Tuesday, September 29, 2015
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
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
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!
Tuesday, June 24, 2014
Update on Little Miss. So, we got an appointment with an Orthopedic surgeon today, thanks to Auntie Em. I get Brielle on the bus today, and Josh and I both looked at her and said “Hmm She looks pretty good this morning!” She came home from school and got off the bus pretty much by herself, yet again another improvement. We came inside did some painting, ate lunch and watched the Sandlot til her 230 appointment. Get her out of the car for her Ortho appointment and she asks to walk. I let her as we had some time to spare and she says “Watch me run mom.” I grab her alittle to stabalize her expecting her to fall and the little turd takes off across the parking lot. Not a fast full out run, but a RUN to HER. I was amazed and thought REALLY? I made all this fuss to get this appt on short notice and you go from crawling last night to RUNNING today!??!?!?!? YAY but WTH! So we get to the room and I make her run to wall to wall. Run to chair to chair. Now do a circle. Now do a plank. Now touch your nose. “Really mom??!?!” Yes really Brielle. Im still confused. Help me out here! The doctor comes in and I am speechless. I feel like a horses butt and dont really know what to tell her. Except I dont know this child. I show her my video from last night and show her how she WAS. She did see the problem I was presenting but looking at the child in the room she didnt know her either. So we both agreed that She just really likes doctor appointments and making her mother bald by the time she is 5 and I will call if she regresses. Get home have dinner, she goes running into the living room after giving her dad a goodbye kiss for work and she trips and falls. She starts screaming and crying like she broke something. This went on for a good 15 minutes. Dad got her to walk on it before he cleared the scene but she wouldnt stop fussing. After an hour of telling me it hurt and still whining, not full cry, I got a call from her teacher. Her teacher, who I adore, is super sweet and caring. She had some concerns, and I have the same ones. Shes always looking for ways to help and better the child its just amazing. I told her how I am completely lost and not really sure what to do, say, think or go from here. She was just bouncing off the walls at the specialist doc 3 hours ago, and now shes laying on the floor moaning and icing her foot. WTH! I give and call her old Birth to 3 therapist Lisa, who lives just around the corner from us. She is super super sweet and knows Brielle like the back of her hand. Seriously! She is the one who suggested casting as well. She of course came over right away to look at Brielle. She said that she has no get up in her feet. Meaning when we can just put our foot flat, push up and get up, Brielle has to use her hand to push her leg down into the floor to get up. A lot more work than you and I. Her legs are mush. She has hardly any leg muscles left. So she is tightening her ankles to compensate, she IS the master compensater you knnow?, thus causing her ankles to be tight and turn inwards to compensate. MAKES TOTAL SENSE NOW! No fracture. Just no muscles. Weak little fragile body trying to work way way hard to do things that she has the right to do....be a kid. She also noticed that Brielle had a major growing spurt so her orthodics were small. The toe piece was not long enough so where her toes should have been hiting was back by the foot part of her toes causing her toes to curl up, thus causing pain on the top of her foot due to her foot being pushed up into the orthodic causing sores and probably bruising on the foot/bone causing the foot pain! (hows that for a run on sentence!) She fixed her orthodics so I hope we can alleviate some of that pain until her new ones come on Monday. SOOOOO She said LOTS of strength training. She says “get her in water therapy!” TADA! She starts tomorrow!!! Our goal is to get her into as much water as possible. Tayvah is going to learn to like swimming sooner than later :) Its a good thing Brielle likes water this year, Last year she wouldnt go near it. She would go in that water kicking or screaming, which kicking is a great strength building so it wouldnt be so bad :) Tough love. Just kidding, well sort of. So thats what I got. Atleast it is alittle bit more of some answers. I feel more at ease knowing that this is a weakness issue and not an injury. I do feel awful that it took us this long to figure it out, but I cant take that back now. All we can do is move forward and body build this child!
