Day 3 of therapy and by my calculations Ava has had the equivalent of 6 weeks worth of therapy back home. I already see a difference in her muscle definition of her legs. She slept 12hrs straight last night which is unheard of. Ava is certainly working hard. This morning she was in the prone position on her tummy and after awhile rolled from that position onto her back!! Am still being cautious about having too high expectations but its looking positive so far.She was tired yesterday and had a massive paddy in the cage so they had to bring her out, she also pushed in two 20 min unscheduled naps!
The weather is just like back home although I believe you are all still having a heatwave. We arrived after a tropical storm and a new one has begun. Its been raining more or less since we got here. Good job we not on holiday lol. Hope it stops for the weekend because we have a sensory treat in store for Ava, we plan to take her on the fan boat on the everglades which are only an hour from us. She will love the wind and movement.
Where we live are loads of canals made to reclaim the land and the therapist was telling us that the alligators swim up them from the swamps and come into peoples gardens. Alligators are protected so you are not allowed to harm them at all!! We might drive to the west too on Alligator Alley it sounds very adventurous and exciting.
I drove in Florida for the first time today. It was hard not to move my left foot but other than that it was pretty easy. Don't think I would like the interstate like. Its mad on there, every lane seems to be a fast lane and trucks are made to ride in the middle lane!!!! Think I will leave those drives for Mark.
Strange being without Ava, its my first day not in therapy with Ava and we are hauled up in the apartment with the rain. Going to make the tea and do the laundry with the Molster. We have done the food shopping and swung by the 7eleven on the way home- a fast food junkies heaven. I really like their vanilla coffee mmmm.
Can't believe our first week is half over already, we will be home before we know it. Wish we could bring the therapists with us!!
Wednesday, 17 July 2013
Tuesday, 16 July 2013
A New Hope
Well we made it. 22hrs and 4300miles later we reached our new home for the next month. It wasn't without its problems though. Having rang BA to check that Ava's special dispensation for her medical equipment was in place and that we had special assistance at every airport and they knew the wheelchair was to be brought back to the aircraft door you would have thought tgey might mention that our flight had been moved to an earlier time to London - nope! Luckily Mark had checked so we rocked up at the airport earlier, good job we did. I have never seen Newcastle airport so busy at 4am. It took us an hour and a half to clear the bag drop and security. Once that was done we could relax a little. The flight to Miami passed quickly considering we onboard for 9hrs. Once at Miami it wasn't as bad as the media had made it out to be. We cleared customs in 40mins and got our bags straight away, however my heart sunk when the medical boxes failed to appear. 20 mins later we found the oversize area and to great relief there they were. Mark did really well to steer the tiny trolley which had 6 suitcases, 4 hand luggage, car seat and booster seat onboard. We had to get to the Mia mover, which was a really cool and easy accessed monorail that was to take us to the car rental pick up. We got into line again and an hour later and 32 % tax on top of what we had already paid (ouch) we emerged into the rainy Miami afternoon with our Dodge caravan. If this is on the mobility scheme we may very well consider getting it, as it is perfect for Ava's needs. A short 45min drive later and we arrived at our new home - 4340 Seagrape Drive, apartment 7, Lauderdake by the Sea, 33308. Its 2 blocks from the beach, has a pool right outside our door, has a massive cupboard for storage (bonus), is a 2 min drive or 20 min walk to the therapy centre. Which brings me nicely to the therapy.
I have to say, I am very excited to write about this. Ava's therapists are Paula and Rosanna. They will work with her every week day 1pm-5pm (6pm-10pm English time). The assessment was very thorough and as they assessed I asked questions and got very encouraging answers. I asked what they thought of her left side, for those of you who don't really know Ava, her left side can be very tight and although we have had no diagnosis of cerebral palsy it remains a possibility. I feel that it is hard to know if she does the tightness voluntarily or involuntarily. They said that it will be easier to tell after the month if she is doing it voluntarily or not but on first examination they felt it was a sensory issue and with stimulation the issue would improve and now was exactly the right time to intervene. Having worked with Ava for an hour, her therapist said to me that she questions Ava's blindness diagnosis. She said there was no way Ava is blind! Are you crying yet Marsha, cos I did. Tears of joy.
