I could swear last year was just yesterday! Did I blink to long?

Time is traveling so fast. At times it feels like its moving so slow but when its the end of December and everyone is reflecting on year, So much has happened and it doesn't seem like that long ago. I can still remember things from the beginning of 2012 that feels like it was just last month.I can remember every little detail of days. ( Now my short term memory is just crap,I cant tell you what I had for breakfast yesterday with out having to think for 10mins). And having a good long term memory isn't a good thing either. Some of the stuff I would like to just forget a lot of the details too. I can tell you what day or a week of when everything has happend with Chase.

All I can do is thank god, we are all in good health. Well on the right track with chase's. And that nothing else has really came up with anyone in our family. This will be the year that we can remember that we have a lot of great things in life that we have to fight for. This is the year that the internet and another's mothers blog that led me to believe that we needed to change treatments with chase,and found EDF casting. Scoliosis will always be a big part of my life. I will never stop praising god who put it in my heart to not just sit back and be quite and trust that a M.D at the end of a Doctors name makes him right at his opinion of treatment.

We had some good times in 2012, long summer days swimming,indoor water gun fights, the joy of kids birthdays, racing nights, family get together's, Just to many to name really.I could sit here for hours and type of stories of little memories that will never be forgotten.

Every year is never the same, use to be just about every year since 17,I was either living in a new state, or town. 2010 I fought for my life, and proudly won. 2011 I had my pride and joy a little over a year after my life battle. And now 2012, is the battle of chase's scoliosis. And I hope next year, I can say around this time of year that its just been a smooth year. But in 12 months, something is bond to happen that will change something a out look, a lost, a hard time. Life is never easy, But doesn't make it bad life at all. I am 25( had to correct my self there I first had 24,forgot I aged a year). I have been threw more then the average person my age, and I can't say that I would change anything in my past. It could of changed my path, and I may not of have the life I have now,4 soon to be step children and a son. I would like to think sometimes everything happens for a reason.

Ok enough blabbering I will bore ya guys :)

Here are some recent pictures I have took.

Chase was talking about something, and was really getting in to it with his hands. He is very animated talker.

     

My girls!

John's new happy napper his new pal.

Chase gave up after opening 2 presents and wanted to just play with them.

John and his new farm animal set,I tried to get pictures of everyone and help chase along and pay attach to all of them yelling "look look"

Before Cast(60 degrees),and in Cast xrays(23 degrees)

Look at them ribs, and is spine. That curve looks so tiny and GREAT compared to before.I just hope his number is great once the cast comes off. I am rooting for a 50 or even 45.

Oh small little update too. With the kids being home and chase getting more interaction he is now doing more once again. He will put objects in, he mumbled big bird, and plays peek-a-boo. Walking is still at a stand still in progress. If you don't let him crawl and make him try to walk to some one that is 3 ft away he will take 1-2 independent step. Every time he trys, my heart races and I hold my breath just waiting to be able to yell and cry that he is walking. Don't get me wrong I am proud of them little steps. But it has me worried for him being 17 months old and not walking yet, while physical therapy tells me its nothing to really worry about yet in the back of my mind I'm freaking. I just want the best for my baby. But I think he is like mommy and brobber, little bit nervous to try new things. 

I Got To Believe This Will Get Easier, When Really It Shouldn't Be This Hard.

Yesterday anxiety kicked in. Chase woke up with a over loaded diaper of pee. Which got the cast wet. This was my worst night mare,we made it 3 weeks and 4 days with out re-padding or having to blow dry the cast. I was on cloud 9 thinking this journey for chase and us was going to be easy.5 Yesterday hit harder then what I thought it would be just to have the cast get wet. I freaked, once again I felt like a horrible mother. While sitting there blow drying the cast for about a hour I found a sore. First I swore it was infected. What a bad mother I was my son got a infection under his cast and this was all my fault,I take care of him,I feel its my fault he has Progressive Infantile Scoliosis so in the end its my fault he has the cast. I know its not true but in moments I do blame myself a lot just because on my side of the family has scoliosis and I have a bad case of it. So after beating myself up over a accident of urine in the cast that I knew has happened to a lot of kids and they warn you, You will deal with poop up the back of the diaper and over load pee diapers. So after spending some time on the phone with Shiners hospital and sending pictures to them. We agreed it doesn't look infected and looks like a cast rub spot of where it was wet. So its like a diaper rash. It had me on edge all day. Thank god mike was home to re-pad and moleskin(medical tape).

I don't want to miss any lil new Chase does. I love everyday. But I sometimes wish its years from now and my son has a straight spine, and we have this casting in the past.Yes I do know, casting isn't a for sure thing. There is nothing in stone saying this cast will cure this crooked spine. But I pray everyday this gets in to a manageable degree that surgery isn't needed at any point of his life. I can tell you this, if I hear he needs surgery I wont just take one doctors opinion I will drive anywhere or fly anywhere to get the BEST OF THE BEST. And if that means begging Dr Min Metha her self(she is the great doctor to come up with EDF casting) to look at chase's case. I will.

