Tuesday, August 16, 2016

Lakshman Update // Our Children's House Feeding Program Therapy

Three weeks done!  Lakshman and I have been in Dallas for three weeks now, I can hardly believe it.  

If you have been checking in on him for a while you may remember he was hospitalized over a year ago for his feeding issues and came home with an NG tube for a while.  Since then we have found out that he has EOE, which basically means he has trouble swallowing and sensitivities to different foods.  He has been on different formulas with varying degrees of success and has had endless rounds of speech and physical therapy.  

His weight gain and growth has remained an issue, along with his oral-motor strength.  So a few months ago when the idea of a permanent feeding tube was brought up to us again we started seriously considering this intensive feeding therapy program instead.  

Because he has both issues, we felt it was really critical for him to get this kind of therapy.   If he knew how to eat, but just wasn't gaining weight then we could have pursued different, more medical treatment. Since he doesn't we thought this might be his only chance to really learn.  

Not that we didn't try to do what we could to avoid coming here and get him to learn at home.  Including taking him off of the bottle and formula entirely in an attempt to stimulate his appetite.  The good part was that he was able to maintain his weight that way, but he still wasn't gaining.  Nor did his skills improve at all. 

So, at the end of July Lakshman and I packed up and headed out to Dallas.  My Dad drove us up here and has stayed here for most of the month.  Because we left early in the morning Lakshman thought we were heading out to get donuts.  He still asks Nana about when they are going to get donuts once in a while.  Or he tries telling him that he needs a haircut.  All trips he is used to taking with Nana, and his idea of a way out of the hospital!  

Yes, Lakshman can't leave the hospital.  This part has been especially hard on him. 

I am so glad that during the duration of our stay he has made friends here at least because not seeing any of his old buddies this month definitely effected him.  

Ryan brought the older kids here for a week and he just loved that.  His whole body and face just lit up with joy when they got here.  Initially he was acting very shy here but he really came out of his shell after that. 

Ryan's mother came to stay with us for a while too.  She spent nights with the baby so I could get some rest and take a break from the hospital.  All I'm saying is there is no private bathroom and wow, that gets awkward fast. 

When Ryan got here, he stayed with the baby so we could take the kids out and explore Dallas together.  It's their summer vacation too! 

We visited the Science Museum, the Art Museum and the Zoo together. 

Ryan, his mom and the kids are all back home now.  Lakshman and I have one week left.  He needs to start gaining weight a little bit faster and he needs to start eating his meals with me without refusing.

We would be so grateful for any calls/messages/visits that you guys could make.

We have met some awesome friends here but we need all the encouragement that we can get.

Thank you!

1 comment:

  1. Sending you lots of love sweetheart. You are such a strong mamma bear and when he is older, he will be so grateful for everything you have done and continue to do for him. If there's ANYTHING we can do to help, please let us know. <3


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