Dearest Go Go and Ni Ni,
Yes! It has been a month since you were born, both of you are now one month old. Congratulations to the milestone, mommy is so happy for both of you. Coincidently, it is also Christmas Eve, happy 1st christmas to the both of you.
Your grandpa had originally wanted a big celebration this year, but because of Go Go's illness, we have decided to scale down on everything and have a simple family gathering.
Go Go, you are still recovering from the bout of pneumonia after being intubated again, your lungs were taking turns to collapse due to the infection where mucus plugs were blocking up your airways. You are now 2.440kg and on 50ml feeds every 3 hour. The hospital has removed your long line today. Mommy is praying for Go Go's breathing to improve and for Go Go to be able to move on to CPAP smoothly.
Ni Ni, your crying is getting louder everyday and you are drinking alot more milk these days .... it's so cute to see you putting on some weight around your cheeks. Your elder sis, Min loves to play with you and be around you so much, I think you are her new favorite toy.
Go Go, Ni Ni - mommy's wish for both of you is to grow up healthy, together. I love both of you so much.
Thursday, December 24, 2009
Wednesday, December 16, 2009
Lung Infection
Dearest Go Go,
At the moment as mommy is typing this letter to you, you are righting against the onslaught of a possible lung infection. This started after your CPAP episode. Your oxygen requirement has gone up to almost 80% and the oxygen saturation in your body has been hovering below 95%. Mommy knows that you are fighting very very hard with all your might against this terrible infection, fight on Go Go!!!
The doctors are covering you with 3 different anti-biotics while the blood culture results take some time to come out. A blood transfusion has also been planned for today in order to help optimize the oxygen levels in your body. Your right lungs collapsed yesterday and from today's x-ray seemed to have improved some what, however, your left lung has collapsed today. Chest physio is also pushing alot of mucus out from your lungs. Mommy is praying that you will recover from this infection very very quickly.
Dearest Go Go, one of mommy's dear friend, Auntie Bharathi came by to visit you at the hospital today. She brought along with her a pack of gift for you and Ni Ni, it's a very comfortable set of organic romper with a pair of socks. I am sure it will look perfect on you. Please recover quickly so you will get to wear this beautiful suit before you outgrow from it.
Mommy will be visiting you soon...... be brave Go GO...!!
At the moment as mommy is typing this letter to you, you are righting against the onslaught of a possible lung infection. This started after your CPAP episode. Your oxygen requirement has gone up to almost 80% and the oxygen saturation in your body has been hovering below 95%. Mommy knows that you are fighting very very hard with all your might against this terrible infection, fight on Go Go!!!
The doctors are covering you with 3 different anti-biotics while the blood culture results take some time to come out. A blood transfusion has also been planned for today in order to help optimize the oxygen levels in your body. Your right lungs collapsed yesterday and from today's x-ray seemed to have improved some what, however, your left lung has collapsed today. Chest physio is also pushing alot of mucus out from your lungs. Mommy is praying that you will recover from this infection very very quickly.
Dearest Go Go, one of mommy's dear friend, Auntie Bharathi came by to visit you at the hospital today. She brought along with her a pack of gift for you and Ni Ni, it's a very comfortable set of organic romper with a pair of socks. I am sure it will look perfect on you. Please recover quickly so you will get to wear this beautiful suit before you outgrow from it.
Mommy will be visiting you soon...... be brave Go GO...!!
Friday, December 11, 2009
Moving
Dearest Nicholas,
While performing some physio for you yesterday, mommy noticed some slight movement in your right leg yesterday and today, mommy saw slight leg movements in both your legs! Praise God! Mommy is praying that your muscle tone will improve over time....
The doctors finally relented and are giving you multi-vitamins (1ml), mommy hopes that this will prevent any infection from setting in.
As it turns out, the dr finally gave in to mommy and daddy's persistance and a PD neurologist from KKH visited you yesterday. The PD n suggested postphoning your extubation until a firm diagnosis is possible from the muscle biopsy.
Dr also updated the following today:
- The SMN1 gene testing results - turns out that it's 95% not SMA. Which is a GOOD news to us. Question is then , what is causing your muscle weakness. Dr are now saying it's myopathy, but they have no idea which sub-category.
