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!