Hello and Happy October! It's finally feeling like Fall, and I am so happy to be back in my jeans and sweaters again. And I don't feel so bad about squeezing Harrison into his body jacket brace every day now that it's not so sweltering outside! The weekend looks like a perfect one for apple and pumpkin picking- can't wait!

Harry is actually doing quite well because of all of the body and foot bracing- they have helped tremendously in developing his core strength. Even without the braces now he sits up nice and straight for extended periods of time, and he is more like a weeble- wobbling but not falling all the way down- when he sits on the floor- his favorite place to sit lately. He is also initiating steps a lot more consistently- so much so that his physiatrist recommended an eval for a super cool technology to help with more independent walking...more on that after the eval. But I wanted to hug her for just making the suggestion that he might be appropriate for it!

A quick medical update: after about 6 months of freedom, Harrison's seizures have returned. Mild right now, and hopefully temporary- growing? Increase in calories? Allergy season? Extreme fatigue from working so hard at his new school? We are working on saying goodbye to those nasty things again.

Still, we are happy, hard-working, and proud. You all know he does therapeutic riding every week, and for a long time he has been riding Chaya, a beautiful girl who is very big and strong enough to hold both him and the instructor (even me once!) together...

So last week we decided to try going back to more independent riding with sidewalkers for support, and he did great, with a sweet pony named April...

The best part was, on our way home, I told him how proud I was of him for riding by himself, and he broke out into the biggest smile :)

Harry continues with both PT and Feeding therapy each once a week, and even though he is wiped out at the end of the school day, he rallies. Pretty awesome!

Coming Home

So I realized, this is the picture I should have posted the other day. 
September 15, 2008. The day we came home from Children's Hospital.

10 years ago today

10 years ago today this kid finally came home from the hospital. I thought driving into Boston every day for 6 months was hard. Now the fun was really starting- YIKES!!!!! What the hell do I do with this child? All these wires and tubes and machines- please don't trip over them, please show a little more grace and coordination that you usually do, Marcie! And the charts- ins and outs, weighing diapers, tracking seizures and trying to console anyone who might be there to see them. Oh boy.

And then the doorbell rang at 11 pm...hi, I'm your night nurse. Thank goodness, but yeah like I'm really going to sleep tonight.

Then there was the night a week or two later that while putting Harrison into his crib I leaned against the rail and his entire jtube (a very long feeding tube goes into his jejunum, part of his intestines, past his belly, so he can't throw up his formula and aspirate, with the trach and all of course) came flying out- OMG OMG what do we do??? We called Milford and Framingham hospitals, and we raced to Newton Wellesley Hospital- none of them could replace it! It has to be done in Boston! Of course. So we race down to Children's in Boston, praying the little hole in his belly does not close, because of course Children's did not give us an extra gtube in case of emergency when he was discharged home a week ago, and then we learn the jtube cannot be replaced until the radiology people get there in the morning. So let's put in a gtube (the little one that puts the formula right into his belly) to hold the stoma open, and, of course, he throws up. That was a nice experience.

Eventually we got used to our home care nurses, and the idea of having strangers in our home for 2/3 of the day, including overnight. Yes, intrusive, but that 1/3 of the day when I was alone - oy. Some nurses were wonderful and stayed with us for a long time, some just could not stay, like the one who hovered and gave me no alone time with my baby, and the one who smelled so bad from the 20 cats she had at home that Harrison would just sleep for the 8 hour shift she was here so he wouldn't have to deal with her. 

I learned how to change a trach, I learned how to change a gtube (when that jtube finally was replaced after 4 months, even though they told me it would only be 2 weeks, and the result of not being allowed a bottle for 4 months means that 10 years later he still does not have the oral motor skills to eat)...oh it's so easy to go off on a tangent when I recall those first months having him home. And G-d bless John who would walk into the house after a long day at work, just to have me greet him with "Here, take him!"- thanks for sticking around honey :)   I love you!

Anyway, here we are, 10 years later. That trach is gone- YAY!!!!!!!!  Seizure meds have changed and seizures are under control- YAY!!!!!!! And yes, life is still exhausting, but it's ok. He's a happy kid and generally healthy. What more can I really ask for?

This!

This is at the end of the day dance party on Harrison's first day of his new school. I'm thinking we made the right decision. Yes?

I love that my child was able to be in public school for 2 1/2 years of pre-K, 2 years of K, and Grades 1, 2, and 3. He loved it, and he shined. He learned to bask in the light of being the center of attention and being surrounded by friends who fought to be his partner, push his chair, read to him, and play with him, and that has made my heart expand beyond belief. He worked so hard for his therapists and teachers, especially the ones who fussed over him, and he would not have lasted in a public school anywhere near as long as he did without his angel of an aid, Ms. Sally.