In the end of the day, I can tell you. Seeing my child go threw this is the hardest thing I have ever did. I have had 4 surgeries in my life,battled crohn's disease for 9 years now and not even a year after just about losing my life to crohn's I had my son. This tops it all. I may not feel is physical pain. But my heart hurts for him,I have shed more tears over this imaginable.But if you see my out and about,I'll tell you I'm doing just fine.Because I got to be strong.    

I Feel My Self Shutting Down

I just wanna lock the door to the bedroom and just breath alone. No phone, No computer nothing but silence. But I think I would go mad. With everything going on with my baby just hear them question something else just minor to what his back is doing to him, just makes me want to scream " What Next?"...Why my son. Can't we just catch a break. I feel bad for feeling like this and kick my self in the butt for it because it could be worse. But it hurt me that my baby boy is going threw so much and not knowing a bit. All he know is he has to wear this cast. That make's it difficult sometimes to move around like he wants to but he finds new ways around it.

I thank god everyday we found out about EDF casting, that if we stuck with what our original orthopedic doctor chase, would be for sure be facing growth rods by the age of 5 or 6 which would be surgery after surgery for them and not to mention the risks and complications they hold.. Don't get me wrong EDF casting isn't a for sure going to save him from any surgery but give better chance's. And maybe a  CURE!

I been reading Crooked Love a book written by a mother that son was CURED by EDF treatments. Went from 63degree curve to a 1degree. I don't think it was the right time for me to be reading this book.I should of waited till all the emotional pain had subsided till reading this what for me is a very emotional well written book. With being 75percent in to the book I cant stop now.

I cant wait till one day when chase is old enough to understand what he went threw, and the hard choices we made. And did everything we could for him to have the best outcome for him all the sleepless nights I had...and all the research I did because I didnt feel like I was doing enough for my baby.

In the end I think this part of my life has changed me so much. Right now I still feel like we are in the dark with this first cast,But I know this is making a stronger mother and person.   

Our Family Needs Their Own TV Show.

While picking up Dar, She commented that our family should have its own show. With everything going on and never a boring moment. My first response to this was"yeah I would call it, Wheres the Prozac?" Because sometimes I question I should be on something. Things get crazy here and I just wanna yell TIME OUT. But the world around us and our bodies just wont take a TIME OUT. I tried that.

I was crazy enough to think going to Springfield to shop would be a great idea Saturday. With 2 more weeks till Christmas, everyone and their mothers thought it would be a great idea too I think. I wanted to once again ask my self am I crazy, I should really be on Prozac. I yelled out the window to the girl honking her horn behind me. Which then I had to explain to Cady and Dalton that traffic makes people crazy and it not right to go off on someone, while I still wanted to stick my head out the window and tell the girl behind if she thinks she can cut in between cars be my guest. Toys r us was crazy like Black Friday crazy just minus the lines. 14 pink elephants that pop out balls and not a one blue! On I was so temped to just get the pink. Chase is young enough he wont remember he had a cool awesome toy that just happened to be pink.  But mikes voice was in my head telling me "its pink,come on really" and making fun of me for getting it. So I got chase a manly toy instead, a toddler tool table.(from grandma and grandpa AZ.)

The Christmas tree is up and all the decorations. Even some presents under the tree. But one thing is missing. SNOW. It just don't feel like the holidays when it was just 60 degrees last weekend.

Chase is becoming one stinking child. The tops of his cast smells from drool. Only a month left in this cast and this momma cant wait to put chase in the bath tub. I wish we could frebeeze  his cast.

All I want for christmas is....My baby walking!

I am a blog lacker, I have been lacking on writing on here all year long. But really nothing to report.I could tell you all about my day like what people do on face book...." Well I woke up and ate breakfast..blah blah blah blah" But I don't want to bore my readers. 

All the kiddos are doing good. And really nothing exciting to shout out. We have a pretty good routine going. And nothing really eventful has happened.I guess that can be a good thing. We have not had a sick kiddo yet this season. I on the other hand has been hit by a chest and head cold which might have sent me in to a small flare up with my crohn's( I NEED remicade). 

Chase has been on a learning spree these passed 2 wks. He will blow kisses, clap, play patty cake(in his own little cute way), wave hi(when he wants too) and he is trying so hard to walk. He will take one or to independent step is you coach him along. Physical Therapy brought in a walker today for him to use to get use to walking with good posture.  He looks such like a little boy and not my baby boy when walking. Its bitter sweet to watch him grow. Because its just to fast and all the little new things his his doing make me so happy!But I keep looking for the pause button. 

And for his cast,we all are doing great with it. Diaper changes aren't that bad any more. And he has not had any accidents where we had to un-pad it and re pad it or blow dry it. He has 5wks and 5 days left in it I think.Then its close cuddles,and squishy hugs and lots of fun in the bath tub for a week. 

Here is a oldie but a goodie.This was 14 months ago. Its kinda hard to remember Chase this tiny. He was around 6-7 pounds then.

I Found This On YouTube,Had To Share.

Had to share this. I have been reading a lot for Dr Sturm. He is with Cincinnati Children's Hospital.

