Wednesday, January 25, 2012

Of Course We Can Handle It!!!!

So you would be surprised on how many people have asked me when they find out we are pregnant "Are you afraid your next child will have Cerebral Palsy?  It's genetic right?"  Oy....okay here we go.  Cerebral Palsy is something that happens to you like a car accident not something you are born with like Down Syndrome.  It is lack of oxygen to the brain at some point.  Breckens happened in utero.  No I am not worried this child will have CP.  Also Cerebral Palsy is a brain issue not a spine issue.  A lot of people have been asking me what his spine issue is and it has nothing to do with his spine.  It is a brain issue that causes a muscle issue.  Anyways just wanted to clear that up.  Not genetic and not worried.  Another question we have had is "Well aren't you really busy with Brecken to have another one?"  Seriously?  You want me to limit how many kids we decide to have because one of our children has CP?  I did not know we were supposed to consider him such a burden that we were to stop having more children.  Two things....one yes Brecken has a lot of therapy and he needs more of our attention....two.....Doug and I are one hell of a team and we are amazing parents (not to toot our own horns but having amazing kids proving we are awesome) so we are definitely strong enough not only as husband and wife but most definitely as a family to take on whatever God blesses us with.  Just because YOU may not be able to handle it does not mean WE cannot handle it.  We are strong and even stronger since we had Brecken...him being the strongest of all of us!!  I say a picture the other day of a woman with multiple children and she was pregnant and another woman asked her how she divided her love and attention among all her kids and she said she didn't...she multiplied it.  So keep in mind when you look at my family that I WANTED all of this.  I know how babies are made and I know how to prevent it.  Do not treat me like an idiot.  I have NEVER in my life gone to bed thinking "I wish we would have stopped" or "this is not what I wanted"....I have ALWAYS gone to bed thinking "the worst day with those little ones are better then the best day I ever had without them".  Yes they drive me nuts and TRUST ME I will be getting back at them when they hit teenage years and start dating ;)  but I love this life we have and I LOVE the idea of having a BIG family and I know a lot of you are with me and doing the same thing and for those of you who think it is too much and too much to handle...it is....for you.  Not us:)

Tuesday, January 24, 2012

Another Levy on the Way!!

Yep.  We are 5 weeks pregnant today and by we I am going to say me since I am going to be not only doing most of the work but all of it.  We went in yesterday and they did an ultrasound and we saw a little dot.  Lol.  Obviously too soon to see anything.  We started trying this month and ta-da!  Did not take long.  I always wanted a September baby so I am excited.  So far I feel great.  I do not feel pregnant at all.  I am PRAYING it stays this way.  I am a little more tired then normal but coffee is helping and yes yes no caffeine during pregnancy....blah blah blah.  Anyways I am hoping we have a little boy.  So is Doug.  We will find out around my birthday.  Anyways YAY!  We are excited and we love our kids so this is just another fun adventure!!  Luckily since we moved I have not been as stressed out and the kids seem to like me more...lol...I like them more too.  Life has been way easier when daddy is around to help out.  Well I am really excited and I will keep everybody updated:)

Tuesday, January 17, 2012

Murder is Illegal

Okay.  I love California so far.  It is warm here.  I love our house!  I love our neighborhood.  Hell I even love San Pedro in all it's busyness.  It has been awesome....except for the unpacking.  The movers moved everything in the house and I was so excited to finally get all our stuff.  Then things started falling apart.  They unwrapped our book cases and they were in pieces.  This made me mad.  Then Breckens dresser had a HUGE hole in the top of it.  Really?  Then they brought in the desk....or what was left of it.  The kids toy box is broken.  Kitchen table...broken.  They did not even break our bedroom stuff because half of it never made it here.  So that was just the furniture.  Now I start unpacking.  Glasses....shattered.  Toys....broken.  I could not believe how much stuff I was pulling out broken!  Then I get into my holiday decorations box.  Shattered.  They did not even pack the stuff.  They threw it in a box.  Next I open my Crystal box....OH I LOST IT!!!  COMPLETELY shattered!!!  They did not even wrap half the stuff!!  HOW DO YOU NOT WRAP CRYSTAL!?!?!?!  I stormed out of the garage and grabbed the phone and called the packing people.  The first lady seemed scared of me (imagine that) and called her manager.  Then she got on and acted like it was the movers.  I told her no it was the horrible packers.  She asked me to give her an example.  I told her box number 485 had my crystal in it and there was NO wrapping on any of my glasses and they stuck a metal vase in the middle of all of it!!  HOW IS THAT THE MOVERS FAULT?!?!?!  I was not happy.  Anyways she apologized and we are filing major claims on this one.  I am so mad right now I could spit fire.  AAAAHHHHHHHHH!!!!!!!!!

