Larry

Every time Harrison gets sick I feel like I am sinking in quicksand. It is so physically exhausting, propping him up among pillows and stuffed animals for neb treatments- an antibiotic neb in the morning and at bedtime that takes at least 30 minutes, plus a steroid neb every 6 hours, plus normal saline nebs in between- and his 20 minute vibrating vest treatment for chest PT 2 or 3 times a day, and carrying him around the house and trying to get him moving to loosen up all the congestion...I guess every parent goes through a similar routine, but stopping everything every few hours for a 10 minute cluster of extremely strong seizures, which usually end with a crash nap for hours, and always get worse when he is sick- that is what will do me in. Physically, emotionally, mentally. Even though he has grown 2 inches since the summer yet lost 4 pounds (now we are adding calories), 40 pounds is still heavy, believe me.

The weight loss may be due to the fact that he is so much more active- yay!- and it might be why seizures have gotten worse - boo!- but really, who the heck knows? At least the kid still smiles through it all. And I may not have gotten anything done for 5 days but all the cuddling I got is one of my silver linings.

And although he has once again given me his cold, generous as always, I know he is feeling better from the smirks I got this morning when he would not let me put his shoes or his coat on him for school.

So, with that, my mood has improved immensely, and I can write about the last few months of 2015...

Harrison LOVES First Grade! Like I have said many times, his team of educators is so amazing and we are so very lucky! He is doing really well, so alert, following everyone with his eyes, reaching for and grabbing things and constantly pressing his "talk buttons" to participate. He uses the ipad to give the Spelling test to his classmates every week. He makes choices with his eyes and with his hands, and he uses so much core strength to hold himself up.

 

Harrison has made especially nice progress with the ipad. He very clearly concentrates on what he is seeing and hearing, and he has figured out how to swipe in and out of apps if he wants to change his game. I love how he grips one end of it while he uses his other hand to tap!

 

Harrison still loves going out on adventures with his friends- anything out of the ordinary is OK with him. The Roger Williams Zoo in Rhode Island is so beautiful, and everything there is accessible, including 2 playgrounds! 

 

And, a town close to us, Sherborn, has a brand new accessible playground and we cannot wait to try it out! These girls and their family helped to build the new playground and they sent us this picture because they are so excited to take Harrison on this swing...(it was also their idea to take him to the Roger Williams Zoo when they saw all the ramps at that playground)

October was for hayrides and pumpkins- picking and painting with his brother, carving with his friends- so fun!

 

 

And of course, trick-or-treating in the neighborhood. Our costumes were great and we carried the ipad for Beeping sound effects - that definitely made the costume!

The big news for this past Fall is that Harrison now attends Hebrew School! He goes to a program called Gateways- Access to Jewish Special Education www.jgateways.org every Sunday. Class of 6 kids, a very talented teacher who is also an SLP, and 2 pretty high school girls to volunteer as his helpers...the kid couldn't be happier! I really just wanted him to have some exposure to Judaism, and he gets so much more- they work off of his IEP and practice everything- standing, walking, making choices, art projects, singing and dancing, even eating a snack. For Chanuka he made a pasta menorah and a marshmallow dreidel (that was delicious!)

It was really cool to see how he recognized the songs he learned in Hebrew School when we lit the menorah and celebrated with friends and family.

 

More adventures around the holidays- we saw beautiful Christmas lights at the Fatima Shrine and had Christmas Eve dinner with some friends, walked on the Holliston Rail Trail with other friends (and half the town!) on New Year's Eve- got a nice selfie with his buddy- and of course celebrated Christmas at our house- check out Harry's new recliner!

 

Harry also began seeing a new feeding therapist this past Fall, and by the second session she was impressed with his progress! He is chewing better, keeping food in his mouth and moving it around and swallowing better, even drinking a little water! He finally had a GREAT swallow study at Children's, so we are getting ready to add a snack in at school for practice!

Harry got to show off to Dahlin and Papa how strong he has gotten, and he had a surprise visit from Dr. Maddy, his babysitter who left us after 4 years because she could not squeeze us in once she graduated medical school!

 

So, are you wondering why this entry is called "Larry?"
Harry sees an SLP in the Augmentative Communication department at Children's Hospital, 2 times a year, 3 if we are lucky. I wish we could see her once a month. In a 2 hour session he does so much- they work a lot on pressing a recorded message (button, ipad) to make a choice or label an object, etc. Last week he did all of these things independently, and he tapped the screen to advance the pages of a recorded story and read the whole thing, 23 pages! He has so much more control over his body and his hands, and he is so proud of himself. Seriously! (In this picture she is guiding his hand but I promise he also did this on his own).

So, this is Talking Larry.

Larry is one of those apps that repeats everything you say, in a silly voice. Harrison often has conversations with these various characters (Tom the cat is another one), but this time...he said "Larry." Yep. We both almost cried!