Caelen's Quest: March 2014

19 March 2014

Second Challenge

In March, Caelen went for a series of follow-up appointments with various doctors. Here's an update:

Respiratory - Sleep Test results showed overall oxygen level at 93% (less than ideal of above 95%). Lowest oxygen level at 73% (frequent drops observed). Usage of a BIPAP machine during sleep is necessary to improve his breathing.
Chest Therapy - Senior therapist checked and noted that he is not using full lungs capacity to breath.
Physiotherapy - Weak trunk and limps. Need to continue with therapy at home to at least maintain and hopefully improve his strength.
Occupational Therapy - More than satisfied with his fine motor skills and cognitive development. Praised that he is a smart boy and is able accomplish complicated tasks suited for older tods.
Feeding - Doctors were concerned as he was no longer chewing his food and he seemed to have slight problem swallowing. Caelen was thus scheduled for a videofluroscopy early next month. Doctors also noted that his weight is not climbing as much as it should and I was ordered to thicken his milk as well as putting him on Valens Carborie.

After numerous trips to the hospital, Caelen came down with a fever 5 days ago with no other symptoms. Kaelyn's daddy and mommy (another special family) were kind enough to come check on Caelen (to ease my worries) and loan us their portable oximeter for monitoring his condition. That very night, Caelen's temperature shot up to 40 degrees with heart rate at 213, his vitals triggered the alarm. Drowned in the beeping of the machine, hubby and I sponged our boy for close to an hour, finally bringing his temperature and heart rate down to desirable level. Miraculously, his fever was completely gone the next day.

Caelen subsequently developed a cough in days that followed. We started putting him on BIPAP to regulate and aid his breathing. He cried incessantly each time we hooked him to the machine, we even tried to calm him by playing his favourite videos. Unfortunately, he vomited on different occasions, with one particularly bad that he erupted like a fountain. That I'll need to check with his respiratory doctor on the cause.

For now, his MMR inoculation this week had been postponed. He is on BIPAP (during sleep) for as long as he could tolerate. Otherwise, sometimes I think he fared better without.

3 March 2014

Caelen Is One!

Overnight Sleep Test at KKH

On 28 Feb, Caelen underwent a Sleep Test at KKH. This test is often conducted for patients with sleep apnea or related sleep disorders. However, in the case of SMA patients, it is used to identify their sleep patterns, access respiratory functions and to also understand how the changes in airflow and pressure aid their breathing while asleep.

In order to take detailed readings of the above mentioned, technician needed to wire him up to a few machines. Took us almost an hour and a half to complete this delicate task with Caelen screaming and crying the entire time (not a great experience). He continued to protest for the next hour that followed, leaving me emotionally and physically drained. But the night ended well with him knocked out, totally exhausted.

We celebrated Caelen's first birthday cum fundraising the Sunday that followed. It was the best celebration ever and fundraising was a success! All these not possible without the help from families, friends and lovely people.

Heartfelt thanks to:

Mr Rahul Sharma & Ms Beh Hui Shiang the venue sponsors (very lovely place) for this party
Ms Isabel Lee-Shorrock the resourceful planner who has helped in ways I could never thank her enough
Many friends who came and helped out with the logistics and setup
Families and friends who came for the birthday party
All kind donors and supporters for the fundraising program

Special thanks to kind sponsors:

Mr Case Woo & Ms Tammy Sim for designing the 'Thank You' cards
Mr Tan Jit Khoon - Winson Press Pte Ltd for printing the 'Thank You' cards
Mr Bernie Lee - A'zone Corporation Pte Ltd for the customised Sesame Street backdrop
Ms Rena Tan & Partner - Sugarena :: Candy Buffet Stylist for the candy table of Sesame Street treats
Pan Pacific Singapore for the Sasha's Bears
Ms Annabelle - One-Stop No. 1 Entertainment for the lovely Sesame Street balloon sculptures and face-painting session
Mr Joe Lim - Wow Let's Party for the helium balloons & Elmo balloon bouquet
Mr Eisen - Birthday Party SG for the fabulous entertainment
Ms Samantha - Hey, Cupcakes! for the pretty and delicious Cookie Monster cake
Ms Renae Lim - Say It With Sugar for personally baking and decorating the Sesame Street cookies
Ms Vivy Toha for the organic Nutrifresh soya milk sachets
Mr Alex Pua - BellyGood by Tung Lok Group for the professional service and logistics arrangement

Finally, hubby and I did our first live TV interview with Channel News Asia AM Live today, a special arrangement by Mr Kenneth Mah of RDSS. For those who missed the live telecast, this is the link to the video clip http://www1.channelnewsasia.com/amlive/2014/03/03/interviews-rare-diseases/

Raise awareness, bring about changes and new hopes for all rare diseases patients.

Beginning of his Journey

Caelen was diagnosed with Type 1 Spinal Muscular Atrophy (SMA) on 13 Jan 2014, at age 10 months.

SMA is caused by a missing or abnormal (mutated) gene known as survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein in the body called survival motor neuron (SMN) protein. In a person with mutated genes, this protein is absent or significantly decreased, and causes severe problems for motor neurons. Motor neurons are nerve cells in the spinal cord which send out nerve fibres to muscles throughout the body. Since SMN protein is critical to the survival and health of motor neurons, nerve cells may shrink and eventually die without this protein, resulting in muscle weakness.

The hallmark feature of SMA Type I is that children are unable to sit or stand without help. They will require equipment such as strollers or wheelchairs for mobility. Swallowing and feeding will become difficult for children with this type of SMA and they will eventually lose the ability to swallow safely without aspirating. Children may eventually require a feeding tube to supplement their nutrition which permits the administration of liquid food into their stomachs.

Children with SMA Type 1 will also experience weakness of the muscles used for breathing, those that help expand the chest and fill the lungs with air. The chest is smaller than usual in these children and they begin to breathe using primarily their stomach muscles (belly breathing). The lungs do not fully develop due to this type of breathing, and coughing becomes very weak. It may be difficult for children to get enough air into their lungs while sleeping, and eventually throughout the day. Many of these children will require equipment to help them breathe; again this is based on what each family chooses. Weakness also leads to problems with the spine (scoliosis) and hips (displacement) that may lead to further loss of ability/function.

Source: Families of SMA