Saturday, January 7, 2012

When do I worry and get my child evaluated?

Okay so I have had many people over the past couple months get ahold of me to ask me questions on when I decided to get Brecken evaluated and how I knew.  Many of these moms have kids around the same age as Bailey and this is prime time for them to be learning new things like walking and talking.  So here is some signs that first tipped me off to Brecken.

  • When he was 8 months old he still could not sit up unsupported.  I knew this was a little weird since Taylor was up on her butt at 6 months....although he was heavier then she was so I thought maybe that is what is was and that could be what some babies do!
  • He did not start rolling until his 1st birthday.  By this age kids should be crawling if not standing up.  Again some babies may not walk this early (my girls did not walk until around 14 months).  
  • The drooling.  I know babies drool when they are teething!  A LOT!!  Taylor would soak her shirts within a couple hours.  Brecken however was soaking 4 and 5 shirts a day and this was going on for months!!  He still has bad days where he is really tired and drools a lot.  
  • His talking.  He was not saying dada or mama....nothing.  I heard boys talk later then girls but this one really threw me.  He was not babbling.  He was not mumbling.  He would laugh and barely a sound would come out.
  • When Brecken did start walking I noticed he fell....a lot.  Not normal falling but all the time.  He never put his hands out to stop himself from falling and I also noticed he would use a wall to stop himself.  I know this sounds odd but kind of like a skier that falls to stop themselves (that is what I did...lol)
So one thing after another started stacking up this is when we knew something was off.  We also had an older child to kind of measure him too which helped.  So many moms have talked to me being worried about their kids and a lot of them it is their first child.  Keep in mind all kids develop at different rates.  I have 3 to prove that theory.  They all started doing everything at different times.  The biggest thing I can say is keep an eye on them and make sure they are progressing.  The one thing that kept me pushing to get Brecken checked (because that little voice in my head kept saying "He is fine.  He is a boy and just a little slow.  He will get there.  There is nothing wrong) was the bigger voice in my heart telling me something was off.  I knew I was fighting it because I did not want to admit something could be wrong.  I even thought about cancelling a couple appointments thinking it was no big deal and he will push through it.  IF YOUR GUT TELLS YOU THERE IS SOMETHING OFF GET HELP!!!  I keep thinking of how much harder things would be for Brecken if I did not get him into the therapies he needed.  The first time I went into his doctor I said "I know you have moms who come in and think something is wrong all the time.  I get that most cases end up being a paranoid parent.  I KNOW something is not right.  I am with him 24/7 and every time I try to tell myself he is fine I get this pit in my stomach telling me "You know your trying to fool yourself".  I am not the type of mom to bring my child in for unnecessary testing just because I am bored.  Please listen.  Please help."  Thankfully his doctor agreed and helped us but I went in knowing if I had to fight for him I would.  You are their only voice.  I literally am still my sons voice.  I had to go in knowing I was his mom and I did not care what doctors thought of me or if I had to get mean because I would if I had to for my son.  So if you are in this position and you really may think something is wrong the WORST thing you could do is pretend is okay.  Make an appointment and go in with your concerns and make sure you are educated on what you are telling your docs.  I documented a lot.  Things he was not doing.  Things that were weird to me.    Take notes.  Get educated on what the child should be doing at this age cognitively and motor skills wise.  Make sure your doctor hears you and listens.  I called and told them I needed extra time with the doctor.  I still explain that I will need a full 45 minutes at least with the doctors when we take Brecken in.  I want to make sure they hear me.  Anyways if you have any other questions let me know!!

Thursday, January 5, 2012

Brecken Cameron Levy


3 years ago today at 08:18 I gave birth to an 8 lbs. 3 oz baby boy via c-section. We named him Brecken Cameron. My dad had come up with Brecken and we loved it and Cameron is my brothers and grandpas middle name.Having had Brecken in our lives for 3 years I have learned a lot. That boy has taught me to take joy in every accomplishment we have...even the small ones that other parents and myself took for granted on our children.


He is an amazing son and I feel so incredibly blessed God picked me to be his mom.
Brecken you are such an amazing little guy and the things you have overcome amaze me on how strong and determined a little dude can be. You are the second guy who has been able to make me fall head over heels in love:) I love being your mama. You have made our lives so much better and more enjoyable. I LOVE YOU SO MUCH and I hope you have a very happy birthday today!! I cannot believe you are 3!!!! I LOVE YOU!!!