And for a lot of people that I have talked to wondering how they apply the cast he is another YouTube video.   

Now We Can Say, We Feel We Have Hope.

I know I am kinda slacking on blogging.Forgive me,I have 3 step kids here at home and my Lil curvy boy that keeps me busy with his calender. Yes I said his calender,looking at my appointment book its filled with his appointments and plus my own here and there appointments(I hope I still have a GI doctor I been putting him off). 

We made our big Chicago trip for Chase's casting.It was filled with fear and hope and excitement. Fear of the unknown, not knowing what chase would think of his cast and still having that feeling of are we doing the best thing possible but I know in my heart we are(there will be no surgery on my baby with out me putting up a fight). Hope of this treatment WILL work,its got too.  And excitement of we are finally after knowing of his Progressive scoliosis for 6 months we are getting it correctly treated. Chase did GREAT on casting day and just adjusting to having his cast on. Mommy is worried about it then baby is. Chase is doing everything that he was doing before cast. He even uses the cast to hold him self up on walls and the sofa. And with cloths on you would never know he had it on. I am worried about his neck, the way he has to crawl and cant bend his neck up and holds his head with the cast on. I am worried the torticallis will come back so I will show my concerns to his chiropractor and see what he says. 

Pre-op waiting. He was watching Thomas. 

Beans cheering Chase on, Chase loves to crawl up and down the hall way. It still hard to catch him.

 

Shut it Sister!

He Loves his sissy.

After coming home,(which I have lost Wednesday this I forget what we did that day) Thursday we had thanksgiving with mikes parents then it was off to black Friday shopping with Dar and Crystal. We had a pretty fun 7 hours of shopping. Mike stayed home with chase, and daddy got a taste of what mommy does all day of chasing him around and running me around like crazy and didn't wanna go to bed for daddy because he just wasn't mommy.



We had a fun and busy weekend. And I just feel like getting in the bathtub with a glass of wine. But we don't have any. So a nice hot bath will just have to do. :) 

I do have to give a shout out to all the casting mom's. Thank you guys so much for all the support and words of wisdom. I could do this with out you guys. I am a big worry wart and I would still be freaking out about everything. If it wasn't for you guys. Laura and Kelli, you guys have been AWESOME.

And here are some pictures to leave off with....

Look Closely Cady Got Her Ears Pierced!

Crazy baby up at 3am at the hotel. And no he didn't go back to bed.

Mike got me a wedding set this weekend too. I love me rings. The wedding band will be worn soon. For now I wear my engagement ring

.

A Weekend of Pictures!

We are one busy family. I feel like a dog chasing my tale sometime. One tip I have for any family is to write down everything. I have been living off of 2 calenders and with Chase's medical history and on going treatment if you would call it that is so in detail I have to write down anything and everything. If I ever lost my calendar book and Chase's medical note book I would be lost. 

The sheep just loved the attention. 

We found time this weekend to take some time away from the house. Chase has been sick with a cough so has mike and john. So Dar,Cady and I went to the harvest fest.






We fed some goats,petted sheep, went on a hay ride,and picked some pumpkins.

We enjoyed the day out but couldn't stop feeling like we was missing 3 other kids and Dad along. We now sometime this week got to do something with out pumpkins.





We having all the reports need to shriners. Now it should be this week that we Chase's casting date which should be with in the next week or 2. Praying we get Nov 4 as a casting date. I hear that a lot of casting family I have been talking to will be going that day also. I am still a emotional wreck. I feel my depression really setting in. And I feel depressed that I even feel this way. But I keep most of it hidden in.

Mommy and Babycakes

We had a fun filled picture weekend!

Just seems like yesterday,but really its been 10 years.

It went from warm summer to BAM its fall, its pretty cold out. Put away the summer cloths and got the nice warm comfy close out this weekend. The awful cold is going around the family house already too. YUCK.

With no news from Chicago Shriners yet on when Chase will be getting his first cast. And if not anytime in the near future. We got Cincinnati children's hospital and SLC Utah Shriners willing to take on chase's case and both agree on EDF casting. With every pasting month or even week,we are losing time. Did you know the human spine grows 50% of its growth in the first 2 years. So we got roughly 10 months of this growth spurt time to hit this curve hard! I don't want to waste this time.

Today marked 10 years since I had my surgery for my scoliosis. I have 2 Harrington rods going down my back. Having had this done, drives the pushy mommy in me. I am meaning I will do what ever it takes to make sure Chase is on the right path of treatment to make his chance's less of ever having to ever have these rods. What they didn't tell me and my parents when I had them placed that I would probably looking at atleast another spinal fusion. I found out 4 years ago that I'm already in need of this. My new surgeon told me wait till my lower back is hurting and that's our time to start planing the fusion.  Well its been hurting 2 years now. And even worse now after chase was born. I am fighting it and putting it off longer now. Can you imagine being down for 6-8 weeks not being able to carry you 1 year old around that is also in a cast. Yeah not possible at this time.

