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教育王國 討論區 特殊教育 朋友的囡囡有"大腦麻痺症",有無其他小朋友一樣? ...
樓主: Li_vivi
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朋友的囡囡有"大腦麻痺症",有無其他小朋友一樣? [複製鏈接]

Rank: 3Rank: 3


275
421#
發表於 08-1-12 10:10 |只看該作者
NDW,

在BB還小時, 我也一樣盡量不令其他人擔心我, 所以無當要哭, 我會忍著, 直到媽媽睡了(我是跟媽媽一起住的), 我才將情緒舒發出來, 因丈夫知道我的心情, 所以每當他放工, 他便會背著朗朗, 與我一起在公園散步, 這樣的舉動, 的確令我輕鬆不少......

其實在朗朗身上我學會了一樣功課, 就是無論我們多有才能, 當我們為將來籌謀一切時, 人的生命, 豈能在我們的掌握之內, 我學會了凡事感恩、凡事交託, 我不能預計朗朗將來能否說話, 我也不知道倘若我走了, 朗朗會如何, 但我知道, 主必不會讓他孤獨......幣...想喊添......

戰友們, 加加油, 在這裡舒發完, 再努力工作.....

超級魚


原文章由 ndw 於 08-1-12 09:58 發表
Dear Fan-Fan
Thank you for your kind words.   I hope your ar B will do better soon on whatever that might bother him and cause his long lasting and loud crying.  It must be hard on both of you and  ...

Rank: 4


687
422#
發表於 08-1-12 14:20 |只看該作者
HI ALL~~

星期四帶亞女去睇菲臘牙科醫院睇牙 , 一睇就話亞女有6隻註左 , 要排期做補牙+倒模具(因為佢間唔中會咬咀 , 希望做左個牙套可以幫到佢啦) , 不過要排一年 , 仲要係瑪麗醫院做 , 因要全身麻醉做~~~ 唉~~:cry:

FAN FAN : 你亞B可能之前做手術嚇壞左先會大聲甘喊 , 過多一排就唔會 , 因為佢已經唔記得左喇~~~

超級魚 : 原來搬屋一事係好多野煩 , 好多元要用 , 仲要得我一個去攪~~~ 希望朗朗過左農曆年體重會直線上升啦~~~

NDW : 歡迎你加入我們 --- 齊齊傾一傾下自己子女預到乜野問題~~~

托賴亞女最近身體都OK~~~

不過下星期會好凍 , 要加多穿衣服~~

BELL~~~

Rank: 4


873
423#
發表於 08-1-13 15:28 |只看該作者
BELL, thank you for your welcome.  
I can understand the busy thinking, planing situation and stress you have when moving home.   Just thinking about what to keep and what not is a headache.  Yes, unexpected money spending that also add up your stress.   I understand the situation because I have been there many times.  My family moved once about every 2 or 3 years.   At first, not counting my childhood, only my husband and I.  That is the most easiest move.  Then, we move with my parents (2 more people to take care of, think about and to communicate with).   The communication part with my parents added up a tone of stress on us.  Then, we added our first born into our moving and then added in the 2nd born at last time.  Now,  I do not want to move again especially with a special need nw.  After the moving, you still need a period of time to settle down in your new neighborhood comfortably, such as need to think about  where to get what often until these become a habit of your routine.  Yes, there is a saying like this,"Moving from upper house to lower house, loss a bucket of grain" ma!
About your ar "nue nue" (Man Kee)'s cavity teeth, did you brushing her teeth regularly?  My nw's teeth is almost all there, I think.  We just start brushing her teeth every day either in a laying down position or sitting up on a supported high chair.  I hope she will not develop any cavity.  We have not brought her to see any dentist yet.  I don't know how efficient it is when we brush her teeth.  She likes to chew on the tooth brush.  Anyway, I hope your ar "nue" will not have any more cavity teeth.

