Rant

This is only a rant, just needing to write, needing to let it out! I'm not even sure I'll post it, i just know that i hate not knowing, not having answers! I just feel so lost, i feel like a failure, as if I'm not doing something right or maybe I'm just doing everything wrong!
Jesus is sick again and once again its his lungs, he's having a hard time breathing, he is having fevers, and no one can tell me how to make it all go away. how to help him stop getting sick! he has seen over 6 doctors just for this one thing his breathing/lungs and no one can help all the doctors say is his lungs are just so damaged we need to let them heal! he is on over 5 medications to help his lungs.
all i want to know is how are they going to heal if he keeps getting sick!
Why why why why why!
I'm so scared so scared that one day his lungs just wont be able to handle it no more! I just want my baby to be ok, and i Pray i pray for him to be ok and i hope, i beg and i plead and i do everything i can and yet he is still sick he is still fighting to breath.
I don't know what Else to do!
i just don't!

feeding

Jesus passed his swallow study he is allowed to eat nectar thick liquids and cereal. yes this is great news but in the almost 3 weeks that we have had this great news today was the first day he seemed to tolerate/enjoy feeding time! it has been a long journey!
In the 2 almost 3 months that Jesus was not allowed anything by mouth he forgot how to eat, drink from a bottle, and basically he forgot that its fun to have food in your mouth.

instead of being happy and enjoying feeding my baby every time after a feeding i would either end up with tears or just feeling horrible when it came to feeding. I felt like i was doing him more harm than good. He would choke, gag, go threw a wreching episode, throw the food or just cry when he saw me with food. And on top of it all he seems to be allergic to every fruit i give him juices, baby food, everything causes him to have a rash, very depressing! :(

Today things are not going great he is still not all that thrilled with food in his mouth he rather have bland things like water and cereal mixed with formula, and no textures. But today he did eat about 5 spoons without gaging without crying and he let me know he was done by not opening his mouth anymore, he also didn't mind getting dirty normally if he touches the food with his hand he will take it out as if he just got burned today he got completely messy and he didn't seem to mind it at all! which is great :)



As for drinking we also found a way around him not knowing how to drink from a bottle or sippy cup or anything. for a while i was spoon feeding him the think water but i felt that was a bit confusing for him. So were told by his therapist to get a honey bear and put some tubing to creat a straw then once he closed his mouth around the straw to squeez a little to give him some liquide. eventualy he will hopefully start sucking on his own but for now i will be helping him and it has worked out great he wont drink much but we are trying! :)



last but not least his wheelchair has worked out great we have gone to the zoo and stores and doctor app. and he really loves his chair! we are thrilled!