I love you, Darling!

Whenever there is a birthday party in school, he will show me the party pack he got and tell me what kind of cake his friends were having.   At this age, he knows how to ask for things.  He told me he wanted a football cake and party pack for his friends. He even tell me what he wants in his party pack.

So I got Jerrica to make a football cake for him. Why football?  I really have not idea. He saw this football cake in Secret Recipe.  That was where is said he wants a football cake ONLY football.  The one in Secret Recipe had a scarf wrapped around the football. So he will always remind me that he wants the football ONLY.

Here are Jonathan’s friend in school.  They sang birthday song to him in 3 languages… English, Mandarin and BM.  Cute fellas. One of the children asked me if I am Jonathan’s sister or mommy. So funny…

Lucky boy is he. Loved by people around him. His cuteness overshadowed his mischievousness.  Never had I in my childhood received so many presents.

Jonathan boy, no matter how mischievous you are, you are always our little boy…our greatest pride and joy. Daddy and Mommy pray that you will grow up to be a God fearing child. We pray that you continue to stay healthy and safe.

And this is how he wants to eat his mooncake.

He finished up the whole mooncake?

Nah…he didn’t.

There was once he got angry when I sliced the mooncake into pieces. Unlike Daddy and Mommy, he dislike the egg yolk. Good…less one person fighting for the egg yolk.

So here wishing everyone, a Happy and Joyous Mid-Autumn. Enjoy yourself with your love ones.

For the last 6 months, many things happened and many places we’d been which I would like to share…Jonathan’s progress in school, Jonathan’s music class, our short excursion, an investment we had made,  and many more.  Hopefully in a next couple of days, there will some some interesting post lining up for my fellow blog reader.

Till then, have a nice day!

Dear Jesus, please help me to give my baby a kiss and a big hug. Tell her Daddy, Mommy and Jonathan kor-kor misses her a lot…

(This is one of the last pic I took of her before her final admission. My favourite pic and we had it on her tombstone. We photoshop away her feeding tube. She was so sweet and perfect.)

Infact, he is nothing different than most newbies. In the first week of school, he asked me to go to school with him, refused to enter his classroom, wanted me to stay with him, held my hand so tightly, sticked to me and cried when I left him there. But he was alright after some pampering from the teacher and principal. Despite that, he still love to go to school. He would come and tell me, “Mommy, I got school today”.

Second week was a total change of him. He put on his uniform all by himself.  I let him take his own sweet time in buttoning his shirt,  while I make up and dress up for work. He went down from the car willingly and held the teacher’s hand, said good morning to teacher and then waived goodbye to me.

He is into the 3rd month of schooling. This boy of mine is still excited about school and I pray that he will always be. But Mommy and Daddy is so stressed out every morning having to wake up a sleepy head.  I try my best not to make him grumpy else I’ll be late to work for entertaining a grumpy kid. When he got up from the wrong side of the bed, he refuse to bath, laze on the bed/couch, refuse to drink his milk, walk like a old man. When cupid strikes him, he talks, wear uniform on his own, take breakfast, carry his own school bag, wear his own shoe.

Funny things or angry moments happen every morning.  Overall, I am thankful and glad. My boy had stepped in to another phase of childhood.

May God’s love be with you and your family this Christmas. Blessed Christmas to all.

So not used to not having her around. She used to keep me busy – making her milk, sterilizing her bottles, keep watch of her feeding time, administering her medication, bathing her, nappy changing, washing, drying and folding her tiny clothes and organizing her closet.

Missed kissing her, stroking her head admiring her short fine hair, breastfeeding time, massage time, having her chubby cheek resting on my shoulder, watching her sleeping peacefully, cradling her in my arm and singing to her.

Readjusting my life, living without her and to never let the memories of Samantha fade.

In times like this, God’s incredible grace is there to pick us up, to revive lost hope, to heal broken hearts, and to strengthen us.  God has given to me two wonderful man before He gave me Samantha, for a purpose. That is to keep me going and never let me fall today.

I, take u, to be my husband, to have and to hold from this day forward, for better or for worse………to love and to cherish; from this day forward until death do us part.

When the doc told us that Samantha is very ill, Darling and I hold on to each other and said, “Let’s go through this together.” Darling had been very supportive throughout this period of uncertainty and pain. He understands my heart and my need. And now, we have each other to share the emptiness and grieve for our loss.