- Muscle biopsy verbal results from the stains - most likely not SMA, but again, they cannot pin-point to any "usual" muscle disease yet. They are in touch with the neurologist.
- Myotonia testing - normal.
Prayers for today:
- infection to stay away. your immunity to stay strong.
- your feeding continue to be good with no aspiration
- your swallowing to improve
- lesser secretion in your mouth and in the breathing tube
- Most importantly, God's grace and mercy to be on you that you will be healed.
I love you so much Go Go ..... stay strong, we are all with you!!
Oh yes, mommy's friend, Auntie Lim Huey hand made 2 rosaries, one for you and one for Ni Ni and she made an extra anklet for you .... get well soon!!
While performing some physio for you yesterday, mommy noticed some slight movement in your right leg yesterday and today, mommy saw slight leg movements in both your legs! Praise God! Mommy is praying that your muscle tone will improve over time....
The doctors finally relented and are giving you multi-vitamins (1ml), mommy hopes that this will prevent any infection from setting in.
As it turns out, the dr finally gave in to mommy and daddy's persistance and a PD neurologist from KKH visited you yesterday. The PD n suggested postphoning your extubation until a firm diagnosis is possible from the muscle biopsy.
Dr also updated the following today:
- The SMN1 gene testing results - turns out that it's 95% not SMA. Which is a GOOD news to us. Question is then , what is causing your muscle weakness. Dr are now saying it's myopathy, but they have no idea which sub-category.
- Muscle biopsy verbal results from the stains - most likely not SMA, but again, they cannot pin-point to any "usual" muscle disease yet. They are in touch with the neurologist.
- Myotonia testing - normal.
Prayers for today:
- infection to stay away. your immunity to stay strong.
- your feeding continue to be good with no aspiration
- your swallowing to improve
- lesser secretion in your mouth and in the breathing tube
- Most importantly, God's grace and mercy to be on you that you will be healed.
I love you so much Go Go ..... stay strong, we are all with you!!
Oh yes, mommy's friend, Auntie Lim Huey hand made 2 rosaries, one for you and one for Ni Ni and she made an extra anklet for you .... get well soon!!
Thursday, December 10, 2009
Physiotherapy
Dearest Go Go,
Today the physiotherapist finally spoke to mommy and showed mommy how to perform some stretching exercises for your legs, feets, hands and arms in order to prevent them from getting stiff. While you were awake between 130 to 430, mommy stayed behind to perform some of these exercises for you ... I hope that you feel better after this :)
The dr are planning to remove your breathing tube tomorrow to try and see if you can breathe using the CPAP machine. They are against the use of BIPAP since they cannot find a mask to fit your size. Mommy is praying that your breathing will be good and can be sustained with the CPAP machine as having the breathing tube increases the risk of infection.
You have started on 40ml tube feeding and mommy is also praying that these are digested well, without much aspirates.
Dearest Go Go, mommy was happy that I spent so much time with you today and you were so alert looking at the ceiling, I wish I can spend more time with you. One day, when you are better, mommy will bring you home and we can spend all the time together with our whole family, wouldn't that be nice?
Stay strong my little Go Go!!
Today the physiotherapist finally spoke to mommy and showed mommy how to perform some stretching exercises for your legs, feets, hands and arms in order to prevent them from getting stiff. While you were awake between 130 to 430, mommy stayed behind to perform some of these exercises for you ... I hope that you feel better after this :)
The dr are planning to remove your breathing tube tomorrow to try and see if you can breathe using the CPAP machine. They are against the use of BIPAP since they cannot find a mask to fit your size. Mommy is praying that your breathing will be good and can be sustained with the CPAP machine as having the breathing tube increases the risk of infection.
You have started on 40ml tube feeding and mommy is also praying that these are digested well, without much aspirates.
Dearest Go Go, mommy was happy that I spent so much time with you today and you were so alert looking at the ceiling, I wish I can spend more time with you. One day, when you are better, mommy will bring you home and we can spend all the time together with our whole family, wouldn't that be nice?
Stay strong my little Go Go!!
Wednesday, December 9, 2009
Bacteria in Breathing Tube
宝贝世康,
The doctors increased your feeding from 25ml to 35ml today. Mommy is praying that you continue to digest these feeds well and that your reflux and secretion will be minimal.
