Hi, I want to introduce myself, my name is Debbie, I am a single mom of 3 children ages 10, 13, and 14. I am disabled due to seizures and tourette syndrome so i am a stay at home mom, I love it honestly..
When my 2nd Child April was born she was small, only 5 lbs 1 oz, Never was healty in so many ways, Colds, flu, phenominia, you name it she had it. All the time. Some of her developemental skills were off, She never crawled, Never ran ever.. Never could ride a bike.. ect.. I cant name all of them because there were so many . I took her from doctor to doctor and they all said she was fine, we wont worry about it now.. This always upset me. Finally i found a good pediatrician that i could tell cared and he kept putting her through tests for her bones cause she was in so much pain.. nothing showed .. Due to insurance we had to keep doing the same basic tests over and over before we could do the major ones..
One day last September in 2013 we were at a graduation party and her legs just gave way and she could not walk at all , I took her to the ER and they again came up with nothing.. I was beyond myself because at that point she could take 1-2 steps but fell again so i bought her a wheel chair. Her Dr. was out of town until Monday and it was only saturday..
Monday morning 8 am I brought her into his office and he saw her in the wheelchair and was fuming mad.. Asked "why is she in that" I said if you want her to walk more than 2 steps she will fall, He took it into his own hands and said " Screw the insurance she is going to Albany Medical Center, ( Its about a hour and a half away from us ) He got an appt on wednesday of that week by forcing them..
When we got in the room with the specialist, she looked at her for less than 5 minutes said " I need to go and get a neurologist now ! " and ran out of the room... The air felt like it got knocked from me, I have neuro problems but i didnt see these, I was so confused, When she came back with him he did a series of tests and they asked to speak outside with me (at this point she was 12 yrs old and scared ) I remember them saying to me that something very serious is going on and can we discuss this in front of her ? April has a high IQ, she is my child that i tell things to because you cant hide things from her so we did.
So much information was thrown out at that point, terms i didnt understand "wormy tounge" her eyes were over active, her reflexes were on hyper drive ( She almost kicked the dr in the face it was so bad ) She was then admitted in the hospital imediatly.. This was like a fast action movie for me.. I had no clue what was going on yet and she kept asking them.. Friday they took her for a MRI, she came back to her room and I will never in my life forget 10 minutes later , they rolled in this machine with a screen on it and it showed a picture of her MRI, They told me her brain had extended down her spine and is cramed in all the bones .. I could have fallen over but put a smile on my face for her.. They told us both she had to have surgery ASAP.
My daughter just said to me "Im not having surgery and i said i doubt that will be the case , Im almost 100% positive" and that was when they came in.. She never cried, got mad yes.. On September 17th, the day before my oldest daughters birthday she went into surgery at 8:30 am and surgery lasted until 9 pm.. I didnt see my baby till 11 pm.. I think that was one of the worst days of my life at that point, until i saw her, Never did i prepare myself for the tubes and multiple IV's and breathing tube in her.. I actually did fall at this point on my butt.. I was alone, The father is not in the picture but i called him to let him know and he said " I wont be there " .. We were away from home for 2 months and almost 2 weeks between the hospital and rehab because she couldnt walk, hardly talk and more problems.. But in the end she fought her way back and made such a return it was incredible !!
Now the currrent.. May 15th, She had to go back in for another decompression surgery because her spine is severly swollen.. and there was a white spot on it.. this surgery took 6 1/2 hrs.. She was almost paralized though because her spinal cord was pushing up into her brain at such a rapid rate that her surgeon said it was a good thing i saw her signs were turning again.. She was so upset because she didnt want another surgery, Also after the last surgery her surgeon put her in for make a wish and they just gave us the date for the trip and now it will be held back.. I told her we still will go but when she is healthy..
This last surgery was different, I can almost say it was Harder on both of us.. They had to shave her head and she loved her hair but she was ok with that when i told her.. For the 2 days Post op I have never seen my daughter cry out in pain so much.. This killed me inside and i dont know how to get over it.. She is still in pain but doesnt say much..
I dont understand Why.. I know that sounds crazy but what caused this to happen ? Has anyone else needed more than one surgery ? And that close together ? How many surgeries should i be expecting ? Does this ever stop ?
If anyone has advise on how to deal with it i would appreciate it so much.. I am so confused right now and i have no one to talk to ..
Thanks for listening Debbie
