Appointment, appointment and appointment

Last Tuesday, we had appointment with a rehab doctor. She decided that Alfred needs a seating support system to help him to cope up with his kyphosis. We shoot several questions to her about kyphosis like..

We : it is necessary for Alfred to get the seating system support for his kyphosis? Are we too early in judging his kyphosis?

Doc : Yes, your son will need this seating support now as it would prevent further complication. It better early prevention than it too late. Alfred is not suitable for a bracing now as his body structure is too small for a bracing to fit in and of course bracing is much better.

We: How the seating support systems help Alfred in kyphosis? We had try to find information about these seating support system at our friends blog or in the internet, but we couldn’t find matching evidence showing that a seating support systems actually help achondroplasia child’s that had kyphosis.

Doc: We had tried on several children with kyphosis but not achondroplasia and find it actually 90% work. The custom shape seat is made according to his body structure. Its pressure the curve point at his spinal and it actually help him to sit straight without curving his body. It will then help to cope up with kyphosis.

We : Will Alfred be giving an x-ray before he gets his seating support system?

Doc: Nope. We will get him x-ray after 3 months with the seating support system.

The appointment for measuring his body structure was fixed on Friday. Here is a few pictures taken during the progress of making the custom shape seat. My poor Alfred cried a lot till he is shivering. I do not know how long he need to suffered for this but I hope it all go away soon. I cried inside my heart to see this situation. It pain to see him crying helplessly. Poor boy! His next appointment is set on next week Tuesday to try out the custom seat shape. I’m curiously waiting for the day and wonder how it looks like as I can’t find in at the website the doc mentioned. Let wait and see!!

1st Appointment on Tuesday

Standing all by himself

Happy to get himself up

Appointment on Friday, the progress started, doc get his vacuum bean bag out ready for Alfred

1st Attempt on seat, Alfred cried very loud

2nd attempt, he cried as loud as he can plus with leg kickings and waving to me insist to hug him

Doc on progress to get the custom shape seat according to Alfred body structure

The structure seat is ready to be sent for fabrication of the seat

Alfred had a clock toy with him to played with and totally ignored the doc

Before the left the rehab clinic

p/s : Thank you Tonya for your informative blogs. I printed out several information about kyphosis and achondroplasia for doc reference and she amazed I could actually get so much information. I told her, it is from an amazing friends in the blogworld I met.

Sunday...

Alfred wakes up at 8am in the morning. As soon as he wakes up, he starts demanding things by pointing here and there either the toys inside the cupboard or my makeup desk. When the demands being refuse, well, you will be getting eye tears and frown faces. When the demands are being followed, well, you will get a laugh from him. His laugh really make my day.

So, I gave him my cosmetic box. All he does is he take out all my face cream, toner, etc from the box and after he done so, he gave me a big smile. When the box is empty, he will get all the things he thrown out back into the box. He will repeat doing this until he gets bored. I wonder what fun he makes out of that activities. If only I could read his mind…

Getting momme stuff out of the box is kinda fun!!

And, I'm successfully wakes daddy up too!

Getting the things back into the box..


Ohh...I'm getting bored

As our routine Sunday morning activities, we went to my mom stall to have our breakfast. It’s a special Sunday because Alfred screaming hysterically at everyone that passed by. Everyone wonder why this boy is screaming and nevertheless, he is getting attention from everyone inside the shop. When someone approaches him, he will defend by hitting himself on his head. When I insist, NO!! Don't do that!! It's hurt. BUT, he show me again. I can't figure out why he does that and he always does that lately. I wonder....

Am I so poor in understanding. Mmm, or yes, maybe I do.

Dangerous Act

Since Alfred is strong enough to stand, he is now growing beyond our expections. He is no longer a boy that can sit quietly on his seats which does not make us worry. Nowadays, we have to be alert when we put him on the high chair. Let see from the pictures what this boy can actually do.

He is trying to get his momme attention with his smile

Pointing at the cartoon

Looking up at the ceiling fan backward (this is the 1st time he did this)

Trying to pull himself up

Getting back to positions

Trying the other side

I told him to seat, he show me this face

He is getting wild by pulling his leg up on the dashboard

Looking at momme proudly

p/s : I'm going to post more picture on facebook later..more dangerous acts :)

Checkup at SDMC

I have made a mistake.
I’m so regret I have actually chosen government hospital for Alfred checkup. They really disappoint me. People said government hospital has been improving but it doesn’t. Maybe in term of services, yes, but when it come to knowledge wise, the doctor are too young, barely even some of them are at my age or younger where I got to know from their name tag. The same questions were being thrown at us each time of our visit like : Why? How come? Any family members have the same condition? But my hubs suggest we should still be going to the government checkup since we have come so far with that hospital and most of Alfred medical records are with them. Should I or shouldn’t I? His next checkup with them is on May. I will have the time to consider.

