| Name: lindalu | Date: Feb 19th, 2007 2:27 AM |
Anjelsin
You have a wonderful possitive attatude, keep it up! We need ladies like you to help keep the sperits of others going! ↑ |
| Name: Catcorn | Date: Feb 19th, 2007 9:58 AM |
Lindalu,
Its great to hear your daughter has come so far. You must be so proud of her. Her independence really shows she had great support from you all along. My son wants to be a vet or a scientist, well thats this month!!!
Kellie1,
Hows things with you? ↑ |
| Name: kellie1 | Date: Feb 19th, 2007 10:20 AM |
angelsin, thanks.
Hi catcorn, things are okay, has a letter this morning with the results of her MRI, said she has a haemorrhage and hydrocephalus, which we already new about. But thet she also has ' a very large porencephaly' and ' tran ependymal oedema'. have no idea what these are just yet.. how are you? ↑ |
| Name: Catcorn | Date: Feb 19th, 2007 10:45 AM |
I can tell you about one of them as its the same condition as my son - ' a very large porencephaly'.
If you do look this conditon up on the internet remember they give all the disorders which may come with the porencephaly. Dont think your daughter will get all if even any of them. My son has mild CP and epilepsy but no fits in a year. If you do have any questions on it you can ask me whenever, if im not online ill get back to you. I have first hand experience which is sometimes better than a doctor who is going by his college books. ↑ |
| Name: kellie1 | Date: Feb 19th, 2007 10:51 AM |
| didnt realise it was the same as your son, never made the connection. maybe its not so bad cause you son is doing okay. Just seems like she has so much wrong.......dont know if i can face looking it up right now - especially if they tell you lots of bad stuff. ↑ |
| Name: Catcorn | Date: Feb 19th, 2007 11:19 AM |
| I know what you mean. The sites add to your worry not the other way around.... Can I ask is she able to feed and breath as normal? ↑ |
| Name: kellie1 | Date: Feb 19th, 2007 11:29 AM |
| yeah, as far as i know. sounds a bit husky in her breathing sometimes but i think that might be just babies!!! The health visitor said she is doing everything she should be doing, that was at 6 wks, now she sucks her hand and rubs her eyes when she is tired. what are your thoughts? ↑ |
| Name: Catcorn | Date: Feb 19th, 2007 11:46 AM |
| Sounds like you have a perfect happy little baby... I said before if Cian had his MRI when he was born like your daughter i would have been like you worried that he wasnt progressing as normal because of the Cyst and the negative things you are told. But because i didnt know I was able to enjoy him being a baby. She is doing great so far especially if the health visitor is happy she is keeping up. She will probably be running rings around you this time next year. Just enjoy her, she will be smiling and recognising you soon and not too long away be giving you cheek... ↑ |
| Name: kellie1 | Date: Feb 19th, 2007 11:56 AM |
thats what i want to do - enjoy her, she already smiles when i talk to her, or sometimes when she wakes me in the middle of the night!!! trying to think more positively but sometimes its hard to get past it. always thinking, should she be holding her head up by now? or should she be able to roll over?. does that make sense?.
on a lighter note, how was your weekend? ↑ |
| Name: Catcorn | Date: Feb 19th, 2007 12:04 PM |
Makes perfect sense. We will worry about our first born never mind with the extra pressure you have now. But by the sounds of it she is doing great and hopefully she will only have slight side affects like my son.
Had a great weekend, didnt get home till 5 in the morning after my night out Friday with the girls then was up at 9.45 to bring him training. Grand he is older now i was able to say if you play with your dinasours and watch a DVD till mammy has a sleep we will go to Eddie Rockets for dinner... Worked aswell!
His sunday club started back yesterday aswell, he was playing pool and basketball and making pancakes. Its for children with disabilaties, a parent started it years ago cause her daughter was slightly braindamaged and the kids love it.
