朋友的囡囡有"大腦麻痺症"，有無其他小朋友一樣？

子子家

你好叻呀

原文章由 BELLFOK0318 於 07-4-28 11:20 發表
超級魚,

早晨呀~~我同你個case一樣每次入聯合急症都唔駛點等~~就會見醫生~~不過我亞女試過微燒都比佢入院喎~~~可能我亞女住院d期太密~~d醫生怕都會比佢入院~~

我亞女係深水步果間覆診~~~我無本事可以比佢入屯門覆~ ...

超級魚

Fan Fan,

因開腦? 咁手術做幾多個鐘? 唔好驚......我會為你和bb祈禱...

超級魚

原文章由 fan-fan 於 07-12-16 00:31 發表
BELL & 超級魚

上星期同阿B覆腦科，　醫生話阿ｂ左腦ｄ水去唔到，　下星期二再要開腦做手術

星期一就要同阿ｂ入院，我不斷叫自己堅強ｄ，呢次手術係會對阿ｂ有好大幫助，不過我個心真係好驚．．．． 佢之前已開過兩次腦架喇．．．．



...

fan-fan

超級魚& bell,
手術做左五個鐘, 進行順利, 不過阿b依家仲係icu, 因為佢清醒返後, 就一直扯氣, d透氣聲大到好得人驚, 今日仲俾返豬鼻幫佢吸氣, 我好心痛
醫生話可能要安排阿b再入手術室, 插條硬鏡入去, check下咩原因....
我好唔想佢做, 因為我怕阿b頂唔順....
依家日日係icu陪住阿b, 咩都做唔到, 我真係好心煩呀!!

超級魚

FAN FAN,

咁醫生話幾時幫佢再CHECK, 你要搵時間休息打呢場仗, 我好明白BB係手術室做手術時的心情, 因為朗朗剛剛先做完手術, 而且做佐6個鐘, 你要保重呀....BB有D乜野進展, 記得通知我和呀BELL, 我會繼續為BB祈禱.....

超級魚

原文章由 fan-fan 於 07-12-21 00:01 發表
超級魚& bell,
手術做左五個鐘, 進行順利, 不過阿b依家仲係icu, 因為佢清醒返後, 就一直扯氣, d透氣聲大到好得人驚, 今日仲俾返豬鼻幫佢吸氣, 我好心痛
醫生話可能要安排阿b再入手術室, 插條硬鏡入去, check下 ...

BELLFOK0318

fan fan,

睇下醫生幾時幫你亞b再check~~~

唔駛擔心~~ 會無事的~~

有咩事可以同我們講~~

最緊要注重自己身體~~~ 你病左無人照顧亞b~~ 亞b需要你的~~

我會為你亞b禱告~~

bell~

fan-fan

超級魚 & bell,

多謝妳地鼓勵!!

醫生下星期一會幫阿b入手術室全身痲醉check, 要搵個原因點解佢條氣咁扯,  今日見佢d透氣聲細返好多, 但係都仲要用豬鼻, 佢好忟憎, 一忟條氣又扯返.....:cry: 醫生不停餵訓覺藥佢食, 令到佢好似迷迷懵懵咁

其實剛剛先做完腦手術, 真係唔想又插喉整第二樣,  好無奈!:cry:

超級魚

Fan Fan,

咁你有無攞假留係醫院?

朗朗都唔係好好, 星期五開始, 佢發燒, 食完退燒藥又再燒, 連續燒佐3日, 如果佢今日都唔退燒, 我會帶佢返聯合, 唉, 啱啱係醫院做完手術住佐3個禮拜, 我真係唔想佢再返去又要抽血、又要插豆豆, 佢之前做手術時插豆豆d傷口剛剛先好返........我直情傷心到喊....:cry: :cry:

大家加油...
Anyway, 我祝福你聖誕節平安.....

超級魚

原文章由 fan-fan 於 07-12-23 00:45 發表
超級魚 & bell,

多謝妳地鼓勵!!

