Yay for Fall! Love this time of year, crisp clean air, apples and pumpkins, farmers markets, Halloween, feeling energized... here's Harrison as Itsy Bitsy Spider.

Harrison is having a great start to Kindergarten- he has amazing teachers and therapists, the kids in his class are so good to him (I almost cried when I realized he was on the "list" for a birthday party where the whole class was not invited!), and he has the energy and motivation to stay up and active throughout the entire school day (at times...he is still a power-napper, and those damn seizures sometimes wear him out). All in all, he loves school, and still loves riding that bus! 

Seizures...ugh. The diet definitely continues to help Harrison's developmental progress, but the seizures are very stubborn, and I continue to hear this from other DIET parents as well. After 5 years of often changing seizures we still cannot put our fingers on any particular precursors, other than early morning when he is due for medication. 

Despite the seizures, though, Harry works his butt off and continues to show so much happiness and pride in himself. He is waving hello and goodbye more consistently, making great eye contact, standing longer and walking further (with assistance), learning lots of sign language, and constantly "talking" with his voice and his hands- he is really enthusiastic and when he gets the giggles he cracks up his whole class!

He participates in all of the class group activities, like doing yoga in Creative Movement, moving around in Math to show Greater Than (more boys than girls) and Less Than, making pictures in Art,

and hanging out with his friends in the lunchroom.

Harrison still rides the horses and he had a blast at the 5K Fundraiser for the barn.

Sometimes when his ride is over he likes to hang out and watch the cute twin girls who ride next.

We went to the Big E and of course the horse show was his favorite part!









 Harrison went to the dentist, which like most kids he usually detests...but this time he was big enough to sit in the dentist chair instead of being on my lap and laying back and feeling so trapped, and not only did he do great, he giggled throughout the whole cleaning! Who knew?

Harry also began participating in a Music and Swim program with his babysitter Maddy, two Sundays each month, through Jewish Family and Children's Services, and HE LOOOOVES IT!!! 

It has been a pretty happy, cozy Autumn for us. Harry had one cold, got through it, and has been chillin out with his puppies,

 

and working on his fine motor skills :)

We sure hope everyone is as happy as this boy is!

The Wheels on the Bus...

Kindergarten! Full day! Wonderful teachers and aid and bus driver...the day is not even over and we have already gotten report that Harrison is having a great first day! Not that we doubted it...school is definitely much more exciting than home. And we are so happy for him!

We met teachers and classmates and saw the classroom at orientation yesterday and Harry was thrilled and so excited, he gets a big smile every time we talk about riding the bus and going back to school.

But I am getting ahead of myself...we still have a few days left of summer, and a great summer it has been. Harrison had 5 weeks of camp at his school, Tuesday-Thursday 9a-2p. It was an adjustment to a longer day, and he did great, thankfully, since now he is in school from 8:45a-3:15p!
Anyway, camp was so fun, the kids played in the sprinkler, planted a garden, and played with some animals. Harrison saw his therapists and worked incredibly hard, and he made some new friends too.

After camp was over we took a few day trips. We have stayed in touch with our friend who began the ketogenic diet at the same time last March, and we visited her in New Hampshire. She is 4 1/2 and doing so well, has made a lot of great progress, and was very excited to see Harrison. She chatted to him all afternoon and he had such a good time with her! 

We also visited our friends at the Cape for a day- Harrison's buddy Sam is such a good friend and loves to play with him, read to him, and help him however he can. I love this picture because it is just a great shot of two regular boys hangin out.

Harrison had a really fun day with his big sister when she took him to Build-a-Bear. She showed him lots of animals and clothes and accessories and he made lots of choices (wasn't impressed with any of the pants selection) in creating Bananas the monkey. He giggled and smiled the whole time and clutches that monkey like nothin else.

Our biggest news is that Harrison has his parents' appetite! Last Spring I mentioned that he had started smacking his lips, and then something clicked and he was starting to better manage food in his mouth. We realized it was time to start with a new feeding therapist and we found a really great one. She has only seen him 4 or 5 times and has already told me she is shocked at how much progress he has made! So I talked to his nutritionist about some more recipes to expand his menu, and this kid is chowing! He loves marscarpone cheese with some cinnamon or peppermint extract, loves avocado, almond crackers, hamburger with avocado, tuna salad...he is actually eating enough to account for half of a meal, which means we can spill out half the formula for that meal! SO PROUD!!! This is what we have been wanting for so long, and it makes me so happy every single time we have a snack or a meal. He had a good hearty breakfast today for his first day of Kindergarten...macadamia nut pancakes.