Ava did really well with the exercises, laughing and giggling quite a lot through it. Of course tears a bit later. They started to put the suit on and Ava fell a sleep. The Pediasuit is designed to support the body, stimulate muscle tone and provide deep pressure to stimulate and fire the brain. As the boss there said "This is not fairydust, we are restarting the brain and it works" Obviously individuals respond differently and at different rates. Some will make progress fast, some will be slower. Only time will tell how Ava responds. Within a few hours Ava had the Pedia suit on and walked with support from task to task. She sat on the ball and squeezed, they rocked her side to side, they put her on her tummy, they put her in the spider cage and did more exercise. She ran 10 marathons yesterday and is only 3 hrs from the next. I won't be allowed to sit in on anymore sessions now but will be in the next room. In the 4hrs of therapy i saw only 1 Tonic clinic seizure and 4 myclonic jerks, could the diet be working finally? Fingers crossed everyone. Oh and for those interested in the weather, we arrived after a tropical storm. Its hot but wet, like having a warm shower when we go out - this is better than the heat wave happening just north of Florida! Till the next time xx
I have to say, I am very excited to write about this. Ava's therapists are Paula and Rosanna. They will work with her every week day 1pm-5pm (6pm-10pm English time). The assessment was very thorough and as they assessed I asked questions and got very encouraging answers. I asked what they thought of her left side, for those of you who don't really know Ava, her left side can be very tight and although we have had no diagnosis of cerebral palsy it remains a possibility. I feel that it is hard to know if she does the tightness voluntarily or involuntarily. They said that it will be easier to tell after the month if she is doing it voluntarily or not but on first examination they felt it was a sensory issue and with stimulation the issue would improve and now was exactly the right time to intervene. Having worked with Ava for an hour, her therapist said to me that she questions Ava's blindness diagnosis. She said there was no way Ava is blind! Are you crying yet Marsha, cos I did. Tears of joy.
Ava did really well with the exercises, laughing and giggling quite a lot through it. Of course tears a bit later. They started to put the suit on and Ava fell a sleep. The Pediasuit is designed to support the body, stimulate muscle tone and provide deep pressure to stimulate and fire the brain. As the boss there said "This is not fairydust, we are restarting the brain and it works" Obviously individuals respond differently and at different rates. Some will make progress fast, some will be slower. Only time will tell how Ava responds. Within a few hours Ava had the Pedia suit on and walked with support from task to task. She sat on the ball and squeezed, they rocked her side to side, they put her on her tummy, they put her in the spider cage and did more exercise. She ran 10 marathons yesterday and is only 3 hrs from the next. I won't be allowed to sit in on anymore sessions now but will be in the next room. In the 4hrs of therapy i saw only 1 Tonic clinic seizure and 4 myclonic jerks, could the diet be working finally? Fingers crossed everyone. Oh and for those interested in the weather, we arrived after a tropical storm. Its hot but wet, like having a warm shower when we go out - this is better than the heat wave happening just north of Florida! Till the next time xx
Wednesday, 30 January 2013
Hope Floats
Well we did it. I first heard about the therapy on Surprise Surprise, we looked into the costs late January and have raised over £12,000 to get Ava to America for potential life changing therapy. http://www.therapies4kids.com/
Now this may sound strange but people have asked me what I expect from the therapy and I really don't expect anything. Maybe I am protecting myself from a potential great disappointment because really if I didn't think this would have a chance to work then I wouldn't have tried to do it. My daughter is such a gift to us and the world. She has made us into much better people, albeit much tireder people! Ava has multiple complex needs and everyday still manages a smile at some point in the day. A fellow Facebook friend, Samantha Kilgore, once commented that to see Ava smile makes you smile and she does joy better than anyone.
Can you see what she means?
