Sunday, July 8, 2018
Today is Gabe's 9th birthday. Here is an update on all things Gabe: School: Gabe will be going into 3rd grade next month. He loves reading, being silly, and playing with friends. His reading fluency has much improved. Math is challenging with money and time. He knows the names of the different coins and how much they are worth. Adding different coins together is hard for him. Time is going okay. He can tell you the time when the big hand is on the 12, or 6, but if it's on the 1, he'll say 1, not :05. It is complicated if you think about it. Practice, practice, practice. Gabe made friends with kids in his class year. He's really interacting with peers, not just side by side and it's so great to see. Speech: Gabe's articulation is improving. Others are understanding him well, not just our family. We are working on same and different concepts. We are also working on word problems and him explaining why with different pictures or readings. Gabe still scratches his throat, making a crocking sound for oral stim. It's usually if he's hungry, tired, or anxious. He is aware of it though, b/c if we ask him to stop, he does for a short period. He still often quotes TV shows or songs, but we mainly just ignore it. They say be happy he is making sounds and putting the sentences together and he'll learn more of the social norms as he progresses. Occupational Therapy: Gabe is currently working on handwriting. His letters have greatly improved. He is able to write smaller and much clearer when he wants to. We are still working on hand strength for buttons, snaps, and zippers. PT: Gabe's core strength continues to be our key focus. How do you make planks fun? He'll do crab walks, crawl, one leg balancing, etc. He is able to ascend and descend stairs with alternating feet when he has a handhold. His gait twists some and is very broad b/c of his lack of core strength. He still likes to bump down the stairs at our house, but will stay on his feet sometimes with reminders. Gabe still prefers to sit down a lot. It's less effort which I get, but whenever he's hot, or been playing for awhile, he demands to sit. Behavior: Gabe continues to improve in social settings. He's getting less overwhelmed with crowded areas. He also takes turns with other kids, even strangers, and ventures off to explore different parks, play centers libraries, etc. He loves routine and will participate well in the structure of his routine. When things are hard for him, or demanded of him, we often get "no". We track it and often after 2-3 requests, he'll comply, but somethings he just turns dead weight on if he doesn't want to do it. General compliance tends to always be the theme. Token charts to earn a reward are helpful. Making things more difficult as a punishment (picking up blocks, walking into the other room and back, etc) tend to resent him. Health: Gabe's sleep apnea is now just mild. He is sleeping well and it is being treated with Singulair and Flonase. Next sleep study is December. For ENT, Gabe passed a hearing test without a tube in place. This is huge. Those tiny ear canals are growing! Gabe is still suppose to wear glasses. He doesn't like things on his face. He'll sometimes wear them when reading or watching TV. We go back to the eye doctor next month. I may try to get him lighter weight frames to see if they are more comfortable for him. As for Cardiology, Gabe's mitral valve leak remains mild and unchanged. They continue to monitor him with an EKG and ECHO annually. Feeding: We continue to see feeding clinic about every 6 months. Gabe is eating well. His variety is great and he eats what we eat at all meals. He has some texture issues with slimy and gummy things (grapes, blueberries, gummies), but overall does great. He's drinking at least 30 oz/day of milk and water. He still has his feeding tube...ugh, but the good news is, we don't often use it. We may give him a couple ounces of water/week so he doesn't get constipated, or to help him out if it's super hot outside, but that's it. He's eating all his calories. What we really need to work more on is self feeding. He'll bring the fork to his mouth, but he needs to start stabbing the food. Also, if we are eating somewhere other than our house, we sometimes have to just feed him bites to get food in him b/c it's not his routine and he's less willing to help out. He eats great when there is a show on or some type of distraction, but we always try to get him to take a few bites independently to earn that reward. His weight has maintained since dropping the pediasure, however I'm unsure if he's really gained. He seems taller though. We go back to feeding clinic in September. The marathon of feeding is no fun, but progress is being made. Self Help: Gabe is able to use the restroom independently, pulling his shorts up and down, flushing toilet, and washing hands...when he wants to. He will do all of this when he really has to go. Getting him to go pro-actively b/c you are leaving the house, or should try before going here or there is when he often throws fits. He hasn't really had any accidents for us, but I want him to go before it becomes an emergency b/c with his tone being poor, he can't hold if for long. Gabe is dressing/undressing himself pretty well. He takes awhile, so if we're hurrying, he needs help, but when there is time, he can get his underwear, shorts, and shirt on independently. He needs help putting on socks, orthos, shoes, but can take them all off okay. Gabe lets us brush his teeth. He'll hold it in his mouth for a few seconds. I count this as a win since he use to bee so orally averse. Gabe is starting to get in and out of the car independently and pull his seat belt over and help fasten. Things Gabe loves: Toy Story, Books (trying to advance past his love of Clifford), screen time (he loves leap pad and TV), the park, jamming to music, bowling, the zoo/aquarium, chucky cheese, pop a shot, playing catch, yelling boohoohahaha to scare you, and saying "ta-da" when he's done something he thinks is fabulous. Stay gold buddy. Thank you for making me a mommy 9 years ago. You have taught us patience, determination, how to be supportive, and unconditional love. Thanks for bringing so much light and goodness into this world. "I would not change you for the world, but I will change the world for you."
