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Wednesday, August 28, 2013

Updates, Updates, Updates!

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!!