Sunday, October 31, 2010

26 Oct - 31 Oct 10

Charlene has been crying a lot. She cries once she's awake. The worst was on Wed and Thur when she cried 14 hrs each day. I was quite irritated though logically I knew it was not her fault. We did everything we could but to no avail. She just kept crying and crying and only stopped 5-10 mins or when she fell asleep.

On the other hand, she was constantly breaking record second by second. She didn't have any seizure since Tue 7am till Sat 945pm. That was the longest time in her life that she has gone without seizures; 110hrs and 45 mins.

All Praise and Glory Be to God!!!

Dez and I decided that we would bring Charlene to the miracle service in Lighthouse Evangelist Church. There is a special room for children with special needs so we don't have to worry if Charlene cries loudly as she will only disturb that few people in the room and not the entire congregation. Amazingly, Charlene did not cry throughout the whole sermon. And it seems like she was listening attentively.

This morning (31st Oct), she was awake at 7am so Dez and I decided to bring Charlene to church. If she cries very loudly, then we have no choice but to leave. We are thankful for the care and concern showered upon us by our fellow brothers and sisters in Christ. Our faith and spirits are also lifted as they prayed for Charlene and for us.

We still do not know what causes Charlene to cry so much. We will do our best to cater to her needs and pray continuously for God to heal her.

Monday, October 25, 2010

25th Oct 10

Today, we went to KKH for appointments; feeding clinic and neurologist.

The dietician was shocked by Charlene's growth. She currently weighs 9.1kg (and is gaining on average 30g a day). That was too much as Charlene (unlike normal babies) do not use up too much of her energy. The dietician ordered us to stop the current formula milk (which is a special weight gain formula) and switch to another brand. She also told us to try not feeding Charlene in the middle of the night.

Monday, October 18, 2010

18 Oct 10

18 Oct 10

One of the present from our cell group friends is a exercise mat. It comes with sound and little toys, and is very cooling.

Placed Charlene on the exercise mat today and she was quite amused by the sounds and little toys. Saw her gave her 1-sided smile.

When Dez came home, we sang Christian baby songs to her & moved her hands... Charlene was actually excited! She smiled at us when we played with her... this is the 1st time Dez had seen her responding to our playing!

Thank God for Your grace upon Charlene! We can see that Charlene has been making some improvements, day by day, month by month. Though we do not know Your plans, we trust that Your plan is to prosper us and for the good of Charlene. Amen.

Sunday, October 17, 2010

Charlene's One Year Old Bday Party - post entry

"A miracle needs no explanation to those who believe in God; to those who don't, no explanation is enough."

God is good! He answer our prayers, though not often in the form that we expect, but always in the spirit that we prayed for.

Me and Dez were very tired even before the bday party starts (see 17 Oct entry). Charlene did not stop crying after she woke up at 9am (short nap of 2 hours). She did stop for a while when Wanfen, Audrey and Shiyun came up to our place...but only for a while.

Charlene cried while having milk at 9am and 12pm, and both times she vomitted and turned slightly blue. Fortunately, we turned her out fast enough so that she did not choke on her vomit.

We prayed to God that He bless Charlene with peace and calm during the party. We prayed that her PEG stopped leaking and that we do not need to change her gauze mid-way during the party. We prayed that she won't vomit during the party.

She kept crying and leaking despite our best efforts.

By 12pm. Dez and I were tired, hungry and dirty. Both of us have not bathe and Charlene was crying non-stop,  & leaking and unchanged. Dez and I and my MIL have to take turns to bathe, then we rotate the carrying of Charlene.

By 1245pm, we decided to send me down to entertain the guests while Dez stayed up to help change Charlene.

Dez and MIL brought Charlene down at 115pm. Miraculously, Charlene stopped crying the minute they stepped out of the house. And when Charlene was brought down to the party, she remained calm, though a little overwhelmed by the people. She was looking around, a little dazed at the people around her, but she didn't cry nor throw a tantrum. 

She had 1 seizure episode, but noone around her realised it, bec the episode intensity was very mild.

Mid-way through the party, Charlene finally fell asleep. She woke up during the bday song, looking stunned while I hold her hands to cut the cake.