醫生下星期一會幫阿b入手術室全身痲醉check, 要搵個原因點解佢條氣咁扯,  今日見佢d透氣聲細返好多, 但係都仲要用豬鼻, 佢好忟憎, 一忟條氣又扯返.....:cry: 醫生不停餵訓覺藥佢食, ...

fan-fan

超級魚&bell

我返來喇, 阿b尋日終於可以出院喇....

不過佢依家條氣都係痲痲地....醫生果次照完鏡話佢喉頭下面比較窄, 要小心d餵食, 好易choke親, 依家refer去睇言語治療...

我由13/12開始冇返工到依家喇, 真係好彩有一個好老闆咁體諒我!!

腦科下星期再去覆診....

fan-fan

仲有你地囝囝囡囡身體好嗎?  天氣好泠, 大家保重!!

BELLFOK0318

超級魚 & fan fan ,

最近我忙於搬新屋問題~~ 因為我們將會搬 , 不過都係搬返官塘 ,

間屋剛剛裝修好~~ e+等置野~~ 希望過年前搬到啦~~

亞女最近身體 so far so good , 呢幾日天氣凍左 , 我都中左傷風 , 個鼻好塞......

fan fan--- 你亞b終於可以出到院喇~~~ 恭喜你呀~~~
不過真係要係餵食方面小心d , 多加留意!!!!

超級魚--- 朗朗e+點呀~~~ 希望佢可以快d好番啦~~

新年快樂~~

bell~

超級魚

Bell & Fan Fan,

Bell, 搬屋搬成點呀, 我都有搬, 不過搬房, 我張開主人房比佐囡囡、工人姐姐、婆婆和朗朗, 我地兩公婆就要間細房, 最近忙住買傢俬。

朗朗自從做了人造口手術, 效果很好, 短短1個月重了2磅, 而家patpat有d肉, 好好睇....

fan fan, bb近來點, 條氣好d未....

超級魚

原文章由 BELLFOK0318 於 08-1-4 09:55 發表
超級魚 & fan fan ,

最近我忙於搬新屋問題~~ 因為我們將會搬 , 不過都係搬返官塘 ,

間屋剛剛裝修好~~ e+等置野~~ 希望過年前搬到啦~~

亞女最近身體 so far so good , 呢幾日天氣凍左 , 我都中左傷風 , 個鼻好塞.. ...

ndw

Pardon me, I type English faster than Chinese.  I am also a Mom of a CP child.  I have 2 girls now, the younger one, just 2 years old who has cp.  I am expecting the 3rd one to come in June.  I am also a working Mom.  My friend instruduce me to this site.  I read all the conversation at once for the last few hours.  I get to know SupperFish, Bell and Fan Fan from their sharing in this site.  Again, their story let me know that I am not alone.  Thank you for your sharing.  This is my first time using this site.  I do not know how to use this site yet.  So, just a short message this time.  

At last, I want to let Bell, SuperFish and Fan Fan know that I have been praying for you and your children as I were reading your sharing.  And I will continue pray for all of you.  
May God strengthen you all to face everyday's challenges.

-- d.w.

超級魚

Dear D.W,

I'm glad to see you here.....

我打中文好過作英文 , 所以我都係用中文同你聯絡好了.....

謝謝你的代禱和欣賞, 我相信, 我們只是香港cp小朋友家長的冰山一角, 我們的經歷也只是生活中的一點點。你的小朋友2歲了嗎? 該入學了, 在學校, 你會看到更多更值得我們欣賞的家長, 每一個小朋友無論他有甚麼不同的問題, 他們與他們的父母都值得我們鼓掌, 你同意嗎?

第3個小朋友就快要出生了, 要保重身體, 我也會將你的孩子記念在禱告中.... 加油...