Dr Tan informed mommy that they have noted colonization of bacteria in your breathing tube and that has gotten mommy really worried. To me, bacteria=infection, but the dr said that there is currently no need to change your breathing tube and no need to cover with antibiotics since you are not showing signs of any infection. Isn;t there anything they can do before something happens???? I do not understand the logic.
Mommy is praying that:
- the bacteria will not be harmful to you in any way
- pls give the doctors wisdom to treat you
- infection will not attack you
- you continue to digest your feeds
- slowly, you can breath on your own
Please pray along with mommy.
The doctors increased your feeding from 25ml to 35ml today. Mommy is praying that you continue to digest these feeds well and that your reflux and secretion will be minimal.
Dr Tan informed mommy that they have noted colonization of bacteria in your breathing tube and that has gotten mommy really worried. To me, bacteria=infection, but the dr said that there is currently no need to change your breathing tube and no need to cover with antibiotics since you are not showing signs of any infection. Isn;t there anything they can do before something happens???? I do not understand the logic.
Mommy is praying that:
- the bacteria will not be harmful to you in any way
- pls give the doctors wisdom to treat you
- infection will not attack you
- you continue to digest your feeds
- slowly, you can breath on your own
Please pray along with mommy.
Tuesday, December 8, 2009
宝贝世康
宝贝世康亲爱的世康,
Mommy just visited you and have so many things to tell you...... Mommy chatted with you for more than an hour today and I know that you can hear me because your eyes were open.
When mommy requested for the nurses to shift your position to the spinal position, I think you did not like it because there were tears in your eyes. How I wish I can hear you cry, my poor child. You probably did not like being disturbed or the position was simply uncomfortable for you. I am so sorry for having to put you through all these... forgive mommy.
Mommy can see that you are a fighter from the look in your eyes and in mommy's weak moment, mommy felt sad that a bright boy like you should be trapped in your body. .... who am I to say that? God has the final say.
Min Min Jie Jie Turns 5!!! 8 Dec 2009
Your Jie Jie with her beloved present. The one which she did not open for for 2 months!
This is you, Go Go, yesterday night. Your eyes were wide open when Daddy and Mommy spoke to you.
A picture of your little twin sister, Ni Ni to cheer you on!! Ni Ni says, " Gor Gor, we are waiting for you to come home!!"
Presents for each of you from your "Gu Gu" from Taipei, see how blessed we are.Mommy's dearest Go Go,
Today is yet another special day, we have lots of special days these few weeks :) Your Jie Jie turns 5 today!!
Jie Jie was very excited when she woke up this morning because there was this Barbie doll present which mommy bought for her about 2months ago and it was all wrapped up.. Jie Jie being the good girl she is has resisted opening it for 2 months and was very happy when she could finally open it up :)
Time seems to have flown by so quickly, sometimes mommy hopes that time will freeze or slow down a little for me to catch up more with your Jie Jie. Here's a picture of your Jie Jie with her present, look at how happy she is!
It is mommy's wish that one day the 3 of you will be playing happily at home - together.
Prayers for today:
- God please bless Min Min, Ni Ni and Go Go with good health
- God please bless their grandparents and aunties and other extended families with good health
- God please help Go Go digest his tube feedings well as Dr have increased his feeds to 15ml every 3hourly. Please let the aspirates level remain low.
- God, please help Go Go's muscles strengthen such that he can slowly breathe better and be off the ventilator and move to either CPAP or BIPAP
- God, please help Go Go's muscles strengthen such that he can swallow on his on.
PS - when mommy and daddy visited you last night, your eyes were wide open and you appear much more energetic. Keep it up my little one!
Some information about tube feeding:
Monday, December 7, 2009
Nicholas's Baptism
Nicholas dearest,
Today is a very important and meaningful day. You received the sacrament of baptism and is now freed from the power of darkness (original sin) and brought into the realm of the freedom of the children of God, to which all men are called....
Fr John-Paul came to the hospital for the baptism. Your Gong Gong and Xiao-Yi came to witness this special occasion and unfortunately your Er-Yi is tied down with work, she sends her love and said she will visit you tonight. Your PoPo can't be there too because she's helping to take care of Ni Ni. Your Jie Jie is away at a specially sponsored camp.
