續：子女有"大腦麻痺症"的家長站 (2)

ndw

朋友的囡囡有"大腦麻痺症"，有無其他小朋友一樣？

[url=http://forum.edu-kingdom.com/vie ... ra=page%3D1&page=64]http://forum.edu-kingdom.com/vie ... ra=page%3D1&page=64[/url]


可能之前個標題爆左容量，所以唔可以在發表，所以續開LEE個標題。


[ 本帖最後由 ndw 於 11-4-20 12:41 編輯 ]

cindy1227

已經照左腦仔，等報告出。希望一齊順利啦我唔bb再一次受苦

jor_mankiu

@cindy1227,  我個仔曾經有腦積水但冇惡化，做咗兩次體外腦積水分流之後唔需要做長期體內分流器，其實呢個應該係睇佢頭圍有冇不正常地大，如果有，就一定要做，你bb情況如何，有分流器照顧上會麻煩啲 ，但如果腦吸收唔晒啲腦水，都冇得揀唔做，所以好睇bb情況

cindy1227

各位家長你們小朋友是否有做腦積水分流加裝分流器，對積水有否幫助呢？

cindy1227

你好我侄仔都係一樣，可否分享多一些成長路呢

QQP

咁星期一去照會好快啦, 唔好太擔心.
其實現在的醫學都好發達, 其實bb因為出生焗到而cp 的機會率都好低.
既然唔知, 都唔好亂估, 嚇壞自己冇益.
睇下醫生照咗報告講咩先再算!

sarahkyu

jor_mankiu

我地都計過唔做野真係唔得,大家都好大壓力,所以點冇時間,我都會做下part time,
d私人訓練真係好金,仲要係長時間!
咁你大仔果時有冇排政府訓練?

HI,QQP
可以係呢度分享的確幾好,因為同身邊D人講,佢地都唔知係咩,跟住仲要解釋,已經唔想成日提住,每講一次自己就唔開心一次,唔係咁想!
其實都仲未知我女咩事,要照左先知,佢係發展慢,眼科醫生話佢眼球正常但好似睇唔到野同斜視,就懷疑佢係CP,叫我地去照下!
星期一照,希望唔好打風!!
唔知係咪生佢時焗到,因我係開到一半生唔到要開刀!!

QQP

回復 sarahkyu 的帖子

HELLO!

你好呀, 雖然大家在走一條難行的路, 但都叫好彩有同路人, 得閒分享吓, 互相支持啦.
其實腦傷的兒童有好多, 各有唔同形式, 請問小朋友大概因咩事腦受損呀? 有冇腦抽筋?
見你在另一個POST 問 MRI. 要知道大概咩種類先可以俾到更多意見你喎.

我的小朋友因為基因異常, 會令佢哋腦及神經有持續性損害的奇怪發展, 現在沒有活動能力, 食唔到嘢, 睇野反應極慢, 可能只見到黑影, 醫生話冇得醫.  雖然係咁, 我都會珍惜共處的日子, 我冇辦法變番佢做正常小朋友, 但都希望盡量俾到一個快樂的童年佢.

有緣今世遇上都係大家的福份, 唔好計啱定錯, 有病都唔係你同佢想的, 互相愛護係人生艱難路上最重要的依靠.
希望你盡快回復心情, 繼續開心上路, 路上與家人互相扶持!  

jor_mankiu

回復 sarahkyu 的帖子

for my eldest son, he did physiotherapy and craniosacral therapy when he was young. Later when he was ready to talk, he also went for speech therapy. Now he's talking very well but he's now at the age when he's supposed to write but his gross motor and fine motor both very weak, he needs to go to occupational therapy, physiotherapy and sensory integration sessions every week. all private. it's soooo expensive. With my 3rd son in this situation, I just cannot stop work!!

jor_mankiu

回復 sarahkyu 的帖子

i would strongly suggest you to keep working as much as you can, if you can find a reliable helper to help you. In my first son's case, i quitted and went to therapies with him all the time. I must say it was quite depressing, because i was always looking for ways to help him, taking him to different therapies. But at the end he just wasn't doing as well as other kids. The more you see, the more you compare with other kids, the more depressing you get. Yes he improved, but i don't know if it was because of therapies or because he just naturally grew out of it. but because i was too focused on him, i feel stressed out and with less financial freedom it's not good for the family as a whole. I find that now when I'm back to work full time, it's the best relief from the pressure at home. yes, most people find that work is work and would not be fun, but if you have even worse things to deal with at home, it's better to stay at work some time!!

sarahkyu

回復 jor_mankiu 的帖子

Thanks for your reply & share!!

太貴真係負擔唔起! 如果亞女真係有事,遲d仲要多d時間照顧佢,都唔知仲可唔可以返工!!