The main demon we battle with daily is the Epilepsy. I truly believe that if we can wipe this out of Ava's life then she can get on with developing into a sitting, walking, talking little girl. As it is, Ava has upward of 40 myclonic jerks a day still and up to 4 Tonic clonics (which I am thinking have developed into sinister gelastic seizures http://en.wikipedia.org/wiki/Gelastic_seizure) This is a conversation I need to have with her consultant neurologist but as far as I believe, these are impossible to treat. We started the ketogenic diet (http://en.wikipedia.org/wiki/Ketogenic_diet) 2 months ago on a 3 month trial. The first month Ava's seizures became less forceful and a little less frequent - night seizures were noticeably reduced. However we went into month 2 and Ava's seizures morphed into the new seizures I mentioned above. The severity was enormous, needing rescue meds on quite a regular basis. Ava ended up in hospital with a chest infection and on co-amoxiclav which we now believe to have created the really strong gelastic type seizures. Epilepsy is a very complex condition and we never forget that it's one that can take our little girl at any time it likes. At present, with 3 days to go, EEEEK!, Ava has had 2 really good days of being alert, less frequent and less severe seizures. I am praying to God that this continues to last.
We are all packed ready to go, I have written the final thank you card and posted it today, I have a few calls to make, Ava gets her button changed tomorrow and I say my last few goodbyes to special friends and family who we certainly couldn't have achieved this without.
Just to finish off before we go a lovely friend, Helen MacGregor sent me this poem which sums the whole process up:
'Hope' is the thing with feathers,
That perches in the soul,
And sings the tune without the words,
And never stops - at all.
And sweetest in the Gale is heard,
And some must be the storm,
That could abash the little bird,
That kept so many warm.
I've heard it on the chillest land,
And on the strangest sea,
Yet never in extremity,
It asked a crumb-of me.
A huge thank you to everyone of you that has made our Hope shine ever brighter through having a little FAITH for Ava. Watch this space for video diaries, pictures and progress of Ava's next chapter in her Miracle journey.
Tuesday, 31 January 2012
Better Late than never
Almost a half a year since my last post! Deep breath and here we go.
A quick summary of Ava, she has grown very long and is above the 50th centile for length, her weight has stayed round the 9th and her head circumference I don’t dare check. She has been registered as severely visually impaired (blind) though I am not going to accept this yet as Ava decided to be uncooperative the whole time and it wasn't till we left the hospital that she opened her eyes and started smiling and giggling. She is very close to holding her head now so we are hopeful for some further developments in the future. Her hands are of interest too, we know she can't always see them but she knows they are there as she brings her mouth to them and chews - though her 5 teeth can catch herself! Movement is getting better, she can get herself in the most amazing positions in her cot but it has brought with it problems - her ng tube is constantly being pulled out and her face is covered in scratches :(. Ava goes into the RVI on Tuesday 7th Feb ready for her gastrostomy on the 8th. I am a little worried about the op but am so pleased to be getting that tube out. It has caused nothing but grief since it went down. Despite the tube she is getting on great with her solids, taking textured foods at reasonable quantities. I have asked to start her again with liquid by mouth but as is always the case we are being super careful and can only give her thickened liquid and another videofluroscopy will be arranged and not until after the op can I start giving liquids by mouth.
Ava turned 1 on the 19th November and had a lovely sensory and hydro experience with her pals from our groups we attend. We have both made good friends and I thank God for these groups cos then what would I do? Hospital visits have been thick and fast since October, in and out with bronchiolitis, chest infections, breathing difficulties. We were due to go to Malta on the Sunday, Ava was still on oxygen on the Wednesday and Molly had a cast on from breaking her wrist on a slide which was due to come off on the Friday!!! But we did get on our much needed holiday and both girls were superb on the plane and all the time really. The weather was great for most of the holiday but turned near the end and had us ready to come home before we were due. I met a wonderful person out there too - Eileen, she was having a much needed break as she is a full time carer for her daughter too. Within 5 mins we had struck up a new friendship which continues today.