Sometimes he likes to hide from his food. He likes this meatball just fine, this is just how he plays with his food.

Harrison is also doing better handling fluids like water or milk...he no longer panics, and actually asks for more of his vanilla shake when I squirt a little bit at a time into his mouth with a dropper.

Yesterday we had to say goodbye to Harrison's nurse Liz who has been with him for 4 years. She is having a baby and lives kind of far, but she really timed it perfectly since he is back in school and needs less time with her at home. As a special treat she took him to the Southwick Zoo, and they both had a lot of fun. We are anxiously awaiting the arrival of his newest girlfriend!

And today, as I said, it's the start of a new school year. We know it is going to be amazing.

Road Trip!

School let out on June 14 (the big kids went until the 27th thanks to all those snow days, which are still better than these soupy days we have now!) and we got a great start to summer vacation. The first week was just a chance to sleep in, and then we hit the road!

Harrison and I drove to Baltimore on Tuesday. Pretty easy drive other than 5 or 6 stops to change diapers- his, not mine. We finally arrived right around 5 pm. Pop-Pop met us at the hotel to play with his boy while I unloaded the car and then we went back to his house for a late dinner of Esta's homemade Maryland Crab soup, YUM!

Harrison and I got to spend the next few days visiting with family and friends, some of whom had never met Harry. And I got to meet the beautiful baby girl of the girl who I used to babysit from the time she was 2 months old! And she is getting a cousin...mom-to-be is the little sister- my two favorite girls in Ranchleigh!  OK, who followed that one? I feel old.

Harrison loved seeing his biggest fan Andrea, and he loved hanging out with my former neighbor Steve (who got married the next weekend, sorry we missed it! CONGRATULATIONS!)

 

We saw so many people... he definitely made the rounds! It was so wonderful to see all of you, and we were bummed that we missed a few others. Watch out, we will be back!

Saturday morning Harrison's dad and brother and sister arrived. His big sister is looking at colleges in DC...OMG. We also got to go fishing on the Chesapeake Bay with Captain Andy...the kids caught many many perch (for bait) and over a dozen Rockfish (YUM), and John even caught a catfish. Harrison loved the boat ride, and I think he really liked the captain's fiancee too :)

 

 

James and I played tourist at the Inner Harbor while Cassidy and John drove all the way to DC, twice, just for cupcakes  http://www.georgetowncupcake.com/ - no surprise there!

James loved Bertha's Mussels, and the theater behind the boys is where my dad, Pop-Pop, used to perform in plays.

The brothers were also happy to cool off in the hotel pool after a day in muggy Charm City.

Lots of time with the grandparents, so nice and never enough. Hopefully we will all be together again very soon!

Springtime Blossoms

Well the first 6 weeks of the diet were quite impressive. 
Since then, on a Thursday to be exact, Harrison's seizures have come back like a storm, like the rain we have been getting. Not ideal, but we are very happy that despite these awful seizures, Harrison continues to make progress by leaps and bounds! He is sleeping less, which means he is more awake and ready to work / play. The seizures are different, less debilitating, and very quick.
We are going back up on the medication that we had decreased, and hopefully this will make a difference. The seizures have already decreased some since, and by next week we will be back to his original dose. If that works, then maybe we can try discontinuing the other med instead (which frankly I don't think has ever done anything for him anyway).

On to the good stuff:
Like I said, Harrison's progress has been unbelievable in the last few months! He is growing like a weed, so tall (shouldn't be a surprise, his 14 year old brother is already taller than Dad) and he is so much more awake, alert, communicative, vocal, playful, happy...he looks like a different kid, a big boy, and he feels like it too.

STANDING while holding onto a table or sofa...he made 8 1/2 minutes at school yesterday! By himself!
WALKING across a room- all the way to the front desk at the physical therapy clinic just so he could flirt with the receptionist. And beginning to walk with help of holding only 1 hand! 
SITTING up straight pretty consistently. 
Making lots of different VOCALIZATIONS and intonations, and turn taking with noises like a regular conversation.
EATING...this is a big one- he seems to have really turned a corner with this- all of a sudden he started smacking his lips (he would never even close them unless I was of course trying to brush his teeth) and it is pretty clear he is hungry- he is chewing and moving the food around and he must be swallowing it because it's not all over his shirt. He is practicing at every meal plus snack time every day...scrambled egg, hard boiled egg yolk, yogurt, avocado, almond crackers...these are his favorites and he is doing amazing!

Tomorrow, I can't believe it, is his last day of preschool! Two and a half years of preschool in the same class with the same teacher, who is wonderful and has done so much for him...but he's ready. This summer he will be in a 5 week program, 3 days a week but a longer day, 9-2. Some of this time will be spent with the teacher who he will have next year, and she is amazing and we are thrilled.

