Sunday, July 29, 2007

I'm back I'm back

Yes, we're back!
will post more soon! learnt so much last week :)
thanks be to God!

The Special Mother

jus to share
last week i was at a seminar for what to do with your brain injured child and during the seminar lectures, this letter was read and it brought tears to my eyes so i came back and did a search and
i got this from the net
http://www.our-kids.org/Archives/Special_mother.html
enjoy.

The Special Mother

by Erma Bombeck



Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Wednesday, July 18, 2007

Missing In Action

If you find us as above...
it's because, I am crashing 2 weeks work in one coz i need to attend the week long seminar of "what to do with your brain injured child" and much as i like to post lotsa stuff, i really can't afford the time...
and yes, i finally got the confirmation again! Thank you Lord!
so u guys juz keep praying for us k! for jere's well being and of coz for me attending the seminar.

Love,
Mich

Monday, July 16, 2007

Flashback - Birth till discharge

before you freak out and wondering what happened again??? this is a post of the past that i had to write up to submit to the institutes to apply for a seminar so i thought i post it here as well. so this is what happened last year in 2006

Right after I birthed Jere, the neo natalogist Dr Simon Ng was called into the delivery suite to examine him, briefly told us about Jere's birth condition and had Jere wheeled straight into the Neo Natal Intensive Care Unit (NICU) I was not allowed to breastfeed him Baby J was scheduled for operation at 1600 hr to cover up the spine. Then at about 9 plus that morning, it was the first time we met Dr Choo Su May, the anaesthetist for the op later. Was given the greenlight to feed till 1330hr.

Baby Jeremiah had a smooth operation 5th July, 2006, yes the first day of his life to cover up the open neural tube defect and was on morphine till 5am, 6th July, the following day. At first Jere was laid prone to rest but due to the bouts of apnea (stop breathing)he was flipped over from prone to supine (on the back) hoping that there won't be any more such episodes. The doctors told us that breathing was slow. He had a plastic box over his head which they explained was the oxygen tank and MRI and blood count and other tests were ordered for him.
We were told that Jere had no Babinski reflex ( that is the doctor's term of running a key or tickling the soles of the foot and the toes should curl up). He seemed to have no feeling. There was also little or no anus puckering when the dr stimulated him near his bum. He also pee only when the nurses did bladder compression.
The doctor explained that this means his motor movement of his legs and feet, his bowel and urinary movement are all affected.

On the 7th July the results were all out. Blood count ok MRI scan shows chiari malformation type 2, syringomyelia and myelomeningocele and an absense of corpus callosum(the bunch of nerves that communicates between the right and left brain) and mild hydrocephalus (water accumulating in the head) is seen. There is also more than normal water in the spine, supposedly due to the syringomyelia.
Good news is later that evening, no more episodes of stop breathing and he was allowed to take 5ml of ebm every 3 hourly. The doctor was monitoring his liquid intake as there is more than normal amount of water in his head and spine.
On the 8th July, 3 days post op, the nurses said he had slight jaundice and had to be put under the light. Other than that, his recovery from his op was uneventful.

On the 9th July, Jere stepped down. His condition was more stabilised and they moved his bed. There are different classes. The class he is in now is more stable kind... without the oxygen tank and what nots...though still in neo natal intensive care unit (NICU).

2006 12th July Jerry is done with his antibiotics. Plug taken off. Doctors are monitoring him for another two to three days about what I have mentioned before, water system in head, spine and suspect of leakage at his operation wound site.
2006 13th July In the morning we were told there seemed swelling at the operation site. Neuro surgeon is monitoring for leakage. Doc says there is water that just wont drain off. Usually it should go into the blood stream but seems like it's not happening. The swell and bulge could also be due to water leaking coz there was not enough tissue to cover when the op was done as bb jerry was only less than a day old then.
Afternoon about 1600hr, the neuro surgeon Dr Tang called to say that he had to schedule Jerry in for an op to repair the leakage at 1900. We pushed him into the operating theatre at 1915. At 2215, Jerry finally was pushed up. Dr Tang said no problem and explained he had put in artificial tissue and glue and Jerry would be put on antibiotics for next 7 days and be observed.
2006 14th July Baby J was still in the warmer and a little fretful so paracetemol was given.