Samantha @ 2 months

God blessed us with Jonathan to keep us busy. He puts joy and laughter in our heart.  There was no chance for us to drop our tears in front of him.  He now knows that her little sister Samantha is with Jesus.  When asked, he will say, “Samantha is sick and die already. Samantha is in heaven now.” We still talk to him about her little sister Samantha hoping that she will always be in his mind.

Jonathan @ 31 months; Samantha @ 2 months (before her condition started to deteriorate)

Here, we would like to say thank you to all of you for your prayers and concern for our family. I felt so touched by all of your love for Samantha. May God bless you.

Jon: *beating Daddy* Mommy, Daddy naughty.
Me: Why Daddy naughty?
Jon: Because Daddy cannot love you.**********************

I just reached home after work…

Me: Where is Daddy?
Jon: Upstairs, bathe.
Me: Where is Samantha?
Jon: In PoPo’s hand. (my mom was carrying Samantha at that time)

She is now in God’s good hand. No more pain, no more fear but joy and peace of our Lord, Jesus Christ.

Will be bringing her back to Sitiawan tomorrow, to her Daddy and Mommy’s hometown, for burial.

Samantha…Daddy, Mommy & Jonathan kor-kor loves you. You will be missed dearly…

We admitted her to GHKL yesterday after noticing her breathing rapidly and lethargic. She was not her usual self and she looks weaker and not responding much. Her condition is not getting much better today. Her blood test results are worsening and she doesn’t seems well clinically.

We had a party for Jonathan 3 year old birthday on 10.10.2010.  A belated celebration as his actual birthday falls on a Friday. Some snapshots from the party. More in Facebook.

Engaged a face painter. At least got the kids and adults occupied with something. Check her out here.

Took this chance to meet up with some mommy bloggers…Chanel, MC, Yugene, Merryn , Joanne and Rachel.  Thanks guys for coming and the gift for Jonathan and Samantha.  And it was my first time meeting Chanel and Mchyl. Was so happy when they accepted my invitation.

So what is the takeaway from the birthday party?

No more birthday party for you, boy. I hope…

Our very first party was on his fullmoon. We had a food caterer for both events and the no. of guests was more of less the same. But we were not feeling as hectic as this time.  Kimmy and I were going around entertaining the guests. And you may or may not know that I am not a sociable person and will try to avoid it if I can. So that Sunday was like forcing myself to greet and talk to people I know and worst, people I’m meeting for the very first time. Just doesn’t know what to say and how to make them feel not lonely.  Sorry guys, for being a bad host.

We are planning to send Jonathan to school next year. Not that I think he is ready but I think he needs to learn to be more sociable. I would expect some crying sessions and refusal in the beginning, knowing him, my son! It’s happening in Sunday School.

Another reason (more of an excuse you’d say), I am unable to spend fun-time with him at this moment. My mind have many activities that I would like to do with him but regretfully can’t (if you understand the situation I’m in now). Not wanting him to miss out all these, and so I think sending him to school is another way for him to learn, pick up more things and most importantly, have fun.

And so, a bit late, we are scouting for a school for him. Few aspects that we are taking into consideration when looking for a school for him.

Location
Either close to our house or along our way to work so that either Darling or myself can drop him off school. May be a bad idea because there will be tendency that he refuse to get down from the car.

Time
School must open its door by 7.45am, else we will be late to work. If this is impossible, we have to find a transporter. May be a good idea so that we don’t have to wake the sleepy head up early in the morning.

Fees
School fees can be rather expensive nowadays compared to many years back. We don’t mind paying a little more but must be reasonable. But how much is consider reasonable?

What are other aspects that you think I need to take into consideration?

What are the things that I need to observe or ask during my visit to the school?

From my Mommy & Daddy:

Jonathan boy, you are our gift from God and we love you so much.
You are a smart and obedient boy,
you amaze us every day and bring joy into our lives.
May you always know that God loves you,
and that you are chosen to do good and wonderful things in your life.
And may the angels guide you, protect you all the days of your life.

Two months back when I asked him his age, he was still saying, “I am 2 years old.”
After some brainwashing from me, he will now say, “I am going to be 3 years old.”
I’m starting another brainwashing session for him to say, “I am 3 years old.”

