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.
Sunday, February 19, 2017
Saturday, August 13, 2016
Gabe turned 7 years old last month. His birth feels like just yesterday, but so long ago at the same time. Here's the update on all things Gabe.
Medical stuff - Gabe got his 6th set of pe tubes this summer. The tubes help keep his ear canals open so he hears well, and therefor has better speech articulation. He had a sleep study this summer which showed just very mild sleep apnea. His tonsillectomy last year really helped him. He no longer has to wear oxygen at night. We go to cardiology in november for his annual echocardiogram. Ophthalmology says his prescription is unchanged. We got him bigger glasses since he outgrew his old pair. He still takes them off some, but is overall much more compliant.
Feeding - Gabe still has his feeding tube. He is drinking much better this summer. He drinks 20-25oz/day by mouth. He needs to get closer to 40. He still takes baby sips b/c he guards his airway b/c it is "floppy" (poor tone). A lot of it is just confidence and behavior. Eating is going okay. We still see feeding clinic monthly. We have begun again putting demands in place before he can get up from the table while still giving him a choice. For example "you need to eat 3 bites of chicken and 4 more bites of green beans before you can get up from the table. Which bite do you choose next?". Some days are better than others. He has also lost 6 teeth now, so he has to chew with his back molars, which is harder. He is finally over 40 lbs now and has grown 2" in height this year, so that is a positive.
Therapy - Gabe continues to see 4 therapists/week. Speech works on reading comprehension, and spacial orientation. Gabe still stutters and repeats some to give himself time to plan out what he wants to say. If you stay patient, he will get all the words out. OT is working on handwriting without a model. He's also made great strides with dressing/undressing. PT has been improving as well. It is still not Gabe's preferred task, but he's not shutting down. He can finally jump! Stairs are getting easier for him. He doesn't want to ride his bike on concrete...a gym floor is easier, but we're working on it. Looking into some options for different orthotic support to help Gabe run. He likes to roll his ankles which doesn't give him much stability to balance on and spring off of for running. Behavior therapy is continuing to work on staying on task with homework and demands. Gabe is into his responsibility chart and chores have become routine.
School - Gabe will begin his second year of first grade this fall. We're using his late birthday to his favor. He had a great year last year, so I think having the strong foundational year will put him in a really great place. He is reading incredibly well. It's exciting to see.
Alyssa - she's such a joy. Sassy yet kind. She starts at an official preschool in 2 weeks.