Update.....

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!

Walking to Crawling.................

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!

UPDATE TIME

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!

Busy Busy Family!

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.

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!!

As we know, Miracles do happen!

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!

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.

Is winter over yet??

Brielle has been sick for the past 4 weeks. She had an ear infection, sinus infection (both for 4 weeks straight) Pneumonia for a week and now RSV, as well as Tayvah. Brielle was on 3 different antibiotics and it would not clear the ear infection what so ever. We finally said enough was enough after she was telling me her ears hurt (This little girl clothes lined her forehead on her dads truck tailgate, had a HUGE goose egg on her head and never ONCE cried) So for her to tell me something hurts, it hurts. The doctor approved her for the Rocephin injection and it cleared it up overnight! She went from crying as soon as she woke up "Mama I sick" "Mama I hurt" and laying on the couch not moving to a spunky sassy 2 year old the following day! We tossed around the idea of tubes because this is pretty common for Brielle. It takes her a long time to get over the simplest illness and ear infections last atleast 3 weeks if not more. We decided that her next infection if she cant shake it we will go thru with the tubes. I know its the simplest procedure, but I just dont want to put her thru anything else, but in the same sense I dont want to make her go thru with a 3 week ear infection!

During this whole month of illness, therapy and botox have been haulted. She got botox RIGHT before she got sick. So we feel it did not do its job. Partly because she already dislikes therapy with a passion lately, and when she is sick the simplest little touch can send her thru the roof. My Mother in law stopped in while she was having physical therapy and got to see how she fights. I could tell she never expected it from her :) She is a STRONG willed little girl. And if she doesnt want to stretch she will not stretch. She puts up the biggest fight and I have to constantly brib her with gum, suckers, stickers, etc. I cant wait til its spring out and we can go outside and have a different setting for therapy. I think she is overly bored! I can tell that she is having big time cabin fever. She tests every button I have left in my body daily. Hitting her sister and both of us, throwing everything, dumping her plate etc. Normal 2 year old behavior but up a notch.

Brielle new fad is skyping! She LOVES to skype! She walks around with the Nabi2 and asks to skype with papa, johanna, and grandma. Its cute until noones available then the tantrums come.

Brielle is still at a measely 22 pounds. Shes been stuck at 22 pounds since about 18 months. She is now 33. We are going to be doing a bunch of tests at her 3 year check up (thyroid, pituitary gland, bone age density etc) Im not really sure what to make of it. I dont mind that shes little, but WHY. Why isnt she gaining anything? Is is simply because she has cerebral palsy and it takes her little body twice as much energy just to walk and do the normal things? Okay, Ill accept that. But we just dont know. My doctor is stumpfed and wants to make sure we do all the tests that could be possibly harmful if left untreated and if they all come back normal, Great. Atleast we did what is needed to make sure everything is okay and she is just a small micropreemie with CP.

Tayvah....She is a motor maniac. She is rolling everywhere, every direction, to get into as much trouble as she can! you cant take your eyes off of her for a split second because she is across the room before you know it. She pulls herself up onto all 4s and rocks and wants to crawl! She wants to go so bad! She gets the one leg going but doesnt know what to do with her hands so she face plants. She is starting to sit unassisted too. Last week I started baby led weaning. She is very interested in grabbing any food we have so I thought lets try it and she is doing pretty good with it! She loves to mash the green beans and sit in her high chair like a big girl. She loves her jumperoo and when we say "Jump Monkey" She gets a HUGE smile on her face and goes crazy. Its so cute! She also giggles quite a bit too. She loves to watch brielle and smiles and laughs at her alot.