Li-Ann saw the doctor this morning for a review of her anus and also the scar on her side. I’m so grateful we didn’t have to wait. The doctor was happy to see LA – commenting that she has grown. Upon examination, he said that all’s well and gave me credit for taking such good care of LA in terms of her health and diet. He knew of children with similar condition and the families have problems managing. I’m thankful that LA eats and poos well. The doctor had stressed that she cannot be constipated. So I make sure that she passes motion at least once everyday. Not only that, the faeces have to be nice and soft too. I call that poo watching. I get a lot of information just by watching. Many times I discover what are the food that she swallows without chewing and so I’ll make a point to either cut it smaller or give her by itself. I will also know if she has eaten enough fruits and vegetables and if she has drunk enough water. I thank God for giving me the love for LA and also the sensitivity and wisdom to manage her.
All my three pregnancies were good. I could eat and sleep and I only felt nauseous. So you can imagine the weight I put on. Thankfully, I lost most of them when I breastfed the children.
When I was expecting Li-Ann, I had an inkling that she may have Down syndrome (DS). I was surprised and concerned. But God’s still, small voice said,’Trust Me.’ So I did. Regular scans showed everything was fine. During the detailed scan at 20 weeks, my gynecologist noticed a white spot on the heart. He suggested further checks and said there was a possibility that the child may have DS. The results was supposed to help us to decide to keep or abort her. Hubby and I talked and prayed. Aborting the baby was not an option for us. Hence, we decided not to spend money on the tests. Again, God reminded me to trust Him. Li-Ann was born a full-term baby, naturally without epidural, on 8 January 2005 at 1209 hours at Mount Alvernia Hospital. She sucked very well right after delivery. However, I didn’t see my baby for at least half a day. I sensed something wasn’t right as a newborn who was totally breastfed should be hungry within a couple of hours. Even if my baby had DS, she still needed food. The nurses didn’t want to reveal anything except that the pediatrician would tell me personally about my baby’s condition. The pediatrician was ‘99.9% sure’ LA has DS and said the blood test was the 0.1% that would confirm this genetic condition. He then went on to tell us that LA was born with an imperforate anus and that was the reason why she could not be fed and was kept on the drip. Having delivered less than 24 hours ago and to hear of my baby’s condition in such a factual and clinical way was so unkind. Surely there could be some empathy…
While we waited for the blood test results, we had to first resolve the issue of LA not having an anus. We were recommended a very good and experienced doctor at NUH. So we discharged ourselves in the middle of the night and then admitted LA to the A&E at NUH. The team of doctors saw her soon after, assured us they would do their best and quickly did the initial tests and scans. With the results, they proposed a three-staged procedure – a) create a hole at her side so that the gas and faeces would collect in the colostomy bag b) as soon as LA reached a good weight of 5kg, she would undergo another surgery where the anus would be created c) when the created anus was sufficiently dilated and condition deemed satisfactory, she would then have the hole at her side closed.
I was grateful when LA FINALLY reached the magic weight of 5kg as she was beginning to be more mobile and active. I remembered being so excited as the last 9-10 months prior to that was very trying – draining the gas and poo from the colostomy bags, cleaning and changing the expensive bags (the cutting and sticking was like doing craft work), changing LA’s clothes and bedsheets when the bag leaked (either due to my poor skills or because LA moved around too much) etc. Right after the doctors closed the hole at the side, I was told to listen for the first fart and also to look out for the first lot of poo she passed out. It was like looking for gold – something so precious as they signify that the intestines were working well. I prayed for God to continue to extend His mercy to LA as she was recovering. My only regret was not taking a photo of that first poo in the diaper 😦 Anyhow, God knew all and had held her in His bosom all this while. Praise the Lord she recovered quickly.
The blood test confirmed that LA has DS. Chee Meng and I talked about how we felt, where we could get help, how to help her and how her future would be like. Remember God telling me to trust Him? That kept me calm and rational. We also wondered if our expectations should be lower for LA. As I had taught John and Rebecca at home myself and having read up about home schooling, I realised that for learning to be effective, it should be tailored to the child’s learning style and also at a pace comfortable for the child. I resolved to love LA just as I’ve loved John and Rebecca and would not expect anything less than what she could achieve. If I had to teach her 50 times for her to understand, I would. If I had to give her 10 minutes more for a task, I would. If Method A doesn’t work, I would try Method B. Why? Because I know eventually she’ll get it. And you bet she did!! We are so happy we have her and she’s such an adorable cutie. We never see her as a burden because she is a blessing from God. God has been faithful and has provided for ALL of her needs and ours.
1 Unless the LORD builds the house,
its builders labor in vain.
Unless the LORD watches over the city,
the watchmen stand guard in vain.
2 In vain you rise early
and stay up late,
toiling for food to eat—
for he grants sleep to those he loves.