Today is a very important and meaningful day. You received the sacrament of baptism and is now freed from the power of darkness (original sin) and brought into the realm of the freedom of the children of God, to which all men are called....
Fr John-Paul came to the hospital for the baptism. Your Gong Gong and Xiao-Yi came to witness this special occasion and unfortunately your Er-Yi is tied down with work, she sends her love and said she will visit you tonight. Your PoPo can't be there too because she's helping to take care of Ni Ni. Your Jie Jie is away at a specially sponsored camp.
Your Xiao-Yi is your god-mother officially - now rests an important task on her shoulders :)
Mommy's heart was warmed that your Daddy was there and readily participated in the baptism as a parent. Daddy will be back to work tomorrow and mommy needs to be strong when I am left along to visit you .... For you, for Ni Ni and Jie Jie, mommy will be strong, because you are even stronger than mommy. Since you have to go through all these pain, how can mommy display any weakness? We will walk this path together....
Just as we left the hospital around lunch time, the nurses said your tube feeding will be increased to 10ml every 3 hourly. We are praying that you can digest the feed well with no aspirates. Stride on Go Go!!!
============================================================
Peter explained what happens at baptism when he said, "Repent, and be baptized every one of you in the name of Jesus Christ for the forgiveness of your sins; and you shall receive the gift of the Holy Spirit" (Acts 2:38). But he did not restrict this teaching to adults. He added, "For the promise is to you and to your children and to all that are far off, every one whom the Lord our God calls to him" (2:39). We also read: "Rise and be baptized, and wash away your sins, calling on his name" (Acts 22:16). These commands are universal, not restricted to adults. Further, these commands make clear the necessary connection between baptism and salvation, a connection explicitly stated in 1 Peter 3:21: "Baptism . . . now saves you, not as a removal of dirt from the body but as an appeal to God for a clear conscience, through the resurrection of Jesus Christ."
"Now they were bringing even infants to him that he might touch them; and when the disciples saw it, they rebuked them. But Jesus called them to him, saying, ‘Let the children come to me, and do not hinder them; for to such belongs the kingdom of God’" (Luke 18:15–16).
Mommy's heart was warmed that your Daddy was there and readily participated in the baptism as a parent. Daddy will be back to work tomorrow and mommy needs to be strong when I am left along to visit you .... For you, for Ni Ni and Jie Jie, mommy will be strong, because you are even stronger than mommy. Since you have to go through all these pain, how can mommy display any weakness? We will walk this path together....
Just as we left the hospital around lunch time, the nurses said your tube feeding will be increased to 10ml every 3 hourly. We are praying that you can digest the feed well with no aspirates. Stride on Go Go!!!
============================================================
Peter explained what happens at baptism when he said, "Repent, and be baptized every one of you in the name of Jesus Christ for the forgiveness of your sins; and you shall receive the gift of the Holy Spirit" (Acts 2:38). But he did not restrict this teaching to adults. He added, "For the promise is to you and to your children and to all that are far off, every one whom the Lord our God calls to him" (2:39). We also read: "Rise and be baptized, and wash away your sins, calling on his name" (Acts 22:16). These commands are universal, not restricted to adults. Further, these commands make clear the necessary connection between baptism and salvation, a connection explicitly stated in 1 Peter 3:21: "Baptism . . . now saves you, not as a removal of dirt from the body but as an appeal to God for a clear conscience, through the resurrection of Jesus Christ."
"Now they were bringing even infants to him that he might touch them; and when the disciples saw it, they rebuked them. But Jesus called them to him, saying, ‘Let the children come to me, and do not hinder them; for to such belongs the kingdom of God’" (Luke 18:15–16).
Sunday, December 6, 2009
Tube Feeding
Your Gong Gong, Er-Yi and Xiao-Yi giving you support! Your Gong Gong and Po Po are there almost everyday....
Your Daddy talking to you...
Little Warrior back on the ventilator. Take your time darling, one day you will be off the ventilator.Go Go Darling,
Today, the nurses started tube feeding you with 5ml formula @10am. Mommy and Daddy rushed down @130pm to give you some of mommy's milk for the next few feeds. We are all praying that you will tolerate the tube feeding well this time.
