Assunta - Messed up!

It never ceases to amaze me how commercial healthcare has become.

When I was 15, I needed a stupid letter for my SRP (yes, it wasn't PMR, it was that long ago...) I asked my eye doctor for a letter, not saying who it is, but he's based in SS2 :P bugger charged me tonnes to just get a letter.

Now, the relevance to Alden?? Read on...

Then the "specialists" pediatricians at Assunta Hospital, there were two of them, failed to diagnose Alden's Goldenhar Syndrome aka Oculo Auriculo Vertebral Spectrum.

That time, they just said, "Not to worry, the whitish fatty tissue in the right eye will go away after some time, don't worry about the skin tags at the ears..." DUH! Those are the two most tell tale sign of Goldenhar Syndrome. From my research, Goldenhar Syndrome or GS can affect:

• Ears and hearing
• Mouth
• Spine & Other bones
• Liver
• Heart
• Some mental retardation

Symptoms

Typical telltale symptoms of Goldenhar Syndrome include:

• facial deformities - one side of face/mouth is smaller or the face is significantly dissimilar on both sides
• lower jaw bones underdeveloped
• cleft palate
• malformed/deformed outer ears (skin tags) with cartilage (soft bone) in them
• eye abnormalities - cyst-like formation on the eyeballs, deformed eye, deformed eye lids, missing eye ... sight problems

Goldenhar Syndrome has several degrees of severity and at present, Alden case is considered very mild.

Granted those afflicted with Goldenhar Syndrome usually get affected more on one side of the face than the other. Some even have missing lower jaws, but most will have very deformed ears some may not have any ears at all.

Research References & Helpful Links

I found an excellent support group online for Goldenhar Syndrome located at: http://groups.yahoo.com/group/goldenharsyndrome for those parents who have children with the condition, I recommend joining the group. I found that Alden's case wasn't as bad after reading and looking at the many posts and photos of the children they have there. My heart goes out to the kids there. In the US, they have excellent care for these special kids, in Malaysia we're pretty much left to be on our own!

To save the hopefully many parents that will look at my blog, I've listed some sites I hope they will find useful that I've come across during my research for Alden's case:

1. What's Goldenhar Syndrome? Treatments & Support Groups - Very Succinct straight to the point resource.
2. Detailed (lots of medical jargon) Symptoms of Goldenhar Syndrome
3. The research just wouldn't be proper without the Wikipedia Reference!
4. Yahoo! Group: Goldenhar Syndrome, you'd need to apply to join, but it's worth it. I personally found strength in looking at the posts and stories within the group.

With proper treatment and remedial action while taken early can help those who are afflicted with GS to lead pretty much normal lives, although they may have to do undergo a lot of facial reconstruction and operations.

Do comment if you found this article helpful, I just felt the need to spread the word as some of these pediatricians just seem to care about their "future appointments" rather than referring us to some one else who can really help! Assunta Hospital SUCKS!

Carpal Tunnel Syndrome

Well, it's official, I now suffer from moderate Carpal Tunnel Syndrome.

What tunnel? Carpal tunnel. Basically, Carpal Tunnel Syndrom is an affliction brought about from repetitive movements of the hand. As you can guess mine comes from hacking away at the computer for hours on end. So the median nerve (it's the nerve that moves some of the fingers in the hand) gets inflamed, and starts to swell, after awhile it has a nice contact with the carpal tunnel (a little tunnel just under the wrist). That's when you start feeling funky feelings in the fingers.

I started to get tingling sensations about 3 years back. Always happens when I use the fingers to do minor stuff like turn newspaper pages while still holding it up or eating with chopsticks. When you feel a tingling sensation in the fingers, thumb, index finger and middle finger, I get to wish you, "Welcome to the club!"

That time it was still mild, I didn't know, didn't do research thought I busted something while doing Taekwondo, do more typing, 3 years down the road, I can't write more than 5 minutes without a searing debilitating pain in the wrists. At night at times, I feel like my arms are dead and boy, does - it - bloody - hurt!!! God, why do these things happen to me?!

