In a few short hours, my niece, Jennal Leann Intira Brooks, will begin procedures to undergo a partial Hemispherectomy. As can be seen from the definition,Hemispherectomy is a surgical treatment for epilepsy in which one of the two cerebral hemispheres, which together make up the majority of the brain, is removed.Jennal was stricken with TBI when, at only a very short two days old, she suffered from a stroke. Jennal was soon thereafter diagnosed with having Epilepsy, severe astigmatism, and impaired motor, intellectual, speech, and other bodily functions as a result from the stroke and TBI. You may wish to read about some of the previous difficulties my sister has had in getting appropriate care for Jennal.
On 29 May 2009 (two months ago), Jennal turned five years old. It's a miracle that she's still alive. Whenever she sees me, her eyes light up, and my insides turn outward and it takes all of the strength and energy I have stored up to not fall apart like a bawling baby in front of her. She is filled with such joy and love, which is a testament to how my sister and her boyfriend are raising her.
A few years ago, Jennal was diagnosed with Cerebral Palsy. A few months ago, they've discovered irregularities in her heart beat. All of this has been caused by Jennal's frequent seizures and, even though she has been heavily medicated with just about every seizure medication known to be given to children of her age, the seizures are getting worse.
As such, her doctors apparently have decided that a hemispherectomy is the best course of action at this point, as every time my niece has a seizure, her brain is deprived of much-needed oxygen and something else goes wrong. This is how she developed Cerebral Palsy.
The picture of Jennal, above, was taken last month, during her graduation from her early intervention school (which I've previously blogged about (and included an update to)), which, IMHO (and IANAL), was grossly negligent in the care of my niece, Jennal's (to wit: they left her in Epileptic Seizures for extended periods of time without checking on her or doing anything about the seizures); I wish my sister would follow my advice and sue the hell out of the school, as her medical bills continue to mount up and insurance is limited, if not already maxed out. As you can see, she wears a brace on her right arm, of which she has very limited use, and braces on both of her legs.
This second picture (to the left) shows a bit more clearly the braces on her legs; it was taken Halloween 2008.But I digress. In a few hours, Jennal will begin the testing required for the neurosurgeons to remove a portion of her brain (that has shown no activity since the stroke when she was two days old). They will then leave in place, in her brain, detection equipment to determine whether the removal of the lower lobe of her brain (I can't recall the specific details) has improved her Epilepsy and reduced or eliminated the seizure activity. If they are not satisfied with those results, then a full anatomic hemispherectomy will be performed a week or two later (which is how long it will take them to determine whether or not the partial procedure was successful or not).
The surgery will take place at the New York University Langone Medical Center, Pediatrics Department. Your healing thoughts, energies, and (for those of you who do so) prayers will be most appreciated. Any organisations you know of who can assist (especially financially) in Jennal's condition would also greatly be of interest to my sister and me.
[EDIT]At the end of each blog post in this series about Jennal is a link to the next post, which updates on her condition. So please click on the link below to take you to the first update that I've written about Jennal. At the end of that blog posting is a link to take you to the 2nd update, and so on and so forth. Please read through until the last update posted (the blog post that doesn't have a link to the next update) to get the full story about Jennal and how she, my family, and I are coping with this precarious situation. Thank you![/EDIT]
Please read Update #1 for more information as to Jennal's condition.
Links to all posts in Jennal's Hemispherectomy series:
OMG...she is adorable....Certainly my thoughts and prayers are with her and all the strength you need to cope with everything!!
ReplyDeleteLove Debby
Scottish Rites is a very helpful organization that paid in full for numerous operations for my step daughter who has cerebral palsy. If your sis can make the trek to Memphis Tenn. St Jude is an excellent Childrens Hospital that charges on a sliding scale. Sending positive energy, thoughts and prayers to your beautiful niece.
ReplyDeletePeace, Mary