31 March 2012

We attended a gathering for parents with special needs children. The atmosphere was relaxed. It was good to see everyone coping and having a life despite the very tough difficulties faced handling our special needs child. It was great to meet people who testify to God's goodness. A 5yr old girl was weaned off her peg last year. These stories encouraged me to continue to perservere in the therapy exercises.

Charlene woke up after half the people have gone home and smiled happily. Auntie Carmen tried a couple of times to get Charlene to smile and succeed each time when she says "Pretty girl". Charlene also smiled happily at the hosts; Kenneth and his wife.

30 March 2012

Charlene's ot in school praised her for being a good girl today. Charlene was awake and responsive and was quite cooperative during the therapy session today. She also enjoyed her time in the multi sensory room.

28 March 2012

Charlene woke up in time for her physiotherapy session in school. Today the PT made a discovery. Charlene uses her diaphragm muscles to breathe when she is lying down. However, the moment she sits up, her diaphragm will fall further down by gravity. Because her rib cage muscles are weak, her breathing become swallower as a result. This explains why when Charlene sits up, she tends to close her eyes.

26 March 2012 - Charlene and Winnie the Pooh cartoons

Three days ago, I decided that when Charlene is doing her neurosuit training, I would find something meaningful for her so that she can understand why she should sit up. At the same time, I need to find something that will keep my time too so that I won't be so bored that I fell asleep. Thank God for providing me with wisdom. 

So while Charlene is sitting in her neurosuit in front of the mirror (so that I can see her), I am behind her (just imagine me to be the chair) so that when she is tired, she will lean her head on me (my hands are not holding her head unless she becomes tired and unstable). I put the laptop in front of us and started with Pooh's Heffalump Movie on Fri. I wasn't sure if Charlene was watching. But she was not upset and doesnt look bored or stressed. So I enjoyed myself. Yesterday, we watched the Tigger Movie. 

And today we watched the Many Adventures of Winnie the Pooh. Charlene was able to sit and hold her head by herself for a prolonged duration of 15mins! Praise the Lord! We took a 5mins break at the half hour mark and continued. After an hour (which is normally Charlene's max tolerance for neurosuit training), I took her off the suit and she was visibly happy. Wanting to reward her, I carried her in my arms but she started to be upset and struggled to get out of my arms. I thought perhaps she wanted to finish the show (there was 10mins left). So I sat her up again (this time with my hands holding her head) and she kept quiet immediately. We finished the show and I put her back in her bed. She started being upset again. Dez and I were very happy! Charlene wants to watch cartoons! 

22 Mar 2012 - Charlene and her jumbo color pencils

I bought Charlene a box of jumbo color pencils. So today I told Charlene that we are going to make a "welcome back" card for Daddy. Initially, I put two color pencils; one on Charlene's left hand and the other on her right hand. I told her that she can choose the color she wants by holding on to the color pencil and dropping the other one. At the start of the 4th round, Charlene had blue color pencil in her right hand and another color (I can't remember) on her left hand. So I said "Charlene, let's use blue color to write the word 'Daddy'. Daddy likes blue color". To my surprise and amazement, Charlene held on to the blue color pencil and dropped the one in her left hand. I was unconvinced. So this time, I purposefully put the yellow color pencil in her left hand (her weaker hand) and another color in her right hand. I told her that I needed yellow so that the card will look more colorful! After 20 seconds, Charlene let out a loud whine, raised her right hand and drop the color pencil. She held on to the yellow color pencil in her left hand! Wow!!!

Praise the Lord! Charlene understood what I was saying. And she knew about colors too! God must have been teaching her!

13- 19 March 2012

It' the March holidays and Charlene took full advantage of it. Her biological clock turned upside down again (What Sarah's colleague described as "going to Saudi Arabia" as Saudi is 5 hours behind Singapore).

So Charlene slept in the day and will be awake through the night. We really cannot stay awake to do anything with her. So she ends up lying on her bed through the night and not really doing anything productive. Sigh.

And then on Sat, when I came back from tuition at 5pm, Charlene was awake. She didn't sleep and couldn't get to sleep despite being carried. Each time she fell asleep, she was jolted up by her fits. This happened a couple of times. She didn't sleep till Sunday 630pm after her Daddy had left for the airport for Perth. So she broke her record for being awake for 25 hours! Perhaps, she was scared that she couldn't wake up in time to say bye to her Daddy. We thank our cell group for their concern for Charlene and praying for her.

Then cos she was overly tired, Charlene slept from Sunday 630pm and only woke up on Mon 1155pm. a total of 30 hours.

Thank God that she did some sitting and was awake for that half an hour during hydrotherapy.

19 March - 23 March 2012

I thank God for His grace for the whole week that Dez was away in Perth. I thank God for blessing Charlene and I with good health. And for granting me strength to stay awake at night to feed Charlene milk. I also thank God that Charlene woke up at the right time for neurosuit training in kkh. I also thank God for my parents who came to visit me and provided me with food.

This is how we feel too... (sometimes)

(Note: specific mention that this post is written by Dez).

This is how I feel (sometimes).

Feelings of a dad with a special needs kid. 

This is how my wife (sometimes).

Feelings of a mother with a special needs kid.

Charlene and her mummy is waiting for me to help out with the neurosuit training, so i will follow up my thoughts later...

