So much to share! In my last update I mentioned how expensive her therapy is weekly but we would find a way to make it happen. I got a call Monday the 17th at 8:15 from her clinical therapy that her physical therapy was denied but her occupational therapy was approved and they would like to see her at 11:45 that day if we could make it happen. It was a rush to get both girls ready and on the road during nap time but we made it. I was discouraged about the physcial therapy being denied. She needs PT more than OT anyday! But it is what it is and we just keep fighting!! I pull in the driveway of therapy and Tayvah was screaming! I walked around her side and opened the door to see her and her carseat covered in poop! We were just swimming the day before so I used her extra clothes and had nothing in the car!! I stripped her and got her cleaned up, it was all over her legs, feet, arms, ugh! I was searching my car frantically for anything to put this child in!! I found a 24 mo sweater and her skirt she had the day before that was crusty from being wet. Mind you it was 82 degrees!! And the sweater only had one top button so her whole belly was hanging out. O lordy! Lets do this! Go around to get Brielle and on her floor is a pair of Tayvahs shorts and Brielles tank top...Which fit Tayvah great!!! WOOHOO!! So after the poop explosion, we go into therapy and her therapist says "Hi Brielle! You going to ride a horse??" I had NO idea this was on their agenda, so I didnt bring money (they dont take debit) or her helmet. But we were making this happen! She LOVED it! It was so amazing to see her pretty little face light up and be so proud to be on that horse. She did not want to get off. There was another little boy that rides with her as well and she talked about Marshall all week. Her horses name is Dakota and I hear about her the whole.entire.week as well. But it melts my heart that she is so in love. And I have already noticed a difference in her! She is not quite as tip toed as she has been in the past few weeks. She doesnt fall as much as she used to. AND she crawled up into her highchair that just sits on the regular kitchen chair for the first time ever!!!!! Shes only rode 2 times so far and I can see this horse doing amazing things already.
With that being said, my girlfriend nomiated Brielle for a small wish thru Making Dreams Come True to have one of her 4 weeks of hippotherapy paid for which is $135. They contacted me about Brielles story and have started a fundraiser for her with a goal of raising $5,000! This would cover SO much therapy for this little girl it is AMAZING!! They are having several fundraising parties online such as WildTree and then in September they will have an actual benefit to raise money for her. She is so blessed. We are so blessed. I still dont feel like this is true and real and waiting to wake up from this dream. I can not begin to thank Jessica Falbo and Anna Lynn for doing this for us!! They have also started a page on Facebook for Brielle. Heres the link for that if you'd love to join in https://www.facebook.com/#!/AydensKeeperBrielleLynn?fref=ts Its called Ayden's Keeper-Brielle Lynn And then there is a site that you can make donations as well and that is https://www.wepay.com/donations/ayden-s-keeper On the facebook page, they have the wildtree fundraiser going on right now. 20% of all sales goes to Brielle. There is a photo contest that will be happening in a week or so. So get your kids pictures sent in! We can not express how grateful we are of everyones help and donations thus far! They also have put quite a few pictures of Brielle doing therapy and riding her horse! Go check it out, like and share to help us get 1000 likes :)
July 5th Brielle will have her surgery for her adenoids and tonsils. Nervous but hoping this will help her sleep and breath better. The doctor wants to keep her for a 23 hour observation due to her size and chronic lung disease and just overall being high risk. Prayers she does well please!
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Sunday, June 30, 2013
Thursday, June 6, 2013
Update!
Its been quite awhile since I last posted! I am sitting in the tire station no kiddos so I thought perfect opportunity to update!
Lets see...Where to begin! We think we figured out why both girls were so wheezy. The middle of May I seen a wet spot so I cleaned it up, wasnt going away so we scrubbed the carpet and it was still really wet for quite awhile. So we called our landlord over and found out the water heater was leaking and for quite awhile!! It was under a layer of carpet, padding, and carpet so it took awhile to show thru! In the meantime, there was a big curio cabinet on the wall the water heater is in and when we pulled the cabinet away from the wall, there were mushrooms growing behind it!! And mold in the closet (that noone could see until we ripped the closet completely apart) My brother in law who does water restoration for a living came over that night and ripped away the whole closet part and got everything icky out of there. So we have been waiting for insurance companies and construction companies to come to an agreement to fix it! We will more than likely be living in a hotel for awhile until the house is done. The whole kitchen floor has to be ripped out and replaced. The living room carpet etc is wet and has to be cleaned and sanitized and dried out. So since all of that has been ripped out, the wheezing has come along way! Im hoping we found the problem and got it fixed!!
