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Tuesday, September 29, 2015

much needed update

Please excuse my errors as I'm typing on my phone :) Much needed update! And when I am feeling completly alone and overwhelmes this is where I turn too ;) So hang on and ride with me... I just went back and reread my update from Feb! Not much has changed from then unfortunately. Which is what has brought me here. Since Feb, Brielle had another serial casting of both feet done in May. We thought by keeping the gabapentin on board she would be OK and not regress, but she did. She went back to hardly walking yet again. Noone could figure her out. They put her on some tramodol and she kicked it. We had to get her a walker from her former therapist and I really think that helped her bear weight on her feet sooner than the last time. We seen the neuropsychologist who gave us some tools to help us. The first 2 or so appointments I felt really great about the whole process and thought we had something that would really work! Well that didn't last long. She started to give us the same tools our ot had given us (jumping, swinging, blowing, gum chewing etc) and we already exhausted all of those resources. Behavior is back to its worst again. We stopped therapy in hopes of having enough therapy with school but Brielle is now back to tip toe walking. So Thursday we restart therapy and am hopeful after her botox last week that we can get her back down. But with that comes behavior. At the evaluation she didn't want to do anything! Even look at a ball and follow it. I was so frustrated and embarrassed when I walked out of there. The therapist said she couldn't even do an evaluation because Brielle wouldn't cooperate with even half of the test. I've also started to really notice Brielle just can't focus or sit still at all. When we met with the psych in March, she questioned us about medication. That was a huge thing with me as I do not want to medicate her if I can avoid it. So we ordered her oils and an all natural adhd necklace. We did see some results but short lived. We put her on Paxil for anxiety. As I stated in the February blog, Brielle is so anxious. Brielle has to know her entire day and even week. "Mom what do I have today" she asks us about 4x a day. I'll say we'll school. Then what she says. She's always waiting for that D word. If she even hears Josh and I talk about one of her Dr's by name, she knows. She knows what Dr's names are and who "pokes" her. If she would even hear the word doctor she would go into full on anxiety. Even if it had nothing to do with her. She for real feels that she is going to be hurt all the time by anyone that resembles a doctor and was soon feeling it with her therapists as well. So she was acting out. Horribly! Again! Last night while out to eat with my MIL, Brielle could not sit still. She would sit down for one bite. Then up on her knees, then standing up to eat, then she would start to sing a short verse, then we'd ask her to sit again and it would start all over. Then she would need peaches and more drink etc. Anything and every excuse to not sit in one spot. I tried to distract her by asking her how school was and how her field trip to the apple orchard was and she couldn't even look me in the eyes. She was looking everywhere and couldn't concentrate on one thing. That was really my moment of she needs something. There's been 3 times where she's in trouble or being mean to her little sister and I will say you know better why would you do that? And she says to me quote on quote "I don't know mom something is wrong with me!" Talk about heart crushing. To me that's her cry for help. Thus morning was rough. I made the appointment to speak with a doctor. The girls were not listening we were trying to get out the door for school and I couldn't find Brielles shoes and chips for her orthotics and she is crying because her legs hurt and why can't she just wear sandals. She asks me at night why she has to wear two knee high hot Plavix boots at night and why she can't sleep bare foot like everyone else. It crushes me. I just broke down. She instantly started crying as this is not normal and she didn't know was going on. I just grabbed her and we melted. Just cried together. I feel so guilty everyday. 5 years and this guilt still haunts me. I couldn't hold my babies in. Brielle was born 16 weeks too soon. Her brothers not here. All because my body got an infection . Woman are supposed to be able to conceive and birth babies. I wasn't able to do any of that. We needed fertility help. I needed a csection. She had to develop in an incubator and now she is still struggling everyday. And I feel like I can't help her. I am so frustrated and exhausted and I don't know what to do for her anymore. I've tried. I really truly have. Please pray for us that the doctor can help us/her on Friday. I see little glimpses of the sweet Brielle I know she is. Brielle is so loving and caring and always putting people before her. She is so friendly. Everyday that bus door opens I hear 5 kids all yelling "Hi>ii BRIELLE!" the bus driver says she is so well liked. Her teacher says she is the welcome wagon at school. There's just some things that need to be tweaked. This is the hardest thing ever when your child says something is wrong with them. She's not old enough to fully express why or what but she knows.