Christmas was a lovely affair, hectic but really nice. Molly gave up her dummies to Santa, both girls got far too much as usual and we ate lots. Then the illnesses set in again. Ava started to get poorly after Boxing Day and we took her in to be checked on the 30th Dec. New Year’s night was dreadful, up all night screaming, most of New Year’s Day she slept but with very high 60's resps (breathes per minute). I took her back in New Year ’s Day and we got home on 7th Jan so that was a great start to the year. She needed oxygen and antibiotics. We have just finished a stint in hospital again, this time with gastroenteritis. Ava had screamed for 10 hours non-stop so I took her in again. We always seem to weather a lot of the problems at home then go in just as she peeks and turns a corner! Well this time everyone who was looking after Ava and us voiced their concerns about us (Mark and I). Having not slept for 5 nights straight you can only imagine the state I was in. It’s hard work. Ava is such a good baby when she is in good health (her other problems aside) but she is still hard work with the care she needs - she is like a 3 month old with her needs still but with lots of added complications. When she is poorly its intensive! All you want someone, anyone to do, is offer to look after her for an hour while you sleep but because of her epilepsy the offers are very few and far between when she is well; and non-existent when she is poorly. This makes me a little sad because she is just another baby. After this episode, respite care assessment team are being sent out, something I never thought I would have to use but we can't go on like this. We are exhausted.
Talking of respite and support, our charity is going really well. The last blog I posted was just before our ball. It took place at the Derwent Manor in Consett and we were even on Tyne Tees News! The ball raised £4500 before all the costs were taken out. We have since had another coffee morning and a Christmas fair the latter raising just over £900.Niamh's dad raised £400 from a back waxing and Ava's nursery have raised £1000 from a Christmas fair they held on her birthday :)
This has raised us to the ranks of a 'big charity' with over £10,000 raised for our activities, support group and respite care. When I finish this blog I will be completing our constitution and once that is sent off we can hopefully expect our chartered charity number 15days later. We have loads more events planned so check out our website to keep up www.seizetheday-smallsteps.webs.com
I have had loads of ups and downs since last blogging and really needed to blog on a number of occasions but I find my life just gets in the way. Am so busy but that could be one of the problems. New Year’s resolution, if I need to blog I will no matter what.
A quick summary of Ava, she has grown very long and is above the 50th centile for length, her weight has stayed round the 9th and her head circumference I don’t dare check. She has been registered as severely visually impaired (blind) though I am not going to accept this yet as Ava decided to be uncooperative the whole time and it wasn't till we left the hospital that she opened her eyes and started smiling and giggling. She is very close to holding her head now so we are hopeful for some further developments in the future. Her hands are of interest too, we know she can't always see them but she knows they are there as she brings her mouth to them and chews - though her 5 teeth can catch herself! Movement is getting better, she can get herself in the most amazing positions in her cot but it has brought with it problems - her ng tube is constantly being pulled out and her face is covered in scratches :(. Ava goes into the RVI on Tuesday 7th Feb ready for her gastrostomy on the 8th. I am a little worried about the op but am so pleased to be getting that tube out. It has caused nothing but grief since it went down. Despite the tube she is getting on great with her solids, taking textured foods at reasonable quantities. I have asked to start her again with liquid by mouth but as is always the case we are being super careful and can only give her thickened liquid and another videofluroscopy will be arranged and not until after the op can I start giving liquids by mouth.
Ava turned 1 on the 19th November and had a lovely sensory and hydro experience with her pals from our groups we attend. We have both made good friends and I thank God for these groups cos then what would I do? Hospital visits have been thick and fast since October, in and out with bronchiolitis, chest infections, breathing difficulties. We were due to go to Malta on the Sunday, Ava was still on oxygen on the Wednesday and Molly had a cast on from breaking her wrist on a slide which was due to come off on the Friday!!! But we did get on our much needed holiday and both girls were superb on the plane and all the time really. The weather was great for most of the holiday but turned near the end and had us ready to come home before we were due. I met a wonderful person out there too - Eileen, she was having a much needed break as she is a full time carer for her daughter too. Within 5 mins we had struck up a new friendship which continues today.