Brielle turned 3 on Saturday June 1st! She wanted a princess party, so that is what she got! It went really good and she is one very lucky little girl to have so many people love her! With turning 3 means we also lost all her therapists. I am very saddened and worried. Of course Sunday, she was walking COMPLETELY on her tip toes and could not get her foot down what so ever. Broke my heart! I feel like she is going to fall thru the cracks and it worries me. I had her wear her orthodics all day Sunday because she would not let me stretch her and that night she was crying in pain on her left leg. there was a mark from the orthodic, but I think being so tight, and then making her stretch that much, may have aggrivated her. Plus she had a busy busy weekend so that may have been alittle much for her as well. We now have the ball rolling to get her into Country Kids therapy in Depere. Our insurance is dragging their feet and taking forever to get us a preapproval to get her started in the clincal therapy. I could start her today and pay the $70 copay each time, but we dont have that each week. So I am trying my best to stay on top of everything in hopes I dont miss out on any problems she is having. I also am attempting to get her into hippo thearpy. It is $135 a month. Also expensive, but I heard from several parents how it has helped their child and I am determined to find a way to get her in to ride a horse!!
We got Brielle a new type of botox called xeomin. This type does not have to be refridgerated and the protein does not have to be divided up like the other botox she was getting that I felt was not working for her. So Dr Morberg suggested we try the Xeomin. We noticed great things in her right away! I was very excited! But now almost 2 months in, I think it lost its effect again. Tomorrow we have an appointment with Dr Bettag, ENT, to see about tubes and adnoids. If we decide to go that route, then we will do phenol on her at the same time. Phenol is a deeper botox that goes straight to the site that is having troubles. She has to be put to sleep for it however. Ive heard good things about it, but I dont want to put her out if I dont have to.
Brielle LOVES to go to the zoo. It is right by our house and we got a season pass for christmas! She loves baseball & basketball, She loves to make her sister giggle and smile! She loves to play outside and pushing her strollers all around! She is great helping around the house with picking up toys and "folding" laundry. Her favorite sayings right now are "Excuse me, Im a piglet." after she burps. My mom taught her to say "Peace out Grandma." Shes totally a little mama! She will tell Tayvah to be careful and not to do something she knows she shouldnt. She will also take stuff from her she knows is bad for her (ex a peice of paper).
Even tho therapy is finished, we still have a ton of appointments! Brielle has a very angry case, the angriest her has seen he told me, of KP on her legs. They are very red, itchy bumps on her entire thighs! We also have the ENT and clinical evals to do. Always keeping us busy!
Over the memorial weekend we had a big get together at my dads house. My sister had her 6 and 2.5 year old, my cousin had her 5 year old and there were 3 other boys 6 and under as well as my cousins twin 1 year olds. It crushed me that Brielle could not keep up. She could not run thru the corn field as much as she wanted. She can not walk very well on uneven ground without falling. My dad has a big hill and theres a tire swing on top of the hill and we were all on the bottom of the hill by the bonfire and she wouldnt go up it. My neice and my cousins child were doing sidewalk chalk and by the time Brielle got over there they got up and ran to the next activity and Brielle just sat there and watched. Almost like she was done chasing them. She cant move as fast as the rest of the kids and it sure proved it that weekend. I went inside to change Tayvah and had a pity party by myself. Of course Josh knew I was saddened by this, so he came to find me after a few minutes. But then I just had to composed myself and pretended nothing was wrong. I can tell that the older she gets, the more she is realizing she cant keep up. It.breaks.my.heart!! I try so hard to do everything in my power to get her the best level of care and best therapy out there, but money talks. Its so sad. Its so sad that insurance wont cover certain aspects of a childs well being. Its so sad that we have to fight and fight and fight just to keep coverage. She didnt ask to be born 16 weeks premature. She didnt ask to have cerebral palsy. Why cant we atleast give her the best? No questions asked!?!?! Its beyond frustrating, but I will not give up. She is going to always have a smile on her face. She will always be laughing so hard she cant stand up! I will always be fighting for her!
As for my other amazing daughter, Tayvah rolled over at 3 months, was crawling a few days before she was 6 months and pulling to stand by 6 1/2 months and walking with the walker that Brielle used to learn to walk by 7 months. We have 2 of those walkers, so Brielle and Tayvah have walker wars. It was hilarious! Brielle is the BEST big sister and she is always making Tayvah laugh and smile. You can tell Tayvah just adores Brielle, because she is always smiling and looking for her. She also will crawl and chase Brielle and Brielle giggles so hard she cant even stay standing lol.
Lets see...Where to begin! We think we figured out why both girls were so wheezy. The middle of May I seen a wet spot so I cleaned it up, wasnt going away so we scrubbed the carpet and it was still really wet for quite awhile. So we called our landlord over and found out the water heater was leaking and for quite awhile!! It was under a layer of carpet, padding, and carpet so it took awhile to show thru! In the meantime, there was a big curio cabinet on the wall the water heater is in and when we pulled the cabinet away from the wall, there were mushrooms growing behind it!! And mold in the closet (that noone could see until we ripped the closet completely apart) My brother in law who does water restoration for a living came over that night and ripped away the whole closet part and got everything icky out of there. So we have been waiting for insurance companies and construction companies to come to an agreement to fix it! We will more than likely be living in a hotel for awhile until the house is done. The whole kitchen floor has to be ripped out and replaced. The living room carpet etc is wet and has to be cleaned and sanitized and dried out. So since all of that has been ripped out, the wheezing has come along way! Im hoping we found the problem and got it fixed!!