Did you do anything nice? ↑ |
| Name: kellie1 | Date: Feb 19th, 2007 12:09 PM |
| not much really, will be better when she is a bit older and i can take her to the park and things like that, as for your son, bless, what a good boy!!! how old is he now? ↑ |
| Name: Catcorn | Date: Feb 19th, 2007 12:19 PM |
He is 7 now, the years fly by. Cant believe it really. Was just thinking back when he was a baby, it was only when he was diagnosed with Cerabral Palsy that i realised he never crawled. He would lie on his belly and pull himself with his right arm and leg like something in the army. But he was walking at 11 and 1/2 months so didnt think much of it.
It is great when they do get that little bit older where you can bring them the park. Or we lived at the zoo he was fasinated even at a year old, we would get home and you could see his head was still with the animals... ↑ |
| Name: kellie1 | Date: Feb 19th, 2007 12:33 PM |
| yeah cant really do much with her at the moment. i bet when they get to your sons age its hard to rmember them ever being so small!!! Abbie looks huge to me now but shes only 12lb 8oz feels like ages ago she was born. ↑ |
| Name: Catcorn | Date: Feb 19th, 2007 12:42 PM |
She is only 2 months old so thats a good weight. Cant remember how heavy cian was at that age, have it all wrote down in his baby book at home. He was 8lb 11ozs born and was a savage with his bottles. Id feed him 8ozs and have to get mam to have another 2ozs ready to get him off to sleep... Didnt do him any harm he was always a healthy baby.
But right now you get to do the snuggly bonding with the bottle, my favorite was just after his bath when he was all baby smell. Just thinking back makes me want another one... ↑ |
| Name: kellie1 | Date: Feb 19th, 2007 1:10 PM |
| yeah her hair smells lovely when its just been washed, she drinks about 6oz and loves her food aswell. i love it when she sticks her legs out straight if im rubbing lotion on them, she loves it. I bet they get more fun in the bath as they get older!!!!!!!!! ↑ |
| Name: Catcorn | Date: Feb 19th, 2007 1:17 PM |
| When they do get older you might aswell be in the bath with them you get drowned that much!!!! But thats all the joy of being a mammy.. Even now Cian would sit in the bath for hours if i let him, the place would be drenched though. ↑ |
| Name: kellie1 | Date: Feb 19th, 2007 1:21 PM |
give it a few years and he wont want to get in the bath!
have an appointment at the hospital for her so i have to go will speak later or if not will catch you when your next online. ↑ |
| Name: Catcorn | Date: Feb 19th, 2007 1:25 PM |
Good luck and let me know how you get on.
Remember they usually give you bad news but I know with Cian they can overcome it. Talk later. ↑ |
| Name: anjelsin | Date: Feb 19th, 2007 1:43 PM |
Hi it's me again.
With all the brain stuff they (the doc's) always give all the bad things that could be the out come. In reality doc's still can't unlock the mysteries to the brain. Take what they tell you and listen but you don';t have to take everything to heart.
Along with all brain disorders there are long lists of things that could possibly happen that doesn't mean that they will.
Know that all babieswill develope on their own pace. My daughter still doesn't hold her head up completely but she tries. She gets better everyday.
