Wednesday, March 27, 2013

27 March 2013

Charlene went to see the NUH neurologist today. We reported to Dr Ong about Charlene's condition, saying that we have not observed the symptoms of her fits. But at the same time, we observed other types of symptoms, like stiffening of the limbs.

Dr Ong was happy to hear that at least the old symptoms has disappeared. Regarding about the stiffening of the limbs, he suspected that may be fits. When I said that it may be "reflex" Dr Ong said that it's a good sign, as Charlene has started with nothing and now acquired some reflex....

Hearing that Charlene is cranky in the day and have difficulty sleeping at night without chloral hydrate, Dr Ong proposed to give her another medication, clonazepam. The medication is an anti-epileptic, a muscle relaxant and also a sleeping aid. So the intent is to help her to sleep, reduce the stiffening of limbs and control her fits at the same time.

Dr Ong's plan is to give her the medication for 1 month, and we will then have another EEG in the short term.

Please pray that the medication will be useful and help charlene get back to her non-cranky mode. Please also pray against the main side effect of the medication which is the increase in phlegm.

Monday, March 25, 2013

25 March 2013

Charlene was awake in the morning and by the time class starts, she was drowsy and wanted to sleep again. So we got through circle time with her asleep and peeping at times. The therapists came in for group feeding and OT Fiona was there to watch me feed Charlene ice water. Charlene will swallow a few times after I put the spoon in and then close her eyes. Immediately after the therapists left the classroom, Charlene opened her eyes and smiled cheekily at her class teacher. Aiyo, this clever girl ah, task avoidance?

The swimming pool was not heated and Charlene wailed loudly the moment she was in and cried throughout. Immediately when I carried her out of the pool, she stopped wailing. Her responses are so immediate now. Wow.

Friday, March 22, 2013

22 March 2013

Charlene was awake in the morning from 6-1030 am and then she fell asleep. She was asleep the whole time (12-3pm) when my mum came. I suspect that she wanted to avoid my mum as she is afraid of my mum. She knew that her maternal grandma was coming as my mum spoke to her on the phone yesterday.

After my mum said goodbye (and went into the toilet), Charlene started crying immediately. My mum tried to stop her from crying by shifting her to my bed. Charlene cried even louder and was so angry that she rolled over onto her tummy and fell asleep thereafter. It was the first time that she has rolled by herself though her method was unorthodox.

It shows the improvement in Charlene's strength as well as muscle movement. Thank God!

Thursday, March 21, 2013

21 March 2013

Charlene was awakened from her sleep when we boarded the taxi to KKH for her feeding session. Charlene weighs 13.6kg now and 90cm tall. Her height and weight is acceptable and the dietician does not have additional inputs. The speech therapist put Charlene in a feeding chair (high-chair) and she fits perfectly in it. Charlene was never able to sit in such a chair due to her floppy nature. It is such a good thing that she is able to sit there by herself. But because Charlene is sleepy, she was not very cooperative. Nevertheless, the speech therapist said that she seems to be having more mouth movements and swallowing more and she said that she heard less of those gargly sounds in Charlene's throat (seems like there is less pooling of saliva and less phlegm).

The leaking button could very much in large part due to her excessive crying causing buildup of air in her tummy. It could also be due to slight constipation according to the gastro doctor. Of course, the feeding of blended porridge and juices could have caused the tube to clog and hence leakage from the button as well. With regards to reflux, the doctor suggests that we increase the dosage of randitine to the maximum while waiting for her fits to be stabilised. (cos I think her reflux is more of due to the brain's inability to control the sphinter muscles).

Wednesday, March 20, 2013

20 March 2013

Charlene started crying at the start of the physio session as she was made to roll. But the moment she was seated up, she stopped crying. The physiotherapist put her in a crawling position (what they called a 4-point) and she did very well, lifting her head up. It was good weight bearing for her arms and knees as I don't really know how to put her in this position. She was also ok in a squatting position and her head control has visibly improved. The PT commented that previously, these exercises would have required one hand to hold Charlene's head.

After an hour of good workout, Charlene was obviously tired when she saw the Occupation Therapist. Despite being sleepy, she sat quite well holding her head (the OT only supported her by holding her armpits). Her head control has really improved so much after the removal of phenobarbitone as well as potassium bromide.

We thank God for the improvement and continue to pray for lacmital to control her fits fully so that Charlene can have a breakthrough cognitively.


Friday, March 8, 2013

8 Mar - 15 Mar 2013

On the 8th, I vomited three times in the night. I went to a GP who said I had stomach flu and sent me home on a non solid diet. Sat night (9/3) I vomit another three times. Whatever that I have tried so hard to drink in the day was vomited out and the fever never gone down despite taking panadol. On Sun night (10/3), I vomit 5 times and I could no longer drink anything. Whatever I drank, I vomit. My hubby got his brother to take me to a 24hr clinic (cos he has to take care of Charlene). The doctor after seeing my face and hearing what happened to me, told me to go to the hospital. So we went to Khoo Teck Puat A&E at 12 midnight. I was put on 3 packets of saline and at 5am, despite my temperature at 38 deg, I was sent home. I did not vomit anymore but the fever was still persistently high and that made me really lethargic. Also, I was unable to consume sufficiently enough fluid to stay hydrated.

The next morning (12/3), at 530 am, my husband took my temperature. It was 40 degrees! He sent me to the hospital immediately. I was put on saline drip again as I waited for admission in an observation room in the A&E. The doctors tried to find the source of my infection; they took chest X-Ray, ecg, blood test to rule out dengue, nose swab, body swab and blood culture to check bacteria etc. The only thing the blood test tells them was that my white blood count was too high (obviously since I am having a fever indicating that my body is fighting infection). The fever still goes up and down for the next two days.  I was also sent to the ENT doctor who had a good look at my ears, did a nose scope for me and look at my throat. They found two ulcers at the back of my throat and my tonsils were quite infected (cos I was having a nasty dry cough).

Only till 14/3, the last time I had fever was at 230pm, afterwhich I didn't have fever anymore. After checking my blood once again to make sure my white blood count has come down to normal, they discharged me on the 15/3.

So I stayed 4 days at the hospital leaving Charlene to her Daddy and grandparents. It was a forceful break for me. I have never fallen so sick before.