I know my blog has been taken over by scoliosis and chase's health. Well that's my life right now. I have no other life at the moment other then appointments, the house, kids and the stuff that needs to get done. I hope stuff gets to slow down around here. This mommy is just tired and wore out. I have gotten use to everything well the schedule of it. Mentally, I'm exhausted and overwhelmed still and question everything.  

We finally are on the road to straightening a ugly spine of our cute little boy.

With 503 miles behind us, I feel like we are now on the right road of getting chase's Progressive Infantile Scoliosis straightened out. We left mid morning for Chicago.With the only thing on my mind was knowing this probably will be the first of many trips to Chicago.

I hated to think what chase was thinking of everything going on. One long trip staying in a weird place where he had to sleep and it just wasn't like home. Then the driving in Chicago is SO crazy. I don't know how he could take a nap in the crazy driving. But he did enjoy the closet doors in the hotel full length mirrors he spent most of his time in the hotel room admiring the cute baby in the mirror.  

The whole time we was in Chicago waiting for 9a.m. Friday to come. I felt that feeling you have waiting in the doctors office waiting room when your waiting for test results. That unknown fear. The feeling I have had since I knew chase's best chance of beating this ugly spine condition would be getting him in to a doctor that does this type of casting. I still have this heavy feeling on my heart for chase. What he has to go threw. I know in the end he will be better but its going to be a long road. 

Friday 9am could of not came any slower. We got there and felt like for ever waiting for them to call "Chase".Once back there we didn't have much wait at all to see the nurse then a intern and finally the doctor. Everything the doctor said I have already read on the internet. The intern need to learn some more stuff before she should be aloud to see patients. She looked at me and shock her head like I took my son to a witch doctor when I told her my son has been seeing a chiropractor for his torticalis in his neck. For one she practically refused to think he ever had it in the beginning because he don't show it now. When she was telling Dr Hammerburg Chase's medical history she mentioned that he had torticalis and parents have been taking him to a chiropractor for it. And he looked at his neck and was stated "well he don't have it now". All that was said. But down to the main part of the appointment. Chase had x-rays done and good news is the curve is still at 60 degrees(Cobb angle) Bad news is its still at 60 degrees and hasn't went down. Dr. Hammerburg's feels casting will be better for chase.But the better results with casting is seen in lowing degrees. 60 degrees is a pretty high number. This curved developed in 4 months or less. We don't know how fast it grew ,we just know the time frames of a chest x-ray chase had to get done 4 month before we took him to the doctors because his ribs just started looking weird. A curve of 80-100 can be dangerous. Progressive Infantile Scoliosis is the leading orthopedic condition to be fetal for infants. No one hates likes hearing that. But its something that makes you even hug your kids a lil bit tighter.

Saturday Mike had to work,so it was just me plus the 5 kiddo's. Once they came over and had to pick one up out of town. Which it was a good car ride to clear my mind. All the kids in a good mood and singing alone with the radio. Just going do some country road(which the kids love because its one hilly little road). Which I know pretty good because I use to drive it home a lot when I lived 10 miles away from Litchfield. How simple life us to be then. I had my friends over for dinner and went to the drive in for the last time this year. Mike and Chase stand back from tiredness. It was good spending some one on one time with the kids. But I couldn't help but still think about my little baby boy that was sleeping in his crib. 

Even when not at a appointment for chase or in Chicago.For what he is going threw and this family with him is always on my heart.I see how people and kids look at him with just the brace on not knowing why he has it. It breaks my heart that my little boy isn't getting attention for his big blue eyes or that he should be a baby for Gerber advertisement like a lot of people says he should. But because he is different and people just don't know what progressive infantile scoliosis is. I know he will be OK threw this. Its just the long road, the ignorant people, the challenges, and the unknown that's on our hearts.     

So right now we are just playing the waiting game again. Dr Hammerburg's nurse will be calling sometime this week to be telling us when Chase's first casting day is.

Blogger's Love To Read Other Blogs!

I have been doing a lot of reading blogs lately. Some I just have to share..I have been reading one amazing woman's blog everyday now since I did some research of my own for my son's condition Girl To Mom's blog is one of the greatest blogs I personally came a crossed. Also a great blog, I think that help's explain a child going threw EDF casting is  The Infantile Scoliosis Chronicles. I have been trying to read every I can about Chase's Scoliosis. The more I know, the more I can help chase in the decisions I may have to make in his treatment.

I swear chase gets in these growth spurts of new words and actions. All of sudden out of no where its like BANG chase changes his bed time, is talking more, and trying to walk. He has been arguing with me all day. Throwing his hands around yelling and have this look on his face of seriousness.And like 4 new words in 3 days. He will drop a toy and say bye bye to it. So freaking cute how he does it. Now I am just blabbering away about little things that babies normally do. But when its your child, its the cutest thing ever and you wanna get your camera but when them moments come you do have it in your hand!

We are having a problem with little runner's around here.All the kids wanna run in the house,and now one of them is getting in trouble in school for running in the school. So I suggested to mike that we have the kids write "I will not run in the hall way" demending on which child it is at our home and their age will depend on how many times we feel is fair for their age. And if we get a note from school. After going over school rules of no running and way sentience will be punishment.

How do you deal with punishment for certain things?

