I'm so glad there is no mention of storage disease or syndrome anymore from doctors. Looking at Adel now, the doctors now believe that he's just "unlucky" to have Beta-Thal Major & congenital heart disease rolled into one. We now know that we had not managed him well and that chelation and nutrition are probably the answers to the whole host of medical conditions.
Adel's abdomen has shrunk. Thanks to Exjade (an oral chelator). However, we are still mindful and wary of the side effects and getting his renal & liver blood tests done very 2 months.
We are starting him OT/DT by getting him started in a special school! Wow, so looking forward to him going to school.
He's been off CPAP/O2 for the longest time sometimes up to 3-4 hours straight, that we feel he now may not need his ventilator anymore. Of course, it takes time to be completely weaned off O2. He fell asleep on New Year's Eve without any CPAP/O2 and we got a bit worried, however when we hooked him up on the pulse oximeter, his sats were not under 95%. Amazing! Next follow-up with his pulmonologist/cardiologist on the 31st January, we will schedule him for a sleep study and see if we can be completely off CPAP.
During the December school holidays, we did a HLA check on Adel and his siblings. We were pleasantly surprised that Adlan & Nayli are both perfect matches for him, should he undergo bone marrow transplant for a complete cure of his thalassemia. We got in touch with the Malaysian transplant doctors in Kuala Lumpur and we are going to discuss with them on the possibility of BMT.
It will be my project this year to get the most experienced doctors in the world (US/Italy/Singapre/Malaysia) to work in tandem on possibly a "reduced intensity BMT" for Adel. I really need to maximise his chances and reduce all risks for my precious little boy, whom has fought so hard and so strong. It will be a new begining for his little boy.
It's been a long and arduous journey for all of us, but it's strange that thinking of about it, brings a smile to my heart instead. Looking at him and his siblings now (especially Adam cuddling Adel when he gets home from school). I ask myself, could/would I have done it differently? I'll say, "no".
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