SupperFish,
I am sure God will take a good care of Long Long and our cp children too.  Even as a parents, we may leave before them but God is good and Just as what He said or promise in the book of Isaiah 46:3b-4 "...
You who have been borne by Me from birth
And have been carried from the womb;

4Even to your old age I will be the same,
And even to your graying years I will bear you!
I have done it, and I will carry you;
And I will bear you and I will deliver you."
以 賽 亞 書 46 : 3-4(Chinese Union Version (Traditional))
3...你 們 自 從 生 下 , 就 蒙 我 保 抱 , 自 從 出 胎 , 便 蒙 我 懷 搋 。
4 直 到 你 們 年 老 , 我 仍 這 樣 ; 直 到 你 們 髮 白 , 我 仍 懷 搋 。 我 已 造 作 , 也 必 保 抱 ; 我 必 懷 抱 , 也 必 拯 救 。

What you said just like what my husband told me when I am at the moment of worrying about how nw's life would be if both of us are gone to the heavenly home.   

Beside, this is one of the reason we do not mind to have one more child after nw.  We do not want our oldest daughter bare the full burden on taking care of nw's special need when we may not able to in the future.  This way, at least she has a sibling to discuss with this matter and share some load with her.  Well, if the next one has cp again, then he/her have nw to company with.  I know, it is so ar Q.  But since God gave us this 3rd one (we do not actively want one at this time), He must have his good will in it and it will be a wonderful gift from God again.  

Take care, all of you.

~dw.

Rank: 4


873
424#
發表於 08-1-14 15:11 |只看該作者

I should not say ar Q thinking

"ar Q thinking" came out of my hand too fast when I was talking about emotionally handling our 3rd baby to come.  Actually I do NOT see that we are being ar Q at all when we think positively or have positive vision.  It is this kind of positive thinking and vision enable us to take calculated risk for better result in whatever we do or decision making in everything in our life.  
Therefore, I do NOT think SupperFish has ar Q thinking either even when she said she was being ar Q  in a few situations.  
:idea:
~ dw.

Rank: 3Rank: 3


275
425#
發表於 08-1-18 16:10 |只看該作者
講樣開心野比大家聽下...

今日係朗大少既妹妹(彤彤)牛一大日子, 佢今年3歲啦.....

超級魚


原文章由 ndw 於 08-1-14 15:11 發表
"ar Q thinking" came out of my hand too fast when I was talking about emotionally handling our 3rd baby to come.  Actually I do NOT see that we are being ar Q at all when we think positively or have p ...

Rank: 3Rank: 3


212
426#
發表於 08-1-20 10:40 |只看該作者
hehee  遲左D添...

祝彤彤快高長大, 身體健康, 聰明伶俐!!

啜啖先!!

fan fan


原文章由 超級魚 於 08-1-18 16:10 發表
講樣開心野比大家聽下...

今日係朗大少既妹妹(彤彤)牛一大日子, 佢今年3歲啦.....

超級魚

Rank: 4


873
427#
發表於 08-1-23 07:50 |只看該作者

+ my late Happy Birthday to Tong Tong

+ my late Happy Birthday to Tong Tong.   and a kiss:   to the little girl.

New Year is coming soon.  I bat every one is busy in preparing this big holidays now.  I will be busy for a while since both of my Dad and Mom has gone for visiting their home town.  They will not be back till mid April.  No one can watch my daughter #1 when my husband goes to the special educational center with nw 2 Mornings a week.  Thank God, He prepare me an understanding good boss (supervisor) for these days.  My supervisor accepted my request to work from home 2 days a week till my parents come back.  I can not afford leave of absent. You know la, no money on talk ma.


My situation is opposite of Bell's.  I am the only one who have a job that bring bread on the table and my husband's job is full time care giving to my whole family.  My husband works very hard as Bell does, I believe, from the moment he wake up by our daughters early in the Morning till the moment he went to bad at night.  Even at the middle of the night, he need to get up for our children's need.  So that I may sleep through the night and not being interrupted.  This stay home job does not give you holiday at all.   I have a lot of respect to Bell and my husband, all time devoted care giver to the family.  
Observing the kind of job my husband does everyday, I rather doing what I am doing now, just bring bread on the table as God provide me the current job.  I am sure my husband want to pursue his own carrier more than I want for mine.  However, he sacrifice himself for he love his family so much.  Well, he loves God too.  That is why I can trust him.  

We have the same view as Bell.  It would help our special child a lot on her development if at least one of us can devote as much as quality time with her.  According to our unique family situation, my husband be a full time care giver to our family is the only way we can achieve this goal for now.  Even though this mean our living is barely get by, it is worthy.  

