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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.

Monday, February 9, 2015

Struggles to Triumphs

Brielle has had some struggles lately. For the last 3ish months she has been fighting therapy. Kicking, screaming, hitting, sassy mouth! Josh and myself have been at a total loss on what to do with her. We again reached out to her teachers who have helped greatly! We also started some things at home, A stop and go light with clothes pins and their names, Try to stay on green all day. They are not happy when they get moved to yellow and work very hard to stay "Green" all day! We have also started "Chore" Charts for them both. Its nothing major (pick up toys, do "homework", help set table, do good in therapy, get dressed etc. I went and got a "treasure chest" and if they complete x amount of chores for the day they get a special prize. Brielle has also been pretty rude to other people, not just her therapists but they are the brunt of her anger. She says things like "Go away" "Don't talk to me" "Stop looking at me" "Your not my mom don't talk to me" "Don't touch me" "Im grumpy and I am sassy" The list just goes on and on! She is definitely not raised that way nor do we talk like that so I am not sure where this is coming from. I struggled for many months as to if this is indeed typical 4 year old behavior or if its something "deeper." I turned to my CP support group and had several moms tell me that PVL, which Brielle has on the right side of her brain, can contribute to behavioral problems. They also had said that after seeking medical help, it was concluded that their child needs to "control" their environment because they have little control over their bodies. This one was a definite AH HA for me! Brielle is CONSTANTLY controlling everything she encounters! From her little sister, to friends at school, to activities we do, to even mom and dad. She is most definitely trying to control therapy and if its not her idea she aint doing it! Another AH HA for me was at my last and final straw after an emotional phone call with her teacher a week ago, I sat her down and said what is it? What don't you like? Why do you fight therapy SO bad? Therapy is NOT going away for her. Therapy will, unfortunately, be this childs life forever. She said to me "Mom I don't like Lisa." I said "How come? Lisa loves you so much and wants to help make your legs strong. She wants to do such fun stuff with you!" She said "Lisa Pokes me. Lisa hurts me." AH HA! Back story. In December we had a new PT who we had had only 5 weeks. Brielle was doing all of the above, fighting, and wouldn't do much work for him. I was SO excited about this PT because he is older "WISER!" and I felt his knowledge about her was spot on and he had some great ideas for her! Brielle has PT, Botox, OT and horse, all in one day. Josh ended up coming with me to this one because it was so much in one day and we could tag team her. Usually we just go one of us a day. The PT was trying to get Brielle to work and she kept fighting and running away. Josh and myself would try to redirect her back to therapy. The PT did not like this and kept making the comment that we need to let them build a relationship. That isn't going to work. He already set the tone day 1 when he let her get away with the behavior. If she knows you wont make her work, that's what shes going to do (back to the control). He suggested that we waster a whole PT session (Mind you they deny PT more than OT so we fight a lot to get PT approved at all times!!) and sit around a table to build a "relationship". Ya I wasn't into that at all. Then he said to me that I need to stop looking at how she "looks" and accept the fact that she has a disability. I was in complete shock. This all came from me expressing my concern with her tip toe walking. When she is tip toe walking is causing a whole another array of problems for her. Toes hurt in orthotics, she twists her body causing ankle and knee pain, and also hamstring tighting right up that cause muscle spasms in her legs. I was so shocked because I felt, wait a minute. This is YOUR job to HELP her get back down to a flat foot! I HAVE SEEN HER FLAT FOOTED! It CAN be done! I also tried to tell him that she responds very well when her Birth to 3 PT would stretch her and he told me that stretching was not a good idea because then when she isn't being stretched the muscle would tighten back up. WHAT? WHAT?? HUH? I was completely flabbergasted by the WHOLE session as a whole. The last thing he said to me was that my daughter has CP and I need to stop focusing on how she looks. No Im not focusing on how she "looks" Im focusing on giving her the BEST future she could possibly HAVE. I am a FIRM believer that therapy early on in life will get the best results. I walked away from him in complete shock and tears. Our OT ran into me in the halls and could tell what was going on immediately. I explained to her in short and she immediately fixed it, and we no longer see him. Lisa ended up coming into the room with us for botox, which she usually doesn't do but because I was upset and Brielle was upset she came in with stickers and tried to help up soothe the situation. sooooo needless to say Brielle thinks that Lisa will "poke" her and is fighting any and all therapy with her. I explained to her that she will NEVER EVER poke her and she does not need to worry. I also explained this to lisa and she did the same AH HA! It hurts my heart to no end that this child has to even go thru any of this! She shouldn't have to hear the word "Doctor" and have anxiety. Even if she isn't going to the doctor, mom, dad or sister, she is really concerned and doesn't want us to go. Its truly sad. So This past Thursday, after talking to her teacher, I went to therapy with my head high and ready for behavioral changes! My aunt came with me for moral support incase I needed to take that little fighter out of there. We had decided that if she was a stinker for Ms. lisa she would not be able to ride her beloved horse, Maverick. She did GREAT. The last 3 minutes were rough but Lisa said she did improve HUGELY so instead of taking it all away, we took away her ability to "hold" Maverick afterwards. she looks forward to this, but did not get all 5 of her smiley faces needed and.....SHE DIDNT EVEN FIGHT IT! Lisa also took me aside before horse, during her little fit, and said OT and PT just don't feel comfortable billing us for all these sessions when she does NOTHING for an hour and 15 minutes. I 110% agreed and it has been discussed between Josh and I. She asked if we wanted to take a break or what we would like to do. After Horse Brielle asked if we were doing PT. I just tough loved her and said Well Ms Diane doesn't want to play if your going to talk sassy and fight. But if youd like to have and play and be nice we can go. She got alittle upset and said she would be good. I told her one and done. Do good or we don't come back. SHE DID AMAZING!!!!!!! It was SO nice to be able to sit back and watch her giggle and smile and have fun while getting therapy! I really hope this behavior continues!!! I have an appointment with a neuropsychologist in March to see her thoughts as well. Slow and steady wins the race! Another hurdle her teacher wanted addressed was leaving her beloved blanket at home during school. She always leaves it in her backpack and in her locker during school so Josh and I didn't really see the big deal but after thinking more about it, shes almost 5 and doesn't need to drag that around. Her teacher send home alittle "card" with a pic of Brielle and beloved blankie and a cute little saying. Brielle got this card from us if she left without the blanket and then at school she got to turn it in for a chance to take a friend on a ride on the bike! She was so ready to do it this weekend, we had started working on it, she can have it in the car but needs to stay in the car. She got up and was so excited to be a big girl and do this! I was jumping up and down and singing made up songs about it and she was so excited. 2 minutes before the bus came water works turned on and a huge change of heart. I debated but thought nope, control. Stick to your guns and put her on the bus regardless. I had to carry her out kicking and screaming but from what I heard, it did not last long, and she was ALL smiles when she got home for being a big girl! Mom works next school day, so its all on dads plate to keep it rolling :) Brielle played in a Basketball camp in Freedom this past Saturday. She LOVED IT!!! Her idol (AKA Auntie Kaila) Came to cheer her on from the bleachers. Brielle cheers auntie Kaila on 1-2x a week so you could see how "cool" she thought she was being the one on the court! She has another one Feb 14th and 28th. She is definitely our little sports girl!!

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!