Thursday, October 3, 2013

New Understanding (Beware: Long Post)

The past few months have been filled with amazing progress for Kahsay.  While he still is such a tiny little peanut, he is getting stronger physically.  We are so excited with all of the new things he is trying to do.  

  • He will go from laying to sitting, and is even going from sitting on a stool to standing up.  
  • He is unable to stand unassisted but understands the command and rocks himself to a standing position.  
  • We are working on putting weight on his arms so he can stand up next to a piece of furniture.  We are at the beginning stages of this but I am excited to see his motivation. 
  • We will most likely be ordering leg braces to help stabilize his legs and ankles.  
  • At this point he still does not have the coordination or strength in his arms to pull himself up, but we are continuing to work toward that.  
  • He is starting to babble more and even use different vowel sounds.  We are working on putting one word names to his toys, commands, and activities.  
  • He has graduated from his first vision tracking movie and is ready for the next level!  We know he is ready because it can keep his attention for almost the entire 20 minutes.  
  • We still do not have the results of his growth disorder blood tests, but I am hoping no news is good news.  
  • We are learning that Kahsay limits the amount of food he will take orally and through the g tube.  He will NOT orally drink more than 5 ounces at a time.  He cannot handle more than 4-5 ounces through the g tube at a time. If we attempt more he gags, and becomes uncomfortable and sweaty.  This means we struggle everyday to get in the right amount of ounces.  The endocrinologist suggested we add fat without volume.  I have put off this change until we get the results of the blood test but am realizing the results most likely will not change the amount of calories he can handle.
So much of Kahsay's therapy is focused on motor development but recently many discussions have been centered around helping Kahsay adapt to new environments.  When he first came home we did everything to keep him home and in a familiar environment.  If we did take him out he stayed near us and we often left if he was agitated.  I removed myself from Bible study, Mom's group, church activities, school volunteer opportunities, and even play dates with friends.  As a family we took a year off from sport teams, and other activities that would put Kahsay in environments with too much stimulation.  

While this was needed and important for Kahsay for a period of time, it now is important and needed for us as a family to begin to be involved again in those activities.  Jason and I have not sat together in church in over a year.  We are constantly separated as a family so one of us can stay home with Kahsay.

A few weeks ago Kahsay attended his first group therapy session.  His therapist and I agreed the infant group would be best for him so his mood could remain regulated.  While the other three children played, laughed and performed, Kahsay cried and began to shut down.  I left feeling discouraged and worn out.  I just wanted one time to be the parent whose child was not crying during therapy.   My heart broke for Kahsay but selfishly was annoyed that he couldn't just pull it together this one time.     

The girls have often made comments about "crabby Kahsay" when we are out trying to do something as a family.  We have often left social gatherings, church activities, and even family functions early because Kahsay is agitated.

His therapists explained that when Kahsay is put in an environment that is unfamiliar and over stimulating his senses start to shut down.  I have noticed the few times recently when I put him in nursery and go to pick him up he is sitting in someone's lap and is lifeless and showing no emotion.  He completely shuts down and usually copes by not interacting at all or screaming.

 We now realize it is not in Kahsay's best interest to expect him to behave in new situations and it is not healthy for the girls to be taken away from normal activities.  We are working to find a balance in both of these scenarios.  Someday I hope he can join us in all our family outings but for now it is okay for him to remain in his "safe" place.  We have begun to introduce Kahsay to a few people that will be is constant caregivers besides family.  We hope to have Kahsay stay with a few of these people during church so Jason and I can enjoy a service together again.  We are okay leaving him with these caregivers or family when we go to large social gatherings or church activities that would prove to be too much for him.  We are learning it is the best way to love Kahsay and remain a healthy family.  

It is crazy how I always thought Kahsay's mobility would be the thing that keeps him from participating in "normal" kid activities.  I am thankful to be filled with such hope that he will someday walk and run with his sisters.  In the same way I also pray Kahsay is able to adjust to new environments with help from us and those who care for him and we are able to give him the best environment to help him grow and progress.