Therefore...

Bell,

keeping up your good job.  I am sure your husband deep down know that he can not live without you.  And what you have done for the family are very appreciated and very important.
~dw.

Rank: 3Rank: 3


275
428#
發表於 08-1-24 10:05 |只看該作者
各位戰友,

講樣重開心的事比大家知, 聽日係我牛一, 彤彤生日同我相差一個星期咋.....

原本醫生話可以係我生日同我開刀生妹妹, 但因為朗朗係37週出事, 我為免37-38週之間再擔心妹妹的情況, 所以要求醫生37週幫我開刀, 妹妹雖然37週已出生, 但已有6.7磅, 醫生估計若妹妹足月40週出生, 應超過8磅。好重!

超級魚


原文章由 ndw 於 08-1-23 07:50 發表
+ my late Happy Birthday to Tong Tong.   and a kiss:   to the little girl.

New Year is coming soon.  I bat every one is busy in preparing this big holidays now.  I will be busy for a whil ...

Rank: 4


873
429#
發表於 08-1-24 12:16 |只看該作者

Happy Birthday to the Mom.

You 2 can share one Birthday Cake. :)
My hushand and 2 of my daughters are born in the same month.  We just buy 1 birthday cake for all to them.  What a good way to save up money.  One party for both girls too.
yes, if 彤彤 was 8 磅, she would be a big baby.

Rank: 4


873
430#
發表於 08-1-24 12:32 |只看該作者
SupperFish, any plan of celebration for 2 birthdays in your family?

Rank: 3Rank: 3


230
431#
發表於 08-1-24 14:03 |只看該作者
各位媽媽, 你地好勇敢好堅強, 我女兒是唐氏BB, 而家只有3個月大, 生左出黎先知佢係唐氏BB, 我坐月既時候每日都喊, 因為我接受唔到o 但直到而家, 我好開心咁過每一日, 因為我見到我個女每日既進步, 我知上天賜呢個女比我係想我再幫多d人o 我以前冇留意Baby-Kingdom, 直至我生左個女之後便上Baby-Kingdom認識左同路媽媽, 我亦有睇你地既交流, 我覺得你地仲堅強過我, 好值得敬佩, 我地大家都要繼續努力呀, 為左我地既小朋友, 我地唔可以放棄架!
祝各位媽媽同小朋友, 身體健康, 生活愉快, 一切都順順利利:)

Rank: 4


687
432#
發表於 08-1-24 15:58 |只看該作者
hi all.

我終於搬左喇~~~~  不過執野執到好累~~~

e+ 亞女要學識自己一個人訓一張床喇~~~

佢都開始習慣自己訓~~ 不過間唔中都要我們陪佢訓~~

今日天氣涼左 + 落埋雨.....

各位mani......小心身體

bell

Rank: 3Rank: 3


275
433#
發表於 08-1-24 16:22 |只看該作者
Bell,

我地要朗朗學自已訓, 但係果效好差, 佢琴晚食個corl訓, 4:00就醒佐啦, 直到今日中午我找電話返屋企, 我呀媽話佢未訓過覺, (佢今日無返學啦, 我驚佢唔夠訓無精神.....), 我而家好眼訓......

超級魚


原文章由 BELLFOK0318 於 08-1-24 15:58 發表
hi all.

我終於搬左喇~~~~  不過執野執到好累~~~

e+ 亞女要學識自己一個人訓一張床喇~~~

佢都開始習慣自己訓~~ 不過間唔中都要我們陪佢訓~~

今日天氣涼左 + 落埋雨.....

各位mani......小心身體

bell ...

Rank: 3Rank: 3


275
434#
發表於 08-1-24 16:39 |只看該作者
ndw,

我當然會分開慶祝.....

超級魚


原文章由 ndw 於 08-1-24 12:32 發表
SupperFish, any plan of celebration for 2 birthdays in your family?

Rank: 4


873
435#
發表於 08-1-27 12:12 |只看該作者
原文章由 PAKYINGMA 於 08-1-24 14:03 發表
各位媽媽, 你地好勇敢好堅強, 我女兒是唐氏BB, 而家只有3個月大, 生左出黎先知佢係唐氏BB, 我坐月既時候每日都喊, 因為我接受唔到o 但直到而家, 我好開心咁過每一日, 因為我見到我個女每日既進步, 我知上天賜呢個女 ...


