Update

It's been a while since I've updated. Sorry about that. On my Facebook page I keep people apprised but even then... we are BUSY.

 A month ago my 12 yr old was electrocuted and we spent a week in the hospital with him. Luckily for us, it was on the same floor as when we were there the times with Xavier and so they treated him like a prince. Since then we have been trying to get back to "normal". Shaw is finally swimming again and will go to State this year as he has the last several summers. He lost 20 pounds due to the proteins breaking down. He is still nervous when he goes into the water and needs reassurance from me every time he goes to jump in. Because of the loss of muscle, he is slower and tires easily, which really makes him angry. He still kicks butt though and I keep reminding him how thankful he should be that he is here on earth to be angry. 10 more seconds in the water and we would have had a funeral. Not something a mom wants to think about. Ever. So we are just thankful to have him with us and for me to be able to touch him and love on him.

 Our Xavier.

What to say about him? We have had several appts with different doctors. We are working him into a stupor with PT and OT. His life consists of sitting and standing, stretching and moving.

 

He is saying "Momma" constantly and loves to sing along with music.

 

He claps his hands.

 

He stands for 15 minutes at a time (while holding onto something and not particularly happily)

 

He sits for long stretches of time and is no longer allowed to lay on his back. He spent too much time

doing that and so we are making up for lost time in every way imaginable.

 

When he is on the bed with us, snuggling, he rolls over and loves to be on his belly. 

 

He knows exactly what I am saying and will nod his head for yes or make a cry for no.

We are still battling the MRSA. We have an appt with the infectious disease doctor, since we have tried 4 different meds through the dermatologist and International clinic with no results. Thank you, Shepard's Field, for getting him cultured and taken care of in China. (que sarcasm) Your neglect has not only made it harder for us to battle it (because it has colonized in him), but it has now been passed onto his big sister, who spends her time loving on him and holding him, and so now she is battling the same strain (which is a super strain) since it jumped from his head to her bug bite.

 We have seen a geneticist to see if there is something wrong with him metabolically. Nope. Just severe neglect.

 On Wednesday he goes in for dental surgery. So far the dentist knows he will need 4 teeth pulled (because they are disintegrating when touched) and 4 capped. The rest will be assessed when he is under. We could use some prayers since he will have to be under. 

 Our last visit was to the Orthopedic doctor. We were there for his knee issues but found out that one of his hips is almost out of the socket. Again, NEGLECT! When you lay in a specific position for such a long period of time... Yes, the anger builds. So now we are looking at hip surgery for him. Just when he was getting to the point that he can crawl and stand on his own, we are now having to start from scratch once he gets out of his body cast. The doctor is thinking in the next month since he doesn't want it to come out completely.
Next week we have an appt with the Optomologist to see how his eyes are doing. He is giving eye contact to everyone now but there are some issues with what exactly he can see.

We are so thankful for all the prayers. They are definitely working. Xavier is growing and flourishing everyday. He is so loved and just so amazing. I can't imagine what life would be like without him. Our lives are so full!