Campaign Disrupted

*UPDATE*

PayPal has kindly agree to release the funds raised as an exception.

We are thankful for that!

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There has been an unfortunate twist to our crowd-funding campaign.

PayPal has emailed to inform that they will terminate our account as the collection of funds through PayPal is against their policies. Indiegogo has offered PayPal as payment gateway nonetheless (This really needs to be sorted out!).

Funds raised as of today via PayPal will be rejected. As for funds raised prior will also be locked until further notice by PayPal. As advised, probably requires another 180 days before they will release the funds.

Hence, I urge kind funders to visit our blog for alternative options to help.

Thank you all for your understanding.

We will provide an update on case with PayPal when we have more information.

2D1N Stay

Today we checked in to 'Hotel KKH' for our 1 night 'vacation' stay again. C came in for a routine procedure - undergoing his 2nd sleep test this year. The recent one was done in February. Purpose is to determine if the current BIPAP settings serve him well, otherwise settings need to be adjusted to ensure that he breathes well.

As usual C cried whenever anyone came near him. A phobia he developed over last few admissions. These were taken during the preparation process. Needed to be all wired up - legs, body and head so as to take readings throughout the night while he sleeps.

C has grown heavier (from 9.2kg to 9.5kg. He's a very slow weight gainer) and lankier. This time I did not carry him while wiring in progress. All went well and he settled down a whole lot faster than last time (previously he cried for 1.5hr straight before dozing off to sleep).

I hope he fares well for the test. It will be encouraging to know that his lungs are still functioning well and he is maintaining his oxygen level at healthy level. Will know the results soon. At least I will find out from the tech how he does tomorrow.

All I Want For Christmas

As C gets older, he is more aware of things around him. He is constantly drawn by new objects and demands to check them out to satisfy his curiosity. His mind needs stimulation and he is hungry for new knowledge and skills.

Problem is, his physical disability is a hindrance to his exploration. He requires help retrieving objects, he needs support when sitting, he needs to be carried around in order to explore, he needs someone to hold big heavy objects for him etc etc etc. Simply put, C needs me to be there for him, to act as his hands and legs. As much as I can help, I cannot dedicate all my time to him. There is a limitation to my physical capabilities as well.

Therefore, we are hoping to raise funds for a special tomato chair to meet his needs.

Check out the campaign below for more details.

Losing A Part Of Caelen

C made huge progress in his verbal skills. Picking up words at incredulous speed, often by listening and repeating after us, expanding his already impressive list of vocabulary. Surprisingly, his pronunciation is much better than Cayla's. At 19 month old, C is already speaking three/four-word sentences. Each time we turned on the kids' channel or opened up a book, he would get overly excited, rattle non-stop, naming every objects he sees.

 

That, as I always put it, is God's gift. Something which makes him a uniquely special child.

 

8 incisors and 2 molars

Early this month, C was teething again. His first molars were cutting through and he had a great time chomping on his foods (fingers! his and mine). Unfortunately, the fun was short lived.

 

On the 17th, C went for his second video-fluoroscopy and was found to have difficulties swallowing foods of various consistency. He was coughing after every mouthful of food/water he took. Despite my desperate attempts to explain this onset of coughs, doctor's advice was to stop oral feeding immediately as it increases the risk of pulmonary aspiration.

 

This news came to me not as a surprise but the sudden deterioration of his swallowing did. Fully aware of the conditions of SMA, I was mentally prepared for such a day to come. It's just that C had been eating and drinking well. The coughs were triggered the very same day at the hospital. There were little tell-tale signs that he was slowly choking to death.

As I sat outside the lab with the therapists, I fought hard to keep my pain and tears within. Though nodding in acceptance the results of the test, I was in denial. Even when C was supposed to stop oral feed, I remembered urging C to eat up his baby biscuits as he demanded for more. They had offered to intubate him but I rejected it outright and had to sign an indemnity as an SOP. Could not have felt more angry and upset, I just wanted to get out of there.

As I left the hospital and made my way home, I couldn't help but sobbed uncontrollably. The thought of denying C food and water FOREVER was too much to bear especially when he loves his food THAT much. How would a 1.5-year-old understand? It kills me that it pained him.

Caelen enjoying his 'last' decent meal

 

Upon home, I fed C his porridge and went about tubing him the same night. It wasn't easy for him and for me. The next few days that followed were heart wrenching, with C crying, mouth wide opened for food and milk. The best possible way to go about was to slowly wean him off. Giving him a taste of his milk or even water sent him smiling contentedly.

Sometimes a treat to biscuits (in tiny pieces) willed him to work extra hard for it. That is to wear his AFO while snacking. It has been hard but he is adapting. Still pains me losing a part of him to SMA. Torn, but I have to pick myself up each time something gets taken away from C. I would need to survive countless heartbreaks. This is just the first.

Nurse Alice came for home visit the other day. Said something which brought comfort and brought me back to my earlier thoughts. "Do you know that Caelen is a very special boy? Look at him move, how adorable. Enjoy your time with him."

Indeed! He is uniquely special. He is living by God's grace.
He has spent the last 19 months enjoying foods, talking, breathing, moving, growing up relatively healthy and experiencing life where few actually came this far. We should be thankful. I am.

P.S. Lastly, thank you all who occasionally dropped a message when I'm missing in action, who 'liked' and responded to my Facebook updates when I tried to stay connected. I appreciate that.

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.

Third Hospitalisation

This was his 3rd stay in a High Dependency Ward in 2 months.

Tried our best to manage it at home, went to the extent of supplying oxygen to ease his cough but didn't help much. By 2 a.m., he was coughing so bad he could hardly breathe. He soon ran a temperature and was looking weak. We knew a hospital stay was inevitable and admitted him on 17th.

The usual swabs, blood tests, x-ray ensued. This time round C was tested positive for RSV. He was desating on room air as well as on BIPAP, unable to maintain a healthy oxygen level. At his worst, doctors were supplying 4 litres oxygen with BIPAP support. Good thing was he made speedy recovery and weaned off oxygen quickly.

Reading a book after gaining strength

C was discharged on 22nd and is now home nursing.