The cure? Rest the bleeding thing. Easier said than done, my hands are tools of the trade, I can't do a Stephen Hawking and get one of his really cool gizmos or start typing using a pencil in my mouth. So I guess I got to do the next best thing, rest the hands after 30 minutes of use. Again, harder said than done. 2 months it seems, need complete rest, other than that, wear a splint, both hands had it, went for a cool neurology test. It was quite fun, I thought they were going to poke probes in me, but it was quite civil and the doctors made me feel comfortable. Apart from the electric shocks they passed through my fingers, *ouch*! Oh yeah, they can also do a nice procedure called releasing the median nerve, involves cutting the muscle near the wrist to widen the tunnel. Wow! So I can't punch no more... that's NOT a solution for me at least...!

Well, I'm doing it again, typing that is!!! So until later, take care chaps.

Busy Busy Busy...

Wow, been a long time since I've updated anything here. Basically, been busy, Alden is going to the doctors to determine why isn't he taking to speaking yet. Yup, he's not too keen on speaking and the thing that gets us worried is he's not too keen on communicating. He seems to understand instructions pretty well and reacts (in a big way) to quite a number of keywords that we use like:

• swimming
• kai kai
• ice cream
• walk
• eat
• buy
• computer
• Yakult
• Yogurt

Other than that, not much. When he's playing, he gets so engrossed into his toys etc and doesn't bother when people call him. Really annoying this! Get pissed off at times!

We went to the doctors recently and guess what?! Doctor also didn't have a clue, I was worried that he was autistic but from observations of the paediatrician, looks OK. Suspect now is a hearing problem, perhaps some words he can pick up easily because of the sound. So we're going to get a referral from him. did I mention that per visit we have to pay RM150? Overkill... whoa.

I'm busy with projects right now, one of them is for a friend, http://www.jscabinets.com.my a site for kitchen cabinets, wardrobes and general contracting. It's a so so design, wanted it simple, more bloggy style so that the SEO can work, but funny thing is, Google bots doesn't seem to like .com.my extensions or something. Need to do something about it already.

Try to upload some pix for you guys eh! Funny ones, hey, actually I have one right here!!! Hahahaa, enjoy!

If he knows how to play with toys without eating them, or dropping them, he's not autistic. Here's some documentary proof of that. He looks like endorsing some more.

If he can watch TV for more than 10 minutes, he's not autistic, another documentary proof. This is his face after coming back from requested morning walks and watching Open Season.

Till next time!!! Check out the spare tyres on his abs, put mine to shame....!!

4 months!

Awww... the neglect, I've been so busy these past few weeks that I haven't got time to update the blog as much as I'd like to. My computer also underwent some reinstallation hence, the utility I use to upload pics to blogspot is gone as well! Anyway, casting back to what happened in Alden's fouth month on Earth........

Spead the LOVE (virus) around!
Ah yes, ILLNESSES!!! First, it started with Karen, she had a mild cough and a sore throat, but a dry one, then she had a fever and something like a flu got to her, then, after about a week I started developing the symptoms as well... Don't get me wrong, we pretty much stayed out of Alden's way, we tried not to carry him and all, Alden also started to sleep with Grandma (cause she's healthy, and I'm like taufu) to isolate him from all the germs floating around at night. Karen wanted us to get well as soon as possible because all in all Alden was with Grandma for nearly 4 weeks, as the cough didn't want to go away. Despite all the stringent precautions that we took, Alden also got the virus.

So he too started coughing and it's worrying to hear him cough as he can't really expel out the phlegm as well as adults. So we took him to the doctors and he put him on some cough syrup, phlegm medicine and just in case antibiotics. He weighed about 8.7 kg too! his coughing was very worrying, reason being if he cried he'd start coughing and then out comes the milk he just drank! So we have to cut down his milk by about half to stop that from happening. Sometimes he'd go on 6 hours on 3 ounces of milk, very very worrying indeed.

We were anxious because he'd develop mild fever that will go away as abruptly as it appears and whenever we feed him medicine he seems to be droopy and sleepy all the time. After that he started developing rashes!!! Again we went to see the doctor who gave us some anti histamine to help clear the symptoms that looked like hives.

