Sunday, November 21, 2010


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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.

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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 :)


  1. Sounds like he may have a tetherd cord. Rubea's legs were like that before her surgery. Sounds like he needs some good therapy/stretching and a chance to explore his surroundings and not be in a stroller all the time!
    He is just adorable and has the most beautiful smile!!!

  2. Re the 'rattling' in his chest. It sounds as if he is not swallowing his saliva properly - due to positioning. It tends to pool in the throat, and then they breathe through it, giving the rattly sound. A cough will clear it, as it moves the saliva. Our daughter has this; we just have to remind her to cough, or position her a little more upright. Hope this info helps. God bless.

  3. The rattle - my Mog has this and in her case there are times when it really is purely positional - sitting her slightly differently helps. It's either saliva pooling which she isn't able to clear, or else sometimes it's just her spasticity causing things to tighten up.

    We do now have suction for her as she does now have much bigger problems too but that's not inevitably the case, and is to do with increased loss of function as she has gotten older and larger and has more seizures.

    The legs scissoring - this is generally due to spasticity and I forever forget whether it's the adductors or abductors which are overly tight causing it. Whichever, regular stretching can help, and if that in itself is not enough then botox and sometimes muscle release surgery or tendon lengthening surgery can be necessary. It can also be an indication of dislocated hips, but I'm assuming that's something you'll be getting him checked out for once you get home?

    As far as diaper changes and washing is concerned, I have found that bending the knees helps to give you a bit of an extra stretch at the groin - the tendons are tighter overall, so if you bend one bit you get a bit more "give" elsewhere. Helps you to get into the creases.

    He has the most gorgeous smile!

  4. Our son has cp and also does the rattling noise.He has a hard time with his secretions.Basically it sets in his throat and makes the rattle sounds.He drools so he wears bibs.I have seen him spit he does not know how to clear it.It gets so bad sometimes we have to suction.
    For sitting i seen you said something about a bumbo.We got a tumble form feeding chair and it works wonderful to set him in.I love it.It has a high back and you can belt him in.Our jax will fall to the side so we are happy for the retraints in it.

  5. we have a tumble form too. they are awesome for kids with cp!! good support and have little notch at the end to hold them in place and also have supportive straps. be careful with any stretching before wesley is evaluated (learned this from experience =( ) because josie had an underlying metabolic bone disorder and actually a hospital employee accidentally broke her leg before any one knew. (malnutrition lack of sunlight) can also cause rickets which make bones weak. we go to a cp clinic and they check our kids hips to make sure they are in place because hip dysplagia can occur bringing it out of socket. josie has had this happen. she also had to have swallowing eval for pooling of secretions/ aspiration risk. may want to look into that for wesley too. feel free to email on f.b for any questions about our experiences. hugs, rachel

  6. also, aiden had heel cord lengthening so his feet will go 90 degrees to legs and he had his adductor tendons lengthened. it was also very hard to diaper him. after surgery and casting for 4 weeks (bilateral casts with bar in the middle holding is legs out at an unbelievable angle in a V it was much much better. he has also had botox and casting.

  7. What a cutie-bug. Sorry I have no real CP experience (our son's is ultra, ultra mild) but sounds like you have several experienced moms here to give good ideas.

  8. You know what comes to my mind when I see the pictures? That he's dressed in pink and yellow, just like Emma was one of those first days you spent with her! I'm sure it means something :-)

  9. I have spastic diplegia cp and can probably answer most of your questions but would prefer to do so via email. Please email me @

  10. My teacher for 8th and 9th grade had spastic CP. She was hard to understand, her writing was difficult to read--BUT with some practice and time we all got to where we could both understand her speech AND her writing. She had trouble drooling some and she also shook a lot when she got excited or stressed--or basically if she felt ANY strong emotion. She could walk ackwardly--on her tiptoes mostly in a jagged sort of side ways swaying. All that to say that she worked HARD to get where she was in life (including driving a car--it was pretty scary to ride with her though!) so I hope that gives you some encouragement for Wesley! He's a sweetie from his smile!