A Productive Weekend With The Conlee Kids!

So we had a productive weekend at The Conlee House. Got everything straightened out to be messed up this week.  This week is just like any other week filled with Chiropractor,PT, Looking for a good hotel in Chicago,and getting ready for next week. On top of all the stay at home mommy duty's.This week didn't start off good. Me and Chase are sick! First colds of the season. Good ol mucus draining in the back of the throat waking up with eyes mated,and top it all off a cough that seems to take away energy from me.

Chase has a new thing he loves to do. He know how to yell for "brober"=brother. The past 2 nights he had to play in johns room with him before bed.

My Little boy's

Chase took in FIRST step Saturday night  while playing with John. I think you could of heard me a block away. Yelling,OMG he tried to walk. Momma was proud. But just look at them two, I swear chase is a little John Jr. We are all so use to seeing the brace on Chase and Chase is so use to it. I think we all forget he has it on.

"Conlee Angels"

Dar figured on how to use my phone and had a little photo-shoot of her own a couple of times this weekend. Cracks me up to see the pictures on my phone. She even got smart and learned how to post them on my Facebook.  















We had a pretty good weekend,I must say. I had all 5 kids by myself. I really cant say it was horrible at all. We had some issues but your always going to have issues with a pre-teen?How do you punish your pre-teen for talking about,hiding messes in rooms(I use to do this my self all my childhood I'll admit I was a pack rat) and beating on siblings? If you took something away,how long was they grounded from it?

One Step Closer,But Still No Sight Of The End Yet.

We got the call we have been waiting for every minute since Monday for. Shriners Hospital for Children's called. Chase has gotten a appointment with a doctor that can give us more hope and help to give him more of a chance of not having to go in for surgery. There will always be a chance till skeletal matured age. But EDF casting helps CURE Progressive Infantile Scoliosis. We all just gotta BELIEVE this will work and CURE.

I have truly missed the older kiddo's around the house the past 2 days. I feel lost. Its really busy when having 4 kids and just me here while mikes in the fields. But I have to say,they keep me positive. And I love hearing school story's of what happened. Or the art work they did. Just the little bragging for how good they did. It really makes me look at the little things in life and smile. I always have praised them for any work they have done. And if it wasn't a good grade,we talk about what they could of did to get it right. We fix the mistake at home to help them learn and I always tell them "we know our mistakes now and that's all we can do now and try our best once again next time huh?". John brought a picture home of his family he had to draw. He had Dad, Mom, Cady, Brooke, and himself. He told me he was kinda ashamed he did put me and chase down. I was kinda hurting at first and thought maybe he wasn't accepting of the "new family members". But I stepped back and thought, its still probably hard for him to come to terms with everything. I know he loves us. And he has never showed any real signs of rebelling towards,Me or Chase. He will flat out tell anyone he likes not being the littlest brother anymore. Or will tell me he don't want mommy mad that he loves me because I do everything that a mommy should do for him. But just that picture showed that a child still after 3 years wishes that mommy and daddy was still together. And that subject is a very touchy subject to try to talk about.

The weather is getting to my favorite time. Fall is like the best season. I love colorful tree's. And now that chase can enjoy the park,its a great time to go to parks and play. I think that's what we might do tomorrow. Get the stroller out and all of us will go to the park close to home.



 

Short...but to the point. Of nothing.

Had a up lifting day. Not a spare minute to waste but up beat day. Chase really surprised me today and was himself today. Wasn't fussy at all I was expecting melt downs and crying all day. He would get a little mad because he had to figure out how to do some things again.

We got a pretty good routine going around here. And kids know what to expect. We work pretty good has a family. Mike worked a little bit late which kept my day going a little late to being I had some shopping that needed done once he got home.

I am trying to figure out something to do with a one year old that would be fun for him. Mike will be in the fields this weekend.And the older kiddos will be at there moms. So me and chase will be having some mommy and son time. He needs a little highlight of his week just not appointments. I would hate to see what a depressed one year old would be. :)

Lost in thought

My body is running on over drive and at times I wonder if I am having a heart attack. I got everything ready to send out to the doctors.

Chase got his brace fitted today. We are keeping him in it for the hope of it at least just slowing down his curve from getting any worse. Chase is sound asleep in his brace. Looking down at him in it, I just start to cry. My baby boy is going threw so much that I just wish I could take away. I wanna know what's going threw his little mind.

I am really lost in words trying to type tonight. With everything running threw my mind. I feel like I am just going to fall apart. If I had a job,I would be having to quit at this moment. Once again with 7 appointments with week with chase and one of my own. Mike has been right along side of me doing what ever he can when he isn't in the fields. I am so glade that mike has also seen what EDF casting can do and is on borad for wanting it for chase. We will not let anything stop us from getting our kids the best medical care they need. I got to thank all my family and friends for being such great support too. They have offered help if they can. We couldn't be doing this alone. But I still at this point feel like I could be doing more for my lil boy to be heard.  

I will travel to the end of the world for him.