For the 10am and 130pm feed, your aspirates were good the nurses say. Pray that the next few feeds will continue this way.
You opened your eyes when daddy and mommy visted you today. Daddy read a book about breathing to you while mommy massaged you. You enjoyed daddy's reading very much and daddy made a pact that he will read to you everyday. You are daddy's boy :)
Your great-grand ma, grand uncle and grand aunt-inlaw visited you today as well. Great grand ma was very happy to see that you were moving your shoulders and opening your eyes. That made her very happy and she's all ready to visit Hai nan island on 9 Dec, Wed.
Go Go, mommy wants you to know that you and our whole family are so so blessed because we have an extended family who cares so much about us. We also have good friends who really cares alot about us. Tong Hong auntie, Irene auntie, your Nai Nai, etc etc etc .... God really blesses us in many ways....
On our way to SGH today, mommy say alot of beautiful trees lining the entrance to SGH block 5 and mommy pray that one day, we can bring you out of the NICU and let you enjoy the beautiful trees and birds, which God has created. Praise God!
Today, the nurses started tube feeding you with 5ml formula @10am. Mommy and Daddy rushed down @130pm to give you some of mommy's milk for the next few feeds. We are all praying that you will tolerate the tube feeding well this time.
For the 10am and 130pm feed, your aspirates were good the nurses say. Pray that the next few feeds will continue this way.
You opened your eyes when daddy and mommy visted you today. Daddy read a book about breathing to you while mommy massaged you. You enjoyed daddy's reading very much and daddy made a pact that he will read to you everyday. You are daddy's boy :)
Your great-grand ma, grand uncle and grand aunt-inlaw visited you today as well. Great grand ma was very happy to see that you were moving your shoulders and opening your eyes. That made her very happy and she's all ready to visit Hai nan island on 9 Dec, Wed.
Go Go, mommy wants you to know that you and our whole family are so so blessed because we have an extended family who cares so much about us. We also have good friends who really cares alot about us. Tong Hong auntie, Irene auntie, your Nai Nai, etc etc etc .... God really blesses us in many ways....
On our way to SGH today, mommy say alot of beautiful trees lining the entrance to SGH block 5 and mommy pray that one day, we can bring you out of the NICU and let you enjoy the beautiful trees and birds, which God has created. Praise God!
Mommy received a reply from Dr H, recommended from Aunties Lily and Tong Hong. He recommended some massage for you which mommy is going to try immediately later on. Wait for mommy before you sleep for tonight!
PS - your weight has increased to 2.160kg! :)
Prayers for today:
- that you will tolerate the tube feeding well;
- that your breathing will improve and that you can move off the ventilator very soon
- your chest wall & swallowing muscles will improve
- that the genetic testing results will be negative
- your overall muscle will improve
I love you so much my darling.
Friday, December 4, 2009
Breathing
Dear Nicholas,
Daddy, Mommy, and Nicholas 
Nicholas on CPAP today, mommy's brave warrior, it lasted from 11am to 4pm.
The doctors took off your ventilator today @11am & put you on CPAP which allows you to breathe on your own while still having the neccessary air flow. Mommy was very hopeful, wishing & praying that your breathing will improve. In the doctors words, you were extubated.
However, at 4pm, blood tests showed that you have retained too much carbon dioxide and they will have to put u back on the ventilator. Mommy was naturally very sad .... well as the nurses and doctros say, you may have a chance again.... yes .... let's pray for that.
In the meantime, mommy is praying for your chest walls muscles to become stronger so you can start breathing without the ventilator which goes all the way into lungs via your mouth or nose & where oxygen is pumped to you. With the ventilator, the chances of respitary infections are very high ....
God please strengthen Nicholas's chest wall muscles and lungs. 
Nicholas's mucus and saliva being removed from his mouth because he is not swallowing well.
Dr also updated that the prelim muscle biopsy results are out and it is pointing to be either SMA, myopathy or myotonia.... mommy's world seems to be crumpling over n over again.... but I am still praying that the doctors diagnoses are wrong! Please....
I occurred to me that god is using you little Nicholas to teach mommy alot of survival and also strength. You are so tiny n fragile, but with a strong fighting spirit. Fight on my little warrior!!! mommy is with you...