Christmas was a lovely affair, hectic but really nice. Molly gave up her dummies to Santa, both girls got far too much as usual and we ate lots. Then the illnesses set in again. Ava started to get poorly after Boxing Day and we took her in to be checked on the 30th Dec. New Year’s night was dreadful, up all night screaming, most of New Year’s Day she slept but with very high 60's resps (breathes per minute). I took her back in New Year ’s Day and we got home on 7th Jan so that was a great start to the year. She needed oxygen and antibiotics. We have just finished a stint in hospital again, this time with gastroenteritis. Ava had screamed for 10 hours non-stop so I took her in again. We always seem to weather a lot of the problems at home then go in just as she peeks and turns a corner! Well this time everyone who was looking after Ava and us voiced their concerns about us (Mark and I). Having not slept for 5 nights straight you can only imagine the state I was in. It’s hard work. Ava is such a good baby when she is in good health (her other problems aside) but she is still hard work with the care she needs - she is like a 3 month old with her needs still but with lots of added complications. When she is poorly its intensive! All you want someone, anyone to do, is offer to look after her for an hour while you sleep but because of her epilepsy the offers are very few and far between when she is well; and non-existent when she is poorly. This makes me a little sad because she is just another baby. After this episode, respite care assessment team are being sent out, something I never thought I would have to use but we can't go on like this. We are exhausted.
Talking of respite and support, our charity is going really well. The last blog I posted was just before our ball. It took place at the Derwent Manor in Consett and we were even on Tyne Tees News! The ball raised £4500 before all the costs were taken out. We have since had another coffee morning and a Christmas fair the latter raising just over £900.Niamh's dad raised £400 from a back waxing and Ava's nursery have raised £1000 from a Christmas fair they held on her birthday :)
This has raised us to the ranks of a 'big charity' with over £10,000 raised for our activities, support group and respite care. When I finish this blog I will be completing our constitution and once that is sent off we can hopefully expect our chartered charity number 15days later. We have loads more events planned so check out our website to keep up www.seizetheday-smallsteps.webs.com
I have had loads of ups and downs since last blogging and really needed to blog on a number of occasions but I find my life just gets in the way. Am so busy but that could be one of the problems. New Year’s resolution, if I need to blog I will no matter what.
Wednesday, 3 August 2011
Small Steps - Seize the Day
13lb 10oz, can see light, is aspirating - is not, is aspirating?????? Emergency medicine, emergency care plan, a ride in the ambulance, a 3rd birthday party, return to work, preparation for the lauch ball, registration as a charity and a radio interview --phew no wonder I haven't posted in a while.
In my last blog I spoke of wanting to set up a support group to help families in my situation and I have done just that. We are called Small Steps-Seize the day and are £280 off being able to register as an official charity :) My school have been ace - especially the pupils who all did a sponsored run in the rain and in fancy dress and raised £4125 for us. That was the most amazing support they could ever have given me and wow what a leaving present. I managed to go back to work in the last week but fast realised why I hadn't been able to work anymore. Ava took poorly on my penultimate day at work. I had a call from my mum - she is a nurse and wou;d never ring unless it was serious. Panic set in and here I was racing home because my little girl was doing a mega seizure. I got home and it had calmed right down and she had stopped. Mum and dad went home but were back 2 hours later when I had to call the ambulance. The paramedic arrived first and gave Ava oxygen then the ambulance arrived and we were zoomed to hospital - Ava's temp spiked at 40.1 in the ambulance and a crash team were there to meet us in A & E. If I hadn't been used to this life I would have been panicing. Ava had a seizure for 15minutes of the worst type. She stopped in the ambulance but continued to do smaller seizures on the way to hospital. they tried to get a line in her veins but she is a notoriously bad bleeder and instead was left with bruises in both arms and hands. Her temperature had steadied and she was able to stabilise - she looked like nothing had happened. We transferred up to Treetops for the night. Which brings me to the aspiration.
We were told at the videofluroscopy that Ava had not aspirated during her feed. Then we got a phonecall the next week saying she had aspirated but the radiologist felt she hadn't but speech and language felt she had!!! We are still waiting a month later for a second opinion on this issue. In the mean time I had to attend feeding clinic with Ava and it was decided that she wasn't gaining sufficient weight and that the nasal gastric tube had to go down. So whilst we were in hospital we had to stay in for a second night to have the tube down and be trained how to use it. On arriving at A & E Ava had a chest x ray which revealed some markings on her lungs but no worse than the previous x ray - but it did indicate she had aspirated at some point. Even more worringly she had a shadow on her heart and we had to go for a heart echo!! We were passed ourselves. When you are in the womb your heart doesnt need air it takes the oxygen from the blood flow so to allow this to happen there are two holes in your heart to allow the blood to bypass the lungs. When you are born these are meant to close up. Children have a hole in their heart when the holes fail to seal. Ava's heart I am pleased to say, is a happy healthy heart. Ours felt like it was breaking for that 36 hour wait for the echo!!
