Lilypie - Personal pictureLilypie Premature Baby tickers Lilypie Angel and Memorial tickers

Wednesday, January 28, 2015

MUCH needed Update!!!

Hello out there! If theres anyone STILL following GREAT! I know I haven't been on that much to update and IM SORRY! Life has been crazy good! About a month ago, I received an email from a 18 year old girl from Minnesota. Her dad and his now fiancée were in the hospital on bedrest awaiting the arrival of their micro preemie. They came across the name Brielle and while Sadie was researching the name came across my blog. Brielle was born at 24 weeks mid December and is doing amazingly well! Sadie is grateful to have some hope thru my blog which has inspired me to keep going :) Brielle is doing very well! We have managed to stay fairly healthy this winter. She has a chronic cough that stays with her all winter long. It is due to allergies mostly. Every few months they go in an zap it with an oral steroid and she gets better for a while but needs it again. She is just about there needing it again, she asked me 2 days in a row to take her to the Dr. Poor girl. I hate that she knows she is sick and also knows what makes her feel better. She will also ask for her inhalers. Im proud of her for knowing her body and knowing what she needs to feel better! Brielle is in 3K again. Ms. Chrissy is AMAZING to say the least. Brielle has been having some major behavioral issues going on, mainly in clinical therapy. She will cry, kick, scream, and talk VERY sassy to her therapists. We go thru ALOT of insurance appeals and fights as well as spend a lot of money on the therapy she NEEDS and for her to seriously waste the whole 45 min sessions not cooperating what so ever is daunting. I have ran questions by other CP mamas on the support groups I am in and got some great feedback! First was that Brielle has no control over her little body. She was essential born before a lot of things developed and had to learn that on her own. Like her nervous system etc. She has no control over her muscles. So in short, she is trying to control her environment. When I heard that I was like YES!! SO SO SO SO TRUE!!! She not only tries to control what is going on in therapy, but she tries to control our house as well. More so with her little sister than mom and dad. But she is definitely a little "mother hen" even in school! We also got some advice to take her to see a pediatric neuropsychologist. We have that appointment Feb 24th. Brielle has PVL on the right side of her brain. From what these other moms have been saying, PVL can cause behavioral problems, atleast it did in their children. So I am really curious to see what she has to say! Its interesting because she does not act this way at school and when I told her teachers she was a stinker at therapy they both thought I was crazy lol. They could not believe our sweet, quiet, little Brielle was a stinker. So we emailed her videos :) They have been talking with her at school and trying to help us get her back to having fun at therapy. Therapy is FUN! She does art projects, swings, trapeze bars, stomping in a big bin of beans, blowing bubbles, baseball, soccer, ball pit and the list goes on and on and on! There is no pain involved that would make her dislike therapy what so ever. Her therapists are great and at just as much of a loss as we are. We have started a rewards chart for therapy to see if that helps. She has to get 5 happy faces (which she was mad about because she says she is grumpy not happy) in order to hold Maverick (Her horse) lead leash after she rides him. This is the highlight to her day so we are hoping tomorrow she will do better than last week. I have also started a home "chore" chart and they have to complete x amount a day in order to pick from my treasure chest I have. Trying to hold her more accountable for her actions. O and we have a stop and go light in our living room. They start the day on green and if naughty move to yellow/red. That has been a big one. They both do not like to be in the yellow and home life has been a lot smoother! Brielle started with special needs soccer last Saturday. Once again, she struggled with being told what she needed to do. She absolutely LOVES to go watch her auntie Kaila play Basketball and has a special needs basketball day camp Feb 7th, so Kaila is coming to soccer on Saturday in hopes to give her some much needed pep talk :) She is also in Miracle League Fox Valley Baseball come June! She loves sports! I am hoping we can figure out these control/behavioral problems sooner than later. She is the sweetest little girl. So the outbursts she has is totally not like her. She does not do that at home or school. The only other thing I thought maybe might be, is that she gets botox in the same clinic therapy is at so she is anticipating that because she will randomly ask me "Mom no doctor? No pokes today? Not even talking to a doctor today?" So I know its on her mind. Poor kid shouldn't have to fear doctors, but shes had so many she just doesn't know what they hold for her. She cries when her sister has to go too in fear of her getting pokes. Breaks my heart. But again she is so caring, that's part of her character. Time to get little miss of the Bus and hear all about her day :) I will post some updated pics SOON!