A little piece of heaven

One year since you showed up smiling into our lives. “But newborns can’t smile,” we heard. But you did – you were born smiling and squealing with laughter.

It’s been One year since you made Nathan cry when you came home. One year since you illuminated our lives with excitement, joy, gratitude, intensity, and a lot of plain old fun.

I have watched you evolve into a strong, self-confident, funny, loving little girl. In this short year you learned to roll, crawl, walk, talk, run, get into everything, and share endless bits of joy. You wake up with a scream which quickly becomes loving hugs and kisses as you snuggle in bed with us. You help daddy get Nathan ready for school, lathering him up in the bath, choosing his clothes, walking him out to the bus. You decided to stop nursing one day and love eating all sorts of foods.

You learned how to fall asleep on your own, sleep through the night, go down the slide at the park all by yourself, climb up and you’re working on climbing down stairs, climb up on all sorts of things, and to assert your independence.

Your favorite word is “nonono” – and most of us love offering you things you don’t want just so we can watch you shake your head, arms, and whole body while you say “nonono”.

You’ve got grandma and grandpa wrapped around your little finger and have taught them how to do your bidding at ALL times (including at 3 am in the morning when you make grandpa rub your back while you sleep during your Friday night sleepovers).

You are a daddy’s girl and a mommy’s girl, but most of all you are Nathan’s girl. You love your brother to pieces and he loves you just as much back. You can’t get enough of him! You love hanging out with him in the morning while mommy and daddy squeeze a few more minutes of sleep in – just you and Nathan, chilling. We can often find you covering him in kisses and love bites. You bring him toys, make him laugh, caress his face, suck on his toes.

You’re an all-terrain type of baby – you’ve already been to Brazil, Colombia, New York, San Francisco, San Diego, Catalina Island – all with so much excitement. You love to travel, explore, experience new things – and you take everything in with your serious face and beautiful big brown eyes.

I am in love with your expressions – I haven’t been able to capture on camera even a quarter of them! So many expressions and faces from such a young little baby. A baby who is now 1 year old! Oh Izzy I can’t believe you are already ONE!

And it’s been the best ONE of my life. Thank you for everything you bring to our lives. Thank you for being the most amazing daughter and sister. When I was pregnant and dreamed of having you in my arms, I had all sorts of ideas of how I wanted you to be. You are so much more than I imagined, so much more than I could conceive, so much more than my wildest dreams.

Happy 1st Birthday my beautiful daughter!

Birthday Party slideshow:

Above is a video taken today of Nathan using his Dynavox. For those who don’t know, it is controlled by his eye gaze – the computer reads his retina, and if he looks at something long enough, it makes a selection. You can’t really see in the video, but each screen is made up of boxes about 2 inches tall and 2 inches wide. On the top left there is a button that takes him to the main menu, so he can always get back to the main categories to make other selections. Each category has various pages, each page representing various activities. Nathan hasn’t used the device much in the last few weeks because he was so sick, plus we reorganized the pages, so he is exploring everything and getting reacquainted. But you can see how he whizzes past each page, and goes from page to page looking at different activities, telling us different things, etc. PS this is a long video – I usually edit them – but I wanted to show a long, unedited example of how Nathan uses the device.

Until recently my focus with Nathan’s rehabilitation was gross motor development. I figured that kids spent the first year and a half or so working on their gross motor skills, and then they spend their next year and a half learning to talk. I also figured that if we could improve Nathan’s motor skills, it would also improve Nathan’s motor planning skills and control over his muscles, thus giving him the possibility of speech in the future.

Now Nathan is almost 5 and since his progress with motor development has been so limited I have started to focus a lot more time and energy on communication.

Before I wanted to strengthen Nathan’s greatest weakness, hoping that would help improve his overall development. Now I am trying to focus on his greatest strength – his cognition and his wish to communicate.

So the other day I went to a small augmentative communication conference held in Claremont, California. Nathan was in the hospital and I hadn’t left his side for 5 days. But that morning, I realized that Nathan WOULD get better, he’d leave the hospital and would need me to continue helping him to communicate. So against the screeching of my heart, I left him with his dad and went to the conference. It was a dream come true.

I was only there for a couple of hours – but those two hours gave me SO MUCH.

The first session I went to was led by a teacher at the Claremont Unified School District. She gave a talk about how her class functions, and she had computers set up with many of the tools and programs that she uses.

She described a classroom where ALL of the children use augmentative and alternative communication – some use devices, some computers with switches or other special equipment. She described how she adapts the curriculum for each of the kid’s needs. She described how she used various tools and programs to teach kids of various ages at their individual levels. She described how she spent time every day making the curriculum accessible to each and every one of those kids.