Just love the little Angels ;-) ↑ |
| Name: Catcorn | Date: Feb 19th, 2007 2:27 PM |
| Hiya Anjelsin, my son has CP but very mild people dont even notice he has it. He does get worn out quicker than the other kids and sometimes his leg gets sore and we have to massage it. But its a small price to pay and to me he is perfect. we dont let his conditons control our lives but the other way around. He couldnt go on his bike with out stabilizers so we got a go kart just small things like that and he doesnt feel any different to the other kids. ↑ |
| Name: Catcorn | Date: Feb 19th, 2007 5:02 PM |
| Hiya Kellie1, how did yous get on with the doctor? Ill be on tomorrow anyway so hopefully its good news. ↑ |
| Name: anjelsin | Date: Feb 19th, 2007 6:06 PM |
| Catcorn how old was your son when they diagnosised him with cp? ↑ |
| Name: kellie1 | Date: Feb 19th, 2007 9:37 PM |
| your right there are so many things connected with the brain that can happen, i just want her to be happy and have the best life possible but sometimes i just dont know how to do that. ↑ |
| Name: anjelsin | Date: Feb 20th, 2007 12:56 AM |
kellie1
With time, that is what I do just let time determine what the out come will be. I am scared about my little angel but I know that no matter what the out come is I will love her todeath and we as a family will make sure that she has the best possible life. I think that all parents try to give their kids the best life. She makes progress everyday. Its great to watch treir progress no matter what speed they do things. ↑ |
| Name: anjelsin | Date: Feb 20th, 2007 12:58 AM |
Catcorn
Did your son have muscle tone as an infant. What were his other signs and things that he did? ↑ |
| Name: Catcorn | Date: Feb 20th, 2007 9:16 AM |
Hi Anjelsin, my son was nearly 6 when they diagnosed him. He was a very clumsy child always falling but being my first and the only boy in the house anyway I took it was just a boy thing. Only when he got a bit older and started limping slightly that I did realise something was up. Its only the left side of his body that is affected and only mildly. Other than that there were no signs at all. He can keep up with most things but with his condition tires more easily. He also needs extra help in school because it seems to take him longer to do normal things like copy from the board. But otherwise for the amount of conditons he does have he seems to be overcoming them all. As you said your daughter is getting better everyday sometimes it just takes them that little bit longer but they get there in there own time. And even a child who has no physical or neurogical problems are'nt good at everything!
Kellie1 as Anjesin said just give her time. I know the waiting part is the hardest but she will get there. And never say never..... Look how well she is doing already. She will compinsate in other ways. At my sons parent teacher meeting his teacher said he is great at art and is full of knowledge (he remembers holidays from when he was 2) ↑ |
| Name: kellie1 | Date: Feb 20th, 2007 9:38 AM |
| hi catcorn, i know all we can do is wait its just hard. At the hospital yesterday the doctor tested her reflexes and said that her tone and posture is okay. he was concerned about her eyes because he couldnt get her to fix and follow anything, and said if she doesnt do it in the next couple of weeks then that is a concern. However, he did wake her up to do this so she was tired and not impressed! he is referring her to an eye speciallist for them to do tests though. We did asume that she may have problems with her vision because the part of the brain where they think the damage is controls visual things. He said he really couldnt tell us much until her next CT scan, just talked about possible related conditions such as Cerabral palsy and epilepsy. ↑ |
| Name: Catcorn | Date: Feb 20th, 2007 10:02 AM |
My son has both Cerabral Palsy and epilepsy but except for taking medication every day and doing physio it doesnt affect him that much. His emotions are every where he is laughing one min and then in floods of tears the next. Screaming one second and as calm the next, the emotions are controlled by the right side which he is missing.
I dont think i would focus if the doc woke me up either!!! But if she is smiling at you she must see anyway. She is also only 8/9 weeks old so her eyes prob dont focus properly anyway. ↑ |
| Name: kellie1 | Date: Feb 20th, 2007 10:21 AM |
| the damage is on the rigt side of her brain as well ↑ |
| Name: Catcorn | Date: Feb 20th, 2007 10:34 AM |
| I didnt know sight could be affected but his sight is perfect. I was a bit worried when he was younger he seemed to get a slight turn in the left eye especially when tired but got his eyes checked a few times just by our own doc and all is fine. I was never told the full extent of his cyst, when i went to get the results fo the MRI the doc wasnt in and his under study just said there was something found that he had extra fluid in his brain but its normal. Its only when I asked his new neurologist she told me what he had but then I couldnt remember what i wanted to ask cause of the shock!!! So you told me something i didnt know. ↑ |
| Name: kellie1 | Date: Feb 20th, 2007 10:52 AM |
| yeah apparently the back right deals with vision. But the other things she has means she probably has bits of her brain missing on that side as well but until she is scanned we dont know where. Dont know if i want to know to be honest. ↑ |
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