2006 15th July Dr Tang called to say that fontanelle is soft but head circumference is 35 cm and to continue monitoring. He is on drip by the foot as his hands swelled. Looking hungry but not allowed more milk as they are monitoring the liquid

2006 16th July Dr Tang called to say the fontanelle is sometimes tense and bulge at the operation wound and explained that could be due to the water up in the head and to KIV a CT scan tomorrow. Other than that the wound looks alright and no fever.
2006 17th July Dr Tang said could hold the CT scan. Jerry’s head circumference increased to 37 cm from 35.5 and Dr Koh say that it's obvious there is water. Scan results is out. Dr Tang says does not warrant a surgery yet. Praise God.
Now monitoring head circumference. if it stays that way, Dr say will let it be. Dr also says pray for the op wound to heal nice as it shows a little bulge. on a positive note, so far lab tests for bacteria is negative which is good news.
Praise the Lord. Jerry's now weighin 3.8kg from his 3.37kg at birth on the 5th july.
He smiles when we talk about him or talk to him. His wound seems a little bulging now according to Dr. May be fluid inside....
2006 19th July Jerry condition is stable. Head circumference remained constant. Praise the Lord! Today last day of antibiotics. To be under observation for next three days. Please pray for no complication and infection so jerry can come home this weekend. He is two weeks old today. no news from doctors = good news i would say.

2006 20th July Done with antibiotics. Plug will be removed today. will be given bcg and hep vaccination. Please pray against all complication and infection so that jerry will be discharged soon. As his spina bifida's condition may affect from his waist down, tomorrow jerry will be doing an ultrasound on his kidneys.
2006 21st July baby Jeremiah Liauw is discharged back home after two ops and sixteen days in Neo natal intensive care.

2006 24th July It's been a little madness as we try to maintain the cleanliness of his op wound as it's so near to the buttocks that when bb jerry poos, sometimes it gets to the wound. And though the dressing is supposed to be water proof, it somehow seeps in. then it's crazy for us as we try to take the dressing out and change the new one. It’s so painful for jerry and so painful for us to see as well. We use an 8 by 5 dressing for the op wound so that is about how big the wound is. God please grant jerry complete healing.

This wed 26th, jerry is due to be checked by the pediatrician.
Thurs 27th, we got a referral letter to be seen by the pediatric surgical dept in kkh
Fri 28th, jerry is due to remove his stitches of his operation. Please pray against leakage and all complications.

So far, what I know of jerry's case is it's myelomeningocele ( the more serious case of spina bifida), syringomyelia (related to Chiari Malformation) and chiari malformation type II.
Also, there is absense of corpus callosum which worries me as i read that it's the nerves that communicates between the right and left brain.
As for his no control over his bladder and bowel movement, please continue praying. It’s probably caused by syringomyelia which is something like a cyst growing on the cervical cord. In Jerry's case, his MRI scan shows syringomyelia in the lower cervical cord extending along the entire length of the cord. This syringomyelia also cause the obstruction in the normal flow of cerebospinal fluid (CSF) thus, we hear of fluid in the spine as well as the head (hydocephalus)

Please continue to pray for Jeremiah Liauw
2006 27th July Yesterday went to kkh.
Did urine culture and urine analysis tests. Results not out. It was so hard trying to catch his urine as he was laid down and we just waited and of coz he was not comfortable so he cried throughout.
appointments were given for several other tests of which all are intrusive



2006 28th July Baby Jerry went to remove stitches today.
Really stressful for bb, dr, nurse and mummy.
Mummy went with bb J.
He was not sedated or anything, just some lotion applied before removing the stitches.
He was crying throughout.
finally doc removed some and said to return on mon (31/ to remove the rest.

What’s lined up for Jerry?

Aug 1, Tues - Micturating Cystogram (MCU) A fine tube will be put through the urethra (the hole thru which urine is passed) with a special solution running slowly thru the fine tube into the bladder. x rays films are taken by the radiologist durin and after the procedure.

Aug 8, following Tues - Urodynamics (UDS) a cold liquid is used to clean the part where pee comes out from (penis) then some numbing gel will be applied then a small tube will be inserted into the bladder and another small tube that goes in through the anus. it will be monitored for about 15 min then the child is to pee out.