Brielle turned 3 on Saturday June 1st! She wanted a princess party, so that is what she got! It went really good and she is one very lucky little girl to have so many people love her! With turning 3 means we also lost all her therapists. I am very saddened and worried. Of course Sunday, she was walking COMPLETELY on her tip toes and could not get her foot down what so ever. Broke my heart! I feel like she is going to fall thru the cracks and it worries me. I had her wear her orthodics all day Sunday because she would not let me stretch her and that night she was crying in pain on her left leg. there was a mark from the orthodic, but I think being so tight, and then making her stretch that much, may have aggrivated her. Plus she had a busy busy weekend so that may have been alittle much for her as well. We now have the ball rolling to get her into Country Kids therapy in Depere. Our insurance is dragging their feet and taking forever to get us a preapproval to get her started in the clincal therapy. I could start her today and pay the $70 copay each time, but we dont have that each week. So I am trying my best to stay on top of everything in hopes I dont miss out on any problems she is having. I also am attempting to get her into hippo thearpy. It is $135 a month. Also expensive, but I heard from several parents how it has helped their child and I am determined to find a way to get her in to ride a horse!!
We got Brielle a new type of botox called xeomin. This type does not have to be refridgerated and the protein does not have to be divided up like the other botox she was getting that I felt was not working for her. So Dr Morberg suggested we try the Xeomin. We noticed great things in her right away! I was very excited! But now almost 2 months in, I think it lost its effect again. Tomorrow we have an appointment with Dr Bettag, ENT, to see about tubes and adnoids. If we decide to go that route, then we will do phenol on her at the same time. Phenol is a deeper botox that goes straight to the site that is having troubles. She has to be put to sleep for it however. Ive heard good things about it, but I dont want to put her out if I dont have to.
Brielle LOVES to go to the zoo. It is right by our house and we got a season pass for christmas! She loves baseball & basketball, She loves to make her sister giggle and smile! She loves to play outside and pushing her strollers all around! She is great helping around the house with picking up toys and "folding" laundry. Her favorite sayings right now are "Excuse me, Im a piglet." after she burps. My mom taught her to say "Peace out Grandma." Shes totally a little mama! She will tell Tayvah to be careful and not to do something she knows she shouldnt. She will also take stuff from her she knows is bad for her (ex a peice of paper).
Even tho therapy is finished, we still have a ton of appointments! Brielle has a very angry case, the angriest her has seen he told me, of KP on her legs. They are very red, itchy bumps on her entire thighs! We also have the ENT and clinical evals to do. Always keeping us busy!
Over the memorial weekend we had a big get together at my dads house. My sister had her 6 and 2.5 year old, my cousin had her 5 year old and there were 3 other boys 6 and under as well as my cousins twin 1 year olds. It crushed me that Brielle could not keep up. She could not run thru the corn field as much as she wanted. She can not walk very well on uneven ground without falling. My dad has a big hill and theres a tire swing on top of the hill and we were all on the bottom of the hill by the bonfire and she wouldnt go up it. My neice and my cousins child were doing sidewalk chalk and by the time Brielle got over there they got up and ran to the next activity and Brielle just sat there and watched. Almost like she was done chasing them. She cant move as fast as the rest of the kids and it sure proved it that weekend. I went inside to change Tayvah and had a pity party by myself. Of course Josh knew I was saddened by this, so he came to find me after a few minutes. But then I just had to composed myself and pretended nothing was wrong. I can tell that the older she gets, the more she is realizing she cant keep up. It.breaks.my.heart!! I try so hard to do everything in my power to get her the best level of care and best therapy out there, but money talks. Its so sad. Its so sad that insurance wont cover certain aspects of a childs well being. Its so sad that we have to fight and fight and fight just to keep coverage. She didnt ask to be born 16 weeks premature. She didnt ask to have cerebral palsy. Why cant we atleast give her the best? No questions asked!?!?! Its beyond frustrating, but I will not give up. She is going to always have a smile on her face. She will always be laughing so hard she cant stand up! I will always be fighting for her!
As for my other amazing daughter, Tayvah rolled over at 3 months, was crawling a few days before she was 6 months and pulling to stand by 6 1/2 months and walking with the walker that Brielle used to learn to walk by 7 months. We have 2 of those walkers, so Brielle and Tayvah have walker wars. It was hilarious! Brielle is the BEST big sister and she is always making Tayvah laugh and smile. You can tell Tayvah just adores Brielle, because she is always smiling and looking for her. She also will crawl and chase Brielle and Brielle giggles so hard she cant even stay standing lol.
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