For the parent of a non-verbal kid – it was to die for, a dream of dreams, beauty at its finest.

It made me so happy to see with my very own eyes what IS possible. To see that something that made so much sense to me is not only possible but is already being implemented!

I was glad that I followed my intuition. That session alone was wonderful, amazing, worth gold.

I also went to a couple of other sessions that I thoroughly enjoyed. One was by a Dynavox user, given THROUGH his Dynavox – it was wonderful! Another one was by two speech therapists, talking about different issues and things to keep in mind when using Aug Com devices. I left with a few business cards, a few great new contacts, and a lot of hope and excitement!

I have already gotten in touch with a few people so I can get some ideas about how to continue moving forward with Nathan’s communication skills.

4 years ago I was in my search for therapies for motor development, where I am today in my search for therapies for communication. There are so many things to look into, so much to learn, so much to explore and figure out. But just like we figured out the motor stuff and found the best of the best, I am confident that we will figure out the speech stuff. We already have the supremely talented and amazing Mrs. Ronna on board – I couldn’t ask for a more amazing person to work with Nathan. So now we just have to figure out the school integration stuff. And as always, I will not stop until we get Nathan the best support to develop his cognitive and communication skills.

I leave you with a couple of documents that the teacher at Claremont shared:

https://docs.google.com/leaf?id=12btdIo-fEvwwXOiWkpWif5MLEp43Gzz8eYZKOCukL2MP81lUJd47VrHGXwqE&hl=en

https://docs.google.com/leaf?id=1DiUoqz3nFd18xYi2nLxxyPttAMuJ7tQoFdjQ763XxwhdItQLMxubz60tzbyK&hl=en

* It was dark and we’d just gotten home from dinner and the store. I had my phone in one hand and a used cup in the other. I was watching Izzy and tossed the cup into our large outside trash can. I walked inside and noticed that I was still holding the cup. Yep, you got it – I tossed my Iphone into the trash! Makes me wonder….where’s my mind??!!!

* Nathan is doing SO MUCH better. He is BACK to his happy smiley self. I can’t tell you how wonderful it is to see him feeling well again. We decided to take him off his diet so we could fatten him up – he lost a ton of weight in the hospital. He’s been eating like a pig! He wants to eat EVERYTHING! Today he had ice cream and pancakes – two huge nono’s – he was sooo happy! Already I can see cheeks forming. Hooray!

* Today I decided to blow off his daily therapies and we had a lovely chill out day. After school we went to the park and walked and played in the playground. Then we went to Coldstones for ice cream. We got home and played on the Dynavox. Then we jumped in the pool. Afterwards we went to dinner and then to the store looking at patio furniture. It was a perfect day – he was sooo happy! I loved forgetting all of Nathan’s “extra” needs and just doing what we’d be doing if he didn’t have special needs.

* One terrible thing about Nathan’s recent illness is that he completely lost all of the progress he’d made in therapy in the last year or so. He can’t sit any more, his trunk is jelly again, and his head super wobbly. I’m not sure how this happened – but it sure is sad to lose everything he worked so hard for over a very long time. We are back at square one – but at least we are appreciating his health and state of mind.

* Looking back on Nathan’s recent illness, it makes me furious as most of it was hospital error. He was admitted due to dehydration. Then they failed to give him potassium, even though that’s medicine 101 when someone is dehydrated and vomiting. The low potassium gained him 3 extra days in the hospital, as it messed with his heart and knocked him out for 2 whole days. They waited 3 days to treat him with antibiotics, which meant he continued vomiting because he still had the infections in his body. So of the 6 days in the hospital, probably 4 could’ve been avoided with proper medical care. Which is the reason I HATE going to ER and why I don’t trust doctors. I am trying now to set up home health care so in the future, if Nathan gets sick, we can manage it all at home. I am working with his doctor so we can have a nurse set up an IV, test his vitals, etc etc. In the end it was his pediatrician who noticed the negligence at the hospital, took over his care, and fixed all of their mistakes. So what’s the point of taking him to the hospital when she can manage his case from home? Next time I am not risking my kid’s life by taking him to the hospital.

* I was looking back at last year and I realized that, after receiving 50 HBOT treatments, Nathan’s health improved considerably and that’s when his cognition started taking off. He barely got sick for several months after the treatments. I have started trying to figure out how to take him back to Irvine so we can do another round of 40 hbot treatments. Hopefully we can do this soon!