Friday, July 10, 2015
Tuesday, July 7, 2015
On Gabe’s 6th birthday, I wanted to give an update on how he is doing. School: Kindergarten wengt great! It is very exciting planning for first grade. IEP goals include being more independent with daily activities like going to the restroom, walking up the stairs, and eating in the cafeteria. Academic goals include site words, reading comprehension, writing his letters, basic addition and subtraction around the number 5, etc. He is learning so much and doing so well. He will be with his peers about half the day and pulled out into special Ed. services with other children for the other half of the day. Hopefully we can back off of his pullout time as the school year goes on. Gross motor: We are still trying to get Gabe to jump. He totally could, he’s just afraid to let his feet clear the ground. He is now going up and down the stairs holding the hand rail. We’re having to remind him to alter his legs. He’s also learning to ride a bike. It’s hard work for him, but so far, he’s pretty motivated. His PT at Redwood left, so he is now receiving PT services at CCHMC. It’s been a good change of pace for him. Fine motor: Gabe is able to write his name, but he still struggles with the G. They’ve had better success at school getting him to do this than we have had at home. He’s really stubborn about coloring and writing because it is hard for him. He is doing much better with snipping with scissors. He is also doing really well with puzzles that require his fingers to manipulate little pieces. He continues to see OT at Redwood. Speech: Gabe continues to amaze us with 6-8 word sentences. He sometimes stutters or rushes to get his words out b/c he has so much to say and his muscles are delayed in getting all the words out. If you ask him to repeat himself or slow down, he articulates much better. Alyssa understands him the best out of all of us. Still working on “sn” and “r” sounds. Trying to work on concepts like, tallest, biggest, smallest, below, above. He’s catching on to those pretty quick. He still quotes TV shows or songs, but not as much as he use to. He still has some oral stim behavior with scratching his throat, but no more teeth grinding. He continues to see ST at Redwood. Behavior: Boy is Gabe stubborn. We have a BT who gives us tips on getting him to participate in activities. For example, he has a worksheet to do for homework. If you break it up into steps, 1 -2 – 3, he will do much better b/c he knows there is an end point. As far as following directions, we had to ask repeatedly for him to do something over and over till we annoyed him and he basically gave in after awhile. Now, we maybe ask him twice and he will then comply. We review rules at the table with him and have started a Responsibility chart. Organization and routine really help him. Feeding: It’s a marathon not a sprint. We continue to see the intensive feeding clinic at CCHMC monthly. Gabe’s mouth has to work so hard to chew. He also has some sensory unawareness causing him to “lose” the sense of food and hold it in his mouth for a long time. He is improving and self feeding more. He does well at home, especially if we listen to music and eat on the deck. He still requires a video or book or more encouragement if we have company over or eat out somewhere. He still has his feeding tube…it’s a blessing and a curse. Although it intimidates people b/c it is something you don’t see everyday, it is a tool that allows him to get all the vitamins and nutrients he needs, stay hydrated, and grown like he should. He is currently receiving about 350 calories and approx. 14oz of fluid/day through the tube. Sleep: Gabe had a sleep study this past May. He’s been tired lately and was due for another one. It showed that he was waking up approx 5 times/hour (mild apnea) and his oxygen level dropped to 80%. As a result, Gabe has been on oxygen at night for the past month. He will be having a tonsillectomy this week in hopes it corrects the apnea and the oxygen will no longer be needed. They will do another study in 8 weeks to evaluate the result of the tonsillectomy. We have noticed the oxygen helping Gabe. He has more endurance and doesn’t always require a nap, so we are hopeful. We are hoping the tonsillectomy will also allow him to eat better and have less colds. Cardiac: This past Nov., Gabe’s Echo showed that his tricuspid valve is a little more leaky. The doctor said no need to discuss re-repair or medication at this point, but he will get another Echo in the fall to make sure there has been no further change. Sensory: Gabe has improved so much around loud noises. He still holds his ears at times, but we’ve been to a Reds game and fireworks without a meltdown…this is huge! He still doesn’t like microphones, so assemblies made him nervous this past year. He still doesn’t like to wear his glasses. The eye doctor said he’ll wear them when the benefit is worth it, so I’m not stressing. He will wear headphones when playing on the computer, so that’s a step. Socialization: We are working with Gabe on playing with other kids. He loves to engage with adults and older kids. He’s starting to play more with kids his age. We are working on initiating. It will come. He’s definitely becoming less shy in a group. Gabe played baseball this year and participated in Special Olympics which were all fun activities for him. As always, we appreciate all of you support. Gabe is such a blessing and changes this world for the better everyday. Happy Birthday buddy!