Limited Options

Soo Alot has been going on. Audrianna's doing better since her Baclofen trial. Shes had a few different sicknesses but she's been ok. Shes up to 32lbs 7oz and 40inches tall. Stephens Grat Uncle whom we used to live with passed away last week 3 days before his 91st birthday we went to the funeral on Saturday and my mom watched audrianna. She had a double ear infection and was getting over bronchitis. We didnt want to haveher out in the rain and cold for the burial and felt it was better for her to stay with my mom. Yesterday was our follow-up in Boston from her Baclofen Trial. As we had already known Audrianna was no longer a candidate for a baclofen pump. Her dr feels she may have had a significant CSF ( cerebral Spinal Fluid Leak). They are now thinking it wasnt just related to the fact that she was trying to sit up the hour she was supposed to be laying flat in recovery. But the CSF leak may have also been related to the fact that she has a cyst in her brain that she has had her whole life. She had alot of pressure on the brain which is what caused the Spinal Headache. Do yeah not a risk we want to take again nor does her dr. Her right leg it is extremely tight and she stands on the very tips of her te on that foot and her left foot is flat footed and pretty straight while the right turns in. So shes putting all her weight on her left side when sitting, standing, and using her walker cause she cant weightbear on her right foot. She is extremly tight in the right leg and foot. she left her dr very stressed cause he doesn't really know what top do with her but we have to do something before her leg and foot gets real messed up. She can't have Botox, Can't do a baclofen pump shes on baclofen tablets but there not really working. So he said we pretty much have two options left thats Heelcord lengthening surgery and surgery on her hamstrings. And Selective Dorzal Rhizotomy (sp). He said she needs to have the heel cord lengthening done asap because her tone is that bad. So we meet with an orthopedic surgeon on December 18th in Boston. Audrianna will under go so tests, get some labs, get xrays and then have the consultation with the surgeon and schedule her surgery which I'm gonna guess will probably be done sometime after christmas. As for the Selective Dorzal Rhizotomy. Audrianna has to get her Mitochondrial test done and out of the way first. We already have the referral that dr is also in Boston. I just have to send in her medical records from her eye dr, neurologist, GI dr, pulmonologist, genetesist. I need results from her CT scans, MRI's, her Growth Chart, Hearing tests results, and any blood and urine tests results. Her pediatrician sent me to the medical records department so I could sign a paper and get her medical records I told them I would pick them up in a few days when they have all of it ready. i didnt have the paper with me that said what I needed so I asked for her whole file. Theres like 102 plus pages. I will most likely drop the information thats needed right at the drs office in Boston when we go. There are alot more risks with the Dorzal Rhizotomy then that of most patients who undergo this procedure. Because well Audrianna is very different. we do know that whats done is done if they dont like the results of the surgery it can't be fixed. And results from the SDR surgery might be very different then other patients. The dr said paralaysis is very uncommon,so is death ect but he doesn't want to tell us it won't happen because well its audrianna we are talking about which is why he wants her to get the mitochondrial testing done. maybe that dr with have answers for why audriannas body is reacting to things the way it does. She also gets sick alot. like now she has a nasty cold. even tho she was put on antibiotics for the bronchitis and double ear infection she got worse instead of better. Her ear infections gone tho. So yes lots to think about and wayy to much stress. Audrianna will be in full leg casts for a few weeks after the heelcord lengthening surgery. We are also getting a new walker shes gonna get a gator gait trainer with the waist support. http://www.adaptivemall.com/gagatrla.html and she will also be getting a stander. The hospital we go to in Boston has a adaptive equipment program. So a refferal and prescription was sent to them so Audrianna will be measured and so on for her stander and walker. Once masshealth Ok's it. Might take a few months.