Friday, December 4, 2015

Big long update on Gabe


How is it December already? The business of life makes time fly by. Here are some updates on our family. Gabe: Gabe is rocking 1st grade. We had parent/teacher conference last month and it turns out, Gabe is the class clown. He likes to make everyone laugh. He is having a very successful year. We may even have an ARC meeting in Feb. to set new goals b/c he is on track to meet all of his IEP goals by that point. He is learning to read and can read very basic sentences, which is such a joy to hear. He does well with addition and we are starting to work on subtraction. We've learned that he focuses on homework best, right after he gets off the bus before he gets too tired. It also helps if we set a timer b/c then he knows there is an end point to the work. With speech therapy, he is working on sorting, adjectives, and the concept of "another". With occupational therapy, he is working on pulling objects out of therapuddy. He is writing letters and doing crafts. She alternates these fine motor activites with gross motor work. He crawls through the tunnel, pushing a weighted ball 8 times. He throws heavy balls back and forth and kicks. He gets excited and participates in all these activites which is great. Physical therapy has been more challenging. Gabe's leg tendons are very tight, so we have been doing calf stetches. He has been doing better going from seated to standing correctly. He loves playing tball outside and we catch him trying to jump at times. He is definitely more mobile and active. We are trying to get him to use the correct technique when going up and down stairs. He still wants to hold our hand for stability, which is not needed. He has lots of fear and behavior issues around going to PT. I literally have to drag him to the car. He asks me every morning when he wakes up if he has PT. It's a big anxiety for him and I don't know why, other than it's just a lot of effort. It's also an area of his life he's trying to maintain conrol of. For example, he can choose not to talk. He can choose not to write his letter perfectly. He cannot choose not to move though, because we will pick him up and make hime move, so maybe he's frustrated we can force him to do it. I'm trying to be more strict and demanding with it...more than I already am even. It works some, but I want him to comply b/c he wants to, not out of fear. As he gets older, he needs to make the choice to be active. We get lots of suggestions on the behavior and compliance front, and right now, the behavior therapists suggestions with start and finishing times, positive rewards, clear demands is working. It's such a hard balance to find the right approach. I'm being more strict though b/c he is 6 and needs to do it...there's just a balance to it I need to find. Parenting can be so hard. Feeding is going really well. He's responding really well to a counting chart with self feeding. We've able to extend the time at this point before a reward is needed and sometimes can phase out the reward till the end of the meal. It's great to be making progress in this area for once. Gabe's had lots of doctor's appointments lately. He had a sleep study this fall which shows he still has some central apnea. He is on oxygen at night and this corrects it well. He'll get another study in the spring and hopefully it will be resolved. We also went to cardiology. Gabe still has leaking around his tricuspid and mitral valve. The leakage is equal on both sides and does not cause any extra pressure around his heart, so we are good for another year there. Gabe has been much more compliant in wearing his glasses. He doesn't do it all the time, but I think he realizes the benefit. He has another loose tooth. He'll need teeth pulled d/t crowding eventually, but everything was fine at the dentist. Alyssa is doing great. She turned 4 last month. She's growing up so quickly. Last month she officially passed Gabe in height. Soccer ended and she started ballet. she's had 3 lessons so far and she absolutely loves it. I'm so happy she has a "thing" since Gabe has so many activities and appointments. She has also cut out her nap about 5 days a week. This makes bedtime soooo much easier. She has the funniest quotes. My most recent favorite is, "Dad, you shouldn't run to the office real quick. It's kinda far away. you should drive there." Justin is doing well. His business changed offices last month which was a busy time, but hopefully he'll have a quiet holiday. My work has been very busy lately, but should calm down some soon. I've been trying to have nights out with friends to give myself a break. The holidays are going to be so much fun this year since the kids are really excited and get it more.

Wednesday, August 19, 2015

Friday, July 10, 2015

Therapy with Gabe - 6 years

https://youtu.be/U4r_5U-H6Ok

Tuesday, July 7, 2015

Happy 6th Birthday Gabe!

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!

Sunday, June 21, 2015

Friday, June 12, 2015

Monday, April 27, 2015

Thursday, April 9, 2015

Easter fun

It's been rainy this week and my little girl could not be happier to use her new umbrella the Easter Bunny got her. 





Monday, January 19, 2015

Thursday, January 15, 2015

...and a happy New Year.

Happy holidays! We've had a great November and December. Christmas was so fun this year with two little ones. They were so excited and had so much fun. Gabe has had lots of follow-up appointments this fall and winter so far. He started out December getting new ear tubes. He's been quite chatty ever since, so I really think he's hearing better. Pulmonary ordered another sleep study for the spring. This is just a maintenance check to make sure his apnea is still diminishing. He got his first echo in two years with cardiology. They still don't hear a murmur, but his tricuspid valve has a greater leak in it than last year. This is slightly concerning. Still no need to start medication or talk about any further repair, but they are going to watch a close next year. I hate hearing this, but hopefully there will be no change on next year's echo. We switched from G.I. to feeding clinic and terms of Gabe's weight and eating management. This has been a really helpful switch for us. The feeding clinic diagnosed Gabe with two issues around eating. First, Gabe has a weak bite. It's harder for his muscles to chew, so if his caloric demand increased and he needed to eat more, it was harder for us to try to keep up with the work. The second issue he has is food unawareness. This means that when he has food in his mouth, sometimes he doesn't quite realize it's there and loses track of it. Both of these issues make eating more work. More work plus the demand to eat more calories to gain weight causes him to shut down some. We are going to keep working with this team closely to develop strategies to make eating more fun and for him to know that mealtime can be more efficient and less work. Gabe also had an evaluation at the Down syndrome clinic like he does every year. He is sort of all over the map in his abilities. He's around a two-year-old level when it comes to find motor and gross motor tasks however he is closer to a four-year-old level with some speech tasks. Either way, he is continuing to make really great progress. In the past year he has mastered going up and down stairs, feeding himself more, making basic letter formations, using ING words, and asking in complete sentences, etc. Here's to a new year and exciting things to come. My New Year's resolution this year is to keep up with Gabe's therapy and try not to get discouraged. I need to stay with it and stay positive realizing that it's a marathon not a sprint. Justin and I are also planning to take some time for ourselves and to go out on a date every other month or so. Happy 2015!