Slow slow slow progress since last post. Ajay has had some tough days, vomiting at least 3x daily of secretions from lungs regularly. Lung is not improved but somehow he manages to overcome any obstacles with his breaths. His O2 fluctuates in the low 70's or high 60's with the drastic lows in the 40's. Its been frustrating to re-teach everyone that enters our room about our Ajay and how he operates in his own way, now in moderate care since Labor Day weekend. Yes, a step down, but same problems and struggles. He is weening more from drugs and O2 but in extremely small increments. We are not able to start any further swallow or feedings until he gets off the high flow O2. So he is continuing to be fed through his g-tube in his intestine. He is much more active and expressive, but still not speaking other than an occasional "mama" which warms my heart. Speech will be involved to create a communication board, although his sign language is advanced, the nurses really don't take interest in him and his ways. Paul and I are fine with all the sign language, covering 68 signs...we think its terrific :) but like I said, not everyone does...he is 3 years old now, on Aug 11th. Hopefully his language will develop, but if not, we are steps ahead with American Sign Language! Thanks to the wonderful nannies in China! We couldn't be doing this without signs!! He loves to sign and I have added a few every day and has no trouble remembering.
Again, not much to report on the physical front, but is participating in PT regularly and is slowly taking on more playlike exercises. He stands with moderate asst and full upper extremity support, but loves the train table so much here, that he almost forgets hes actually working! He can only stand for seconds, but the weight bearing is great for him. RT is forever coming in with treatments as well. The vomiting is not alarming to anyone, but seems like its well worth the efforts by Ajay. It really gets the junk out of his lungs and says he's better when the episode is over.
Hope to be able to say more next time, but with progress so slow, its just nearly impossible to post more than weekly. Thank you for all your continued prayers, notes, and txts!
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I appreciate so much that you continue to keep us posted, even though you may not feel as though there is much new to write about. Just hearing about his daily activities (struggles and all) keeps us feeling as "there with you" as we can from afar, and also helps us know how to continue praying.
ReplyDeleteI admire you more than you may know, Carrie. It has to take great inner strength to go through this day after day. I wish I were closer to just stop by and pray with you or give you a hug or bring you a meal or 'something' ...you are so focused on Ajay (like the good mama that you are!!) and I just pray you have some moments to breathe and focus on you every now and then. You are NOT forgotten in all of this and I want you to know how much we appreciate you and how glad we are that you are Ajay's family! I know these days must feel incredibly monotonous to you, especially when you are re-training the staff there over and over again... I can see how frustrating that must be! And good-grief, you'd think they would be thrilled with all the sign language he knows... I'm so proud of that Little Man and the place he came from ~ NDFH is SO amazing and we are blessed to be part of their 'extended family' for sure!!
Keeping you close in thoughts and prayers, as always. May God give you all the strength you need to keep PUSHing forward! <><
P.ray
U.ntil
S.omething
H.appens!!
...we'll keep "push"ing with you!!
Blessings and Hugs,
~ Tanya
Oh my..every little thing Tanya said, I echo!!!!
ReplyDeleteWe will not stop "pushing" in prayer for Ajay!!! And for ALL of you!
I love hearing how well Ajay signs...what a smart boy! And I love how he loves the train table! Yay for Thomas the Train!
Like Tanya, I wish we were closer to do something more tangible, but I also realize the power of prayer and we've got yall covered and smothered in that daily!
Thank you so much for the updates...
Grace, peace, mercy abundant to you...
Judah is one of my favorite little guys ever!!! (And I've never met him.) :) This little miracle-guy is treasured by so many, all over the world! I am so glad he continues to make progress. Thank you for letting us know, too. Still praying for you!
ReplyDelete-Melissa