Ava has also seen the opthomologist. They have confirmed Ava can see light. That is excellent news because it gives us something to work with. They don't know what or how much she can see and probably won't know for years. It could be the medication stopping the messages, it could be her epilepsy stopping the messages it could be the severe damage to the visual cortex stopping the messages!!! We just don't know but our little girl knows who her mammy, daddy and sister are and we get tearful everytime she smiles or giggles. As long as I know she is happy I can cope.
Due to her mega seizure 2 weeks ago we now have emergency medicine to administer if she does it again.Quite a big thing because it could stop her breathing. lets hope we don't have to give her it!!!
All sorts set her off though - temp, infection, illness, toothache!!!!
The group has kept me busy fundraising and doing the paperwork for the registration of the charity. We can be accessed at http://www.seizetheday-smallsteps.webs.com/ and email us at seizetheday.smallsteps@yahoo.co.uk
I have been contacted by a lady in Sydney Australia who feels less alone now, a mum in Birmingham who is pleased she can share her experiences and contact others going through the same thing and have met a mum in Durham whose son has life limiting epilepsy. The fact we found each other has been a weight off all our shoulders. There are physically 3 mums in our group now - all with babies who are 8 months old. We were on BBC radio Newcastle with Jonathon Miles discussing the need for our group to support the families like us, you need someone going through it and you need someone fast to help you not to fall apart. Anti depressants, 12hours of counselling 8 hours of behaviour therapy and I am still not quite there. These families need our help desperately. I can not even begin to describe the sense of isolation and loneliness you feel in this situation. This is why finding Kate, Dawn, Rachel, Taxi and Emma has been so helpful for me and I would like to think finding Jude has helped them too.
The support keeps coming in. People are running the Liverpool marathon for us, a guy is cycling to France for us, people are collecting for us, my mum is having a coffee morning for us. Chester-le-Street businesses have given generously for our raffle and auction in September at the launch and fundraiser ball. People are just so generous and we can't thank them for their support enough. £220 more we can do it :)
I promise not to leave it so long this time.
In my last blog I spoke of wanting to set up a support group to help families in my situation and I have done just that. We are called Small Steps-Seize the day and are £280 off being able to register as an official charity :) My school have been ace - especially the pupils who all did a sponsored run in the rain and in fancy dress and raised £4125 for us. That was the most amazing support they could ever have given me and wow what a leaving present. I managed to go back to work in the last week but fast realised why I hadn't been able to work anymore. Ava took poorly on my penultimate day at work. I had a call from my mum - she is a nurse and wou;d never ring unless it was serious. Panic set in and here I was racing home because my little girl was doing a mega seizure. I got home and it had calmed right down and she had stopped. Mum and dad went home but were back 2 hours later when I had to call the ambulance. The paramedic arrived first and gave Ava oxygen then the ambulance arrived and we were zoomed to hospital - Ava's temp spiked at 40.1 in the ambulance and a crash team were there to meet us in A & E. If I hadn't been used to this life I would have been panicing. Ava had a seizure for 15minutes of the worst type. She stopped in the ambulance but continued to do smaller seizures on the way to hospital. they tried to get a line in her veins but she is a notoriously bad bleeder and instead was left with bruises in both arms and hands. Her temperature had steadied and she was able to stabilise - she looked like nothing had happened. We transferred up to Treetops for the night. Which brings me to the aspiration.
We were told at the videofluroscopy that Ava had not aspirated during her feed. Then we got a phonecall the next week saying she had aspirated but the radiologist felt she hadn't but speech and language felt she had!!! We are still waiting a month later for a second opinion on this issue. In the mean time I had to attend feeding clinic with Ava and it was decided that she wasn't gaining sufficient weight and that the nasal gastric tube had to go down. So whilst we were in hospital we had to stay in for a second night to have the tube down and be trained how to use it. On arriving at A & E Ava had a chest x ray which revealed some markings on her lungs but no worse than the previous x ray - but it did indicate she had aspirated at some point. Even more worringly she had a shadow on her heart and we had to go for a heart echo!! We were passed ourselves. When you are in the womb your heart doesnt need air it takes the oxygen from the blood flow so to allow this to happen there are two holes in your heart to allow the blood to bypass the lungs. When you are born these are meant to close up. Children have a hole in their heart when the holes fail to seal. Ava's heart I am pleased to say, is a happy healthy heart. Ours felt like it was breaking for that 36 hour wait for the echo!!
