of being famous mum". That gold fish feeling is begining to set in I think....
When I'm at work, I constantly worry if MJ has slipped again, or if she has choked on food or drink, and most recently, her headaches seem to be getting worse. Thankfully we get to see the neurosurgeon on Friday, so I can discuss this with him. I know that Ash takes brilliant care of her sister, but I'm a mother first and formost and I will worry about all of my children all of the time. It's a life long deal I signed up for when I decided to be a parent.
McAyla's teacher did a reading and writing assessment on MJ and the report came back as 8.6. This means that MJ can read and write at the same level of a child who is 8 years and 6 months old. This may shock you, but in fact, it is brilliant news. So many people who have this type of injury never even get this skill back, let alone reach the level of an 8 year old.
Well, the next big event we will be looking forward to is the hydro-therapy. MJ can't wait to get in the pool. I think it will certainly help build up her muscles, without them suffering the fatigue they currently do in a normal physio session.
We had a bowling session with MJ's mate Kim and her family. Thanks guys for a brilliant day. Pity I got beat by Cortni...mmm perhaps I shouldn't advertise the fact that I got beat by a 5 year old...lol! Oh well, it was so much fun, and I was so proud of MJ for bowling the ball and getting the odd strike. So amazing! I can honestly say that since MJ's accident, this has to be one of the best day's I've had...we've had ... as a family.
Saturday, January 10, 2009
On TV
McAyla and Daz will be on the telly , BBC Midlands today, on Monday. They have filmed a bit as to where the accident happend and where the crossings are to be put in. They filmed the droves of children that come down this hazardous road everyday, and at least now, people may understand exactly why we need the crossing in the first place.
Cortni desperately wanted to be on the telly and is quite gutted that she is not on there. I've explained that she may well get her turn one day when she does something truely amazing. In the meantime, she is still the little star of the family and we love her as much as we love her sisters.
Tomorrow we are going to a photo shoot so that we may finally have that long awaited family portrait with ALL of us in the photo at the same time. It's one of those things I promised we would do as soon as MJ was able. I am looking forward to it.
Cortni desperately wanted to be on the telly and is quite gutted that she is not on there. I've explained that she may well get her turn one day when she does something truely amazing. In the meantime, she is still the little star of the family and we love her as much as we love her sisters.
Tomorrow we are going to a photo shoot so that we may finally have that long awaited family portrait with ALL of us in the photo at the same time. It's one of those things I promised we would do as soon as MJ was able. I am looking forward to it.
Wednesday, January 7, 2009
4 Months
So... 4 months ago this time, we were crying bucket loads for our little girl. Scared, very scared. 4 months on and I have to keep pinching myself that my little girl is still alive and is able to hug me and talk to me. It's the most amazing feeling in the world.
Yes, we have just barely begun our journey on the very long raod to recovery, but there are little improvements and moments that just make me laugh. I'm glad that MJ is able to laugh at herself and the situation we find ourselves in, and I believe that is what helps us through. She has always had the sunniest disposition, which is why people find it easy to talk with her. Sometimes, she has moments when her smile drops and a dark cloud seems to sit above her head, but I think that under the circumstances, it's acceptable. After all, don't we all have dark days?
So, we saw the pediatrition and the SLT. Whilst talking with the pedeatrition, I discovered that MJ has in fact got 4 fractures to the skull. I was of the impression that it was only 2/3. I am becoming more aware that as much information as I was getting in ICU, it was seriously censored. In a strange way, I'm comfortable with that, as I believe had I known, I might not have been as positive around MJ when she needed it most.
SLT have put my mind at rest with regard to Nunnery. She will get the support she needs and I'm sure that everything will be fine. MJ told the doc she doesn't want homework, and the doc told her not to panic, as dealing with being in school would be sufficient for a while.
So, MJ will have more assessments starting next week and more medical appointments, and maybe, we can get a copy of the x-ray of her head and put it on her webiste. Cool! I dunno about MJ, but I'm starting to feel a bit like a gold fish in a gold fish bowl!
Yes, we have just barely begun our journey on the very long raod to recovery, but there are little improvements and moments that just make me laugh. I'm glad that MJ is able to laugh at herself and the situation we find ourselves in, and I believe that is what helps us through. She has always had the sunniest disposition, which is why people find it easy to talk with her. Sometimes, she has moments when her smile drops and a dark cloud seems to sit above her head, but I think that under the circumstances, it's acceptable. After all, don't we all have dark days?
So, we saw the pediatrition and the SLT. Whilst talking with the pedeatrition, I discovered that MJ has in fact got 4 fractures to the skull. I was of the impression that it was only 2/3. I am becoming more aware that as much information as I was getting in ICU, it was seriously censored. In a strange way, I'm comfortable with that, as I believe had I known, I might not have been as positive around MJ when she needed it most.
SLT have put my mind at rest with regard to Nunnery. She will get the support she needs and I'm sure that everything will be fine. MJ told the doc she doesn't want homework, and the doc told her not to panic, as dealing with being in school would be sufficient for a while.
So, MJ will have more assessments starting next week and more medical appointments, and maybe, we can get a copy of the x-ray of her head and put it on her webiste. Cool! I dunno about MJ, but I'm starting to feel a bit like a gold fish in a gold fish bowl!
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