3 Sons are a heritage from the LORD,
children a reward from him.
4 Like arrows in the hands of a warrior
are sons born in one’s youth.
5 Blessed is the man
whose quiver is full of them.
They will not be put to shame
when they contend with their enemies in the gate.
Li-Ann went for her usual once-a-month therapies at NUH – PT (Physiotherapy) and OT (Occupational Therapy) on Monday. We have noticed an interesting pattern – whoever takes LA for therapy first will have to get her warmed up. Hence, the next therapist will benefit more from LA’s willing co-operation. The good thing is that every month (I happen to notice), the OT and PT appointments seem to ‘take turns’ being first or second. At least that’s fair to the therapists. Otherwise I really sympathize with them. Regardless of all these, overall, LA is more motivated now and will ‘play’ with them. To prepare her, I will tell her, while on our way, that she’s there to play and also she should listen to them etc etc. So far so good. In general, with those who are familiar, she is more willing to communicate and will even attempt to initiate interaction.
What’s new that Monday was that she would see the ST (Speech Therapist) for the first time. The good thing was the appointment was the LAST one – so we figured she’ll be SUPER warmed up by then. In fact it wasn’t too bad for someone she’s seeing for the first time. She was very quiet when told to do tasks and she responded very softly at first. But she opened up when the ST brought out the BUBBLES!! That did the trick. After that she was asking and speaking and playing in her usual VERY LOUD voice and it was amplified coz we were behind closed doors. I had to put my fingers to my ears, really. I didn’t know she was SO crazy about bubbles. But I’m so happy 😀 The ST commented that for LA’s age, her pronunciation was very clear and she knew what LA was talking about. From the ST’s observation about the way I talked to LA, she thought it was very good as I spoke standard English, using complex words and sentences, and the best part was – LA comprehended me perfectly. So the ST concluded that LA’s receptive and expressive languages were excellent and she doesn’t really have any problems. She went on to say that she was so happy to say that of a child. Oh I am so so so so so (sorry, wish I can emphasize this more) excited and encouraged and relieved!! If you are a parent, you’ll know what I mean. Such kind words really warm my heart. 🙂 This ST has been very patient and understanding. I thank God LA is seeing her.
Now that the OT, PT and ST are all under one roof, they can put their heads together to think of how to ‘play’ with LA better so that all will look forward to an enjoyable time of ‘playing’ together.
Pleasant words are a honeycomb, sweet to the soul and healing to the bones.
When God told me to set up this blog, through at least 3 friends, I know this is one way I can reach out to help another in need. If you have a genuine need or you are able to give of your resources in some ways, please let me know. I hope to link all of us up so those in need can be helped in efficient and effective ways.
For now, I know of a full time Christian couple with four children who is in the red each month. One of the children requires regular medical care. Would you be able to give? If you are willing and able, let me know so I can link you up with this father. We appreciate your giving heart 🙂
A generous man will prosper; he who refreshes others will himself be refreshed.
You know, I’m most grateful for my church and my friends who have been praying for us – first, for Li-Ann when she was born and then for her surgeries and then subsequently for my cancer treatment and health. God has been so so so good ( I can’t further stress this) – providing for all our needs and we are NEVER in need of anything. Even for a recent evangelistic dinner which I brought my parents to, God provided the EXACT amount for the dinner offering through my mom. Only the organisers, my hubby and I knew the amount; my mom and dad were unaware. Praise The Lord!!!
Oftentimes when I’m down or struggling, I’m lifted up when I go to God’s Word and when I asked my friends to pray. I appreciate words of encouragement from emails, phone calls and sms. I wish you would know the power of our Almighty God. If you feel there’s nothing else I can do for you, then at least let me pray for you. If you are open and would want my other brothers and sisters to pray for you, feel free to share your prayer requests here. I’m sure we are privileged to be called to pray. However, if you are not comfortable posting it here, you could send me an email privately. I will also give thanks for the Lord’s goodness in our lives. As I share, I urge you to rejoice with me and share yours as well. Let’s rejoice in our children/family together!! 🙂
Last Sunday when we were singing praises unto the Lord in church, I saw Li-Ann standing with her hands outstretched at her sides swaying from side to side, just like the worship leader. She was ssoooooo cute!! It was so good to see her wanting to sing to the Lord. Suddenly, I realised that God is so very pleased to receive praises from Li-Ann – whose heart is simple and pure. I saw God glorified as many children, dear and special to Him, singing to Him, be they the usual worship songs or songs they made up. Oh it’s SO wonderful and I felt so joyful. At the same time, it also dawn on me that there are many out there who do not know the Lord. It is my prayer that through Li-Ann, they will see the love, grace and wisdom of God and will want to come before Jesus to worship him freely too. Amen.
Blessed are the pure in heart, for they will see God.