Ava has also seen the opthomologist. They have confirmed Ava can see light. That is excellent news because it gives us something to work with. They don't know what or how much she can see and probably won't know for years. It could be the medication stopping the messages, it could be her epilepsy stopping the messages it could be the severe damage to the visual cortex stopping the messages!!! We just don't know but our little girl knows who her mammy, daddy and sister are and we get tearful everytime she smiles or giggles. As long as I know she is happy I can cope.
Due to her mega seizure 2 weeks ago we now have emergency medicine to administer if she does it again.Quite a big thing because it could stop her breathing. lets hope we don't have to give her it!!!
All sorts set her off though - temp, infection, illness, toothache!!!!
The group has kept me busy fundraising and doing the paperwork for the registration of the charity. We can be accessed at http://www.seizetheday-smallsteps.webs.com/ and email us at seizetheday.smallsteps@yahoo.co.uk
I have been contacted by a lady in Sydney Australia who feels less alone now, a mum in Birmingham who is pleased she can share her experiences and contact others going through the same thing and have met a mum in Durham whose son has life limiting epilepsy. The fact we found each other has been a weight off all our shoulders. There are physically 3 mums in our group now - all with babies who are 8 months old. We were on BBC radio Newcastle with Jonathon Miles discussing the need for our group to support the families like us, you need someone going through it and you need someone fast to help you not to fall apart. Anti depressants, 12hours of counselling 8 hours of behaviour therapy and I am still not quite there. These families need our help desperately. I can not even begin to describe the sense of isolation and loneliness you feel in this situation. This is why finding Kate, Dawn, Rachel, Taxi and Emma has been so helpful for me and I would like to think finding Jude has helped them too.
The support keeps coming in. People are running the Liverpool marathon for us, a guy is cycling to France for us, people are collecting for us, my mum is having a coffee morning for us. Chester-le-Street businesses have given generously for our raffle and auction in September at the launch and fundraiser ball. People are just so generous and we can't thank them for their support enough. £220 more we can do it :)
I promise not to leave it so long this time.
Saturday, 28 May 2011
Reality Bites
It has been quite awhile since my last post. I apologise for the shortness of it but I really had nothing to write as I was so angry, devastated and shocked. After being told Ava was focusing it was a pretty hard punch to be told that all the support she was getting for her focusing was to be cancelled and a much more specialised team of sensory vision experts would be involved as they felt Ava's vision was poor at best, none existent at worst.The sympathetic rub on the back and look of pity made me realise that this was very serious now. So what did I do about it? I went out and got as many sensory toys as I could to help switch Ava's vision connections on. A slinky, a sensory spinning fan, black and white patterns, pictures of Ava's mum, dad and sister on her wall next to her cot, spinning mirrors, even my fingers wiggled in front of her eyes can help make new connections to replace the damaged ones. I also went onto the RNIB website looking for tips on how to help a blind baby develop. I printed the information off and gave it to all family who come in contact with Ava, I did this because I want to help her as much as possible and if she isn't blind she will still benefit. It was interesting reading and gave very practical advice on how to help her develop her sight through sounds, and things you wouldn't have thought of like telling her you are about to pick her up. Imagine you are asleep and all of a sudden you are whisked up in the air without warning - pretty scary.I also resolved to set up a support group for children with epilepsy and visual problems - a task I shall be asking you all for help with in the not too distant future. Any ideas or suggestions on fundraising, becoming a charity and setting up support groups will be gratefully recieved - email jude at jro_ling@yahoo.co.uk
A week later and the sensory lady came again as I had Ava on her side following the spinning LED fan, yes that's right I said following it. The relief in that experts face told me my little girl is not completely blind but it is a race against the clock now to try to get these connections switched on. I have trawled the internet looking for bright lights and sensory toys.A load of stuff is on its way. We have put a blackout blind up in her room so we can create a sensory type of room and have started going to sensory rooms and hydrotherapy pools at the weekend. I am joining the alansheareractivitycentre.com with my friend and planning a sensory garden for Ava, Molly and the family to enjoy. I hope to pick up some tips from the activity centre.
