Daily life

the G-tube

The G-tube or the technical term, Gastrostomy Tube, this is Gavin’s main means of getting his “steak and lobster” and provides the nutrients and medicines he will need, as he is unable to chew and swallow his food like we would normally do. It also can be used to vent your child’s stomach for air or drainage. So far, the tube feeding is working well. The other great thing is that it is very discreet. Thank you again to all who continue to pray and think about Gavin.

the Suction & the Vest

The cough assist machine vest which is vital for the health of Gavin’s respiratory system. Each time there is a sign of Gavin having congestion, we simple use this machine to suction out “the gunk”. As for the vest, will help with loosening all the gunk in Gavin’s respiratory system costs a whooping $15,000, it will do an effective job in keeping his lungs clear and will prevent any infections and the possibility of pneumonia. We were luckily blessed by Gary and Elizabeth Sheppard from Ontario, Canada who has heard about our situation and has graciously donated their late son’s vest, Noah Sheppard who past away from Sandoff’s Disease in September of 2009. We wanted to also thank the Roman Family of Connecticut for connecting us to the Sheppard family.

Tumble Form Chair

Gavin has a special chair (Tumble Form Chair) which keeps him in an upright position and now he is also using it for sleeping which has been great! He has been having a lot of secretion lately so we have been using the suction pump. The exclusive Tumble form Chair is coated to make them easy to wash and maintain. It has a seamless covering is which is washable, odor and stain resistant, and nontoxic. Gavin may not always want to sit in it, as he would prefer to be held and cradled. :)

The Gait Trainer

A family in San Diego has graciously donated their daughter’s gait trainer for Gavin to use at home. This special equipment is truly awesome and has been a blessing as it helps Gavin to walk around his environment and gain range of motion while being secured with straps and a harness. Ferd or myself would have to maneuver him from behind as we guide him around the house or in our backyard. Gavin usually gets a workout daily using the gait trainer for at least 15 minutes twice a day. Right when Gavin drags his feet, we know that he is fatigue. So far, he is keeping up with his gait trainer workout.