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.

Schools coming....

Brielle has been fighting a cold for the past 2.5 weeks. I had her in the doctor last Monday and he did a chest Xray just because Brielle is Brielle and things can change so fast on her. That they can! He sent us on our way with a "Just a virus" and come back in a week if not better. As usual, we were back in a week this last Monday. This time, the Virus turned into an ear infection, sinus infection and a "mucousy sounding spot in her right lung thats not YET pneumonia." She was put on Augmentin, Zyrtec, Flonaise, and Albuterol every 2-4 hours as needed. This child HATES taking medicine with a passion!! Who can blame her! But oye! It is a fight to say the least! Tuesday she woke up and she was retracting so bad and wheezing so hard I could hear her in the other room! I gave her 2 puffs of albuterol and a rescue dose 15 minutes later which did nothing. After an hour she was still retracting and her therapist showed up. I expressed my concern to Lisa and she said she could see her retracting thru her shirt and up into her throat it was that bad. Lisa thought she looked the worst shes seen in the past 2.5 years we have known each other and was "hospital bound".  So I called the doctor and spoke to a nurse who read Dr Krainiks notes and said he put her on the Augmentin assuming that spot would turn into pneumonia. Because thats how Brielle is! Fine one day, horrible the next! She said that is sounds like it definately turned into pneumonia and if it is, even if we brought her back in all they would do is an xray to confirm and keep her on the same meds. So thats what we have been battling for the past 2 weeks! And the last 4-5 days Tayvah has had a runny icky nose and fighting taking her bottles. I can tell she doesnt feel good either. Shes been a crab apple and just wants to sleep ALOT more than her norm.

Brielles biggest accomplishment in the last week....I had the foot stool up on the couch, she has been obsessed with sitting on it for some reason lately. She grab on and was attempting to bring her leg up. It took her a few tries and I kept encouraging her to O try again, Keep it up, Raise it alittle higher and all the sudden she was UP! I made a big stink about and danced around and shouted "YOU DID IT!!!!" And she was so proud of herself she was shaking her little fists in the air yelling "I DID IT!" And then she had to do it 2 more times! This seems like such a small feat for most, but she has needed help getting up into any chair, bed, highchair, couch, etc her whole life and to do it all by herself was a huge deal to her! Granted it helped that she had the space between two peices of the stool to anchor her hands and pull, but hey she did it and was so proud! She has been little miss independent lately, which is great, but also means more meltdowns when she cant do something she knows she should or can do!

Today I met with 5 people to talk about Brielles option after her 3rd birthday. 3!!! Where in the world has the past 3 years gone!!  When Brielle turns 3 years old in June, she looses all her benefits thru the birth to 3 program that she is in now. So I need to find outside therapys to work with her. I was a nervous wreck and still not sure how I feel about sending her to school. I feel alittle bit better after meeting with them and asking a million questions, but Im so not ready. They could tell and told me I have til Fall to transition myself. I felt alittle dumb to have tears in my eyes, but everything she has gone thru and still going thru, I just feel the need to shelter her and protect her from the mean world. never going to happen, I know, but its just my quirky thinking. We got to meet her teacher, Mrs Krissy, the board member Mrs Franklin and then Brielles current PT Lisa, OT Mary Ann, and current teacher Jenni. The 3 therapists described what they are doing for Brielle currently and what they feel she will need help with in school. Some of the concerns we have that she should be doing as an average 2 year old is Taking on and off her coat by herself. undressing herself, potty training, stairs, climbing on furniture etc.  I asked her teacher what types of things will they be doing with her since she will be getting Physical, Occupational, and speech in school. She said they she would be put in a preschool like setting. There they will be coloring and doing art projects, singing and dancing, reading, small field trips etc. She will even have a little backpack of her own :) Everything like a normal school aged child would do but she will just be getting help with it. She said that she will ride the short bus and they come right to my house in my driveway and I put her on the bus in her carseat and I get her off. Her teacher and the aide will get her on and off at the school. She will go 2 days a week for 2 1/2 hours. I believe deep down in my heart she will LOVE school! I will adjust. I will probably love my 3 hours off a day with Tayvah. :) Ive wanted nothing more for her to be normal and average and do what every other child is doing. This is her chance. She will do great and she will love it! And Mom will learn to love it too :)

Reflux meds work!