Friday, June 1, 2018
Gabe had an overall very positive 2nd grade year. His reading fluency has greatly improved. He wants to read books to us instead of us read to him. We are working on reading comprehension at the end of the book, not after a single page. He is able to identify 3 and 4 digit numbers. He is learning basic time and beginning to learn about money. He can identify all the coins and tell us how many cents each is worth, but adding different cent values is very hard for him. Gabe's handwriting has greatly improved...it is no longer very large, but when given boxes, he can write a letter within the box. He is also learning to type and use a calculator. He is able to use the restroom independently now at school and is beginning to carry his lunch tray through the cafeteria to the table. He gets his supplies ready and wears his own backpack, even though it's as big as him. We are continuing to work on transitions. When moving from room to room or subject to subject, Gabe often gets distracted or refuses because there is a demand. Also, when work is hard for him, he will sometimes shut down when things get difficult. I sometimes have to remind myself that his stubbornness is the exact trait that got him through very fragile times in the past and this is just him presenting his strong will in a different way - even when it challenges our patience and his advancement. The most positive thing that has happened this year is that Gabe has made friends. Gabe always did side by side play. As a toddler, when kids got rougher and more physical, Gabe was still wobbly on his feet, delayed with his language, and sensitive to loud noises - peers became a little scary to him. He has always interacted well to Alyssa (she demanded it) and says 10 word sentences to us, but with anyone else, he generally regresses. This year, there were some very patient and special kids in Gabe's class who included him, praised him, met him on his level, and made him feel safe. He's still kind of quiet around them, but he smiles, laughs, cheers them on, and is so happy around them. It makes me so hopeful of his future relationships and general happiness. When I was pregnant with Gabe, I often worried if he would have friends...would he be invited to birthday parties? Would he have someone to go to the movies with? Would he have plans on the weekend? After this year, I know he definitely will. Never give up on Gabe. (I intentionally cropped out his friends' faces from this public blog, but the real picture is 10x more adorable.) And as for Alyssa....She such a smart, compassionate, and happy kid. She rocked kindergarten and I'm seeing her understanding and patience of all kids with different abilities shine through because of her brother's influence. 1st and 3rd grades here they come! Can't wait to enjoy this summer.
Tuesday, March 20, 2018
Tomorrow is World Down syndrome Day - 3 copies of the 21st chromosome 3/21. Here is an update on all things Gabe. What's Gabe into? Gabe loves reading (on his own terms). He loves playing whiffle ball, but would rather toss to you and you hit the ball. He loves his stomp rocket. He loves dogs and babies. He loves his IPAD. He loves all things Toy Story. He loves routine and schedules and rewards. He loves friends (3 in particular) at school who play with him on his level. He loves going to the park and the zoo. He loves all things silly. He loves to say NO. He loves bowling. He loves watching his dad play wii. He loves watching his sister swim and do cartwheels. He loves going to the doctor. He loves making people proud. He loves music and dancing. He loves chips and french-fries. What's Gabe not into? Talking in long conversation to kids. He's very chatty with adults, but is quiet with his peers. I'm not sure if that's b/c he recognizes the difference and is aware it's harder for him, or if he's just shy. He doesn't like loud noises, however he's gotten much better with this and will remove himself from chaotic settings. He doesn't like demands. The key is tricking Gabe into thinking he's in control. Example: Gabe, sit at the table. you need to eat your breakfast. "NO!". Better example: Gabe, what chair do you pick to sit at the table? Maybe you can steal mommy's seat and that would be so silly. "(snicker) okay!". Eating - it's getting much better though. It's still work to him, but it now just requires reminders to take a bite, not a fight over getting him to chew. Some of this is Down syndrome. Some of this is 8 year old boy. Some of this is a shy and cautious kid. You gotta love him. "While I wouldn't change you for the world, I will change the world for you".