Thank you very much for your encouragement.  To me,  it is God who is strong and sustain me.   Without Him, I can not walk thus far with many happy days.   "but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31
以 賽 亞 書 40:31 -- 但 那 等 候 耶 和 華 的 必 從 新 得 力 。 他 們 必 如 鷹 展 翅 上 騰 ; 他 們 奔 跑 卻 不 困 倦 , 行 走 卻 不 疲 乏 。

A friend of mine has a son who has Down Syndrome too.  He is a teenager now and he loves the Lord and live happily.  He need to be supervised, but he can walk, talk and play good.  The loves he got from God, his parents and siblings help him grow in both physically and spiritually.

Rank: 4


873
436#
發表於 08-1-27 12:52 |只看該作者
原文章由 BELLFOK0318 於 08-1-24 15:58 發表
hi all.
我終於搬左喇~~~~  不過執野執到好累~~~
e+ 亞女要學識自己一個人訓一張床喇~~~
佢都開始習慣自己訓~~ 不過間唔中都要我們陪佢訓~~
.....
bell ...


Hi All,
It is not a easy transition.  I remember right after n.w. came back from hospital of her seizure reason, we moved her crib in to our bedroom.  So that we could observe her during the night in case she have seizure again.  However, we woke up by every little noise she made even her breathing.  We could not have any good sleep at all.   After a few weeks of trying, it just did not work out for us.  We moved her back to her bedroom which she shared with her sister.  We depends on God to protect her sleep safely through every night.  Then, we may also sleep with peace again.   +   nw can sleep in her own bedroom now with peace, not fussy when we give her favorite towel / blanket to suck on when she is engaging to sleep.   But we can not have 2 sisters share with one bedroom any more.  Because, when nw cries once a while, that stir up her sister and she cry too.   + Now, we can only have her sister sleep in the living room.  Now they are 2 happy little one again.   +

Rank: 4


873
437#
發表於 08-1-27 13:08 |只看該作者
原文章由 超級魚 於 08-1-24 16:39 發表
ndw,
我當然會分開慶祝.....
超級魚


Yes, we need to treat ourselves good too.   Since my husband has not complained yet, I just went for the easy way. When our daughters were babies I remember I bought him a cheese cake.  Last year, my husband baked 2 cakes for our dauthers' birthday. +   Opoos..., I forgot to get him a cake for his last birthday.   
~dw.

Rank: 4


873
438#
發表於 08-1-28 05:49 |只看該作者

Can you read my Chinese Simplified Charactors?

大家好!我第一次在这里打中文。用的是普通话洴音法。找不到繁体字显示。对不起!希望大家能读简体字。不能读的话,我可以回去打英文啦。我也可以学用仓颉法打繁体中文。不过,这要等我有空才学。不知要大家等多久。好!今天就打这么多。大家能不能看请让我知道。谢谢。  用普通话洴音法也很慢。
~d.w.

Rank: 5Rank: 5


2007
439#
發表於 08-1-28 06:09 |只看該作者
hi all,

thanks God that i can finally finish reading the whole topic in this early morning....so tired and need to go back to sleep.

i don't know chinese typing too, only use "hand-writing board"

[ 本文章最後由 weiwai 於 08-1-28 06:11 編輯 ]
愛是恆久忍耐,又有恩慈;愛是不嫉妒;愛是不自誇,不張狂,不作不合宜的事,不求自己的益處,不輕易發怒,不計算人的惡,不因不義而歡樂,卻與真理同歡樂;凡事包容,凡事相信,凡事盼望,凡事忍耐。林前十三4-8

Rank: 3Rank: 3


275
440#
發表於 08-1-28 09:59 |只看該作者
ndw,

我完全看到你打的中文, very good.....

超級魚


原文章由 ndw 於 08-1-28 05:49 發表
大家好!我第一次在这里打中文。用的是普通话洴音法。找不到繁体字显示。对不起!希望大家能读简体字。不能读的话,我可以回去打英文啦。我也可以学用仓颉法打繁体中文。不过,这要等我有空才学。不知要大家等多久。好!今天就 ...
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