16 Aug 2010

Charlene was able to puke out 2 clumps of phlegm soon in the middle of milk feeding. This is a significant improvement because it shows that she was able to control her sphincter muscles to prevent from vomiting the milk. Just a few months back, we were worried about the reflux and constant vomiting, but its obvious that Charlene has already went past that stage.

The Lord is good! He has answered our initial prayers (see our prayer list on blog right)! His way is above our ways and though we might not see instant changes, His grace is certain and sure.

Though Charlene's seizures have been creeping upwards, from once per 2 hours to once per hour, we will keep faith in the Lord.

Friends, please help us in praying that Charlene's seizures be kept under control and return to the previous baseline (avg 2 per day) with the current level of medication. 

(Charlene in her new sleeveless T-shirt, courtesy of Auntie Wanfen, Audrey and Jiayu)

14 Aug 10

Our SWAPS friends came over to visit Charlene and bought lots of new clothes for Charlene. Now Charlene has lotsa new clothes.

In fact, she has more clothes than toys now. Which is just as well, since Charlene don't really play around with toys. But she changed her clothes a lot, cos of vomitting.

9 Aug 10

We brought Charlene to a brother-in-Christ, Ah Sang's (refer to 4 Nov 09 post) home on National Day.

We chit-chatted and updated them on Charlene's condition. Ah Sang's wife shared some stories about her difficulties in taking care of Wei Yang during his rehab and we can tell how much she went through. She was able to go through the tough time by drawing strength from the Lord.

Though we were only there for an hour and a half, it was very good sharing. Bec Ah Sang's family went through a similar ordeal, they could understand our difficulties much better than others.

Lord, may You bless Ah Sang and his family with health and recovery. May You bless Wei Yang and protect him from the seizures. They are a Christian family which we would like to model ourselves to; strong in faith despite the difficulties and exemplifying God's Word in 2 Corinthians 12:9.

"My grace is sufficient for you, for My power is make perfect in weakness" - 2 Corinthians 12:9.

8 Aug 10

We thank God for answering our prayers!

Charlene's biological clock reverted back. She wakes up in the day and sleeps at night.

The number of seizures she has is still around 12 daily. However, the statistics for this week might totally not be useful as Charlene has continuously puked out her morning medicine 6 days in a row. The very first time it happened, Dez said that she is doing it on purpose cos she knows what it is and don't like it. For the 1st few days, I thought it could be that she was having some digestion problems. Then yesterday morning, I split the medicine up, only fed 4 instead of 6 thus reducing the volume from 19ml to 11 ml. Yet, an hour after the medicine, Charlene puked it out and the force she exerted while vomiting also caused the medicine to leak out of her button. I am sure that she did it on purpose. Anyway, cos I split up the medicine, at least the new anti-convulsant medicine is not being puked out.

I saw Charlene smile (on 6 Aug))! She was in good mood as she sat in the car seat happily and smiled at her maternal grandma who was playing with her. I am also thankful to God that she drank water from the spoon and had infant brown cereal.

We also thanked our friends who came to visit Charlene and for their generosity. We also thanked God for sending brothers and sisters to teach us how to better pray for Charlene's healing.

(charlene pouting)

(charlene smiling to grandma. the best picture i could get for her blink-&-you-miss smile)

3 Aug 10

Since Topomax was added last Friday (30 July) till now, the number of seizures has reduced but it is still at double digit (11-13). We will probably wait another 2 days to decide if we want to increase the dosage.

1 Aug 10

From today till Nov, Yishun 10 cinema is undergoing renovation and our church has to shift to Econ Building (in Yio Chu Kang) for the interim period.

As the air-con was not strong enough, Charlene started crying half-way through the worship session and we had to carry her out. Feeding her was also another challenge as we tried to minimize the probability of her vomiting by breaking up the feeding into 2 parts.

Lord, despite the obstacles, we pray that You will provide and that we can continue to praise and worship You and move together with our church.

30 July 10

Charlene's neurologist called me in the morning and advised me on the next course of action. Basically, the long term plan is still to take Kappra off for good (since she is only on it once a day for 0.6 ml). For now, to keep the seizures under control and back to the baseline (equilibrium), increase dosage of Topomax (which is the 4th medication that was recently added in June).

So, I increased the dosage of Topomax by 1ml at night.

Tonight, we went to Charlene's friend 1 year old birthday party. The girl and Charlene used to be neighbours in NICU. Am glad to have contact with parents who have children of other chronic conditions. Cos only they truly understand the difficulties and the heart pain of seeing your own child suffer.