Ava has now been assessed by speech and language and it is thought she may be aspirating her food which means she is taking it down her trachea instead of her esophagus. We are awaiting a video barium x ray to show if this is the case but may have to wait up to 4 weeks to get it. She continues to follow the .4th centile for her weight and head size, and the 50th centile for her length. At 27 weeks she is 11lb 14oz - a weight gain of 5 oz since last week.
We took the girls to adventure valley on the 19th May for the last few hours of the day after yet another appointment. While we were there we met the new foal - Hope. He was born on Sun 10th April (Ava's christening day) and when he was 5 days old he had a mini stroke which left his head tilted to the side. The vets expect him to make a full recovery one day. As Ava was exactly 6 months that day we decided to adopt him for her and hope that they both continue to get well together.
I returned to work on Monday, probably not the greatest move of my life. I didn't realise how hard it was going to be to perform in front of 30 pupils 5 times in the day, pretending all was normal and well in my life. By Tuesday late morning I just broke down and had to be driven home, I had just had the news about Ava and her feeding that morning too. My councillor said to me on the Wednesday that I had hit rock bottom and the only way now is up. I really hope so. Unless you have been there it is hard to understand. I thought I was coping and I just got a reality check - I am so far from coping it is unreal! My friends told me they wanted me to tell them how I am feeling to help them understand a bit better, maybe one day I can but its too raw at the moment. It takes me all my strength to give a news flash and even then its days until I can get my head round some more bad news and share it with everyone. At the moment we are still in the middle of our marathon hurdle race, and here comes another hurdle to jump.
A week later and the sensory lady came again as I had Ava on her side following the spinning LED fan, yes that's right I said following it. The relief in that experts face told me my little girl is not completely blind but it is a race against the clock now to try to get these connections switched on. I have trawled the internet looking for bright lights and sensory toys.A load of stuff is on its way. We have put a blackout blind up in her room so we can create a sensory type of room and have started going to sensory rooms and hydrotherapy pools at the weekend. I am joining the alansheareractivitycentre.com with my friend and planning a sensory garden for Ava, Molly and the family to enjoy. I hope to pick up some tips from the activity centre.
Ava has now been assessed by speech and language and it is thought she may be aspirating her food which means she is taking it down her trachea instead of her esophagus. We are awaiting a video barium x ray to show if this is the case but may have to wait up to 4 weeks to get it. She continues to follow the .4th centile for her weight and head size, and the 50th centile for her length. At 27 weeks she is 11lb 14oz - a weight gain of 5 oz since last week.
We took the girls to adventure valley on the 19th May for the last few hours of the day after yet another appointment. While we were there we met the new foal - Hope. He was born on Sun 10th April (Ava's christening day) and when he was 5 days old he had a mini stroke which left his head tilted to the side. The vets expect him to make a full recovery one day. As Ava was exactly 6 months that day we decided to adopt him for her and hope that they both continue to get well together.
I returned to work on Monday, probably not the greatest move of my life. I didn't realise how hard it was going to be to perform in front of 30 pupils 5 times in the day, pretending all was normal and well in my life. By Tuesday late morning I just broke down and had to be driven home, I had just had the news about Ava and her feeding that morning too. My councillor said to me on the Wednesday that I had hit rock bottom and the only way now is up. I really hope so. Unless you have been there it is hard to understand. I thought I was coping and I just got a reality check - I am so far from coping it is unreal! My friends told me they wanted me to tell them how I am feeling to help them understand a bit better, maybe one day I can but its too raw at the moment. It takes me all my strength to give a news flash and even then its days until I can get my head round some more bad news and share it with everyone. At the moment we are still in the middle of our marathon hurdle race, and here comes another hurdle to jump.
Friday, 6 May 2011
Subscribe to:
Posts (Atom)