Avery's poor head seems to be bruised all the time. She is very unsteady on her feet and has brought blood on several occasions. I realize that she needs freedom, but it breaks my heart to see her in pain. My solution is to get a noggin protector. I came across this helmet this morning. It is called a ThudGuard. I think it is adorable! She is getting the "lovely lilac". I will be sure to post pictures as soon as it arrives!
Well we went to the neurologist for what we thought was a follow up to her EEG. Instead we got the news we weren't full prepared to hear! Avery does in fact have Rett Syndrome. The second genetic test revealed that she has "exon 3 and 4 deletion". For the layman, this means that "chapter" 3 and 4 have been deleted from her MECP2 "book".
Her EEG was abnormal. She is having what Dr. Suhrbier called markers for seizure activity. She isn't have seizures at this time but it is inevitable.
On a happier note, Cole is doing AWESOME! Dr. Suhrbier is amazed every time he sees him. :)