Monday, June 23, 2014
Brielle had serial casting of her legs one and a half weeks after botox for a total of 4 weeks. May 1-May 28. She was a trooper!! She only asked a few times to have them taken off and it really was not a big deal. We put plastic bags rubber banded on her feet and proped her feet up on dads shoulder or up on a stool in the tub. Then we filled the tub with a little bit of water to let her “soak” a bit and wash her up. That was her baths for 4 weeks. She did so well considering this girl likes her baths! So here we are 5 days shy of a month out of casts. Brielle has REALLY been struggling to walk. Very stiff legged and just this week has started to crawl again because she just cant walk. We have tried epsom salt soaks, heat and ice packs, massages, resting, stretching, water, we just do not know what else to do for her. Tylenol wont even touch it. So today, I went to her therapy, I had to work last week, and I walked in in tears. Miss Lisa and I talked since her new PT has only seen her like this so she doesnt really know what “normal” Brielle looks like. She did however say that she is much worse than last week. Lisa took one look at her and said ya something is going on for sure. She suggested we go to our pediatrician and get an xray for a possible stress fracture. I had 2 appointments set up for Green Bay today (35 min drive one way for us) so I spent the hour of therapy on the phone with the pediatrician, who squeezed us in his schedule like always! Rearranged the new AFO fittings, so we had to make the hour trip back to Green Bay (Which turned into much longer since I was super stressed and went about 20 miles past my exit! Each time!). The Xray did not show a break or a fracture. But from what I understood, they can not see a stress fracture on a Xray. They need to do an MRI or a CT scan. Her pediatrician said that she is definitely favoring the right foot, which is not normal for her usually its her left, and that she will definitely NOT put weight on that right foot so he referred us to an Orthopedic Surgeon who we go see tomorrow at 2. This has been going on for the good part of the month she has been cast free. I chalked it up to her having weak leg muscles and she just needed to gain them back. So keep stretching, keep strength training, keep working at it! It will get better. The last week it has gotten much much worse. A week ago Thursday she was running! Very twisted, but she was running. That lasted 2 days. Then all of this started. She asks to be carried, not like her At. All. Shes crawling. We set her down on her feet and she cries out OWE and falls to the ground. She says all day long her feet hurt her. Its exhausting for her. Its heart breaking for us as parents to watch. I feel like we have exhausted all of our resources an noone knows what is wrong with her. I pray this Doctor can help her. Obviously I dont want anything to be wrong but I also just hope he finds something tomorrow so that we can have a plan and get her pain free. This is noway to live. She has been thru so much already at her young age of 4. This isnt fair. She cant enjoy being the kid that she should be. I got an email from her sweet sweet teacher this morming. Sent me straight to tears. She said she is struggling in school to keep up with her classmates. She also said she is in visible pain. I know. I just dont know what to do! Its serious stuff. Its gut wrenching to watch. But we have to stay strong for Brielle. Crying takes place in the shower. Somehow she realized I was crying because she ratted me out to her therapist lol. She said “My mom was crying like a baby. Like Tayvah.” Gee thanks kid!