Tuesday, January 3, 2012

2011

The run down on 2011....if I can even remember any of it!

January!!

What is not to love about January! Beginning of the year! All is new. Brecken turned 2 this last January:) This is when our doctors started getting serious in knowing something was up with Brecken. We started off the year with a ton of different doctors. First here was the ENT since they had thought his drooling could be a sign that there was blockage. Come to find out all looks good. No blockage.

February:)

LOVE!! First Valentines Day Doug has been in the same country in years!! Still nothing on Brecken. They have given him meds to see if it helps clear him up however his doctor thinks there is more so she refers us to a developmental specialist. Brecken had an amazing doctor who really listened and knew we needed more help. I really loved her:) I also have my surgery done:) I feel great and I am happy I can concentrate on what Brecken needs from me instead of my health issues.

March

Brecken has been diagnosed with Hypotonia which gets him into physical therapy. Now we go to find out what is causing his Hypotonia. His Occupational Therapist tells us he has abnormal range of motion, muscle strength and tone, posture, gait and balance. He gets AFOs (leg braces) that help stabilize him and he LOVES them!! They really help. After the appointment he gets a really bad fever and I cannot get it to come down so I take him in and his doctor gets a blood test and keeps him in the clinic where she can keep an eye on him. She would send him to the hospital but being that she knows so much about his case anyways she would really rather keep him close until she figures some stuff out. Did I mention I really like his doctor? She also wants a urine sample but all comes back clean. She gives him a shot and keeps him there a little longer....then we can go home.

April

We take Brecken in to get his hearing tested. He has conductive hearing loss but it clears up due to a cold. We meet Dr. Cooper (developmental specialist) and she orders tests. She agrees something is wrong. She comments that it may be a degenerative muscle disorder and orders an EKG, EEG, MRI and xrays. This scares us because this will mess with Breckens life expectancy and he would have a weak heart. This scares me.....a lot. I cannot lose my son.

May

May is a birthday month in our family. Taylor turned 5 on the 15th, I turned....20 something on the 17th and my mom turned like 30 on the 19th. We like May. We get Brecken in for his last test which is the MRI. They have to put him to sleep to do it and I sit and hold his hand while the machine takes an hour to take different pictures of his brain. Then I hold him until he wakes up a couple hours later. This test I am not worried about. I am more worried about the xrays and EEG. Nothing is wrong with his brain....right? Breckens doctor calls and she wants us to come in to discuss the results. May 16th we go in to sit and discuss what we fear will be a parents worse nightmare. Dr. Cooper tells us the EEG and EKG look great! HUGE sigh of relief!! His xrays look good however she informs us he will have to have hip xrays once a year from now on. We look at her confused and she tells us the MRI came back with something. WHAT?!?! That was the one thing I was sure would be clean. She starts in telling us that there is a severe thinning of the anterior portion of Breckens Corpus Callosum. Yeah....what? He has bilateral frontal lobe abnormalities due to an old hemorrhagic phenomenon that is calcified which means it happened in my second trimester of being pregnant with him. Okay doc...english? I had a blood clot that went through my placenta and ruptured in Breckens brain that caused his brain to stop growing in that area. This is called Peri-ventricular Leukimalacia. This is in the part of the brain that works on his muscle tone and for him to cross information from one side of the brain to the other. This is what has caused our son to be diagnosed with Diplegic Cerebral Palsy. Diplegic Cerebral Palsy. Diplegic Cerebral Palsy. I repeat these words in my head over and over and over. I have a son who has been diagnosed with Diplegic Cerebral Palsy. I did not see this one coming. He will need Physical Therapy, Occupational Therapy and Speech Therapy. I am doing really well up to this point. I keep thinking in my head I have to wait to get out of here before I cry. My kids need to know we are okay......then she hands me a form to get a handicap tag for our cars. This is where I have to bite my cheek to keep from losing it. She explains he is not helpless....he just needs help to get up to where he should be. He is strong and he can do this. He just needs us to get him the help he needs....to push him. He needs strong parents. I get all the way home and through the day without crying. I put my kids to bed, kiss them and pray with them and tell them how much I love them. I kiss Brecken extra in knowing he will only get stronger instead of weaker and thank God for letting us keep him and that he will be okay. I go in my room, close the door and completely fall apart. I remember what Dr. Cooper told me about the fact that with that blood clot, I should have lost him. In knowing I lost our second baby and now had this happen she tells me I need to go in and get tested. I also had bleeding with Bailey so she really would like me to get this done. I just cannot stop thanking God for not taking him away from me but I cannot help but have a feeling that this was all my fault and I did something wrong. My body did this to his and he has to deal with it. The next day is my birthday....not how I thought my birthday would go this year but I have my family....I have my son. We all go to Disneyworld to help get our family back on track of being a family and not so much on what is going on with Brecken. We obviously have a blast:)

