website

For those of you who wish to join, I have created a board to compile all our information on therapies and cerebral palsy...and UGH I just spilled coffee on my keyboard! lol anyway you can fine it here CP Support feel free to sign up and add to it if you wish, I have added the therapies and things I have found so far but it is far from complete. Right now you do not have to join to see the board but you do to post, once I give the info though to my CP support group and others start joining I will put it to a vote to lock it down (or some of it anyway like meet and greet). Hope you all enjoy it, if you have any questions, suggestion, or anything feel free to e-mail me (needs_sum_sleep@hotmail.com), comment on my blog, or on the site.

-Liz


OOPS, I'm a moron LOL accidentally deleted the post from the 20th so I'll tack it onto here..


We have been through so much here the last little while my head has been spinning. Nicholas needs to be circumcised (or at least partially) but since they have him stable now and he's able to pee without that many issues they are going to try to hold off a bit....because he needs to have his eyes operated on ASAP! We had our appointment last Friday with the eye clinic, it had been two weeks since the last due to her wanting to review the CT and crap, in two weeks his eyes have gotten really bad. His script has changed so much that he needs treatment asap which includes straightening his eyes and glasses for the vision problems. We also got the full report from his CT scan (copy of it) and after reading that I just wanted to puke. The damage is unbelievable, the whole time I was reading it I was thinking "this is the wrong report, they sent someone else's over by mistake" not only does he have severe white matter destruction and in one part minimal white matter he has a 1cm pineal cyst in his brain. We were told at 1.5cm it can cause obstructive hydrocephalus =( usually these are a common finding but are almost always under 0.5cm and asymptomatic, his is (like I said) 1cm and he is symptomatic. Thought the doctor at the emerg told us the CT showed "normal CP damage" and nothing to explain his head aches we've been told now that no the cyst is most likely the cause of his head aches because of how large it is. Usually these cysts stay stable and don't grow but if they do they grow slowly, his is growing pretty fast putting him at risk of it growing enough to block the flow of spinal fluid causing hydrocephalus. We are asking for an MRI so they can get a clearer picture of it because of a "nice" family member deciding to be "helpful" and tell us that this is what her daughter was dxed with on her CT scan but when they did an MRI 6months later to check to make sure it hadn't grown they switched the dx from pineal cyst to pineocytoma. She also had to throw in that her nuerosurgeon told them that it wasn't uncommon for them to confuse the two UGH all I could say was THANK YOU! Like I really needed to have something else to be worried about but we figure getting an MRI will at least confirm the dx and put our minds at ease and will let us know if it has grown or not. Nicholas goes back to the eye clinic at the end of the month to have his eyes looked at again, this time without drops, because she wants to get a clearer picture of the alignment of them.

On the upside we went on the Easter Seals Cruise on Sunday with Nicholas and Joey (Matthew stayed with the IL's) and we had a blast. We thought for sure Nicholas would lose it because of his phobia of water but he LOVED IT! He kept wanting to look over the side of the boat to watch the waves lol Joey was the one who ended up losing it, as soon as they opened the sails and the boat tipped sideways he freaked. He wanted to go on the boat so badly too, he thought it was great because it was his birthday and he thought it was part of his present lol We ended up on a boat with just us, the couple that took us out were wonderful, Nicholas and Joey feel in love with them and at the end when Mike handed him off to the lady while he got off Nicholas gave her a big hug and lots of snuggles and said thank you to her. It was so cute and she was so taken by him that she kept joking she wanted to take him home with her, they were very surprised at how well behaved our boys were (especially Nicholas) Joey helped put the sails out and got to steer the boat for a bit and Nicholas sat back and enjoyed the cruise without making a peep. He loved the wind in his face and was nothing but smiles the whole time we were out.

lol photobucket is down for maintenance right now so I will have to post the picture later on today.

-Liz