Friday, April 25, 2014
How is it possible the last time I blogged was in OCTOBER???????? Holy Slacker!! So where to begin!?! Soooooo much has happened since October! Brielle is still in school and LOVES it. She has made some pretty special friends, Kenzie and Tadan are amongst her "Best friends." She loves riding the bus like a big girl. And she loves doing big girl things in the classroom. She especially likes gym class and music/dance on the smart board. Her teacher, Mrs. Chrissy is AMAZING. I seriously can not say enough about her! We have decided to keep Brielle back in 3K one more year. The reasoning is because of her June birthday, so she will be a very new 4 year old when she would start school again. She also just isn't comprehending what is expected of her quite yet. She is very very nosey and watches what everyone else is doing, even if its not interesting like cutting paper. When they start 4K a lot is expected of them to be independent. And she just is not there yet. She is smart as a whip, but its just taking her a bit longer. Id rather hold her back and have to exceed vs pushing her and having her fail. All of Brielles teachers and therapist have been helping me get her to cooperate more for clinical therapy. She has been quite the pistol in clinical and it is beyond frustrating to try and get her to do ANY therapy for the first 15-20 min of a 45 session because she is screaming, hitting, kicking, arching away from us etc. We fight extremely hard for clinical therapy to be covered and to waste half of the session in fighting has been exhausting to say the least. I spoke with 4 of her teacher/aids and they have been doing great things in the classroom, as simple as a learning lesson about listening to your teachers, taking her aside to tell her she needs to cooperate and it is sure showing!!! The first 2 sessions after our meeting have been GREAT! It is sooo nice to go to clinical therapy and actually see her work and get some learning in! Have I mentioned how much I love her school?? ;) Brielle has been riding her horses yet. She is in love with them and riding. She truly looks forward to riding each and every week. Brielles PT has left her position so we have not had a Physical therapist since April 1st. Our old therapist from Birth to 3 has come back thru the clinic that we use!!!!!! I absolutely adore Lisa L and I have been having some ill feelings of Brielle falling backwards since she turned 3 vs excelling. It has been heavy on my mind and I have expressed those concerns with Lisa. Lisa will now be Brielles therapist until about June, until Country Kids gets their therapist going. Lisa brought up serial casting. We had botox Tuesday and I brought it up to her botox Dr who quickly agreed. She said she is very tight and it is time. May 1st Brielle will be getting casts on both of her legs. They will be the whole foot up to the middle of her calf. She can not take the casts off at all. No bathing. No swimming. :/ I am so very torn on how to feel. I feel awful that my little girl has to go thru this. She never asked for this. It isn't fair that she cant even swim in the summer or enjoy her baths that she loves so very much. But I feel hopeful we are doing the right thing and making her life better in the long run. Afterall, this is so so so temporary so we just have to keep muddling thru! There will be lots of tears I am sure. Lisa reassured me today once she got her hands on her that she is super super tight and she needs to be casted. She said casting will do wonders for her and her balance!! Her balance has been out of control. She falls all the time. She has come home from school and when asked how her day is, she says "Awful." I said how come "Because I fell down." She is almost 4 and I think she is starting to get embarrassed. If anyone asks her if shes okay after a fall she will hang her head and run off or sit there. I have been ignoring it and turning away if I see her do it, unless I see she is hurt obviously. The casts will be taken off on Wednesday and recasted every Thursday until they feel she is stretched enough. The casts will be placed to provide a constant stretch to her tight muscles. So for the next 4-8 weeks this will be our hurdle. But we overcame a huge 4 months hurdle in the hospital. We got this!
Monday, October 14, 2013