你大仔好叻叻,可以追得返! 除左政府,你有冇另出去做其他治療?

亞女係我第2胎,仲有個哥哥,讀緊k2,哥哥而家係我精神支柱,見到佢我心情好d!!

you're right ! this is life. Cheer up and have hope. Let's add oil together!!

希望你3rd仔仔好快追得返!!

jor_mankiu

回復 sarahkyu 的帖子

hi sarahkyu, i replied on your other post. your daughter sounds like to have development delay, but maybe too early to say whether she has CP. If you can afford, take her to see Dr Barbara Lam or Dr. Chow who both used to work at Queen Mary NICU. They will direct you to the right specialist and start therapies early. But they are very expensive, esp. Dr Barbara Lam. Even if you cannot afford too many specialist, have hope and play with her more. My other friend's son has development delay and now walking and talking, although much slower than usual kids, but can go do normal schools.

As for my case, as i mentioned on another post, my baby caught very severe meningitis before. Half of the brain was severely damaged and not growing anymore. Muscles very very stiff. cannot even drink milk from bottle. cannot even sleep and lay down on bed flat. 4 months has past since he was discharged from hospital. Still no growth in weight or any other development. Still looks like a 2 months old. After seeing the MRI result, it was even worse than we thought, and he was deteriorating. For sure he will be mentally and physically disabled. Now I just wish he can eventually be mobile and enjoy life.

In fact this is my 3rd son, my first son was born premature and has brain damage too. also very much delayed but now in normal kindergarten, although slower than other kids. I'm a working mom too. Indeed, it's very difficult to deal with kids with delay. it's hard to see other babies growing and developing so well. but my own baby have no progress. Time seems to pass so slow.

but this is life. Cheer up and have hope. Let's add oil together!!

sarahkyu

大家好!
我用左幾日時間睇晒你地d post (由part 1開始),覺得你地好叻!!
我囡囡而家8個半月,唔識坐,唔識轉身,唔識拎野,唔識搵聲音
6 個月時已排cac,做左聽力test,聽覺冇問題,約左9月11見醫生
我地覺得佢對眼好似睇唔到野,帶左佢睇眼科,醫生懷疑佢係cp,而家book左27/8去私家做mri,其實都有心理準備,但真係好難接受,好驚!
呢排返工,食飯,訓教,我個腦只係得亞女,好辛苦!

見大家都冇留言好耐,可唔可以update返小朋友而家既情況!!tks!

ndw

今天是平安第一日上學。上一小時十五分的課堂。老公叫我今天在家工作，一家一起送平安上校車。有特殊設備的校車來到我們家的門口接平安和她的輪椅。 當校車的升降機升起平安和她的輪椅時，平安很開心地笑了。我想她喜歡坐升降機上校車的那感受。
老公意想不到只有三歲的小女眼見姐姐平安的將要小別，說了再見後而大哭了起來，表現出很強烈的不舍之情。老公快快叫我啦走小女會家裡，以免她的心緒影響到平安。

這是平安自十個月大時因有大抽筋而要自己一人睡在醫院的深切治療部後第一次自己離家的。不知她的適應如何呢？

平安去的學校是正常學校裡的特殊班，有當特殊教育的老師來教。老公事前有見過那位老師，言談間老公判斷出那位教師也是基督徒。感謝主的安排。

ndw

原帖由 fan-fan 於 11-6-10 20:13 發表
諾諾爸爸, 我們最後選擇救, 而阿仔亦選擇了生存, 看著他現在照常吃喝玩樂, 我沒有後悔，我更珍惜和他一起的日子, 是長是短,我不知道!

如此看來，我都系選擇生了。我是誰，我算什麼，竟可以確定孩子的死麼？主權還是交給我的主，我的神吧！

你好叻啊，可以落到決定真是不容易！

ndw

原帖由 沖廁 於 11-7-3 22:30 發表
想借個位拉票::loveliness:  香港基督教服務處係一間非牟利機構, 主要服務一群特別需要的兒童及長者. 今次向"李嘉誠基金會""香港仁愛香港"提交了計劃書, 申請撥款, 目的為語障兒童提供協助.  然而, 這次是靠網上或電 ...

衝廁，你好嗎？
謝謝留言。可惜，我不住在響港。

sohpinkss

好耐冇黎喇!!
呢排BB夜晚成日都扭計
唔知做咩事呢
我諗佢應該係牙仔痕又擺唔到手指入口
我比牙膠佢咬佢就好快訓返..
之後過一陣又再扭過!!!
唉晚晚都冇教好訓><

諾諾爸爸

要選擇真不容易, 記住每星期點都找一天睡足8小時.

小元

有時小元有落凝固粉,方便用匙餵食,
唔知好唔好?
因同學仔媽咪叫小元少D用,
但見到學校有時都會用吓