Friday, September 1, 2017

Buddy Walk 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.

Friday, July 7, 2017

Gabe is 8!

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


I haven't posted a blog post in forever. A long update is coming, but in the meantime, happy Presidents' Day!