Daddy, Mommy, and Nicholas It pains mommy to see all this needles and tubes in your little body. My little fighter.
Thursday, December 3, 2009
MRI Scan
Shi Kang's name card
Care Bear speaker from your Ah-Yis, Gong Gong and your Jie Jie Min. Your Gong Gong has lovingly been providing you with different MP3 music every single day.
Shi Kang after the MRI scan.
Mommy finally gets to change your diapers for you. This was the highlight of the day for me. I pray and know that I will get to carry you and bring you home one day.Shi Kang Dearest,
Today you went for the MRI scan of your brain and neck. This is to determine if there's any abnormity in those areas... doctors have advised that the risk in this procedure is an allergic reaction to the dye which will be injected into your body.
You were sedated for this procedure and after yesterday's episode on the muscle biopsy, mommy chose not to be there for the MRI. The doctors and nurses assured that they will take good care of you. Forgive mommy for not being there with you for the MRI scan.
You did not open your eyes today because you were very sleepy due to the sedation. Thank God that the MRI procedure went well.
Updates for today:
- your weight went up from 2.110kg to 2.115kg
- your jaundice level has gone down from 141 to 116 and you are no longer under the photo light
- you are still on the long line drip and have not started feeds since your stomach is still bloated and the aspirates shows high level of saliva and some dirt.
- the physitherapist has started physio on your chest to strengthen your chest muscles
Prayers for today:
- you will be able to breath on your own soon
- fight off any infections
- you will be able to restart on tube feeding soon
- your muscles will become stronger
- God's mercy to be on you.
Day 10
I shall start blogging from Day 10 since I may not find time to back track.
This morning Go Go was sent for the MRI tests. He being our strong little fighter, he tolerated the test very well. When we visited him after the MRI, he was sleeping soundly for the whole afternoon, an effect from the sedation which was given.
He is still on the ventilator to help him breathe, and is still on the drip for nutrition. His tummy is still swollen and the "aspirit" from his tummy still showed signs of "dirt" according to the doctors.
My strong fighter has a name now: Nicholas Chang Shi Kang. :) We have finally decided on a name for him. Nicholas - people of victory. We pray that Go Go will fight against this disease and be a strong fighter. Shi Kang - we pray for good health for our little prince.
I saw a note on the desk which indicated that the clinical diagnosis is Spinal Muscular Atrophy. The last few days has been hell for me and my whole family. I am torn between Go Go and Ni Ni and of course Min Min.
I ask myself alot of questions:
- why would God allow this pregnancy for someone who has such difficulty in getting pregnant?
- Why would God help tide us thorough this difficult pregnancy, only to allow us to find out about this disease after Go Go's birth?
- why why why??????? there are lots of whys ...... which I may never have the answer to.
I am secretly so afraid of losing Go Go anytime since the killer for SMA is usually respiratory related problems .... I do not want to have any negative thoughts, but they just keep coming. Are they from the devil? God please have mercy on this poor child...
What if our family never gets the chance to be together?? God please send all these negative thoughts away!
We have requested for Father John-Paul from St Marys to baptise Go Go next Monday 7-Dec.
Today we bounced off the idea of stem cell replacement to the doctors and they did not seem very supportive .... I need to find more information on this.
This morning Go Go was sent for the MRI tests. He being our strong little fighter, he tolerated the test very well. When we visited him after the MRI, he was sleeping soundly for the whole afternoon, an effect from the sedation which was given.
He is still on the ventilator to help him breathe, and is still on the drip for nutrition. His tummy is still swollen and the "aspirit" from his tummy still showed signs of "dirt" according to the doctors.
My strong fighter has a name now: Nicholas Chang Shi Kang. :) We have finally decided on a name for him. Nicholas - people of victory. We pray that Go Go will fight against this disease and be a strong fighter. Shi Kang - we pray for good health for our little prince.
I saw a note on the desk which indicated that the clinical diagnosis is Spinal Muscular Atrophy. The last few days has been hell for me and my whole family. I am torn between Go Go and Ni Ni and of course Min Min.
I ask myself alot of questions:
- why would God allow this pregnancy for someone who has such difficulty in getting pregnant?