I am feeling a little better day. I am stressing myself to a headache. I have emailed so many people and doctors today.We are willing to traveling anywhere,I want to get a opinion on getting chase EDF casted. The results and info I have read is amazing. Bracing this young isn't really seen. And not any children's  hospital can do the type of casting we are looking at.

We really just had a at home type of days. Kids have been playing and Chase has been playing right along with him. I love to sit back and just watch it. 

Mikes been playing around with his race car getting everything worked out to get it to be running next year. Everything is planned to be tuned up this winter. And I gotta admit I am missing racing already. 

And everytime I have a free moment I am on here searching and searching. I cant stop thinking there is more that I can be doing for my baby boy. We need answers and the best treatment. And we don't have time spare. I keep wanting to wake up and this all just be a nightmare. Its consuming my life and my mind. I just keep thinking what if we don't do the right thing for our baby boy.

Google can be good and bad.

What a exhausting weekend. And I'm rethinking everything,I think its time for a second opinion and fast on Chase's back. After getting the brace. Which don't fit right. Poor baby can't do anything. It's to long. You try and sit him up and it digs in to his legs. I googled progressive infertile scoliosis and the information is over whelming I found a simular case to Chase's. Bex's story has shined some light and gave some hope.  www.girltomom.com , its hard to read that the condition that your child has can kill them unless treated correctly. You have to fight strong against it. A lot of researching and reading a lot of doctors articles I'm not convested anymore that bracing is the right way. A lot of pediatric orthopaedic believe casting can cure a child of the scoliosis. I feel I can't second guess my gut feeling. And can't just believe one doctor. Cady went with Chase and I to Springfield. It rained off and on the whole time. She is a great big sister. She likes carrying around her baby brother. It was hard for her to hold him in his brace. We invested in a new car seat while we was by a babies r us. I wanted a RF seat that can switch to front facing. We picked a good time to buy a new car seat. They had a trade in deal so we got 25% off our new seat. So I had to install the seat all by my self. Ended up getting rained on in the process. I hated to but I chase riding facing forward. I feel he is safest riding rear facing till 2 or even old till he hits the max wieght for it. I think it might be bed time. I had to get some shots of anti biotics at the er a while ago and I think they might be making me very tired I usually can't sleep till late. I can literally say thats a pain in the butt! . f

A whole lot of....NOTHING!

Busy day,but a nothing really got accomplished today. Was greeted once again to a exploded diaper.I love pampers best diaper I came across but Chase needs a overnight diaper I guess


I am got a phone call saying chase's brace wouldn't be ready till tommorw. And my appointment that was at 10am got rescheduled too. What is up with everyone this week not being able to keep my calendar set times and date.

Chase has been abnormally cranky for 3 days now. And just acting different from normal
So I just have a feeling tomorrow won't be a good day with him. I am going to feel so bad for making him wear the brace if he crys the whole time.

"Kid you got the prettiest eyes,But one ugly spine."

Two different approaches to one ugly spine

 I am so in thought of what the next week will be like with Chase getting the back brace. We seen the Chiropractor today and the Physical Therapist.Dr Morris(Chiropractor) had some good points of what we will deal with of the long term bracing and it makes me question the bracing treatment. The brace is going to cause muscle weakness in his torso. And I read that kidney problems are seen with the bracing too. I adore Dr Morris,He is wonderful Chiropractor,and now going on 2-3 weeks of chase seeing him 3x's a week.I trust him and his opinions, and I have a hope that he could fix the scoliosis now that he see's how much progress chase is looking. But also I respect Chase's Orthopedic doctor, because he has seen and treat scoliosis daily and has bracing,casting,and different surgical approach to scoliosis.But the thought of chase being in a brace for so long day in and day out. I just hope this is the right answer as a parent to make. To have to make decisions on someones health then yours is harder then making the choices for your own health. 

Boston Brace

Chase's brace is one of many types of bracing. And the most common one in the United States. The brace will go higher on the left to push up on his shoulder to counter act his right shoulder being higher right now due to the curve that pushes his right shoulder up.Padding in the cast will push his right rib cage in wards too. Its like straightening a macaroni noodle, you would push on the curve while pushing on the ends to make it straight. But there is difficulty's that come with the brace that doctors don't like to mention. I have read some movement restrictions are expected. And even eating difficulty's from the pressure on the abdomen is uncomfortable when digesting. You can have bone deformities from bracing the pressure on the hips and ribs have left bones dis-formed in cases. 

 

 

  

Everything just seemed to not wanna go right today!:)

Calm day around the house...that's all I hope for every day when I wake up. Does it ever happen? Rarely. I was greeted by a exploded diaper. Chase slept from 7pm to 8am. Pampers 12 hour protections can't hold up to my sons bladder at night. So I had a crib,chase,livingroom floor,and sleeper to clean first thing this morning and chase laughed the whole time in the tub. Like just telling me he thought it was a funny way to start the day.