However, the hives like symptoms were pretty persistent for about 3 days, he'd go to bed all clear and the next morning, have a new set of them cropping up. Everyone thought it was the medication that the doctor gave but I figured it wasn't. It's a good thing that Alden has such a good father who can analyse the situation well and I said that it was the Ridsect that we've been spraying into the room. After all, it's dengue season and we've been extra vigilant and generous too with the spraying, especially when my dad has the can!!! Anyway, we stopped spraying for about 2 days and all the symptoms cleared! So Karen's much relieved now and she say that the baby is like me, "Sensitive to everything, must be inherited!"... Ahh, blame the saviour...!

Chinese New Year! Gong Xi Fa Cai!
Well, after that episode things seem to be well, and Chinese New Year came! Wow, Alden really got a tonne of ang pows, and Karen and I were commenting that we have to go through 3 New Years to collect that amount that Alden got! Times sure have changed! I suppose either inflation have really caught up with us or that we have more people giving compared to when we were qualified to receive ang pows. Actually he got a lot from Grandma and Granddad so it's good!

By the time of New Year, he still had phlegm and you can hear it when he breathes. Ugh! Nowadays he like to put two fingers of his left hand into his mouth whenever he can, also he struggles a lot while being fed and is more insistent about everything, like wanting to go out, wanting to see things, wanting to be carried while being put to sleep... Oh he's spoilt...! About the only person who doesn't spoil him would be his dad....! Hahaha, can you imagine having a sensative ear when he's bawling into it... Oh no... I'd drop him to someone else... heh! He's also starting to slim out, even cousin John said so on his last visit to see Alden.

Would love to upload some pics, but I need my digital camera back from Thailand (my dad's having it) and I need to install Picasa first too! See you next time!

3 Months 1 Week

Happy New Year!!! It's now 2005 and as I've said to so many people, the season is less festive each year. This time round, the Tsunami 26-12 (I can see a pattern here, naming catastrophic events and appending the date at the back, at least this time, it occured in the ASEAN region and we used a DD-MM format instead of 9-11 which is in MM-DD format, confused Americans!) came and gave us a rather unexpected shock (no pun intended, really). As of today, the 4th of January, the death toll from the magnitude 9 Richter quake just off Aceh tops off at about 160,000. Your Kong Kong said that he expects it to be about 170,000.... I'd say 220,000, he said the figure was too high :)

Anyways, Alden can now hold his head up quite well, he has also grown noticably longer, and we've christen him thunder thighs as well now, apparently, his thighs are bigger than Grandma's forearm.. scary thought, taking after his father they all said (such indignition).

He's also growing TEETH, at 3 months, he's teething already?! Yup, apparently from the ladies who dare to put their fingers into his mouth and have a good feel about, he has teeth and Karen also said last night that she can already see one surfacing from the bottom gums. Teething periods are especially trying, not only for the baby but also for the caretakers because the baby is especially unruly at this point of time. Requiring extra attention and also throwing tantrums at unbelievably loud levels. We've gotten him a teether but he hasn't taken a liking to it. He prefers the fleshy part of his hand better.

As for me, I'm taking it all in stride, allowing others to calm him down, not because I don't want to take care of him, but rather, I have sensitive hearing and he prefers the upright position now, so sometimes when he goes and has a loud one, I feel like my ear drums are being pierced by knives. Of course, everyone thinks I'm such a wimp because "I can't take my own baby's crying..." If only they knew what a blessing and curse of having sensitive hearing can be.

He is also growing more and more naughty, he expects to go for walks on a daily basis now, knowing EXACTLY what time to wake up, his times are about 4 pm and like clock work he will wake at this time as he knows that Kong Kong and Narti Che Che would bundle him up in his "Ferrari" (stroller la) and go walking around the field. He expects 3 rounds at least and if not given the 3 rounds, he'll protest going into the house after the walk. That does not include bad weather by the way :P

So all in all, he's developing nicely, he also knows when people are upset with him, as I tried to scold him once and he daren't look at him, or rather didn't want to look at me after he's calmed down. Very perceptive, thing is I felt guilty for reprimanding him as he can't help crying if his gums are itchy now can he, ok la, give chance, next time have to be more patient...

So until next time, I'll get some piccies up for ya!!!

How you doin'? 