Both Dez and I had some time to chit chat with our friends... we could never believe that we could do that 30 mins before the party.

We thank Jesus for His grace!

Thanks to Wanfen, Audrey and Shiyun who came early to do up the deco... it really bring up the mood for the bday party.

Thanks to my BIL for the exotic cake and helping to clear the mess. He had always been a man-of-action for me and Dez.

Thanks to our cell members who came to the party despite the hectic schedule in church.

Thanks to Ah Sang and Chow Lin to make their way here to lend their presence.

Thanks to our Swaps frens who helped to take down the deco and cleared the area.

Thank you all for your generous ang bao and presents for Charlene. Your presence for the event... allowed us to capture some of our lost time b4 Charlene's arrival.

Charlene in her little pink dress

Charlene's One Year Old Bday Party

Hi to all,

As some of you might know, we are holding Charlene's bday party today at 1pm - 3pm.

To tell the truth, me and Dez were struggling between holding a party or just have a mini celebration in our family. The party will be draining for us and for Charlene, has to be short bec of feeding considerations and the visitors can't really play with Charlene anyway. To a certain extent, it seems a little pointless to spend so much energy and effort when we are often tired from the daily strains.

But we finally decided to go ahead, bec we want to remember how far Charlene has come. She has been fighting since a year back, and thriving despite all the afflictions. All thanks to the divine grace from Jesus, she was able to come to this day. We do not know God's plans for Charlene, so we hope to capture this moment, this milestone, that even if God decided to take her back into His Kingdom, we have wonderful memories about her.

We apologise that we can't invite all our friends/colleagues to the party. We are worried that if the party drags too long, Charlene will be tired and upset. Also, if we invite all our friends/colleagues, the party will be very big and we will have a difficult time to manage the party and Charlene.

After much deliberation, we decided to invite our relatives, our cell group members and friends who have visited and seen Charlene. Our relatives, we can't really choose.... our cell group members, they have visited Charlene many times and have seen her in church... our friends who have visited her, well, they will be familiar with her and so will not be shock at her conditions (PEG or seizures).

To those who we aren't able to invite, we are genuinely sorry.

17 Oct 10

17 Oct 10

Charlene started crying at 230am, initially whimpering but gradually escalating to full-blown crying. Dez had to wake up to help out my FIL in calming her down, giving her milk... but despite all his efforts, Charlene never stopped crying.

We are not sure why she's crying. The worst thing about crying is that it will start of the whole chain of problems... crying --> coughing ---> leaking gauze ---> wet diapers ---> discomfort ---> more crying. Though we all tried to change the gauze & diapers to make her comfortable, if the crying doesn't stop, the cycle won't stop.

At about 4am, me and my MIL woke up to help out to calm her down. But no use, Charlene just never stopped crying. Though there were pockets of time in which Charlene stopped crying momentarily, she cried all the way till 645am.

Charlene finally slept after she was put in prone position. We don't usually put her in prone position bec the gauze will leak. I decided to put her in that position, because the gauze was already leaking and the bed sheet already dirty.

Everyone is exhausted.

Wednesday, October 13, 2010

13 Oct 10

Charlene is finally discharged today. She still has phlegm and is coughing. Her saturation at times is no good but dr say adjust position. Have to do chest physio for her and do suction regularly.

Dr never adjust her seizures med. Say must give potassium bromide a chance to work (takes at least 3 weeks to stabilise). And even if her fits are more than 20 times a day and in clusters, they don't think we should bring her in. Just self-administer emergency med that might abort seizures.

I am glad that I am not a doctor.

Monday, October 11, 2010

11 Oct 10

Don't know for what reason, Charlene started having many seizures and clusters again today. The doctors tried a new rectal med to see if the clusters will stop. Well, it kind of stop for a while but came back again. Basically, when she transits from awakeness to sleep, she will keep having it in clusters. But the moment she goes into deep sleep, v few or no seizures will occur.

Saturday, October 9, 2010

9 Oct 10

Charlene had one seizure today. Though we really wanted the seizures to be gone for good, we are still thankful that her seizures are under control.