I had one of them days where I just wanted to ask does someone find this funny because I don't. My van decide to just spray anti freeze out and start to over heat. And that won't be fixed till this weekend if it rains like its supost too. So I came home and cooked steaks for mike. Yeah,kinda forgot they were on while feeding chase. And well he didn't have to question if they was done or not, becaese they was well well done! After putting Chase to bed, I did the job everyone hates....clean the gutters. The first thing people would do is get your ladder out. Not I, our gutters are like 3 feet off the ground how great right? Gotta love this house! Earth homes are tornadoes safe, easy to cool. And if we lose power we have a generator that runs the whole house. So 10 mins later and poof the gutters are clean. Kids brought me a brownie home from youth group and that was a great pick me up too highlight the day of everything well getting overloaded or over done.

Oh the new trend around the house is to brok at everything. Yes, chase learned a new thing. A chicken goes brok brok bbbbrok. Well now that's the only vocab he wants to use. Even the dog gives him this weird look when chase broks at him.

"What your 12 and dont have a cell phone?"

Had to do some rearranging in my calender this week. Still a busy week,But thank god its half way over right? Friday now is my busy day. Thank god for smart phones. I keep my life on that thing. I keep doctor notes,my agenda, pictures,I email off it and lets not forget the important Facebook. What would we do with out technology? How in the world was my generation able to live with only analog phones?And NO Facebook. I remember getting a Myspace at the age of 16 or 17. But now kids these days have Facebook at 11. Not in this house! We a aware of the dangers. Its not a "trust issue"of I don't trust our kids with one. Its that they don't know any better. They still have time to mature. And if they have something to share with a friend. They can do it in person at school and not be posting their information on the internet for EVERYONE to see. But I remember when I was in middle school their was no pressure to have a cell phone. Now these days a kid comes across another kid in middle school with out a cell phone and its like "dude your telling me your 12 years old and don't have a cell phone yet, I had mine since I was like 10 yrs old." Rather then going out side playing after school its Txting, or facebooking, or getting on youtube after homework is done. I feel like it was forever ago since I was a kid but in reality it only been 10 years ago and I was 14 and in 8th grade.Cant imagine what we will have to deal with when Chase is 12-14 years old and what new technology will be out? Or will it just be" Your 13 years old and you don't have your own I-pad yet? I have had mine since 10 years old and this is my 2nd one" . I really just don't wanna know yet!

Yesterday was the basic day for us now. Chase had Chiropractor appt. in the a.m. I think he is really enjoying them now. Some of the stuff they do he will have this " oh that's the spot" face on. And never cries because what they are doing. And the Doctor knows how to make him cry. He just has to lay him on his back on the table and Chase hates that,sit him up and he stops. I am thinking its something to do with is scoliosis because chase never just choices to lay on his back. It seemed like 3PM was just a hour after 11a.m yesterday. Time flow, but the 2 and half hours of homework time just doesn't seem to fly by. We always have a book to read, 2-3 kids with math,2 kids with spelling homework,some type of project, some type of writing homework with Brooke,and either science or soc studies. And I go over everything. So yeah, you can add teacher to the list of things I do.

Question....

What age did your kid or kids have access to facebook and do you as a parent get on their facebook?

Tuesday already? Where did Monday go?

One busy day today. Well it got cut short a bit. DT(Developmental Therapy) cancelled already today. Kinda good news on us, chase can get a nap in at least today.We been seeing DT for a while to help him look more to the right to get him to use his neck and with the curve in his back he learned to sit up and use his left hand has support for balance. Now that he don't he still kinda over uses his right hand and ignores his left at times. While clapping toys together he will have his left hand still and his right banging. I know all these appointments in the end will be worth it and chase will be up to his level he should. When we tested him for all the therapy's he test just right have the minimum and by the scores it was at the point where he wouldn't need them but with his galactocismia it automatically qualified him for early intervention. We didn't know about the scoliosis at this point. Just his neck how it leaned and they diagnosed him with the toritacalis or what me and mike just thought was the chase ghetto lean. Later on when they was testing him to see what services we would need I pointed out to a person how his ribs looked odd and she agreed and told him to call his doctor ASAP and request a xray.Two days later we was in for a xray for scoliosis. And its been a full summer of appts and waiting for results and praying that we are doing the right treatment for him.

I couldn't wait last night for the kids to come home and I could ask how school went. Me and John have been working on spelling words and that little smart boy got a A on his first ever spelling test and Story test. I think I was more excited then he was. All he could say was that the teacher put someones paper in his folder and it wasn't his.He was so concerned and confused on how a teacher could do that.

Oh forgot to mention yesterday, Mike got a new toy. He traded his pure stock/bomber for a A-Mod. Which he will turn in to a B-Mod. We already had his brother come over to drool over it. Boys and their toys. When we got the bomber car we had 3 guys stop by in like one hour to drool and ask where he is running and so on. Its like a new baby every body has to come and see and "oooo" and "awwww" over it.
     

Got To Believe Life Will Slow Down At Some Point

I have failed once again at keeping up with blogging. When I do have time to blog. I like to just enjoy the piece and quite for a bit or I'm cuddled up to mike on the sofa watching a show before bed. 

