This website has been published to give others who may be in the same position a little bit of information and also a peep into our lives. The point is that you are not alone, every situation is different, and we all have different ways of dealing with things. This is our story:- Though my pregnancy was a hard one, all the normal scans took place without any inclination that anything was wrong with our baby and with a healthy first child we expected nothing different. When lexi was born i remember the midwife saying that everything was fine she had a small lump on her back but that there was nothing to worry about, i was happy to have a beautiful daughter. Even though we had a quew of paediatricians coming to see her, nothing was said and as i had the scan while pregnant it was the last thing i expected. Lexi had full leg movement but the doctors said they would like an MRI. At 2 weeks old she had her first MRI but as she kept moving it was very fuzzy, they could not tell us anything and we were sent down to Southampton Hospital for further investigation. We met her consultant whom without looking at anything but her back immediately said "she has Spina Bifida" (he thought we already knew). We were told that she had a lypomyelomeningocele. Through her first year of life she has been through problems not with the Lipoma but with the Haemangeoma that occurred directly over the Lipoma, it started to ulcerate and she had this for over 9 months. Our lives involved twice weekly visits to the hospital and nurses visiting the rest of the week. We exhausted the list of creams and started to search alternative treatment such as laser therapy, by tis time we had to travel to Great Ormond Street on a monthly basis also. I must admit that i took an aggressive approach to her care, ensuring i had all the information i required and that her treatment was given promptly, i have learnt 2 important things; 1 - Always trust your instincts 2- Fight to get information and answers from your doctors The amount of mistakes of not passing on test results, missing test results, appointments not being made, wrong information is endless, but they are only human and they will make mistakes and i had to ensure i chased everything. Lexi has had numerous and ongoing Uti's (urinary tract infections) and at 12 months was put on permanent Antibiotics, but this had not prevented them and so has to go on a stronger course when one creeps through. Things change daily and we have been told like many others to expect the worse as it is something that degrades over time, but we live each day in the now. Lexi has an excellent older brother who loves her to bits and she has inspired many with her constant smile and very cheeky character. The most important thing i can tell someone who is going through a similar situation is to NEVER blame yourself, unfortunately things can just happen and we may never know why, live in the now and do the best you can. --------------------------------------------------------------------------------------------------------------- As i am involved with raising funds for other children with Spina Bifida you can look at www.hampshireball.co.uk to see whats coming up and how you can help. |
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This website has been published to give others who may be in the same position a little bit of information and also a peep into our lives. The point is that you are not alone, every situation is different, and we all have different ways of dealing with things. This is our story:- Though my pregnancy was a hard one, all the normal scans took place without any inclination that anything was wrong with our baby and with a healthy first child we expected nothing different. When lexi was born i remember the midwife saying that everything was fine she had a small lump on her back but that there was nothing to worry about, i was happy to have a beautiful daughter. Even though we had a quew of paediatricians coming to see her, nothing was said and as i had the scan while pregnant it was the last thing i expected. Lexi had full leg movement but the doctors said they would like an MRI. At 2 weeks old she had her first MRI but as she kept moving it was very fuzzy, they could not tell us anything and we were sent down to Southampton Hospital for further investigation. We met her consultant whom without looking at anything but her back immediately said "she has Spina Bifida" (he thought we already knew). We were told that she had a lypomyelomeningocele. Through her first year of life she has been through problems not with the Lipoma but with the Haemangeoma that occurred directly over the Lipoma, it started to ulcerate and she had this for over 9 months. Our lives involved twice weekly visits to the hospital and nurses visiting the rest of the week. We exhausted the list of creams and started to search alternative treatment such as laser therapy, by tis time we had to travel to Great Ormond Street on a monthly basis also. I must admit that i took an aggressive approach to her care, ensuring i had all the information i required and that her treatment was given promptly, i have learnt 2 important things; 1 - Always trust your instincts 2- Fight to get information and answers from your doctors The amount of mistakes of not passing on test results, missing test results, appointments not being made, wrong information is endless, but they are only human and they will make mistakes and i had to ensure i chased everything. Lexi has had numerous and ongoing Uti's (urinary tract infections) and at 12 months was put on permanent Antibiotics, but this had not prevented them and so has to go on a stronger course when one creeps through. Things change daily and we have been told like many others to expect the worse as it is something that degrades over time, but we live each day in the now. Lexi has an excellent older brother who loves her to bits and she has inspired many with her constant smile and very cheeky character. The most important thing i can tell someone who is going through a similar situation is to NEVER blame yourself, unfortunately things can just happen and we may never know why, live in the now and do the best you can. --------------------------------------------------------------------------------------------------------------- As i am involved with raising funds for other children with Spina Bifida you can look at www.hampshireball.co.uk to see whats coming up and how you can help. |
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This has been published to give others who may be in the same position a little bit of information and also a peep into our lives.
The point is that you are not alone, every situation is different, and we all have different ways of dealing with things.
This is our story:-
Though my pregnancy was a hard one, all the normal scans took place without any inclination that anything was wrong with our baby and with a healthy first child we expected nothing different.
When lexi was born i remember the midwife saying that everything was fine she had a small lump on her back but that there was nothing to worry about, i was happy to have a beautiful daughter.
Even though we had a quew of paediatricians coming to see her, nothing was said and as i had the scan while pregnant it was the last thing i expected. Lexi had full leg movement but the doctors said they would like an MRI.
At 2 weeks old she had her first MRI but as she kept moving it was very fuzzy, they could not tell us anything and we were sent down to Southampton Hospital for further investigation. We met her consultant whom without looking at anything but her back immediately said "she has Spina Bifida" (he thought we already knew).
We were told that she had a lypomyelomeningocele.
Through her first year of life she has been through problems not with the Lipoma but with the Haemangeoma that occurred directly over the Lipoma, it started to ulcerate and she had this for over 9 months.
Our lives involved twice weekly visits to the hospital and nurses visiting the rest of the week. We exhausted the list of creams and started to search alternative treatment such as laser therapy, by tis time we had to travel to Great Ormond Street on a monthly basis also.
I must admit that i took an aggressive approach to her care, ensuring i had all the information i required and that her treatment was given promptly, i have learnt 2 important things;
1 - Always trust your instincts
2- Fight to get information and answers from your doctors
The amount of mistakes of not passing on test results, missing test results, appointments not being made, wrong information is endless, but they are only human and they will make mistakes and i had to ensure i chased everything.
Lexi has had numerous and ongoing Uti's (urinary tract infections) and at 12 months was put on permanent Antibiotics, but this had not prevented them and so has to go on a stronger course when one creeps through.
Things change daily and we have been told like many others to expect the worse as it is something that degrades over time, but we live each day in the now. Lexi has an excellent older brother who loves her to bits and she has inspired many with her constant smile and very cheeky character.
The most important thing i can tell someone who is going through a similar situation is to NEVER blame yourself, unfortunately things can just happen and we may never know why, live in the now and do the best you can.