超級魚

原文章由 ndw 於 08-1-9 17:40 發表
Pardon me, I type English faster than Chinese.  I am also a Mom of a CP child.  I have 2 girls now, the younger one, just 2 years old who has cp.  I am expecting the 3rd one to come in June.  I am als ...

[ 本文章最後由 超級魚 於 08-1-10 11:08 編輯 ]

ndw

Dear SupperFish
I agree with you and thank you for your prayers too.  I need it.  :
The special good part of this online support group is that we may seek support in many areas anytime we needed, as long as we have Internet accesses.  Our special needed child have occupied our daily life.  It is hard to catch a good moment to talk to other parents in school, or in the therapy center.
When our daughter, nw, was 10 months old, she had an static epileptic seizure (a seizure that would not stop).  The medical team in the hospital emergency room finally brought her out of the seizure and stabilized her after a period of struggle.  During that period, I was totally useless but just keep praying to God to save our daughter's life with tears coming down like shower and no voice could coming out from my mouth.  Thank God, at least my husband was strong enough to hold on her lovely little hand and speak softly to her.  Because of that emergency room and Children ICU visit, our daughter had a chance to take CAT Scan, MRI, blood exam... whatever it would help to find out the reason for her seizure.  And she also got to be seen by a Children Neurologist.  One of the key word in her diagnose is Polymicrogyria (go figure what is that fancy medical term mean).  It take me a while to find out what is that mean from an Internet web site:  http://health.groups.yahoo.com/group/polymicrogyria/  C.P. is just a form of the syndrome, according to the Neurologist.  

The good part is there was not any brain damage and it is non-progressive illness.  Just part of her brain did not develop properly. :-|
nw is 2 years old now, her physical ability is more like a 4 months 30 pounds old big baby. She does not turn over without help, does not sit on her own support.  The Children Physical Therapist (P.T.) and Occupational Therapist (O.T.) think because her muscle tone is too LOW. They do not have experience of how to treat a LOW muscle tone baby.  When I hold her, she is like a big sack of 30 pound rice.  If anyone want to do arm muscle exercise, welcome to hold nw. :idea:
However, there are many good part of her that I should focus on when I am down and give thanks to God. She can chew well on any kind of cube size food and swallow well.  She know how to prevent herself from being chock.  She can drink with an open cup.  She can see without glasses so far, no hearing problem. Also, with the Neurologist's prescription seizure control medication that NW takes daily, we have not need to visit the emergency room again.  No more epileptic seizure so far.
We have tried everything we could think of to help her development such as acupuncture, eat all kind of brain food, every kind of therapy we could think of.  N.W.'s Neurologist encourage us to try them all out and he does not see any harm on those we take.
It is long enough of a message for Today.
Thank you for your listening  
Bye Bye.  ~ dw. nw's Mom

超級魚

Dear ndw,

謝謝你的分享.....

看完你的分享, 令我回想起當初朗朗出生時的種種情景, 最記得在icu看到bb的時候, bb全身都要血, 因仍在急救中, 不能幫bb清潔, 情景仍好像昨天發生似的, 所以我明白, 當小朋友危急時, 家長的心情可以是如何......現在, 每當看到新聞知道有小朋友出事, 我就會為他們禱告, 求主憐憫他們, 就像主憐憫我一樣.....

朗朗6個月大時, 醫生評估朗朗為cp仔, 當時我的腦一片空白, 最記得一邊餵朗朗食粥, 一邊哭, 我埋怨為何上帝要讓我有這樣的一個小孩, 我身邊(連教會)都未遇到, 我的心痛得不得了, 但醫生鼓勵我, 不要跟別的孩子比較, 只要將bb的進展跟昨日比較就夠了, 我就用了這金句面對朗朗。

感謝主, 朗朗雖然歷經風雨, 但係, 我們一家十分平安, 每當朗朗入院, 我們就好像有打不死似的能耐, 通宵不睡仍有能力上班... 這就應驗了上帝的話: 我們何時軟弱, 何時就剛強......