11 Mar 12 - Charlene responded to question about personality...

As per our weekly routine, our whole family went to church to worship and praise God. Because we were very tired from yesterday wedding, our whole family woke up late. We missed the bus and had to rush down in a cab; we didn't want to miss the worship because its a weekly event that we look forward to.

During the sermon, the pastor asked a question to the audience. He asked those who are extroverts to raise their hands. Immediately after pastor asked the question, Charlene let out a loud cry! The church friends around us were amused and said "yes Charlene, we know you are an extrovert". Haha, which indeed is the case... Charlene likes to be around ppl, and enjoy ppl's company. She's not afraid of strangers and likes to listen to ppl's conversations.

10 Mar 12 - Wedding & Record breaking

10 Mar 12 is the wedding ceremony of our church friends. The couple invited us for the church ceremony at Hakka Methodist Church and a wedding buffet lunch at Sheraton Towers hotel.

The wedding was a simple but solemn affair.  As we know both the couple, we are glad to see God bringing them together. We pray that Lord Jesus will be in their relationship and help them be strong and loving.  

Charlene missed out the whole wedding ceremony altogether and only woke up at the photo taking session. When we went to the hotel for the buffet, she was wide awake, but very calm and quiet. Some of our church friends helped us to look after Charlene so that we could take turns to get our buffet.

The buffet was good! International buffet... the oysters were fresh, the sashimi was good, the chocolate deserts were fantastic and the ice-cream was good quality...! I haven't had such a good buffet for a looonnnnggg time, so it was a blessing to enjoy a good meal among friends. Thank God!

After we reached home, we made use of the evening time to do exercise for Charlene. Managed to do standing and sitting with neurosuit. And Charlene broke her record of holding her head without any assistance! She held her head for 30 minutes! Praise be to God!

Standing was tough, cos it puts a lot of pressure on my knees. We decided its worth while to get a stander.

8 March 2012

Thank God for today as everything planned has been accomplished despite delays. 

Thank God for a taxi immediately after I went downstairs. The driver was very patient and nice too. After waiting for 30 mins, Charlene had her button changed. The nurse was amazed that Charlene's mic-key button lasted for more than a year. She said many people's mic-key buttons only lasted a few months. I told her the doctor ordered me to change it. Well, it is really a little dirty but if not necessarily, you won't change it because one set costs $177. Anyway, thank God for the skilled nurse. She replaced it so fast that I did not even catch a glance of it. Charlene is a strong little girl. She only whined and did not even cry. 

Afterwhich we went to the Feeding Clinic. I was very pissed. I felt that the SLT is not value-adding in any way and I am just wasting my time and effort seeing her. She cannot even ensure that Charlene's sitting position is optimal then asked me to feed her. How do you expect Charlene to swallow when she is in a reclining position? Obviously she will cough and choke. Rather than holding Charlene, she was pushing my pram to an upright position (if it spoils, it's definitely her fault) while it was obvious Charlene was still reclining. Then, after Charlene coughs and chokes, she took prune puree and gave me half a spoonful of it and ask me to feed Charlene. I was aghast. This was the same SLT who told me not to give her anything via spoon and if I want to give her pacifier, must perform suction before and after. And now, after Charlene chokes and still in a very bad position, she wants me to spoonfeed her?!? I was infuriated. I used my left hand to hold Charlene into a 90 degree sitting position and used my right hand to feed her. Then I told her straight in her face "See, she is swallowing". Faint ah..

Charlene is a good girl. She did well in her physiotherapy session in her neurosuit. She sat by herself with arms resting on the bench. She also stand for quite a well. We are really thankful to God for providing us with the second hand neurosuit. According to the PT, the neurosuit company did not get bk to them anymore and there's no news of the new neurosuits.... 

Joshuas n their Fathers

Read the previous post on God Provides. So I had two tuition students whose names happened to be the same - Joshua. So on Wed night, I started a new tuition with a girl. And after chatting about her school etc, I discovered that her chemistry teacher is called John. The description fits into one of the Joshua's father. What is amazing is that the first Joshua's father name is also called John. This is really too much of a coincidence. What are the chances that you know 2 tuition students with the same names and whose fathers' names are the same too? Wow!

5 March 2012 - Charlene broke standing record

Thank God for a productive day in school

Charlene's classmate was late so the teachers brought us to the class next door. Charlene loves crowds. She was smiling so happily. 

Charlene was awake and alert during feeding exercise. She did very well in her feeding exercises. The speech therapists were so delighted to see her so awake and responsive. They have not seen Charlene showing awareness of people talking and were pleasantly surprised. They were also happy to see Charlene being so cooperative as she was positioned in the buggy. In the end, the therapists were satisfied with their positioning of Charlene. 

As it was raining the whole morning, I decided not to let Charlene go for hydrotherapy as I don't want to risk her catching a cold. Instead, we decided to put Charlene in a stander. She hasn't done any standing for 2 months since school re-opened. I suggested to Teacher that we bring Charlene out to the corridor to see the painted wall. Charlene was quite cooperative as she listened to her Mummy "lecturing" on the various sea animals in the sea as painted on the wall. We didn't realize that Charlene stood for 30 mins! She broke her standing record as she has always only stand for 10 mins and will start whining. 

Back at home, we had a good one hour with the neurosuit training. 

I was very pleased and happy with Charlene and thank God for His grace!