Tayvah is better! I ended up talking to the girls pediatricians wife (I see her at the NICU I volunteer at) and talked to her about what was going on and she said that her youngest had reflux and it was bad! So I took her in almost 2 weeks ago and she was put on Zantec. It is helping some. She still gets in her crabby spurts tho. Not as many, but some. I have noticed that her crabby spurts come when she is over stiumlated. Ex. Basketball games (Which Brielle LOVES to go watch her auntie Kaila kick butt at!), family partys that are noisey, or just an over all busy day that she is in and out. She is VERY much a baby that likes to just lay and play with her toys and not be handled alot. Total opposite of Brielle. She loves her jumperoo, she loves to lay on her belly and reach for toys and roll over and just lay and coo. She is much like Brielle in the sense that she does not want to be rocked to sleep. And when shes ready for bed, she lets you know! And you better just put her in the bottom right hand corner with her head tight up against her bumper with her face facing the wall and her thumb in her mouth. Thats how she sleeps each and every night. Both of my kids are very much Crib sleepers. They dont sleep well anywhere else. Its healthier to have that (so the experts say) but it can be a pain when you are out and about and they are tired.

Today is Tayvahs 4 month check up! Holy man! Where did the time go??? I feel like I had her a month ago! She is growing so fast I can hardly believe it. 4 months until Brielle is 3! Oye!

Brielle is weighing in at 22lbs 4oz and 34". Tayvah is weighing at 13lbs 11oz and 17 1/2". Grow babies grow! On second thought, SLOW DOWN!!

I just signed the papers to enroll Brielle into the early childhood program at Hortonville School. When Brielle turns 3 in 4 short months, she looses all her therapists. I will have to bring her to the Depere clinic she gets botox at currently. But early childhood will also benefit her if she qualifies. I hope she does. But I cant believe I am even to the stage of signing her up for school. I feel like we just signed her discharge papers from the NICU to bring her home. Now Im signing papers to send her off to school. Time needs to stand still for awhile.

Brielles botox isnt working as well this time. Her therapist is entertaining the idea of Phenol instead. Phenol is a deeper injection right to the site of the problem. She will be put to sleep for that procedure. NOT a fan of phenol! I will have to ask Dr Morberg her opinions on it and go from there. I just dont know. I had to go in to a "interview" to talk to a neurologist to see if they consider Brielle disabled or not to keep getting medicaid. While answering all the questions and describing the things she cant do that a normal 2 year old does was somewhat depressing. She cant climb stairs or do down them unless she does them like a 1 year old. She cant climb up on the couch or a chair. She is still in a crib with no end in sight as of now. She cant climb up a stool on her own to sit on the big girl potty. She cant run. She cant walk on an uneven surface without falling. She cant take off her own clothes (mainly her shirt and socks). She cant open a door. She cant push herself with her feet on a riding toy or wheel the pedals of a bike. I know to most they sound like petty things. But in the real world she is pretty behind. Some 1 1/2 year olds are doing more than she does. My 2 year old neice does more than she does right now. Im worried about Tayvah passing her up and doing what she cant and then it kicks into Brielle why she cant do those things. Im hoping it has the other effect and she learns from Tayvah and benefits from it. When we went to a family birthday party a few months ago, it was in a big hall and there were all sorts of kids around Brielles age there running around. They would go up and down the 3 steps and chase each other. Brielle was far behind and still going down the first 2 steps by the time the other kids younger than her were back and passing her up again. It was so hard to see. It pulls at my heart in the worst way. My sister and I just talked about this the other day as she works with a lady who takes care of her older grandson with CP. He falls in school and he can not play sports which he wants to because of the disability. My sister said that she can not imagine how I feel as a mom watching my daughter struggle with average kid activities. It is hard. It breaks my heart. But to me she is perfect. I just dont want her to ever think she cant do something. Right now she is so full of life and keeps on trucking with that beautiful smile on her face. Her smile is so contagious! I just hope it continues and she knows that if she sets her mind to it, she can and will accomplish anything!! Because she has already accomplished so much at 2 1/2 years old! She has impacted and given so many people hope at her young age.

Update!