Aug 21 Mon - Nuclear Medicine Treatment (DMSA) a nuclear medicine (radioactive agent) or (radiopharmaceutical = a chemical compound that contains a small and safe amount of radio active substance with a very short half-life which means they cease to be radioactive within a day) is injected into the vein of the child. Images are then taken either immediately or within the next few hours. the child will be positioned on a special detector called a gamma camera which picks up signals from the radiopharmaceuticals the child received.

all the above are tests from the urologists as spina bifida cases tend to affect waist down so they need to find out how well is the bladders, kidneys, etc.

Please pray for BB Jerry.
I know it's gonna be painful coz my dad been through those with the tube inserted thru the penis and anus. my dad has a high threshold of pain such that he can do a colonscope without being sedated or taking any pain relief but he was screaming through out the procedure where they insert the tube in his penis and anus even after taking panadol and the so called numbing gel.
Please pray for positively good results

then bb jerry will return to doc and get further blood tests.

Please continue to pray for bb Jerry and us as in our family. This really needs so much strength and I tell myself everyday I will not be beaten! I will not fall and I won't fail my God, jerry and of coz all that are behind me which includes all of u. Thank u again.

Uh oh!

Just got an email from the Glenn Doman Institutes that they have not received my detailed report as it seems and though they did confirm me thru email, i am not confirmed until they received the requested information and i had a phone interview with them. so I just sent them again. Pray they get it this time.

Sunday, July 15, 2007

The best thing that ever happened to me....

....is having my two wonderful boys! REALLY!

when i am tired and they smile at me.... everything's ok

when i am shouting for help and there's nobody else around and nat comes.

when nat apologises when he was a little exasperated with me for calling him ten thousand times to fetch this and that for me while i washed jere.

thank you Lord for these wonderful blessings in my life.

Thursday, July 12, 2007

Watch it KorKor.... I'm coming!!!!

 


Check this out!!!

Our little friend Jeremiah is growing fast and going fast too at his big bro Nat's food!
watch it! i am coming....
I used a little bolster to kinda prop him up as he tries to crawl and the food in front that his big bro is having definitely is a great motivation for him to move forward.
yes. do keep jere in prayers that the little one will crawl walk, skip and run :)
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Wednesday, July 11, 2007

Yippee!!!!

Mummy... me have been accepted for the "What to do with your brain injured child?" seminar! After all the application writing of essay and sending of pictures and reports... FINALLY ACCEPTED. Praise the Lord! I really hope that this course is gonna help me to take Jere to greater heights with his development!

Monday, July 9, 2007

Flashback - Labour and Delivery

In case you're wondering why I am writing about the past, this is because I gotta submit a detailed description of pregnancy, labour and delivery to apply for the "what to do about your brain injured child" seminar.
so here goes...

Labour and Delivery

2006 Jul 4 Had mild contractions from morning. Not regular. Still can walk.

6 plus in the evening Contractions more close and uncomfortable. Informed sister to standby to take care of the older preschooler brother, Nat.

7 plus in the evening Sister and brother in law came to pick nat up.

8 plus, almost 9 Left home for the hospital.

9.15pm Reached hospital. Admitted and was sent straight to delivery suite. Changed into gown and was monitored for contractions.

10 plus pm Midwife checked for dilation. 5 cm! Enema given. Gynae was activated. Overheard from the nurses that the gynae asked the nurses to put a drip for me and to burst my waterbag but I refused. All natural, I said.

11.20 pm Gynae Dr Goh came in and burst my water bag. Said baby head high up and told me high risk and said must put life line otherwise later hard to find vein. I refused. Dr Goh seemed exasperated trying to convince me. He left the suite asking me to think about it. Dear hubby Tim and I discussed and we prayed as I was not comfortable about being poked at all.

11.45 pm Could feel baby moving. Contractions got really stronger. Asked for gas.

2006 Jul 5
Midnight Super painful. Midwife checked and said already 8-9cm and called for the gynae.
0045 Jeremiah aka Jerry was born weighing in at 3.37kg, 51 cm in length and a head circumference of 34 cm
au naturale birth :) juz like what i had for nat, my first born almost the same process .... admitted hospital around the same time and birthing somewhere past midnight. This time even better than nat in the sense that i had no pethidine injection at the thigh and feeling bruised thereafter and it was an unassisted birth as in no forceps or vaccuum was used. Praise the Lord!

