Welcome to all of Aubreys new angels! Were blessed to have yall learn more about Aubrey and transverse myelitis. For those that dont know her story here it is: On Jan 3rd she woke up from a nap (at 1:30pm) completely paralyzed from mid chest down. She was screaming and crying (we later found out that this was from the myelin around the nerves swelling. . .which is very painful) and continued to do so until Sunday (Jan 5) morning. We at first thought she was just being cranky, which is really against her character but she had been woken up by her older siblings. As Saturday (Jan 4) continued we noticed she wasnt sitting up or rolling over. We thought her older sister had sat her down too hard and it was painful for her. That night we decided to see how she was the next morning. If she was still screaming then wed take her to the ER first thing. If not, wed wait to see if she was using her legs after church. If she was great, if not wed call our pediatrician for further advice. Well, she woke up extremely happy (the nerves were damaged and no longer feeling pain or any other stimulus). We went to church and kept her with us. I called the pediatrician and they said take her to Texas Childrens Hospital ASAP and if we couldnt have two people go call an ambulance. So we rushed the kids out the door (we were at lunch) and took them to their grammys house and took her to the ER at TCH. Within 5 minutes of checking her in to the ER she had been seen by the doctor and was in the CT scanner. That night she had a CT scan of her head, blood work, an X-ray, an MRI of head and spine, and a spinal tap. She was admitted on Jan 5 and was there until Jan 12. She received 7 days of high dose IV steroids and 3 days of IVIG. She also started physical therapy. After she was released she was doing ok. Then we started noticing that she choking on all her foods. We took her back to the ER at TCH and then were put in contact with Dr. Benjamin Greenburg in Dallas who is the top pediatric specialist for TM. So we packed up and headed to Dallas where we spent a week. There she began feeding therapy. Her swallowing was in fact effected. As of now she goes to physical therapy twice a week. We recently took a break from her aquatic therapy (that was twice a week). She also does feeding/speech therapy once a week. Her feeding issues have started to effect her speech development so were working on that to try and get her on track. So far the transverse myelitis has effected her sleep (pediatric insomnia and other sleep issues), temp regulation (she can not cool herself properly, so we stay indoors at all cost possible when its hot outside. . .over 85/90), chronic constipation, bladder (which we just found out they feel is resolved but we wont know for sure until she is fully potty trained), she wears SMOs (orthotics for her ankles), swallowing, speech, and over all development. She suffers from neuropathy (nerve pain) from the nerves regenerating. Her right side is significantly weaker than her left side. Her muscles are still weak for her age and her endurance is low for her age. She had overcome so many obstacles and continues to prove all the doctors wrong. On Jan 10, we had a room full of doctors (literally 10-15 doctors) sit us down and tell us they didnt know if shed ever walk again. They told us they gave her two years. Whatever she didnt recover in two years she would likely never get back. Transverse Myelitis effects around 1300 new people every year in the US. 20% of those are pediatrics. Most pediatrics are between the ages of 10-19. It is literally one in a million chance of her getting TM. Please please please help us get to Johns Hopkins. Her future is so uncertain. Because there arent a lot of babies that get TM theres no real answer on how things will go as she gets older. We are $925 away from our goal to be able to get her there and we have about a month to raise the funds. Thank you for taking time to read her story and for your help! We greatly appreciate it!! gofundme/cz29ko
Posted on: Sun, 17 Aug 2014 15:03:23 +0000
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