Friday, September 1, 2017
Cincinnati has the largest city-wide Buddy Walk in the country. It is always a wonderful sight seeing the large crowd, knowing that all of those people support individuals who have Down syndrome. It always warms my heart and makes me feel like Gabe's future is bright with all of this love around him. This year's theme is "the year of the parent". It's kinda silly really....I've been there every year....and, isn't that the responsibility of the parent? I know what they are getting at though. Being a parent of a child with Down syndrome, or any special need really, is harder in some ways. It takes more patience and more time. Some days are hard, but some days are wonderful. Some days his delays seem really significant, and other days, he has breakthroughs. It's quite a journey of ups and downs, but every step of the way has bettered us. Bettered us as parents, and as people. So for that, I will take this honor of year of he parent, because of the hard work I put in, but more because of the wonderful rewards I've gotten out of it. Never give up on Gabe.
Wednesday, August 16, 2017
Friday, July 7, 2017
Gabe will be 8 years old tomorrow. It seems so long ago, but just yesterday all at the same time. Here is a review of all things Gabe: Cardiac: He still has mild to moderate mitral valve leak. Some leak is to be expected with AVSD repairs. We get an ECHO and EKG every year for now. No meds necessary. Keep on keeping on. Respiratory/ENT: Gabe still has some tracheo-laryngomalacia (floppy airway). He has outgrown a lot and his airway has gotten much bigger. It still gets sensitive and swells when he gets a respiratory bug. No using accessory muscles though this year. No oxygen. No admissions. He's on a QVAR steroid inhaler which helps. Sometimes an oral steroid helps too. this part is getting easier. He still has mild sleep apnea. He is a little restless and sometime talks in his sleep. If he's on his side he's okay and he often finds this position on his own since it's comfortable. When he's on his back, he breathes loudly and I can hear him pausing some. He has good energy though. He'll have another sleep study in the spring of 2018. Gabe passed his first hearing test every without a tube in. I've lost count, but I think he had 8 sets of tubes. GI: Gabe still have his feeding tube. We continue to see feeding team every 3 months or so. We have also begun seeing a psychologist who specializes in feeding. He started on an appetite stimulant called Periactin 2 months ago. It's been really helpful. It does make him tired though, so we can only give it at dinner time. We are working on self feeding. We're still in the marathon with feeding. Opthalmology: Gabe's eyes are 20/40. We keep trying to get him to wear his glasses. He's doing better. The doctor said his vision wasn't horrible and just do what we can, so that's what we do. He pairs them well with reading and writing. Dental: Gabe's still not a fan of the dentist. He will let us brush his teeth for longer now. He has lots of crowding. The dentist said pulling teeth would require surgery and we think it's not worth the anesthesia risk for baby teeth. Once all permanent teeth are in, we can look towards straightening options for the front teeth. For now, the crazy crooked smile will continue. PT: Gabe continues with weekly PT. Continuing to work on core strength and balancing. He's jumping well and getting up off the ground correctly which are all good things to see. He still likes to sit down a lot. I'm trying to recognize what is true fatigue and what is laziness when it comes to his rest time. He can move quick when he wants to. He is in higher orthos to help promote running. I think they've maybe helped a little, but not much. He still pronates his ankles. I did have an orthopedic doctor look at him. He said it was ligament related associated with poor tone. There is nothing we can really do about it and hopefully it will correct as he grows. OT: Working on handwriting, scissors, zips and buttons. Gabe has also started to learn typing. ST: Working on sorting and feeling descriptors. He still stutters some when he has lots to stay and needs to stall to get it all out. Behavior: Gabe's compliance greatly approves when he has a schedule. We make a list of activities or use a scheduling ap on his ipad. He likes crossing the things off and getting a reward at the end. We also continue to see success with contingent effort procedures. That's fancy talk for making some thing effortfull if not complying and following instruction. ie: dumping legos out and making him pick them up, walk up and down the stairs, do squats...whatever to make something effortful at the time of noncompliance. It works. It teaches him compliance =easy, non compliance=things are harder. We're going with it. School: Gabe had a great year in first grade. IEP objectives include why, what, when where description when reading, typing, going from ground to kneeling to standing correctly, addition and subtraction, etc. He will be going into 2nd grade in the fall. He is pulled out to special ed about and hour and a half a day. All other education is adapted in the typical classroom. His classmates love him and include him. It warms my heart to see. Happy Birthday Gabe! Thank you for teaching us patience, advocacy, and happiness in the little things You bring so much joy to this world.