Neo natologist was called in to check on Jerry and we were told that Jerry had a condition of Spina Bifida and he was wheeled straight into the Neo Natal Intensive Care Unit

The story continues at Jeremiah trackback section. http://amothersjourneyinfaith.blogspot.com/search/label/Jeremiah%20Trackback

Flashback - Pregnancy

FLASHBACK FLASHBACK FLASHBACK

It's strange how I am forced to dig out my diary and document it all down. Had to do this for the upcoming seminar that I have registered to secure my place.

Here it goes

Pregnancy
2005 Oct 28 Tested positive on HCG test. (Gave the test kit in a anniversary card to dear hubby Tim. Boy! you guys should have caught his face! It was our 4th year traditional wedding anniversary)

2005 Oct 29 Saw the gynae Dr Goh but could not see anything with the abdominal scan. Turned down an internal scan.

2005 Nov 5 Saw pregnancy sac with abdominal scan this time at gynae’s. Dr Goh said implantation ok. To return in 3 weeks.

2005 Nov 18 Saw the gynae Dr Goh earlier by 1 week as my car got banged by another in the carpark as I was inching out of my lot. Dr Goh did a scan and cleared everything and to monitor next 3 days. No negative signs. Asked to return next week to monitor.

2005 Nov 26 Saw Dr Goh. Everything seems ok. Gained a total of 1.4kg at 8 week 5 day gestation. Had been having loose stools and bloat.

2005 Nov 27 Temper’s very bad. Still very bloated and very loose stools.

2005 Nov 28 Consulted family physician, Dr Hing and was prescribed rest, loperamide for diarrhea, Buscopan for pain, Meteorspasml for wind and cramp. Called the gynae Dr Goh to check if medication was ok. Was advised not to take meteorspasml. Took the rest of the medication and slept all day. Cramps still persisted.

2005 Nov 29 Called the gynae Dr Goh again to check but gynae outstation.

2005 Nov 30 Consulted another Gynae Dr Paul Tseng. Was prescribed Losec and 3 days medical leave but I had my misgivings about the medication so did not take the medication and just rested.

2005 Dec 1 Still gassy and bloated but did not take Medication.

2005 Dec 2 Still feeling as bloated.

2005 Dec 17 At 11weeks 1 day gestation, a total weight gain of 1.2kg. Foetus measuring 4.6cm.

2006 Jan 7 At 14 weeks 1 day gestation, a total weight gain of 2 kg. Foetus measuring 8.4cm.

2006 Feb 4 At 18 weeks 1 day gestation, a total weight gain of 5 kg. Foetus measuring 13.2cm.
2006 Mar 4 At 22 weeks gestation, a total weight gain of 7.3kg for mummy and baby estimated weight to be 495g. Blood test results were out. Dr Goh said it’s all ok. Did not proceed to do detailed scan as Dr Goh said it was optional and not necessary since we were young, should be fine.

2006 Apr 9 At 30 weeks gestation, a total weight gain of 11kg for mummy and baby estimated weight to be 1.5kg

2006 May 20 At 33 weeks gestation, a total weight gain of 13.7kg for mummy and baby estimated weight to be 2.5kg. Blood pressure at routine check up with gynae shows ok. However, Dr said sugar level a little high, maybe due to the little more ice cream I have consumed. Gained too much weight, almost 3 kg in 3 weeks. Blood volume also low so was advised to take iron tabs.
2006 Jun 1 Routine check up with gynae. Lost 1.9 kg in 2 weeks with a nett weight gain of 11.8kg for mummy. Baby estimated weight at 2.6kg.

2006 Jun 16 Routine check up with gynae. Total weight gain of 13.5kg for mummy. Baby estimated weight at 2.8 - 2.9kg.

2006 Jun 23 Routine check up with gynae. Total weight gain of 13.4kg for mummy. No more scanning of baby. Heartbeat ok.

2006 Jun 30 Routine check with gynae. Total weight gain of 13.5kg for mummy. No more scanning of baby. Heartbeat ok.

well, if i have not answered your question, no, the problem that jerry has was not diagnosed prenatally.