Brielle started school early September. She LOVES it! The first days bus ride was rough. It took myself and the bus driver to hold her down in her carseat and belt her in. It was awful and I felt terrible. I had to get in my car and drive to the school and make sure she wasn’t crying when she got off. I just sat in my car so she didn’t see me, and when she got off she was just looking around and taking it all in. She took her teachers hand and then ran in with the other kids. When she came home from school she was so happy and her bus driver said she didn’t cry once! She has been excited every day since!! Her bus comes at 8:10 and there are days where she has her backpack on by 7:30 and she says “Bye mommy. I got to go to school on my bus.” Its so sweet and I love that she loves school SO SO much!! Her teacher has sent me a few emails concerning her speech. She is concerned about her speech. I am not. Apparently, she does not talk in school. She said she can get one word answers out of her, but she doesn’t talk. Which floors me, because she is a jabber jaw at home and on the bus! I told her bus drivers that Mrs Chrissy is concerned about her speech and they both looked at me like I was nuts. So Im not really sure how to get her to talk more in school. Even when she comes home from school I ask her what she did for the day, and she wont tell us. Her teacher sends home a note each week with their agenda, which I am ever grateful for, otherwise we would have no idea!! But all around, she loves school and all her friends! She has a buddy on the bus, Tyler, that she sits by each morning! Therapy is going well. She is slowly learning that she will not get her way. The therapists are slowly learning her, and me. I think often, they are afraid of the limits they can test with her. The other day her new PT (Yes PHYSICAL THERAPY got APPROVED about 3 weeks ago!) had a talk with me about what was acceptable in my eyes. I told her to do what she needed to do to get her attention. Im okay with tears. She is a total tester and if they keep letting her get away with things, it will only continue or get worse. So they have started to put the foot down and make her do what they need her do, not what she would like to do. They do let her be a kid, so please don’t think that its all grueling work and no fun, because that is not the case! She does the trapeze bar and lands on 2 huge pillows, pushes a baby stroller into a stack of pillow blocks, swings in a cacoon swing, climbs up a rock wall to a slide and down into a ball pit, chalkboard, finger paints, beads, trampoline etc. Its all fun, but she wants to set the bar and rules and not be told what the agenda is. So we’ve been working on that, she gets to choose then Miss Donna gets to choose an activity etc. And as always she LOVES LOVES LOVES her horses!! She has started riding backwards and sideways and even a slow trot! Tuesday she started in the forward facing position and while her horse was walking she had to turn to sit to the right. Then she turned backwards. Then to the left. Then back to forward facing. She even lays down on her horses! Its amazing how big of a stunt rider she is! We signed Brielle up for Dance class. This child is so passionate about dancing and singing. And its great FOR her as well! We ended up putting her in the 1-2 year old class instead of the 3-4 year old class. I wanted her to be able to do the routines and not feel left out and not be able to do the program. The owner and I talked for quite awhile and we both agreed that the 1-2 year old class was most appropriate, and she taught it so she could work with us better. She loves it and she gets so excited to go!! Brielle has a busy week, and sad to say, a month in, it is catching up to her! She has school on Monday and Wednesdays. Clinical OT on Tues. Clinical PT on Thursday and Dance on Friday. Everyday of the week she is going. She has a nasty cough that she just cant shake. Listening to her on the monitor now, trying to sleep, she can’t stop coughing. We have had Something every weekend for as long as I can remember. And theres no end in sight til November! Im almost wishing October to be over because we really need a weekend to just let the kids sit home and do nothing! Tayvahs to the point where I open the car door and she screams and trys to wiggle out of my arms Miss Tayvah turned a year old October 2nd! Where has this year gone!! Its so crazy! I love watching Tayvah and Brielle interact. They seriously love each other. Of course they have their sisterly love fights over a doll, but that’s to be expected. They love more than not however. Today when Brielle got off the bus she asked me “Wheres my Tayvah?” She misses her when we drop her off at grandmas house to be watched while we go to therapy or dance class.
Wednesday, August 28, 2013
It has been some time, once again, since I have posted. Tayvah (10 months) is everywhere! She started walking shortly before 10 months old and is climbing everything she can climb, walking and running everywhere. Her feet touch the ground and she is off! She literally doesn’t stop long enough to even snuggle for a second! She is over being held and gets mad if she cant just run! It makes doing anything or going anywhere mighty difficult! Brielle was so easy compared to Tayvah ;) So Brielles therapy continues to be a battle. We got our 3rd denial letter for Physical Therapy. When she was in Birth-3, which is our county funded therapy program, she was receiving Occupational Therapy once a month, and Physical once a week except for the 6 weeks after Botox, she would have PT twice a week. Our insurance company then denied Physical therapy, but approved Occupational weekly. I do no understand one bit how they can deny the PT that she needs so much of, but approve OT 3x more a month than