I have opts for private hospital for Alfred checkup to look out for 2nd opinion. After getting medical report from the government hospital, I’m pursuing to my company doctor for recommendation. They recommended me to Dr. Choy, a genetic pediatrician at Sime Darby Medical Centre. The first visit was ok, he explained to me things I should know about dwarfism, a copy of note on dwarfism and few question about his breathing, his physical movements and etc. He will review him every 3 months to monitor his grow. I’m lucky because my company covered all medical expenses for Alfred. The not so lucky stuff was Alfred insurance coverage was rejected by 2 insurance companies. Well, we will try our very best to get Alfred cover with insurance, at least a fund plan for his future educations.

Last Saturday, Alfred had his 2nd checkup at SJMC with Dr. Choy. We rose concerned on Alfred tongue that creates an “M” shape. Old folks said children with “M” shape tongue will have difficulty in pronunciation but Dr. Choy said that we need to monitor when Alfred learn to talk more as he grew older. Apart of it, his running nose is getting worse when flu turned greenish. Dr. Choy given him medicine to control his flu, nasal drops and will be monitored for another 6 weeks. If the symptoms still persist, then Alfred will have to send to ENT for further investigation. The last concerned is his spine. We notice his spine is getting curvier when he sits but when he stands it seemed to be lessened. Dr. Choy worried that lumbar kyphosis might occur and he recommended us to Dr. Taayah, a consultant rehabilitation physician.
The appointment was fixed yesterday. We went to see Dr Taayah and we discover that she is a nice lady doctor. Alfred was asleep when it is his turn. We gave Alfred x-ray which he took when he was 5 months old. At that time, the kyphosis is seemed not appeared yet. Well, after 15 minutes of understanding Alfred situation, we have to interrupt Alfred sleep. Well, that boy did not cry when I wake him up but he cried out loudly when the doctor touches him. Later, Dr Taayah called up Dr Anthony from German, basically he is based in Singapore to help on analysis and evaluate on Alfred spine. Alfred cried even louder when Dr Anthony examined his spine till I can feel that he is shivering. Poor boy!! After several discussion and suggestion, Dr Anthony will have to bring his gadget to custom made a seating seat (sort like car seat as described) for Alfred body as his body is too small for a brace. But Alfred will be needing an x-ray before the custom made things proceed. I wasn’t so understand the seating seat concepts as far as I concerned. I wet through Tonya's blog and achondroplasia website but I don't find any explaination closer to that recommendation. Since I have no one to compare or check with, I will have to bear with that recommendation first. Dr. Anthony will bring example for us to view on the next appointment for more understanding. Dr. Taayah encourage us to let Alfred stand more and gave him lot of activities like swimming, assorted toys and thinks of something that we can help him to strengthen his muscle as his hand and legs which is rather soft as described by her. The next appointment will be on 24th March.

Valentine's Day

We don’t have any romantic dinner nor candle dinner instead we have a family valentine’s dinner. We went to Hawaii Steak House at Seremban, my hometown in Negeri Sembilan. We ordered steak of the house, Maryland Chop, herb and cheese hotdog, salad, soup of the day and sizzling chicken chop. As for Alfred, he is getting some of my French fried and hot dog. For the past year, me and KS used to celebrate this anniversary of love just the two of us. We never celebrated Valentine’s Day with family and this is the first time throughout my life journey. Surprising!! We all enjoy the dinner very much. Reynard can’t be sitting still any longer. He is learning to walk now at 10 months while Alfred pointing here and there to get my attention when I’m talking. He likes the electronic lantern light that hang on the entrance of the steak house which dimed every 30 seconds. Each time the light dim, he shouted, “Eeeee” and “OOOO” while pointing at it. He didn’t eat much as the food was not so suitable for him either. After the dinner we headed back to my in law house for him to get some porridge. After a while at my in law house, we were sitting at the living hall and my lil’ Alfred constantly pointing at the sofa demanding something from me. Then, my mother in law told me that he want to sit on the sofa. So, I get him seated on the sofa. Again, he keeps calling me by touching my hand (since he still not learning to called me MOM and that is the way he kept people attention on him) and pointed at the top of the sofa. I was wondering what he want actually, and again, my MIL said he want to stand. I was shocked!! Stands?? Alfred really surprised me. He could stand all by himself plus shaking his butt showing to me he is dancing. Apart of it, his aunty Kah Wee interrupted, “show you another one”. Another ONE?? This time, he did a turn around when he is sitting. Ohh!! Too much surprised. I was overwhelmed. I never expect him to stand alone plus an extra of unexpected dancing while standing this early. I thought I could only see him stand or walk when he reached 2 years old or maybe further since he is rather small.

I actually make a video to post all these picture but it's seem not working. So, here is goes picture on Valentine’s Day..

Alfred waving goodbye to me!!

Bored??

The Dinner

Funny faces..

And finally, Alfred is standing.

I'm sad because I can't download video of Alfred does a turn around here. I'll try to post it later.