So we got to take Caleb to two out of three of his therapy evaluations at the new clinic the other day. It was nice that Brian was off and was able to go with us. We were so very impressed with the facility and the therapists, they were amazing. Brian and I felt so good after we left there. It would have been nice if we could have done it sooner, but Caleb's immune system at that time wouldn't have allowed it! WE are so excited! They have amazing equipment that I hope and pray will help Caleb with his delays.
One of the biggest goals is to get Caleb walking. Some other goals: communication (i.e. letting us know what he would like to eat, letting us know if he doesn't feels well by signing or saying something like 'my tummy hurts', letting us know what he would like to do, etc) brushing his teeth and spitting it out when he's done, dressing himself, going up and down stairs, these are just a few but some of the bigger goals. He can do it!
Also, his g-tube site, continues to leak. We are changing the dressing constantly along with outfits. It has been nice that the weather has been so warm because due to all the leaking, I let him go around the house in his diaper and sometimes a shirt. He loves it, he hates wearing clothes. I have called the docs again regarding trying to get it surgically closed next week when they fix his hernia and unfortunately they put me through to a nurse who has no idea of how many surgeries Caleb has been through already and how if we could group these too surgeries together it would be better for him. So frustrating! But I am praying that it will close on its own before then and he won't need it to be surgically closed.
Well that is all the updates for now. Gonna color some eggs today. Still trying to figure out how to approach the Easter egg hunt with Caleb as I am not sure he will understand. We will see!
Happy Easter Everyone!
God Bless you all!!
God Bless Caleb!!
Caleb was born with two rare syndromes, CHARGE and DiGeorge. Caleb is the 6th person in the world born with both syndromes. CHARGE is a multisystem-effecting syndrome which can cause several severe anomolies. DiGeorge prevented Caleb from developing an immune system. He spent over a year straight in the hospital, had multiple surgeries with a possibility of having more in the future. This blog details his heroic journey and story. God Bless Caleb!!
Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"
1 comment:
I am so happy things are going well, I hope his G-tube opening closes soon.
Hugs,
Crystal and Eva
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