My world turned upside down

So there's been a whole lot of schedule and lifestyle changes around here that have my world turned upside down. Our nursing schedule is probably at the route of it as we were on a pretty consistent routine. Now having new people in our home seems to be having a negative impact on the kids...medically it covers us better in case of emergency but having so many different people in the home has created inconsistency for the boys and tends to impede on progress until we all fall into a new routine. Just so frustrating that this came at such a critical time in the boys development.

We are working with an occupational therapist for Cameron with expertise in Sensory Processing Disorder. He still doesn't eat, sleep, speak. We are changing everything around here to accommodate his new found sensory problems. His new "Sensory diet" is cumbersome and requires a lot of trial and error and patience. We need to desensitize him to tolerating the activities that currently send him into overload. This is a huge part of our lives and is very difficult for many to understand and very very hard for us when loved ones don't get it. Please take the time to google SPD to understand more about our sensitive man.

On a good note, Brody went to St Chris feeding today to a friend and speech therapist Jamie who is helping us work through the food texture plateau we thought we had reached due to his Trach. It seems it is safe for him to move on past Stage 2 purees... We just have to condition him to tolerate new textures. He wasn't the biggest fan but he swallowed them and ate a ton! Can't wait to keep moving forward and I feel like she's finally the right ST to guide us there.

Oh and Brody graduated out of Physical Therapy!!! This time last year he didn't move his legs at all and we didn't know if he would ever walk... Now he is practically running and graduating his first early intervention service!!!

It may take my guys longer than regular kids, and even your typical preemie but let's face that they were handed some very challenging cards... Whenever it is I will never lower he expectations I have for them to achieve just the timing.

I have had a lot of days lately where I have felt like I couldn't continue to keep it together with all of these changes and an altered support system but just like always I pulled myself back together and we all lived to fight another day... And fight we will.




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