we had before?!?! It make absolutely NO sense to me at all! So her clinical therapy was appealing and getting no where so we had to appeal and got a “Trial date” of Aug 27th to go before a judge and try to get the decision over turned. When we first got evaluated in June, I wasn’t to keen on the therapist that evaluated Brielle. She didn’t ask me many question, like the OT before her did, and she just let Brielle run free and didn’t really do much with her. But I didn’t know what they were all doing etc etc. Come to find out yesterday by the PT that is helping me with the appeal, the evaluation wasn’t very well written which is the problem she believes! So we don’t know if we should go thru with the trial, but she thinks we have a very very small chance to win, or just cancel all of this appealing that we have been going thru and total send a new Pre Authorization letter come Sept 6th when this one would expire. Michelle, our new PT thru clinical, is going to call our Birth to 3 therapist that worked with Brielle and was going to help us on trial date and see what they thought as a whole. I have no idea. This is all totally new to me. I don’t care either way, but this little girl needs PT. Period!! She is starting to walk with a twist, in turn creating muscle spasms. Shes now to the age where she can tell us what hurts. It breaks my heart to hear her tell me her legs hurt. My mom and I went shopping the other day and Brielle was in her carseat and started to say she hurt. My mom asked her what hurt and she told my mom her legs and pointed to where it hurt. When it starts to spasm you can definitely feel what feels like a hard rod in her leg. We do deep massage and pressure to help release it. She is on Baclofen to help the spasms but she is an awful medicine taker, so when we can get it in her we do! So please please please Pray that her PA or trial goes thru on Brielles side for the need for Therapy!! Shes too young for them to be giving up on her now! All her therapists agree with us on that one, and they are all pushing so hard on our side! I had a meltdown the other night when one of the moms on this site I am on started talking about dance classes. I enrolled Brielle in one a few months back and she was very stand offish and just stood back and watched, BUT happy as can be! She got pulled literally on the ground while doing ring a round the rosie because she cant keep up with the other kids, and side stepping is hard for her. It broke my heart to think that she LOVES dancing and singing soooo much, and she may not be able to do it with her legs. I hesitated, but then thought WTH and emailed the owner of the dance school. I asked her if she ever dealt with kids with disabilities and she said she had not, but she would love to help us! A whole new wave of tears filled me, but this time tears of hope! Tears of JOY that she may be able to dance with other kids and have so much fun!! Ok ok, and I also thought THERAPY right away! She suggested I put her in one of her classes so that she can modify it to a way that Brielle can participate but not stand out! LOVE LOVE LOVE That she is so willing to help us make this possible!!! It is a 19 week class however, and every Friday. She has school on Monday and Wednesday and Clinical Therapy Tues and Thursdays (IF we ever get this Physcial therapy approved). So that would be something every day. So maybe we will wait til February when the new classes come out, or maybe I will just add it to my chaotic life :) Either way I am so excited that the teacher is so excited to help us and I am excited to get Brielle into dance! Brielles Benefit info is here! It will be: October 5th 4:30-8:30. Pizza buffet for $5 served 4:30 on Bowling unlimited plus shoes is $15 Raffles, silent auctions, 50/50, horse races, bingo and more!!! Come to eat, bowl, or just do raffles and auctions! You can choose to just bowl. Just eat. Bowl and Eat. OR JUST come to do the games and raffles! There is something for everyone!! The two women, Anna and Jessica, who are the founders of Making Dreams Come True are amazing! I still can not belive we have this on our side! Thru all this fighting for therapy and beyond, it is nice to know that we wont have to worry about one more added expense for Brielles future! She LOVES her horses! If everyone could see the smile on her face when she sees that horse walk thru the door, it is priceless!! Brielle did a horse show for EE fundraising activity on Saturday Aug 24th. Most of her grandparents came! It was amazing for them to see her on that huge horse, riding! Doing what she loves! And what HELPS her in so many ways!! Anna from Making dreams even came! It was great that she was able to see the joy on Brielles face and see what she is helping come true!! Brielle even got a Trophy! She is so excited about it and shows it to everyone!! Saturday Night we went to our communitys Summer Send off Concert and they were giving away 200 bikes to children! Brielle was one of the lucky 200!! She got her first big girl bike and is so excited to learn how to ride!!