June

Brecken has already been in therapies for his Hypotonia so we have a pretty good head start on all of this! I love his therapists and I am staying up day and night to learn sign language so this poor boy can tell me what is going on! He picks it up fast and just like when he got his leg braces the signing makes him light up in knowing he can finally communicate! Doug gets slotted to go to a school for his new MOS and we are getting ready to move to Colorado.

July

We say goodbye to all of our friends and start our very long drive with 3 kids and 2 dogs to Denver. We make it in 3 days:) I get Brecken all set up in his therapies and register Taylor for soccer and school. Now to relax until Doug leaves. We did get the kids in some swim lessons to pass the time and they loved it!! We also have our 10 year high school reunion! Very fun:)

August

Doug is in AZ and thankfully school has started for Taylor. She also has started her soccer and life is going well. My little Bailey bug turns the big 1!! Cannot believe she is already 1!

September

Doug comes back for a long weekend. We are in our groove and things are moving along. September is my favorite month of the year. The smells and the colors of fall starting. Plus Colorado is gorgeous this time of year. We are told by Breckens therapists that he will need a wheelchair. Not for everyday use but just for long walks. They also tell us they may require him to have one in school in case of fire drill or something since he cannot walk fast and he will be too big to carry. We order it and insurance pays 100%! Huge blessing!!

October

Doug makes another weekend back to Colorado and then we are getting ready for HALLOWEEN!! I have Cinderella, Spiderman and a little cow. Super cute and had a lot of fun!

November

The year is coming to an end and so is our time in Colorado. Brecken receives his wheelchair which is great but seeing him in it almost breaks me. Although knowing it is not needed most of the time just knowing we have a tiny chair for our son makes it hard. FYI Brecken almost walked the ENTIRE time trick or treating! I only carried him the last 30 minutes:) Doug comes home twice this month and we spend Thanksgiving with our families:) I am starting to feel the anticipation of moving to a whole new state and starting all over again. Brecken is doing awesome in his therapies and he was evaluated to get a machine to speak for him and they inform us for the 3rd time that we do need this machine (we got 3 opinions on this for the fact that we were okay with sign language and we were having a hard time accepting that a machine would talk for our son). At this last evaluation they told us that he needed to be able to communicate with others that did not know sign language. So we agree and decide to get the machine. Insurance covers this 100% also. Thank you Tricare! I am still having a hard time with this whole thing and decide running is my outlet....I run....a lot.

December

Well Doug gets home for good this month! We get the speaking device for Brecken and pack up our 3 kids and 2 dogs and now 2 cars and head for California!! I am excited!! I am nervous!! We get to California the next day and get our boarding house. We celebrate the birth of our Savior Jesus Christ and give thanks that we are back to being a family and that all is well in our lives! We bring in the New Year knowing we have a lot to look forward to in 2012.

2012

We get our house on post in a couple days:) We have an ocean view from the living room window. We are excited to finally get our stuff and be in our own place next week! Taylor is excited to start school and dance next week!! Brecken is doing great and even saying some words!! He will be 3 in 2 days. He has come so far with the help of so many people. I am so proud of him but I will get mushy on him in a blog on Thursday:) He starts school next week too. Since he has a handicap they start kids at 3 instead of 5 through the school system. I am very excited for him! He should start his therapies soon too! Bailey is just being Bailey. Growing like a weed and walking all over the place. She has a lot planned I am sure for this year which scares me a little. Lol. As for Doug and I we are just enjoying what we have and feeling blessed. It was a rough year for us and we were tested a lot but we pulled through as husband and wife and as a mom and dad. We are stronger now:) Our plans for this year are maybe adding another little one:) We would love to give Brecken a little brother. We will see if God agrees with our plans. He knows what is best for us and has pulled us through and we would be nothing without Him. We give Him all the praise and glory for this past year and pray He blesses this next year:) I pray He blesses all of you too:) Happy New Year and God bless!!!