朗朗現在5歲了, 不能說話、不能坐、不能反身、不能進食大粒食物只能進食流質和軟食物、不能企、不能行路, 不能安睡(要靠藥物), 很多的不能....

但朗朗能笑、能哭、能看、能聽、能發單聲表達、能發脾氣、能用口口進行流質食物, 這不就夠了嗎? 我們若多看這美好的優點, 人也活得快樂點....

再者, 上帝賜給我們一個寶貝女, 她十分愛鍚哥哥, 真的感恩.....不得不提的是, 我有一個好丈夫, 他的溫和和對我們的包容和忍耐令到整個家庭帶來溫暖。

謝謝你專心的看我的分享呢

超級魚

原文章由 ndw 於 08-1-10 14:51 發表
Dear SupperFish
I agree with you and thank you for your prayers too.  I need it.  ::" />:" />
The special good part of this online support group is that we may seek support in many areas anytime we needed, ...

[ 本文章最後由 超級魚 於 08-1-11 12:42 編輯 ]

ndw

Amen. 阿 們 ！
That is from 2 Corinthians 12:10 "Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ's sake; for when I am weak, then I am strong. " (New American Standard Bible)  

歌 林 多 後 書 12:10 (Chinese Union Version (Traditional))
我 為 基 督 的 緣 故 ， 就 以 軟 弱 、 凌 辱 、 急 難 、 逼 迫 、 困 苦 為 可 喜 樂 的 ； 因 我 甚 麼 時 候 軟 弱 ， 甚 麼 時 候 就 剛 強 了 。

NW has not yet roll, sit, craw, stand, neither she walked.   But we are like your family, a thankful heart is a happy heart.
Yes, I remember those heart broken days when we first learned how to accept these hard to take fact. The Neurologist at the ICU told us NW's in born Polymicrogyria and Cerebral Hypoplacia ( a subgroup of C.P.) has absolute nothing to do with what we did or what I ate from pregnancy to that point and we needed not to change anything (he probably told this to every patient's parents). His words cast out any of my possible guilty feeling when moving forward whenever I am struggle with the thoughts of what if I could have done differently. Yet, I still frequently cried at the following days when there was only me with sleeping NW in the hospital room. At home, I cried at the middle of many nights in the bathroom because I do not want to affect others family member's emotion. Many prayers, expressing my feeling and asking questions to God, my dear Heavenly Father, with tears coming out like a river. When I was in front of my old parents and my little daughters, I rely on God to hold up my peaceful calm face and be strong .
I did not complain to God. May be it is because deep down I am well know about the fact that God's love to me has shown on the cross. However I was still expressing my pity feeling to NW and I was afraid to see the physical hardship on NW. I was also afraid of my weakness could not handle what was to come. I hesitated to go through the physical hardship that is laid ahead of me and NW. Then God made me think of the book of 1 John 4:18 "There is no fear in love; but perfect love caste out fear, ..." Also the thoughts of God's grace and love is sufficient for me to use cast out my fear and worry and I am able to face Tomorrow again.
約 翰 一 書 4 :18 愛 裡 沒 有 懼 怕 ； 愛 既 完 全 ， 就 把 懼 怕 除 去 。
彼 得 前 書 5:10
10 那 賜 諸 般 恩 典 的 神 曾 在 基 督 裡 召 你 們 ， 得 享 他 永 遠 的 榮 耀 ， 等 你 們 暫 受 苦 難 之 後 ， 必 要 親 自 成 全 你 們 ， 堅 固 你 們 ， 賜 力 量 給 你 們 。

Now, I try not to focus on thoughts that lead me to worry because I know that I can not benefit any by being worry. Jesus taught me not to worry about physical life by his words 2000 years ago. Now, Weeks and months have passed, I cry less and less and be rejoys more.