When I asked him, when is his birthday.  He answered, “In the room.”  Because we got his 2nd birthday pic hanging on the wall of our bedroom.  I guess he is confused with “when” and “where”.  He answered it right occasionally…”October 8.”

We are planning to throw him a birthday party this year since he now know how to have fun. I showed him many designs of cake. Asked him to choose which one is his favourite.  He will go like, “Ermmm…I want Thomas Train.  Ermmm…I want Mickey Mouse.  Ermmm…I want action hero.” The next time you ask him again, his like changes.   He is so undecisive…like me!

A very impatient boy. Temporamental at time. When he couldn’t get something done, he gets agitated easily. I calmed and talked to him many times on this but still couldn’t “fix” this personality of his.

Still a shy boy. He needs warming up. Brought him for a Muzikgarten trial class and he refused to enter the room. Was clinging to me the whole session and refused to participate. He opened his mouth only towards the end of the class and gave the teacher a goodbye hug.

Timid. Fear of fire crackers and loud noises. When he sees Tinker Bell hiding underneath the flower petals or the big cat coming, he hid himself under the blanket too.

Despite all his mischievous act and temper, he is still an obedient boy and a great helper.  Of course he needed some pushing and encouragement sometimes.

Now that he is more vocal, I love to ask him questions to simulate his thinking. Sometimes he gave silly answers. Well, kid’s imagination.

These are some of the things about my boy…Mommy’s boy but spoiled by Daddy.

We brought her for follow up on Wednesday but got held back because her lactate went up and her bi-carb (HCO3) was low which is not very good.  Doc wants to normalise her lactate and bicarb. Moreover, she had not been gaining weight.  We can sense that she’s not doing good from the way she behaves or reacts.  Whenever her lactate is high, she is more cranky, restless and breath harder.

Generally these are some of the things the doc will be looking at every time. Other than that are liver function, thyroid hormones and hematology.

So you can imagine the amount of blood drawn from her each time. I hate it when she needs to be admitted. They will come after her blood everyday. I now call them VAMPIRE.

She gained 200g in the hospital so now she is 3.8kg.  I guess I should not miss her night feeding.

On a happy note, both her lower central incisors has erupted.  That is fast! I am not expecting it because all her developments were delayed.  She’s going to be 6 months in another week’s time but she is still like a less-than-2 months old baby.

She is now 5 months old based on her age. Physically she is like a 2 months old baby except that she is still quite floppy and unable to support her head yet.  Still wearing newborn sized diaper and clothing.

It has been a month since Samantha was discharged from GHKL.  She is tolerating milk via the feeding tube as mentioned in my earlier post.   I resumed breastfeeding so that my breast won’t be an alien to her and also to keep my BM supply going which has been decreasing.  We also offer her water through bottle to stimulate her sucking reflex and in case she is able to go back to bottle feed again. Her doctor disallow us to BF and bottle feed her as afraid that she may get choke but so far she has been taking it well. (Shhh…can’t let the doc know).

She gained some weight from 3.3kg to 3.65kg within a month.  Not much but this is consider a good progress despite her condition.  It will be a long way for her to catch up with babies of her age. She looks chubbier now. She can sleep better and for longer hours too nowadays. On and off, she still whine and cry unconsolably which could be due to colic, reflux or soiled diaper.

Talking about soiled diaper, Samantha is really a princess! She wants to be changed IMMEDIATELY once her diaper has soiled else she will not stop crying. Sometimes, she just want you to check on her diaper eventhough the diaper is not soiled.

Her big brother Jonathan adores her so much. He likes to kiss her, smell her, carry her, hold her hand and sleep beside her. He will take her hand to caress his face. And recently, I have no idea why he feels like biting her fist…love bite?

]]> http://www.bondedtogether.net/journal/2010/08/24/say-hi-to-samantha/feed/ 24 http://www.bondedtogether.net/journal/2010/07/18/whats-up-with-samantha/ http://www.bondedtogether.net/journal/2010/07/18/whats-up-with-samantha/#comments Sun, 18 Jul 2010 08:41:28 +0000 Julie http://www.bondedtogether.net/journal/?p=1309 Samantha is back home from hospital last Thursday after her readmission for 16 days. We hope the hospital won’t be our second home. It’s quite scary in the hospital as you would see all kinds of patients with some having metabolic disorder like Samantha. The first thing that came to mind is will Samantha be like them? If you know the prognosis of her medical condition, you’ll have the same fear as we do.

