Oh, My Hair…

My silky hair is falling down, falling down, falling down,
My silky hair is falling down,
Oh, my precious hair.

Same thing happened when I was with Jonathan. It started in the third month until more than the sixth months. It was very bad until you can see my scalp. Everytime when I went to the hairdresser, she will make her comment and start recommending me syampoo and hair tonic. I thought probably Jonathan had taken up all the nutrients in my body as I was breastfeeding. So I went to the pharmacy to enquire for supplements and they recommended me to take Zinc. I can’t remember if it helps.

Now, with Samantha, I’m losing my hair again. At the end of the day in the office, I can see hairs on my chair.  Hairs all over my dressing table and on the floor. Even scarrier whenever I shampooed my hair.

Any remedies or supplements to prevent hair fall due to post-natal hormonal change?

What’s Up with Samantha

Samantha is back home from hospital last Thursday after her readmission for 16 days. We hope the hospital won’t be our second home. It’s quite scary in the hospital as you would see all kinds of patients with some having metabolic disorder like Samantha. The first thing that came to mind is will Samantha be like them? If you know the prognosis of her medical condition, you’ll have the same fear as we do.

In summary, Samantha is suffering from a disorder called Mitochondrial Disease which also caused her lactate acid and PH to be very high. You can read more here as it’s too scientific for me to explained.  This disorder has affected her kidney, liver and brain at this juncture.

Initial abdominal ultrasound could not locate her left kidney and so they suspected that she has only one kidney but latter ultrasound managed to located her left kidney but it is very small. Since her renal profile are quite normal, they will perform a functional test later on her.

Her liver is enlarged. Current size is about 5cm compare to normal size which is about 2cm. The doctor are still monitoring her liver for any liver impairment for liver failure.

We had the MRI brain scan done for Samantha and the result shows that the part of her brain that controls her motor skills are badly affected.  Her eye may be affected as well as the brain controls the eye vision, movement and coordination.

Samantha has to go home with a nasogastric (Ryles) feeding tube.  Not what we expected but at this moment, we can see this is the best for her.  Most importantly, it can help to reduce her vomiting as tube feeding is a gentle way of feeding. She doesn’t have to use much energy as compare to sucking from the bottle because the milk and medicine/vitamin enters her stomach directly.  Tube feeding is common for children with failure to thrive.

Administering medication to her is much easier now as she doesn’t have to get agitated with the horrible taste. Feeding through the Ryles tube requires a feeding infusion pump that controls the delivery rate of the milk (75ml in 3 hours). This will restrict her mobility as she has to be hooked to the feeding pump for at least 3 hours. Another way is to use a Bolus (a type of syringe) but the flow of the milk is faster.

When we looked at other parents with their normal child, we are challenged mentally and emotionally. However, after all these, we are still glad and thankful.  🙂 We are unable to forsee the future and what is the life span for Samantha. What we could do now is to look upon God for His healing powers.  Take things one step at a time and appreciate the moments that we can have with Samantha without neglecting Jonathan.

p/s: To all the mommy bloggers, sorry for not visiting your blog as often as I used to be. Will do that once things are sorted out.

The vomiting urge has subside

All praises and glory be to God.

Today is the 13th day Samantha stays in the hospital. Her conditions are getting better with her urge to vomit stopped. The urge gradually lessen after blood transfusion were done on Wednesday and Thursday last week. This apparently helped to further reduce her lactate acid from 17 mmol/L to 10.1 mmol/L. That is great news for now.

She will still feel pain in the stomach and discomfort from time to time due to the acid level and air in the stomach. Sam is also very clever girl. Even if the medicine is fed via the feeding tube, she can still “feel” the medicine taste and would try to cough/vomit it out. Hopefully she will get over with it and take it willingly. 🙂

Doctor is now monitoring her progress and is expecting to discharge her by end of this week.

Julie and I are doing well. We’re blessed with Julie’s mom who is helping to take care during the day while we are at work.
Thanks to all of you for your concerns and prayers.

God is listening and answering our prayers. May all praises and glory be to our God.

Samatha re-admitted

Samantha has been continuously having constant vomiting even after the last admission. For the past few days, we saw that she became lethargic with sunken eyes. She don’t even cry for feeds anymore, only cry when uncomfortable. She has very mild absorption of food that we feed her, even with breast milk.

On Tuesday, we made the choice to admit her again to hospital. This time, we’ve admitted her to KL General Hospital. She was immediately put on tube feeding and oxygen gas. 10ml on every feed with 5ml of water through the tube.

Doctors there are trained for metabolic disorder patients. Samantha will be reassessed again on her symptoms.

Her lactate acid is now at 17 mmol/L (normal human is 2 mmol/L).

On Wednesday, her feeding is controlled by a profuser machine which will evenly feed her 30ml of milk over a period of 3 hours. She stills vomits but hardly could notice milk stain now. She has also gained some weight from 2.9kg on admission to 3.15kg this morning.

Doctor is suggesting that Samantha to continue using the profuser until she gain enough weight.

Get well soon Samantha.