This is just for scale and comparison purposes! 

My Favourite Picture... Notice the right hand :) 

Hahahaaha!! ME HAPPY!!!! 

10 Weeks - Fatty Baby!

Upon Grandma's Arrival...

The two weeks with grandma came and went, we had a wonderful time being able to take care of him at nights as he's less fussy now. Sometimes we have to export him over to my mum for night care as he wouldn't stop crying, somehow he feels better with grandma. Now however, he has learnt to sleep reasonably through the night provided that we feed him well before 12 am. So that works.

Karen and I also alternate (or try to) duty nights, so on one night, she'll feed the baby and on the next I'll do the feeding, however, I think I've been cheating because I don't remember waking up as much. Anyway, Alden now wakes up at about 5 to 7 am in the morning and that works well with Karen's schedule. So no complaints.

I am now happy to announce that I know how to hold him properly and also know how to burp and feed him. Woohoo! That's a great achievement knowing that I'm so afraid he might get broken if I mishandled him. Well, I've been told off several times, but hey, practice makes perfect!

My mum came back from her hiatus just 2 days ago and I haven't heard enough of "Alden's really fat..." from her. She even now suggests that we should switch back to S26. I dunno, all this switching isn't too good for the baby methinks.

Alden now weighs about 7 plus kgs and have really ballooned up, I'm sure you agree from the pictures I've uploaded here. He's eating well and also very talkative, everyone adores him when he "speaks". I just wished he made more sense. I'll entertain you with a video of his "talks" whenever you come visit me :) Thanks goes to Chong Lee for his Video Camera, very handy! He's also more alert in the day time and almost refuses to go to sleep during the day, insisting that people carry him around, and there are more people than not who will oblige to his "requests". I sometimes take pity on the maid as she has to drop whatever she's doing to attend to him, but only sometimes as I know she also adores him and likes to carry him around too!

Thank God for Sunarti who has really been a great help. I never had such a great maid, she conscientious about her work and very professional a self starter and never complains. I'll have to write her a shining recommendation when she decides to go back to Indonesia.

Here are some pics, enjoy :P

This was Karen's idea... 

Whoa! Big size now! 

Alden's 2 Months Old!

No More Problems!

Alden is now eating well, at first he was put on S26, Karen preferred this infant formula brand by default because apparently its her family tradition, her brother and sister also were brought up on S26. Funnily enough, my mum also used S26 on myself, Kenneth and Billy; my brothers. So we were quite content with using S26. We managed to control the vomiting baby, it seems that this is due to the mixture of mother's milk and baby as well. Not because of GERD or Pyloric Stenosis. So panic's over!

Since then, we've switched over to Enfalac A+ that seems to work well as well. Apparently my mum said that people told her that S26 creates fat babies. My mum seems to have something against fat people hence, she encouraged the change. There weren't any ill effects from the switch either. We also found a nice little shop located near the badminton hall near Ming Tien that sells really cheap baby formula, where is it? Well, if you look across the street from 7-11 at Taman Megah you'll find the entrance to the badminton hall parking lot. Simply drive through it half way and you'll find the shop. So go tell people who are having babies now. The stuff there are like nearly 10% cheaper than the hypermarket ones. At the rate Baby Alden is finishing the formula, I think it's a good thing we found the shop. He's now steadily consuming 6 ounces per feed, with 3 hours between feeds.

My mum also took a hiatus to balik tong san (visit China). So she'll be off grandma duty for about 2 weeks. Thank God Karen's mum took a 2 week leave to relieve her, so grandma 2 will "enjoy" his company for the next following 2 weeks.

He also took his second round of shots and the doctor warned that he might develop a fever from the reaction to the shot, so taking the advice of Karen's mum we bought a nice temperature monitoring strip. Very functional, it reads the person's temperature right down to the nearest .2 of a degree within 7 seconds of resting it on the forehead. With a baby that's an achievement, cause Alden likes to move his head randomly.... Anyway, he was fine, did not develop a temperature or anything. So that shot went well :)

Enjoy the pictures!

Getting ready to brave the rain!! 

Sleeping ... ZZzzZZzzzZZZzzzz! 

Baby Alden at 6 weeks!