Harrison has also become so much stronger and healthier, in part because of getting rid of that trach, and also because of these IGG infusions he has been getting. He was receiving them once a month by IV, but it was getting too hard to get access, his poor veins are so abused, so now he gets a subcutaneous infusion...weekly. A tiny little needle (I know, it's still a needle), three of them, in his belly. It only takes an hour as opposed to the 3 hour IV, and he really barely feels it. The nurses cannot come indefinitely to do this of course, so it is something else I can add to my medical resume, hurray.  

Anyway, check him out with a good helper friend:

HAPPY ANNIVERSARY

As of today, Harrison has been 1 year trach FREE! And what a wonderful year it has been...healthy, happy, HUGE developmental progress...just what we were hoping for!

We saw the trach doctor, he was very happy, and said that even though the hole is not completely closed, we can treat him like it's not even there, he's not worried. (It was almost almost closed, and then I watched him blow it open when he had a cold last month!) No need to stitch it closed, not worth the anesthesia. He gave the OK to start swimming, and I am going to check out a swim program at the Newton JCC for kids with neurological issues. 

And the diet- WOW! It's truly amazing, YOU ARE WHAT YOU EAT. I don't understand how or why, but it works. Harrison is not completely seizure free, but his seizures are way down in frequency, duration, and strength. You can just tell that he feels better, and that makes everything better. We saw the doc and the nutritionist 3 weeks after he began the diet, and they were very happy. We see them again this Friday, and hopefully we can discontinue another med- that would be 3 meds down since the diet started (2 seizure meds and and a daily antibiotic), which is really good because we have added 4 supplements and 2 laxatives! Let's just say this diet is not diaper-friendly, and the windows by the trash cans are all open- WHOOOOO

Still going horseback riding every week, and looking fantastic! Ready to start posting and then brushing his horse after the ride is over...definitely a future barn rat!

Harrison gets PT, OT, Speech, and Vision at school. He also gets Speech and PT outside of school, and has a music therapist and a massage therapist come to the house once a month- yeah, I know, monthly massage, nice.

He works so hard with all of these therapists, he is so motivated, and so proud of himself when he does well, it's really a joy to watch him work. He is sitting up very straight and tall, and working hard on sit balancing and using his hands to catch himself; he is picking up both legs, bending at the knee and stepping forward, and working on balancing while standing up. We are so incredibly proud of him every single day, and we tell him so, and he smiles.

Happy Spring everyone...Harry is enjoying it, just chillin with his dawg...

Keto Kid

It's been two weeks since Harrison began the Ketogenic Diet, and I gotta say, so far so good. It was a good experience from the beginning..check out the view from our room!

Right away the seizures decreased dramatically, and he continues to have minimal seizure activity. Even better, Harrison's development is improving every day. He is more responsive, laughing and reacting appropriately, like the big grin and giggles we got when I told him the other day it was a snow day and there was no school! He is looking people in the eye when they talk to him, showing that he understands directions, and especially responding appropriately and more quickly. He is also shaking his head "no" a lot, and we think it's time to start reminding him that not everything is a choice...

Still, right away he was showing improvement. We went to the hospital playroom and he kept himself up on hands and knees for a good 5-10 minutes while watching and listening to a toy.

He also got a teddy bear upon his arrival, and for a kid who is rarely interested in toys, he was pretty psyched!

We met a wonderful family at Mass General whose daughter was beginning the same diet. I made a great friend, and we both look forward to play dates for us and our kids! We wish them the very best on this diet as well.

Once he got home, Harrison went to the New England Aquarium with his babysitter (the med student- we also now have a Nurse Practitioner student and a Physical Therapy student- not bad, huh???) and her friends and he had so much fun! They also watched kids skating at Frog Pond on Boston Common and had dinner at Fanueil Hall- much more exciting life than I have. He was so fascinated with the brightly lit tanks of fish, and he very intentionally looked back and forth between his babysitter and the tank, as if to say "How cool is this!"

Harrison continues to make progress with taking steps to walk, standing, sitting up tall and supporting his own weight, and he is also enjoying new foods. One of the things allowed on his diet is 3 olives...John and I both do NOT like olives, but Harrison seems to so they will remain on the shopping list. Not only is he limited with what he can eat, but everything he does eat must be balanced out for fats, proteins, and carbs. I actually baked crackers for him, out of almond flour and macadamia nuts- BONUS they are kosher for Passover!

He had a great ride on his horse in the snow last week, and he is now eagerly awaiting his music therapist. We'll keep you posted!