But, of course, a typical, albeit inclusive, program was not going to meet his needs forever. And so, to begin his 4th grade year, Harrison transitioned to an out of district collaborative program. This is something I put off for years. He is so social! He loves his friends! He is such a huge part of our community and everyone knows him, I don't want people to forget about him when they stop seeing him every day in school. And then, his seizures relaxed- CBD oil is the best thing ever discovered!- and his wakefulness and alertness increased, and his potential became even more apparent. It was clear that he would be much better served by a program full of children like him, surrounded by teachers and therapists and nurses and aids and other students who were fluent in the language of Augmentative and Alternative Communication asha.org  Harrison has lots of devices for this, including his iPad and some buttons and switches to make choices, play games, and help him to communicate. Our goal is to become fluent in AAC as a family, so that we can not only communicate with each other, but help our friends to be included in the conversations.

So the first several days of school have been great! Harrison is excited, happy, and working hard like he always does. Thank you tec-coop.org, although we sure do miss our Ms. Sally!

Dog Days of Summer

So this is what a kid looks like after 6 weeks of summer camp. Although, truly, a weekend would have been enough recovery time...now we begin the boring month of August when it's too hot to play outside and Mom is scrambling for childcare so that her kid isn't stuck with her lame ass all day!

Harrison did get to spend a wonderful week with his Pop Pop who visited from Baltimore. He loves to hear Pop Pop's voice, and he got plenty of cuddles and chill time. We miss him now that he has gone home, and hopefully we will see him again very soon. We need to put this gem in the mail!

 

With Harry getting ready to start at a new school that will really cater to his needs, I am motivated to put more effort into marketing my photography business. I am working on a Google ad, getting my name added to some resource lists, and of course, blogging. Any advice is welcome!
I would be so grateful if you would share my blog, Facebook page, Instagram, and website with your friends, and if you are familiar with my work, a review in an email or a comment below would be awesome!!!  Thanks!!!

Out of Hibernation

Hello old friends! It's been a while, and I will try to catch you up. In a nutshell, life is good, and we are grateful every single day.

Harrison is now 10 years old. He has made beautiful progress all around, thanks to his wonderful teachers and therapists and doctors and that magical potion, CBD oil. Medical Marijuana has done wonders for his seizure control and his development...so glad this country is finally beginning to entertain natural (non-Big Pharma) options!

Harry keeps very busy. He goes horseback riding, which he loves, and it's in our town so he has a lot of friends that ride there as well.

He just completed 3rd grade in Holliston. He has been lucky enough to have Miss Sally as his para for 5 years!!! She is an angel and so very special to our family :)

He also goes to Hebrew School at Gateways: Access to Jewish Special Education- Sunday mornings are very fun and the ride is full of giggles and cheers when he realizes where we are going!

As a third grader Harry was able to compete in our 5 Town Special Olympics, and he had a blast!! And I was lucky enough to be invited to the floor to photograph the kids and the events- you'll see some on my Sunschein Photography FB page, and here's one of Harrison with his wheelchair outfitted for soccer.

 

Harrison is attending Camp Arrowhead for his - gosh- 4th? summer and he LOVES LOVES LOVES it! The staff and volunteers are so amazing and he comes home either giggling or passed out. He swims, plays sports and games, practices yoga, does arts and crafts, sings and dances...just to name a few activities that wipe him out for the day.

Our big news is we completed a first floor addition, the Harrison I Randall suite / Man Cave. Complete with a bedroom, which has a track lift above the bed, a bathroom with a roll-in shower for his super-cool shower/toileting chair, a tv/therapy/chill out/playroom, and a supply closet that makes everyone jealous for it's size, including me! We also upgraded to a wheelchair accessible minivan (I put it off for as long as I could!) and we have an elevator lift in the garage. Needless to say, I am taking a lot less Advil. Harrison absolutely loves his new space- he knows it's all for him- and I knew it would make our lives easier but I really had no idea it would be so life-changing.

One more big change...Harrison will be going to a new school in the Fall, The Education Cooperative, and while we are sad to leave Holliston Public Schools, it will be really good for him. More on that when he begins.

So in addition to posting updates about Harrison, I am also going to use this blog to highlight stories of other families who have had to learn to surf like we have. I love working with families and creating meaningful photographs for them, and I thought it might be nice to share some of my experiences as I do this.

Stay tuned...