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Favorite Things

We have been trying anything and everything to get Kai to be ale to play, interact and do therapy.
And while we do get some help from different organizations, we would not be able to provide Kai with these tools, toys and resources if it weren’t for all of the generous donations made Kai’s Fight Club over the past year!
Here are some of our favorite things:

Physical Therapy/Occupational Therapy:
Physio-ball – may seems like a pretty simple thing, I mean it’s a ball, but in fact it is a special therapy ball to help Kai strengthen his core and head control. Kai does not tolerate tummy time well and tummy time is the first step in getting Kai on the road to mobility. This ball helps because he can practice head control in a kneeling position which he seems to prefer.  He can also sit on this ball and roll on this ball, giving him the opportunity to experience some vestibular motion and strengthen his core.   Of course since this is a ‘therapy’ ball it was $50.00. We would not have been able to do it without you!

I am always on the hunt for small toys that Kai can hold and manipulate.  Toys with lights and noise are great for him and I have spent countless hours in the isles of target, the dollar store, christmas tree shops, toys r us, and any other baby store I come across, just to find him new and interesting things for him to explore.  I also spend a lot of time making or adapting things to work just right for Kai.  I’m not gonna lie, this is one of the more enjoyable parts of my jobs as a stay at home mom of a child with special needs. 🙂

Physio ball

                                                                               

                                                                               

                                                                               Feeding:

Feeding Kai

As Kai’s feeding abilities and interests have fluctuated I have purchased countless different bottles, cups, spoons, bibs, high chairs, food, freezer bags for our long trips to doctors appointments. Not to mention the books, tools and supplies for his blended diet in his feeding tube! Most of these items are little things, but when you have to try EVERY one on the shelf before finding one that will work for Kai, it adds up. Here are a few of the special things we have found that work for Kai, right now anyway.
Born Free interchangeable bottles/sippy with handles. These handles are hard to come by and I have to order them online but it is a great adjustable system that Kai can manage to hold on his own. He used to be able to use the sippy cup top and we are working on getting him to this point again.

Net feeder- this product has been great for Kai. This was how he learned to feed himself. It is also a great way to introduce new foods. Kai is a little particular about food textures so it sometimes help to contain the food in the net, making it easier for him to explore. We used to use this all the time now that his tone is weakening it has been a bit harder for him to control.

Silli Squeeze- this has been a great addition to our snack bag. It is great on the go and I can use my own purée or smoothie. Kai like to hold it while I help him squeeze. Hopefully this will someday be something he can do on is own.

Reusable snack/sandwich bags- a must have for every mom! Kai’s favorite meal is still a PB&J. When we are getting ready for a day out I leave his sandwich bag on the counter reminding me to make his sandwich. It is easy to clean and super cute! We like buying them from local businesses and crafters, but I should probably start making them myself too…in all my spare time…

One thing I did find time to do was to adapt Kai’s Skip Hop Doggie backpack to fit his feeding pump.  ( I will post pics of this in a separate post) This is defiantly one of our favorite things!  Super cute and functional, can’t beat that!

Fun in the Sun:

Summer is here and we are ready to play! We spent most of last summer in the hospital so this year we are making the most of every day we can.  We’v been exploring new local parks and lakes, and we are so excited for our towns Farmers Market to open this week.  Half of july we will be away on vacation, one week down the Cape with Family and then a week in Maine at Camp Sunshine (a camp for families fighting pediatric cancer).  With all of this outdoor activity I have to be sure Kai is protected.

This week we got his new iplay Breath Easy Sun Protection shirt, a new pair of sunglasses, and of course lots of hats and sunscreen!  looks like we are ready for vacation just in time!

UV Protection Sun shirt & glasses

Communication: 

Big Grips Ipad case for kids

Since Kai just doe not have the strength to keep up with his Physical therapy right now we are spending some extra time focusing on developing his language and communication.  At this point Kai has no words and really only

makes the same few sounds he has made for the past year.  We are now working with a speech and language specialist through early intervention.  This week Kai was awarded his very own Ipad from the Regional Consultation Program (RCP) associated with our Early Intervention.  The Ipad quickly becoming the must have communication  device for children with disabilities so we are so thankful that Kai now has one of his very own!  There are so many wonderful apps to help stimulate language, specifically for children with low vision.  I had been to a few ipad workshop at the conferences I went to and I really didn’t think it would be that useful for Kai, but in just a few days he is already becoming interested in exploring it.  He especially like the apps that incorporate music and sounds.

Of course one of my concerns with the Ipad is that he would not be able to hold it, and if he could not hold it up he would not really be able to see it unless I hold it for him, so I found an amazing Ipad case made for kids that is fun durable and best of all has a very steady stand that allows Kai to look right at his Ipad while sitting in his chair!

The RCP also gave us a Step-by-Step Communications Button for Kai to use that he absolutely LOVES!  This  is a very simple big red button that we can record three messages on, then Kai can push the button to hear the messages.  Our PT originally set up the recordings to show us how it worked and Kai really liked it, but this week Mark and I recorded our own voices and Kai just lights up when he pushes that button now!  For now we recorded a few simple sounds ‘ma ma ma, da da da, ba ba ba’ and he just cant get enough.  The idea is when he plays with it we will also repeat the sounds and try tot show him how to make those sounds.  Like I said, Kai is still only making a few ‘ahhh’ sounds so these would be new sounds for him.

Communication button

Research: 

Another thing I have spent a lot of money on this year is books to help me better help Kai.  I do a lot of research regarding Kai’s chemo, vision, and development and while we have tons of wonderful help with all of Kai’s therapists and practitioners, it is also nice for me to have some references and resources to read when I am looking for more. I know many parents how don’t like to know too much, in fact I think Mark probably feels that ways about a lot of things, but I am the opposite.  I like to know the options.  It is somehow comforting to read the  research.  This is nothing new for me.  My personal library, pre-brain tumor, was full of informational/instructional books on breastfeeding, lactation, pregnancy, childbirth, anatomy, nutrition, herbal medicine, etc. and this collection started way before I was even thinking of having a baby myself.  It could take me a year to read a novel, but give me an informational how too text and I can’t put it down.  Here are some of the more recent books I have picked up along the way. Interesting stuff!

books

So there are some of our new Favorite Things!

There are many many more toys, books, therapies and adventures we have been able to provide to Kai thanks to all of your support

so THANK YOU!

I would also like to say an extra special THANK YOU to both of my parents who continue to be an amazing source of support to us in EVERY way!

Kai may have a lot going against him, but we are doing our best to give him a fighting chance

and he sure is LOVED!

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