Friday, October 8, 2010

8 Oct 10

Praise the Lord!!! Charlene is free of seizures for 39 hours and counting... We thank God and trust in Him to deliver Charlene. We pray that Charlene will recover from her cough and flu and be as awake and alert as before with no seizures.

Thursday, October 7, 2010

7 Oct 10

At 2am, the Lord woke me up (that's what I think) and I checked Charlene's temperature -- 38.8 deg. I gave her panadol, sticked the Kodomo fever kool on her head and put the ice pillow under her back and went back to sleep. At 4am, Dez woke me up and said that Charlene's fever is not subsiding. It is at 39.6deg and sponging with ice water for 15mins doesnt even lower the temperature.

We rushed Charlene back to A&E.

The doc said she is breathless and gave her some oxygen and admitted her.

The fever began coming down and her seizures stopped after 825am. But Charlene is totally knocked out (either cos she is sick or cos of drowsiness caused by potassium bromide). However, the doc heard some phlegmy noises coming from the lungs and sent her for chest X-ray. They suspect lung infection and took some blood for blood culture test.

Dr Tan (the geneticist) came to tell me some interesting stuff. She said that many things could cause seizures. But to cause both seizures and the heart muscle to be big, not many causes. She said one likely hypothesis that could explain for Charlene's condition could be mitochondria disorder. She said that unless we want a second child, she would not suggest verifying it as the procedure is an invasive one (a surgery to take out a muscle for testing). However, if it is really mitochondria disorder, taking some coenzymes might help in controlling seizures. But she said wait for potassium bromide to settle first. Anyway, the good news is that 2 other medications that Charlene is on (not anti-convulsants) can be stopped cos they don't seem to help in controlling her seizures. Basically, Dr Tan prescribed them cos it was difficult to determine if Charlene was lacking in these vitamins which could cause the seizures. This could save us $300+ a month. Thank God!

Wednesday, October 6, 2010

6 Oct 10

Charlene started having 2 clusters of seizures in the morning.

At noon time, the doc started the new anti-convulsant potassium bromide.

Charlene was still coughing badly but her lungs were clear.

The doc wanted to keep her for one more day of observation due to the clustering but I asked if we could bring her home cos her seizures were not more than her baseline of 12 a day. The doc obliged and we brought Charlene home.

Charlene puked in the taxi ride and I suctioned her the first thing we reached home. After suctioning, Dez noticed that Charlene's face was flushed but her limbs were cold. We measured her temperature and it was 38.8 deg. We were stunned. We gave her panadol immediately. We also thanked God that the room main light was on (cos I was doing suction) and as such Dez could see her flushed face.

Tuesday, October 5, 2010

5 Oct 10

Charlene's seizures were at single digit for the past 2 days. The doctor told us to consider a new medication. Either potassium bromide or another med starting with v (can't spell). The doc said that potassium bromide might help cos of Charlene's see-sawing seizures.

We decided that we would give potassium bromide a shot. Our little research showed that potassium bromide is the first ever anti-convulsant used before phenobarbitone was invented. However, due to its narrow theraputic range (i.e. difficulty in determining the effective dosage), it is seldom used in humans but commonly used in dogs.

We smsed our prayer support group and got our brothers and sisters in Christ to pray that the medication would be effective in controlling Charlene's seizures. In fact, with potassium bromide being effective, we could take off other anti-convulsants which have more side effects.

We also highlighted our financial situation with the doc and asked if some of the more expensive medication (which are not anti-convulsants could be taken off).

I was also thankful to Pastor Timothy for specially coming down to pray for Charlene and for me.

Sunday, October 3, 2010

3 Oct 10

At 5am, Charlene started having fits in clusters (i.e. 3 fits in an hour) and the trend carried on till 7+am. We went to church and the clusters stopped during worship. However, it carried on and by 6pm, we decided that we had no choice but to send Charlene to the hospital.

Along our way, I sent out sms to a few brothers and sisters and to Pastor Timothy. Strangely and amazingly, Charlene stopped having fits throughout our wait in A&E. It must be due to our brothers and sisters in YMM who were praying for us. Thank you Pastor Timothy for sending out our sms to all cell group leaders.

However, given her medical history and the frequency of her fits, she was admitted for observation. Charlene was also coughing quite a bit.