In summary, Samantha is suffering from a disorder called Mitochondrial Disease which also caused her lactate acid and PH to be very high. You can read more here as it’s too scientific for me to explained.  This disorder has affected her kidney, liver and brain at this juncture.

Initial abdominal ultrasound could not locate her left kidney and so they suspected that she has only one kidney but latter ultrasound managed to located her left kidney but it is very small. Since her renal profile are quite normal, they will perform a functional test later on her.

Her liver is enlarged. Current size is about 5cm compare to normal size which is about 2cm. The doctor are still monitoring her liver for any liver impairment for liver failure.

We had the MRI brain scan done for Samantha and the result shows that the part of her brain that controls her motor skills are badly affected.  Her eye may be affected as well as the brain controls the eye vision, movement and coordination.

Samantha has to go home with a nasogastric (Ryles) feeding tube.  Not what we expected but at this moment, we can see this is the best for her.  Most importantly, it can help to reduce her vomiting as tube feeding is a gentle way of feeding. She doesn’t have to use much energy as compare to sucking from the bottle because the milk and medicine/vitamin enters her stomach directly.  Tube feeding is common for children with failure to thrive.

Administering medication to her is much easier now as she doesn’t have to get agitated with the horrible taste. Feeding through the Ryles tube requires a feeding infusion pump that controls the delivery rate of the milk (75ml in 3 hours). This will restrict her mobility as she has to be hooked to the feeding pump for at least 3 hours. Another way is to use a Bolus (a type of syringe) but the flow of the milk is faster.

When we looked at other parents with their normal child, we are challenged mentally and emotionally. However, after all these, we are still glad and thankful.  We are unable to forsee the future and what is the life span for Samantha. What we could do now is to look upon God for His healing powers.  Take things one step at a time and appreciate the moments that we can have with Samantha without neglecting Jonathan.

p/s: To all the mommy bloggers, sorry for not visiting your blog as often as I used to be. Will do that once things are sorted out.

So what is the cause of her vomiting?  Like I mentioned in my earlier post, X-ray taken, ultrasound was done, MRI brain was done, blood and urine samples taken for tests.  Everything seems to be ok.  So the doctor concluded that her vomiting is due to her Mitochondrial Disorder.  People with Mitochondrial Disorder may have episodes of vomiting and migraine.  If this is the case, Samantha’s vomiting may relapse.  Nothing can be done to cure her vomiting. She may still vomit once a while but as long as she is not dehydrated or losing weight.  If the same vomiting relapses, the only thing that can make her better is the IV drips.  We hope there won’t be frequent visits/admission to the hospital.  All these while, her liver and kidney is not very good too. Do continue to uphold her in your prayer that she won’t have further illnesses.

Doctor adviced that due to Samantha’s special condition, she will need extra tender loving care at home. That would mean we are to not allow her to cry excessively, must pamper her, make her as comfortable as possible.  We suspected that her vomiting was also because she dislike taking some of the vitamins.  Because of this, doctor has reduces some of her vitamins temporarily so to not stress her too much.

Thank you all for your prayers.

However, doc still couldn’t find out what causes the vomiting. There are few causes that he is suspecting.

Pyloric Stenosis

As Jonathan had it before, Samantha had higher risk of having Pyloric Stenosis. They did an ultrasound on her abdomen again for Pyloric Stenosis. The scan came back negative and it also confirmed that there are no obstruction to her digestive systems.

Hydrocephalus (Water in Brain)

In my earlier post, I mentioned that doctor found water in her brain from an ultrasound.  It’s a condition called hydrocephalus. This can cause vomiting as well.  To confirm this, doc advised for a detailed MRI scan. The report came back negative. Basically, she does not have hydrocephalus. However the MRI report tells us something else which I will share later.

So the doc has ruled out the above two conditions. He almost come to a conclusion that her vomiting could be due to her acid level. Remember she was suffering from severe acidosis at birth which later confirms that she had mitochondrial disorder.  People with mitochondrial disorder may have episodes of vomiting, migraine and etc.  They took her blood and urine to test on possible infection also. Doc is now trying out medication and ways to prevent her from vomiting.