But I keep thinking about blogging. And I just feel like its a calling for me.Now that school started for the older kiddo's my scheduled got even busier. The first week they was back in school, chase started seeing the chiropractor 3x's and physical therapy once a week and every other week I think he see's a occupational therapy. The Chiropractor is doing a amazing job with helping Chase with his neck. Chase was born with tordicalis(sorry that could be spelled wrong) but it means his head was probably positioned awkwardly in utro or it could be from the traumatic birth he had but his neck is use to be leaned over to right and chin to the left.So we are working with his neck to get him to hold it straight. His scoliosis will be treated with a brace for now has long as the curve does not progress and it starts to decrease. We pick up is cool blue camo brace on Friday. I am so nervous on how he reacts to having to wear the brace. I have did my share of research on bracing and surgery and every possible options. And has long as chase doesn't end up with Harrington Rods that I have I will feel like we beat the scoliosis. Because to this day I still have back problems and looking at another surgery in the near future. What doctors don't tell you about having 2 rods in your back is the maintenance of them. The chances of having to have more spinal fusing and if something goes wrong with the rods in your lifetime of having them. So with all the extra activity's going on right now me and chase have anywhere between 4 appts a week and like this week we have 7 appts this week. Between the appointments,keeping the house running, and homework with the kids every night. It take a toll on me and chase's sanity I feel. All chase wants to do with play and move around and now going everywhere like we have to and I don't blame chase for his fussy out breaks. Mommy wants some fussy outbreak time of herself!

I am so proud of how all the kids adjusted to everything that is going on. We have a pretty good routine going on with after school. With 3 kids now having homework I am usually doing homework with them for 2-3 hours. Brooke is still struggling with math this year. I don't know if its just if she isn't getting it or if its switching from saxton math to this different book. But its to the point where we both wanna pull our hair out because some of the questions or problems are simple but so hard for her where I get the point of thought "Is she just trying to get me to do her homework?"

I am still battling a long battle with my long on going health problems at the moment. Which keep interfering with my crohn's treatment. I need to find a doctor that understand my concern. Being a carrier of MRSA isn't a healthy thing and getting remicade and having this isnt a good thing too. And I cant get my port replace back in because I cant have surgery while being a MRSA carrier. So in the end I am in a lose lose situation.

   

"Let's straighten it out" scoliosis moto

It's 2:35 and once again I can't sleep. Didn't feel like firing up the computer,so I downloaded a app on my new phone to blog. Will have to say. I love Android over iPhones anyday.

Summer vacation started for the kiddos this week. And I can tell you now its going to be a difficalt one. With all my appts and chases. I feel like something has changed for me and the kids, they have been pretty good for me. I think they are growing to respect me. I never thought it would happen. Brooke is such a great big sister. She has matured so much. And john has grown out of the cry over anything stage. And Cady has lost the additute.

Chase has been recently diagnosed with infantile scoliosis. Which breaks my heart. We are waiting on word of where he is going for a orthopedic surgeon. I hope it only a back brace need for treatment. I really feel like good is testing us.

Mike started racing and got his car to work right finally. Brian his gf and her daughter and I and chase all went down to see mike race tonight. Chase and I missed the good part I hear. Mike ran better in his final race then the first. :(  But I am happy for him and excited for the next time we go.

I have been sick with my crohns. Going on week 6 without remicade. I am getting so weak I can barely carry chase in his car seat. I can lose 3 pounds in 2 days easily atm. I don't know if its the anxiety or Crohn that is causing the insomnia I have been having the past like 2 weeks.

But all is well, a lot of stress at the moment but we are doing our best and taking steps in the right way to try to solve all our problems or to make them at least better.

NO joke I BLOGGED!

I am going to attempt once again. To keep this blog going. Kinda failed on my goal a blog a day! Oops. Well life happens.

 Chase is going to be 9 months this week. Let me tell you, if you look at him now and didn't know he started off at 5 pounds you would never believe me.He is such a handsome lil guy. He is doing great and has 2 teeth and the 3rd one on its way in.

John, Cady and Brooke, are doing great too. I swear they grow taller every week.  They been testing our limits a lot. And it don't help that Brooke is going through the pre teen mood swings,talk back, eye rolling stage. They only have 3 weeks left till good ol summer vacation. I remember being a kid and having the days counted down. But after like 2 weeks of it. Its boring!

Mike is looking in to getting back in to his old hobby of racing. I am in the the shock of oh my lord if you wreck and get hurt or die or break your spine. (The list of my worry's can go on,I'll just stop there). I am not a person that thrill seeks. I don't have to go at high speeds to get a rush. But what can I say. Looks fun but honestly,its not my cup of tea. And I am not going to stop him. (If I have a heart attack before the age of 30,we know why now). Everyone needs their hobbies and needs their time to have fun. (My fun is not to go around and circle really fast and thrown around in a car)I get car sick just watching the race. I cant even watch them on you tube with out wanting to vomit(All and can think is "going around and around and around"I gotta stop thinking about it, lunch will come up)

And for me, nothing really new. 2 weeks late on remicade for my crohn's disease.Due to a infection. But hoping to get it all cleared up soon and get Remicade ASAP. I am thinking about taking a class or 2 during the summer. Just to do something and get out of the house for a bit. These 4 walls kinda get boring from time to time.