Delays

Delays

Some people have asked me exactly what Xavier's delays are so I thought I would make a list. Please keep in mind that he is 3.5 years old and we are still in province so the extent of his delays are still unknown at this time.

He can't walk, crawl or sit on his own. He can hold his head for short periods of time but the position of choice is flat on his back, staring at the ceiling or the sun. He does love to see lights and colors and activity, so we take long walks and he gets fussy in the car.

He has no language skills. The only way he can communicate  is through crying and "maa maa maa" when he is upset.  There is no sign language or charades. He is stuck inside his body right now with no means of getting out. He has coo'ed several times when he has seen something that excites him.

He can't eat on his own whatsoever. He doesn't want food and when he sees a bottle he begins to panic. Right now he is being force fed and a tube will go into his nose tomorrow. When he is force fed, he is only capable of holding down 2-3 oz at a time. Any more than that and he throws up. This is beyond frustrating for everyone concerned, considering how hard it is just getting that small amount into him.  We are currently switching between the formula mix I have made up with lots of added nutrients and a water solution that has electro lights in it. Again, I believe the feeding tube will make a huge difference because we can get back To the good things in life and be feeding him the max dosage of 3 oz without a struggle.

His eyes move back and forth rapidly and he rarely, if ever, is able to focus on anything. There are moments of clarity when I see him in there. But again, this is very rare.  And that is the child I talk to when I coo at him and tell him he's a sweet boy. I know I'll see that child soon. 

He does have a sense of humor. When I tickle his lips or his tummy he will give a half smile and then push my hand away but not too firmly. It's almost as if he is saying, " Do it again"!

He gets a massage twice a day with Eczema  lotion. He loves having his head rub and so when I get to that point he'll move his head back and forth if I'm not doing it correctly. He also loves to have his ears rubbed. He has sores in them from the Eczema and will go to town scratching them if I don't keep them nice and moisturized.

How frustrating to be locked in your own world and not be able to express yourself. How horrible to have your body consumed with itchiness and hunger pains and not be able to voice it. He spends a lot of time scratching himself and so we keep gloves on his hands at all times and his nails trimmed down. Sadly this cuts down on his ability to explore and touch new things. He is putting his hands in his mouth though and gnawing on the socks. I'm hoping that helps clean his teeth some. His teeth are awful. They are a grey color, with black steaks. He is missing pieces of teeth throughout his mouth and I can only guess that would hurt him and I wonder how they got to be so bad. 

He swims in a size 2T sleeper and there is no chance of getting him into anything else because his waist is 2/3 of what a 2T child is. His legs are constantly cold and I keep two pairs of socks on his feet to keep them warm. his legs and arms are bone and skin. This is all. You can see all of his ribs and his stomach goes in if you rock him to the side. Despite all of this, he is incredibly strong in his arms and legs. I have started some stretching exercises with him and he can and does fight me all of the way. This is actually a good thing.  He can stretch his legs up and down but rotating his legs to the side causes intense pain to him and so we focus on the up and down/in and out motion for now with just a small stretch to the sides. His hands are clenched at all times, unless I am massaging them or he is going to scratch himself and then all but his two middle fingers (on both sides) spread themselves out.