Flu-ey

Fever's gone by Fri evening but little Jere's nose seemed a little runny...
through sat and sunday.
He was sleeping still when i left the house this morning.
Pray that the flu leaves and the coughs that seemed to be coming wont make its way here... AMEN!

Thursday, July 5, 2007

Jeremiah's Birthday

What did we do?

On the 5th when Jeremiah turned 1.....

Tim and I made an effort to go home before he sleep but instead ended up as usual around 7 plus 8. We quickly finished our dinner,took out all his pressies and the cake left from our family gathering last sunday, stuck a candle in and sang a song. He was still running a slight temperature of 37.7 so we juz gave him a little cake before giving him his paracetemol and putting him to bed.

Thank You Lord for this day, for giving us this little precious baby. Lord we pray that you watch over little Jeremiah and lay your healing hands upon him and restore him to perfect health. This we pray in Jesus name. Amen.

Jeremiah's 1 today!

Exactly 1 year ago, many of you had expected our sms to announce the arrival of our bundle of joy. Indeed the sms came along announcing the birth or our little Jeremiah and asking desperately for your prayers as Jeremiah fought on in the Neo Natal Intensive Care Unit. He was a special baby born with a congenital defect spina bifida myelomeningocele in other words, also known as open neural tube defect exactly 1 year ago. He stopped breathing on us so many times after his operation right on the 1st day of birth in the Neo Natal Intensive Care Unit and survived thanks be to God and to the many angels He sent around praying, rallying behind us and blessing us in many ways.

Yeah! Jeremiah turns 1 today!!! Praise the Lord!!!
Today we celebrate Jere’s first birthday as we shout for joy and look back how far we have come! We are so privileged to have been entrusted little Jeremiah and to be called to walk with Jeremiah this journey. It had been a LONG journey. We give thanks to God for all His blessings amidst all the chaos, for showing us the springs in the wilderness, the rivers in the desert and also blessing us with all the angels around. Yes, we do not know what's gonna happen and what lies ahead but we choose to believe that God has plans for Jeremiah. Plans to prosper and not to destroy. God will restore Jeremiah to perfect health.

The more steps we take, the more comfortable this walk will become, and the more confident we will be of the destination of our walk. As we walk this journey, we have learnt to give thanks in all situations, to count the many blessings and to let Him lead. And ultimately that's what faith is all about. It is "the assurance of things hoped for"

Nothing is impossible and we can do all things through God who strengthens us.

Today Jeremiah is a healthy and happy 1 year old. Praise God! Other than his hips down being weaker and falling behind his peers in motor development and the so called bigger head that has more water than it should have, Jeremiah is a happy and healthy boy wonderfully made! He is alert, active and eager to live J, full of smiles and laughter. When he smiles, he smiles with all his heart and body. His muscle tone imbalance in his hips down due to his open neural tube defect means that he works so hard to crawl every little distance as he pulls with his arms in his commando crawl. He will walk, run and dance for the Lord. Our little hero, our warrior, our fighter! His determination is and will always be a source of inspiration and pride for us.


Thank you all for your wonderful support, prayers and blessings to Jeremiah and our family this past one year.

Please continue to lift Jeremiah up in your prayers for complete healing especially for his issues in the head, namely hydrocephalus, syringoemyelia, chiari malformation ii and his nerves that has been affected in the open neural tube defect to be restored especially hips down, his neurogenic bladder (displacement of urine), anus puckering (bowel movement) and motor development and sensation in his legs.

Thank you all once again. Thank you for being here and there for us people! Words can't express our gratitude. God bless.



Love,
Mich, Tim and Nat

Wednesday, July 4, 2007

Fever :(

At 4 plus this morning, somehow felt jere was a little hot. Asked tim to get the thermometer and indeed he was running a temperature of 38.5
quickly administered nurofen and sponge him, and searched high and low for the water cushion to let him sleep on. By the time i return to bed for a little more shut eye, it was already six plus and nearly time to get nat ready for school. anyhow, i got some shut eye till 7 and jumped up.

please pray that the fever gets banned away soon as the little one is turning one officially tomorrow.