Backlog journals - 15m to 17m

15 months old

Our fighting for starting pam with the geneticist still not being approved. We have seen spine doctor this month, her upper curve had progressed to 33 degree. The comments from the OI Parents forum was - if Evelyn started the pam drug treatment earlier she would not have this curve at that age. She would have been a moderate type, and not severe. We were super sad to learn this.  I have no idea why Malaysia has such a rule to delay the drug treatment given that the study and research have showed the positive side of the drug. In US, an OI baby started the drug at 3 months old or earlier right after the OI diagnosis. I was truly mad with the doctor here, so I have started to look for overseas help on pam drug treatment.

They still said nothing can be done, she was too young for surgery, so will "watch & wait". The only thing we can do is to watch her posture, do not let her lead to one side, this will make the curve progress badly. So we have came out an idea with sofa as her table and cushion as her chair so she can sit on them with body straight. She loves them very much.

However, when she sits on floor to play freely, we have to watch her posture and never let her sit more than 30 min. This month, Evelyn started to scoot around to reach toys. Her movement always start backward, we are fine with this as long as she keep progressing.

16 months old

Wow, cant believe that we have came a long way since her birth. Evelyn had free of sick for the past 3 months from July-Sept 12. We really deserved a celebration and break. So I booked a vacation to Terengganu beach. This was the first family vacation. It is 5 hours drive from KL, all we have in our mind was the challenge drive as Evelyn had never travelled such a long journey. We were lucky that Evelyn didn't make much noise on the journey to Terengganu. The beach was quiet with no crowd. She enjoyed the beach; the wind; the sand; more importantly, the pool. We have had a good time there.

Just a week after our vacation, Evelyn suffered for flu and cough again. She has had a very dry cough started about a week ago. We brough her to Ped emergency again. The doctors were quite impressed with her condition that her immune system had improved so much. Based on her past sick history, she would have cough badly till suction or admission for pnuemonia.  

Another proud moment this month!!! Evelyn started to sit up by herself from tummy.

17 months old

Evelyn switch from home pool to the big outdoor ones. She had been constantly gainning muscles and core strength. She started to buttock-scoot forward, so she could do backward and forward now. She was very happy that she finally able to do her own mobility. Still, we need to watch her movement closely to avoid fall and bone breaks. Another milestone accomplished. I have recorded each of her milestone. Her progress momentum gave us some positive hope. We have the gut feel that very soon she will be able to pull to stand. It said "have faith at everything you do, because "there is a life, there is a hope". So we have only "positive hope".

We're very proud of Evelyn's achivement. She had no pam treatment, just daily PT at home, and yet she had progressed so well. 

"The struggle you are in today is developing the strength you need for tomorrow".

Evelyn weighed at 17 months old : 6.25kg, 71cm