When your baby is 1 week old, and she has her 1st MRI and the results aren’t what you thought you would ever hear, let alone something you never want to hear……Veronika has an injury to her brain from the bleed she had before she was born, and we believe that it will affect her movement down the left side of her body, and she will most likely never walk….

I guess at that point in you make a decision, one of two possible options i guess. You either think ‘oh well, if that’s how its gonna be, why bother,’ OR ‘Yes she will walk, and we will come back in when she does and say I TOLD YOU SO’.

Tuesday, June 7, 2011

MRI Results....

Well the results were extremely positive. On Veronika's 1st and 2nd MRI"s she had some nodules in  the ventricles. I was told they weren't really sure what they were, maybe it was left over residue from the stroke she suffered prior to her birth.....anyway They have disappeared....how amazing. Veronika's Paed obviously said that was really good. Now the main thing that showed up was the brain injury that she had as a result of the stroke, but we already knew about that, and we have been working on the resulting hemiplegia for a very long time.....and we will continue to!

I don't know if I have ever shared the next thought with you....but I believe Veronika is extremely lucky that she has Down Syndrome. Yes you did read that right.....I believe she is extremely lucky to have Down Syndrome. Bet you have never heard anyone say that before, and I guess you are wondering why.

Yes I will tell you why. Veronika suffers from severe Hypotonia(low muscle tone), which is extremely common in people with Down Syndrome. I have been told by a visiting Baby Neurologist(from Melbourne Children's Hospital) that Veronika is the floppiest baby she has seen in a long time. Normally i guess that wouldn't be something to get excited about. But with Veronika its different. Her brain injury is pretty severe, and really she should be super tight in her muscles down the left side of her body(her hemi plegia or Cerebral Palsy), and her arm and leg should be pretty much non use able.....BUT because Veronika has Down Syndrome and the resulting Hypotonia, her muscles aren't as tight as they should be....and she does have some limited function in her left arm and leg. This is another reason that I Believe she will walk.....because she has been blessed to have multiple severe dissabilities, but in a weird way they kind of help each other out. Don't get me wrong, her plethera of Doctors still don't know how to treat her, as the combination is rare, especially in someone as young as Veronika is....But I do believe she is Blessed to have Down Syndrome.....

I also talked with the Paed about Veronika not wanting to eat, and by not wanting to eat, I really mean not wanting to eat. I really am surprised that she has put weight on, I guess the only reason is because she is on a prescription formula. We discussed how that she hasn't eaten any more by eliminating completely wheat, gluten, dairy, eggs, soy and rice milk. So she thought maybe I should give her anything and everything to eat and see if she eats anymore....so I have given her a couple of thing she hadn't had for quite some time, and guess what, her skin flared up and she is now consistently waking thru the night and screaming the house down....I don't particularly want to put hydrocortisone cream on her skin every time it flares, and i most certainly don't want to be up with her every night while she is screaming the house down because she has a belly ache....will be an interesting appointment with the Dietitian in 2 weeks....

Oh and for those of you that I haven't seen recently, my Miss Veronika is crawling. Properly crawling, she started the day before her 3rd Birthday. Its sooooo very exciting, as she has to use her left side of her body. She is getting faster every day, and I haven't seen her roll in 3 days. She is of course pretty chuffed with herself too.....that reminds me I need to take some photos to share....

1 comment:

  1. Hi Kylee
    That's wonderful news about Veronika crawling.
    Not so great about the diet : (
    Thanks for sharing this post.