- Why would God help tide us thorough this difficult pregnancy, only to allow us to find out about this disease after Go Go's birth?
- why why why??????? there are lots of whys ...... which I may never have the answer to.
I am secretly so afraid of losing Go Go anytime since the killer for SMA is usually respiratory related problems .... I do not want to have any negative thoughts, but they just keep coming. Are they from the devil? God please have mercy on this poor child...
What if our family never gets the chance to be together?? God please send all these negative thoughts away!
We have requested for Father John-Paul from St Marys to baptise Go Go next Monday 7-Dec.
Today we bounced off the idea of stem cell replacement to the doctors and they did not seem very supportive .... I need to find more information on this.
Wednesday, December 2, 2009
Muscle Biopsy
Dearest Sweet Heart Go Go,
Today's is probably one of the hardest day of mommy's life. Unexpectedly we were told around 230pm that you were to go through the muscle biopsy at 3pm. Due to a miscommunication between the hospital and your daddy, we did not know that the procedure was arranged to be @3pm and mommy was not prepared to let you go through this invasive procedure where a cut will be made on your thigh and some muscle removed for analysis.
The pediatric surgeon was from KKH and the muscle tissue will be sent to TTSH for analysis. Mommy knew that this was one the tests which may be required, but for me, it was something to be done at a later stage and probably not now, hence I was heart broken when told that we should still proceed with this test since it will complement the genetic testing results. Daddy wanted the tests to run concurrently so we do not waste time.
As they prepared the room for the procedure, mommy said prayers with you and I pray that the pain will not be too bad for you my poor child because you have not been able to cry to show your displeasure, uncomfort or pain, mommy was very worried about you post-op. The anesthetist was an unfriendly tomboy who insisted that a local GA is sufficient and ignored the fact that you were a special baby who couldn't cry. The other doctors assured mommy that you will be monitored closely based on your heart rate and breathing to ensure that you are not in much pain post-op.
The doctors hope to use the results of the muscle biopsy to rule out the following conditions:
- myopathy (muscle problem)
- to confirm if it's indeed SMA (there will be degenerative muscle fibres)
- myotonic dystrophy
The dept of neuroscience in TTSH will analyse your muscle, the neurons and fibres.
Prayer for today:
- that you will go through the procedure with no pain and discomfort
- that you will have no pain and discomfort post procedure
- you will recover very soon
- you will start to move more parts of your body
- you will breath on your own
- you will restart your tube feeding
Today's is probably one of the hardest day of mommy's life. Unexpectedly we were told around 230pm that you were to go through the muscle biopsy at 3pm. Due to a miscommunication between the hospital and your daddy, we did not know that the procedure was arranged to be @3pm and mommy was not prepared to let you go through this invasive procedure where a cut will be made on your thigh and some muscle removed for analysis.
The pediatric surgeon was from KKH and the muscle tissue will be sent to TTSH for analysis. Mommy knew that this was one the tests which may be required, but for me, it was something to be done at a later stage and probably not now, hence I was heart broken when told that we should still proceed with this test since it will complement the genetic testing results. Daddy wanted the tests to run concurrently so we do not waste time.
As they prepared the room for the procedure, mommy said prayers with you and I pray that the pain will not be too bad for you my poor child because you have not been able to cry to show your displeasure, uncomfort or pain, mommy was very worried about you post-op. The anesthetist was an unfriendly tomboy who insisted that a local GA is sufficient and ignored the fact that you were a special baby who couldn't cry. The other doctors assured mommy that you will be monitored closely based on your heart rate and breathing to ensure that you are not in much pain post-op.
The doctors hope to use the results of the muscle biopsy to rule out the following conditions:
- myopathy (muscle problem)
- to confirm if it's indeed SMA (there will be degenerative muscle fibres)
- myotonic dystrophy
The dept of neuroscience in TTSH will analyse your muscle, the neurons and fibres.
Prayer for today:
- that you will go through the procedure with no pain and discomfort
- that you will have no pain and discomfort post procedure
- you will recover very soon
- you will start to move more parts of your body
- you will breath on your own
- you will restart your tube feeding
Go Go, here is a picture of your Jie Jie Min and Mei Mei Ni Ni to cheer you on!! Get well soon, they are waiting for you at home!
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