SMILEY boy!

My mom was asking if Wesley has head control or not, since Mike and I were fully supporting him in most of the pictures.  YES, he holds his head up very well!  When he is nervous or upset he ‘extends’ through his trunk and neck.  Since he’s very much still getting used to us, he’s having this fairly often so we’ve been supporting him more now than we probably will need to once he’s more comfortable with us.  Here’s a few pic’s when he was just sitting on Mike’s lap playing with us—no snuggling.  He ‘curls in’ some but I think that’s mostly because he’s not USED TO sitting like this for any period of time.  He always has a stroller or other form of support since no one just sits and holds him most likely.  As he gets stronger from doing this he’ll be just fine.


I was also asked what Wesley is able to do right now.  He has good strength through his trunk, and is HIGH tone through there.  I’m still figuring out the terms and what means what, so if you’re more educated on the way to explain things or what terms mean what I’m saying, please fill me in :).  Since Wesley has Spastic CP, his body will tense up and have these “spasms”.  It appears to happen most frequently when he is nervous or upset, or if he’s startled. 

Wesley’s legs are held tightly together—to where his knees touch or his calves cross and knees go one on top of the other when he is tight.  They are usually at about a 45 degree bend when he does this, or thereabouts.  When he loosens up, he can sit fairly well with his legs relaxed next to each other and his knees separated a bit.  This should make changing diapers… interesting ;).

Wesley is not sitting independently and would fall over if put in a sitting position due to his spasticity.  He may benefit from the “Bumbo” type seat (with a bean bag behind it!) and would definitely benefit from a corner chair or a Riftan or something like that in the near future as well.  His hips and waist are very small and his legs are very thin with very little muscle or fat on them. 

His paperwork says he is microcephalic, but compared to the size of his body, he actually looks to have a large head :). 

We are told that Wesley can army crawl, and we’ve noticed that he has a good amount of use in his hands.  He tends to keep them close in and closed fisted, but he CAN extend his arms all the way (at least one we’ve seen him reach out to me with) and he can open and close his hands fairly “easily” (though you can tell he concentrates a lot to do it).  His hands don’t appear to have any contractures.  He’s just not been worked with to learn to use his hands to do anything… YET :).

He eats from a spoon and eats a lot of the same things the other kids do.  Mostly soups and such with pieces of veggies and little bits of meats.  We’re told he enjoys candies (but have been told NOT to feed him :) ).  He doesn’t feed himself—doesn’t use his hands ;).  He drinks from an open cup, which I’m happy about since it’s not another kid to have to get off a bottle LOL.

He’s had regular massages and we’re told he’s even had Botox injections (which help loosen the muscle spasticity and lasts for about 3 months at a time). 

Not sure if I said this already, but I am convinced he does NOT HAVE ARTHROGRYPOSIS, and that he DOES NOT HAVE SPINAL INJURIES.  Those are two things we were told earlier on (along with the blindness- which he is not blind but is VERY near sighted and may be “legally” blind) that was coming from a credible source, but the info has to have either been lost in translation or have been given mistakingly about a different child :).

When Wesley was born he was VERY tiny, and was born premature (almost as much as our James).  He had a brain hemorrhage due to a lack of oxygen during birth.  He stayed in the hospital for just over 2 months then instead of being brought by a caretaker to the orphanage, the doctor brought him there himself.  He asked the doctor at his baby house (there are 5 separate houses at this facility, but he has been in the same one since he arrived) to take good care of him because he wasn’t going to live more than 1-2 months.

Obviously, he did :).  The doctor said that it’s “their way” in her house that they give extra care and attention to the weakest and most needy children, and they began immediately to do everything they could for him.  He received treatments and medications and massages… and I don’t have my paperwork with me right now so whatever else they did escapes my current thoughts.  Basically… they got him healthy and did everything they could to keep him ‘physically healthy’. 

He is well attached to the baby house in general and his caretakers.  He is calmed by their talking in soothing Russian female tones.  He smiles when he sees them.  He’s happy when he comes to us.
Though he’s never been educated or taught (that we can tell yet), he has been taken care of and brought to a place where he is HEALTHY physically.  It’s in his reports that he hasn’t been sick at all in 2010, which considering it’s November right now, is very good.

For any CP moms (or just anyone that knows…) out there, he seems to get very ‘rattley’ in his chest at times, then can generally cough and clear it some.  We were told it has to do with his positioning, but my thought is that it still seems like that shouldn’t happen unless there’s something that’s “not quite right” with some of those systems.  So, if you have any insight on that, I’d love to hear a voice of experience there :).  The good thing is that he seems to be able to ‘clear’ it.  But it will often be that way for most of our visit and appears to only be clear for a few minutes.  We’re told he doesn’t reflux and when we asked if he was getting a cold, we were told that “it’s because of his position.”  He had these sounds when I visited in September, and two weeks ago, and now.  So it appears to be consistent.
I’m sure there’s more to tell about BOTH kids, but I’m off to another project :)