Star PALS

We have recently signed up with Star PALS - a paediatric palliative care service for children with life-threatening or life-limiting conditions. This decision came shortly after C's last discharge. I suppose the frequent hospitalisation and endless visits drained me out so much, making the idea of doctors, nurses and volunteers coming to our home a very welcoming one.

Star PALS was quick to respond to my application, made their first visit shortly after. The second visit followed closely, which was great! They brought along a volunteer, Auntie June, to interact, bond and build rapport with C. Medi Minders, a service provided by Star PALS, is made up of a group of medically trained volunteers who offer caregivers a few hours of respite for various reasons whether to run errands, take a breather or simply allowing caregivers to connect with friends and family whom they hardly have time for.



Nurse Serene and Volunteer June playing with C

Within a month of joining Star PALS, they have already made 3 visits, with the most recent one joined by doctor to help solve C's bowels issue. C had tears and would bleed every time passing motion and unfortunately developed a phobia. With doctor's advice, medication and monitoring, I actually had greater peace of mind and was more confident in coping with his issues. This was something I really appreciate because it meant reduced (unnecessary) trips to the doctor (usually the only option for C is to visit the A&E) over minor issues. I could always consult the team for advice with follow-ups at home.

The best choice I have made so far =)

Now hoping to look into home therapies for C as well!

Make a Difference

As I laid myself to rest tonight, I had the sudden urge to scan through C's photos, reminisced what it was like to be pregnant with him, how chubby and big he was, how excited it was to watch him meet his milestones and then I wondered how it all came to this. It was unreal. Just 9 months ago he was a budding child and now everything about him seemed to back-track. It hurts bad, still is, I realized.

Looking back then and now, for the progress i have made, I thought I deserve a pat. I have done well for a newbie S(pecial) N(eeds) mom. I have been very open to others about my feelings, about my child's condition, to medical intervention etc. Why? Because I have always believed that my child is different. Being stuck with SMA, at 1.5yo, C has well surpassed other children with the same condition in so many ways. One thing for sure, he is still striving.

But just half a year ago, I held a different understanding to that. My idea of him being different is to not walk the same path others had. Not for C to be locked in a body he has no control over, to suffer this horrible disease indefinitely, a body a life held together by machine support (perhaps against his will). Afterall it wasn't easy watching and "losing" your child a little at a time until all his muscles get wasted. So I was undecided what my response would be when THE question comes - what do you want for your child? 

Until 3 days ago...

We attended a consultation/assessment at a private paediatric physiotherapy centre. Our purpose was to assess C's current needs and to acquire a suitable AFO. 

This was C trying out his AFO. We had the opportunity to make him stand upright to see how well his legs were holding his weight. In doing so, C was no doubt in distress but we could see that he was, at the same time, flexing his legs and trying to lock his knees. Therapist was very happy with his attempts and was hopeful that more could be done for him.

This is it! He could be different! From the bottom of my heart, I felt a glimpse of hope. Maybe he COULD hang on for a cure. Maybe he would not walk, maybe he would continue to get weak but if we start working on his muscles (whatever that is left) he could continue to roll left to right... I would be a very happy mom. Because that is all that I ask for... for C to continue smiling, talking, eating and moving.