I am a horrible blogger lately! Partly, because I do not get on my laptop a lot and usually check in on my phone. Anywho, Things have been chaotic but enjoyable here. Tayvahs torticolis has seemed to subside. She is still being watched but we are just keeping up with the stretching and encouraging her to look to the right as much as we can. She rolled over one day shy of 3 months on New years day! She scoots forwards and backwards. Her therapist evaluated her at a 6 month level as far as rolling, head control, and scooting. This child wants to GO! She wants to sit up all the time and never lay down. She loves her jumperoo and bumbo to sit up and watch her crazy sister run around  She is so alert! The past 2 months have been hell to say the least with Tayvahs colic. Especially the last month, it has gotten almost unbearable. It comes out of nowhere and there is nothing that works to stop her. Friday was a breaking point and I cried with her. She gets so upset and stiffens out and just a squealing cry like she is in pain. A totally different cry from a normal Im hungry cry. SO I asked some other moms their opinions and what to do! I tried gas drops, gripe water, apple juice, colic formula, you name it! I was desperate and would try anything at this point! 2 ideas I got, were to switch her to nutramigen formula and chiropractor. We switched her on sat night late and could tell a difference right!Nutramigen is a meat based formula and not the normal milk based formula. It was SO nice to have my happy little girl back! Monday I took her to the chiropractor! Holy man! Why did I wait so long?!?!? She was out quite a bit in her back and neck. She goes back Wednesday and I am taking Brielle this time too. This Chiro, Jim VerVoort, does adjustments on 0-4 year olds for free. He is the nicest man!! He spent 45 minutes with her and explained a lot to us and was very caring! Tayvah has only had 1 colic crying spell since Saturday! I can.not.belive.it!! For those that don’t fully understand, this child was having a good 7-8 colic crys a DAY. They would last 10-20 minutes and she would just CRY and SCREAM to the point she couldn’t catch her breath. She would turn bright red and stiffen her body out there was nothing to settle her down. My child was in pain and I did not know what to do! I told Josh that I think colic is harder to deal with than the 98 days in the NICU. In the NICU I could step away. I can leave. In the NICU I had others helping to fix the situation. It was ME trying to figure out what to change and how to fix my unhappy baby who appeared to be in so much pain. It was seriously daunting. I felt horrible that I did not know what to do to make her better. And now that she is happy and not crying and not appearing to be in pain, I am on cloud nine! The smiles have been endless. I don’t have to work to get them anymore. I just look at her now and she glows! Brielle learned how to turn the TV volume up to drown out Tayvahs screams. I asked Brielle at the Chiro if her sister screams a lot. She said “YA” lol. Poor kid. Im just so glad she is happy finally! And I hope things with her continue the way the last 2 days have been!!


Brielle got another round of botox today. We were talking 2 weeks ago about how we were not sure if she really needed botox. She looked pretty good. But the last week she has gone down hill big time. The simple things like putting her foot up on the step to climb the stairs, she could not do. She was walking on her tip toes 90% of the time and just could not get her foot flat due to her ankles being so incredibly tight. She has started grabbing her upper legs again so Im thinking the muscle spasms are back and I am thinking about restarting baclofen. But maybe the botox will be enough to loosen her enough where they will go away. Maybe the chiropractor tomorrow will be able to help with that as well. Only time will tell. It is nice tho that she is getting to the age where she can tell me. Ive been trying to teach her what hurt means so she can tell me. Shes getting it down pretty good.

Brielle is the best big sister a mom could ask for. She LOVES to help get her nuk, “cover up” her sister, get bottles, throw diapers away, and her all time fav hold her amongst much more! I love to watch her interact with Tayvah. It is so adorable and brings a smile to my face every single time. Her favorite shows are Full house, max and ruby, dora, and SID the science kid. She can count to 12, says ABCDE and can say some with a song playing. She loves to watch her favorite shows and sing along with them. Brielle and her cousin Johanna start Ballet classes tomorrow night. I think she will love it, but we will see!! She loves to play hide and seek! She is getting pretty clever with her hiding places lately! The other day she was under the dog beds, under the bedspread that she pulled on the floor a bit, and the best was when she went in the closet. She sits so still for a 2 year old and she is so quiet. The closet, I didnt see her go in there (and didnt even know we were playing!) and she scared the crap out of me because I couldnt find her!! She laughs and laughs and hits her leg because she thinks she is just so funny! Which she truly is pretty funny :)  She loves to watch her auntie Kaila kick butt in basketball! However she dislikes the pep band with a passion! (loud noise). She loves to take her doll and feed her and burp her etc, everything that I do with Tayvah. She play Tea party and is really getting her “pretend” stage going. Not a day goes by that I just stare at her and marvel in how far this little has come! I still volunteer at the NICU on Monday night. There are some little ones up there right now and to see the parents going thru what Josh and I went thru 2.5 years ago makes me really count my blessings. Talking to those parents really makes me remember why I am up there. Just to show them how far Brielle has come and what she has overcome and to see the hope on their faces is so rewarding! That is why I do it. I would have LOVED to have someone to talk to. Someone to offer me that glimmer of hope. Im blessed that I get to do that for others, and come home to the miracles in my life.