At last, I copied down what my husband wrote in a email to thank all of our friends' support through prayers and many other ways just few days after NW's emergency room and ICU visit and her physical weakness was discovered.
"Thank you for your thoughts. I know God will give us the strength and be with us every step of the way. I am very optimistic, just know that it will be a long, hard struggle. But, isn't life a struggle much of the time and full of pain. So, there is a blessing in the struggle and what it produces in us and others. I hope we can be of encouragement to others when facing their problems and I know others will be there to encourage us."

~ dw, nw's Mom

fan-fan

超級魚

阿ｂ條氣比之前好左ｄ喇，不過都仲係好大聲, 尋日腦科覆診都ok, 醫生話好滿意 :
不過唔知點解, 阿b自從做完手術後, 有時無端端就放聲大喊, 喊親都成個鐘.... 喊到有時塊面都轉色, 有時喊到嘔....

下週天氣又轉泠了, 大家小心身體!!

fan fan

原文章由 超級魚 於 08-1-8 11:11 發表
Bell & Fan Fan,

Bell, 搬屋搬成點呀, 我都有搬, 不過搬房, 我張開主人房比佐囡囡、工人姐姐、婆婆和朗朗, 我地兩公婆就要間細房, 最近忙住買傢俬。

朗朗自從做了人造口手術, 效果很好, 短短1個月重了2磅, 而家pat ...

fan-fan

ndw

係由阿b出生之後的日子裡面, 身邊好多人都俾左好多支持我, 加上我係呢度認識到超級魚, 阿bell, 依家仲有妳, 我知道我不再孤單, 因為我有同路人和我一起.....

多謝你的支持和分享!!

fan fan

ote]原文章由 ndw 於 08-1-9 17:40 發表
Pardon me, I type English faster than Chinese.  I am also a Mom of a CP child.  I have 2 girls now, the younger one, just 2 years old who has cp.  I am expecting the 3rd one to come in June.  I am als ... [/quote]

ndw

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 ar B.  I hope you may find a way that would work well for comforting ar B when he cry like that.  So ar B will stop crying in the early stage and will not escalate to throwing up and having purple face.  :cry:

Anyway, you may keep a note book just for ar B.  Mark this question down.  When you visit ar B's doctor next time, bring the note book with you so you will remember to mention this to his doctor.

Here is just my ndw's theory.    Your ar B. may feel uncomfortable somewhere in his body as a side effect from the operation.  So, ar B may be in the stage of learning how to adapt this new feeling.   I remember when I was a young girl, I have an appendix cut off operation.  Even the operation went successfully, but afterward, my intestine developed to easily stack together too much and cause my adamant (bally) pain.  I often missed school because of that.  After a while, I learned how to cut down the level of pain and let the pain go away quickly by finding a most comfortable sitting or sleeping positing and do not move anymore until after the pain was gone for a while.  Later, I learned how to adapt this new body situation.  I found out whenever I eat too much in a meal, drinking ice water in a cold weather.... my intestine would stack together.  So, I avoid doing all those thing that trigger my pain.  

When my other daughter was a baby,  I do three checks for her crying: Hungry? Burp? or Dirty Diaper?  If none of the above, then, check her temperature.

Take care.

超級魚

fan fan,

很高興又"見"到你啦, bb又過了一關 ,bb喊會唔會因為想摟抱, 我成日都安慰自已(朗朗都會成日摟計就用喊來表達, 一喊就喊成個鐘, 有時帶佢出街都好尷尬), 所以我會安慰自己, 佢喊, 起碼佢可以發聲, 好呀Q ), 咁你返工未? 無返咁來工, 一定好忙....

加油
超級魚

原文章由 fan-fan 於 08-1-12 00:11 發表
ndw

係由阿b出生之後的日子裡面, 身邊好多人都俾左好多支持我, 加上我係呢度認識到超級魚, 阿bell, 依家仲有妳, 我知道我不再孤單, 因為我有同路人和我一起.....

多謝你的支持和分享!!

fan fan

ote]原文章由 ...