Oh Vey! Please let it stop.

Just a fore warning that this post will be not like other posts I have done before.

You never know what you are going to get when you wake in the morning.  Like my whirlwind of a weekend and a beginning of a week.

It started Saturday everyone was happy and had a great day!  I was so surprised that no one fought or any disagreements at all.  Had a great date night thanks to my sister in law who gave us dinner and told us that when we accept her offer she wanted the kids to come over and have a pizza party.  Ok that sounded great.  So Saturday went so smooth that I didn't think much of it early Sunday when my husband flew out to Texas to do a project for work.  By 9 in the morning I had kids fighting and a broken hanger, and by noon I had told all my kids to go to bed and take a nap.  Then before 6 pm I had a broken mirror and little boy with some cuts on his knee.  No he was not the one who broke the mirror and it wasn't done on purpose.  You will see by the pictures below.  Before 7 pm mister man had broken his bed, after me putting it back together and telling him to get in bed.  Had to run to my meeting and thankfully it didn't last very long by the time I came home all the kids were out of bed and watching YouTube minecraft stuff.  Turned everything off and sent them to bed.  Tried to chill after being very frustrated with all the damage that was done during the day and all the fighting. Thank you Kim Hyun Joong for your music!!  Without that I might have had more issues than I did, your music calms my mind and soul.

Yes broken hanger in hand, and no he doesn't know I took his picture.

Pulled his bed apart and then got frustrated and refused to put it back together.

Yes threw his mattress into the closet.

Yes this mirror has served it's purpose and it live pasted the ripe old age of 15.  May it rest in peace.

And it is gone.  it is hard walking by and not seeing your reflection.  On well I will get use to it.

The said battle wounds of said mirror.  Now they are all healed, even though he was super cute and told me that it didn't make him cry.  He still wanted band-aids and that was fine he got his band-aids.

Broken bed. Oh boy!

Monday comes along and I had made sure that the internet was accessible to the kids since I really didn't want to start them fighting and breaking things again.  It was great everyone was happy and helpful.  We cleaned all day and then when told to put the bat away one child decided not to do that and another thought it would be a good idea to sword fight with bat and sword looking toy.  The child holding the bat accidentally hurt the child with the toy, and then everything blew up again.  That was at 4:30 pm Monday.  When I saw said child how had what I guess was the toy I knew something had happened since I was working in a different room at the time of the incident and didn't see everything that had happened.  But all the kids were aware of what had happened since they were all in the same room apparently.  When I asked the vicious looking child what had happened he had walked by and just glared at me and threw the toy in the garbage.  He had snapped it in half.  Asked another child what had happened and that child responded that that they were playing and the bat hit him in the head. (There was no blood, no lump, no nothing! I looked him over very carefully.)  Went to talk to the child that had the bat and that child was cry and couldn't stop for very long.  When asked what had happened they said they were playing and they accidentally hit him in the head with the bat. Then proceeded to cry more and harder.  After about 2 hours and me informing mister man that his behavior was not acceptable and he is not allowed to break things when he is upset unless he starts buying things first.  He didn't really care and because very very angry.  Let him know that if he continued to become more volatile, I would have to contact the law enforcement and have them come and take him until he can cool off since he was becoming more of a danger to himself and others. Sigh!!!!  As I sit here and type this I am totally listening to everything I can get my hands on by Kim Hyun Joong, just trying to calm myself after looking into a face of someone I love and care about and see pure hate and anger.  I just pray that tomorrow will be better.

What the toy should look like since it was out of a set of two, where you toss the red ring to each other, not sword fight.

Yep snapped like a stick.  Now they are all gone I tossed them all.

Just a side note that as soon as I can I will post pictures from Rhett's surprise birthday party.  Thank you all that came out I had a blast and so did Rhett.  Ok so it was really a party for Rhett and he loved every minute of it even if he was tired.  Thank you so very much.  I will also update you next on what is going on with him and what the doctors are saying.  I think I can do that later today as long as I don't have to play crowd control for other children.

It all started as an "OH NO!" and turned into a disaster

Written 10-29-14

It all started as an oh no and turned into a disaster.

Our toilet was leaking into our basement and destroying the floor in the process.  So we decided that we had to do something and that meant pulling out the leaking toilet and repair the damaged floor and put new floor and toilet down. (FYI if you ever redo a bathroom you might want to keep in mind that it would be helpful to have a second bathroom.)  Oh as we were pulling things out like the vanity and the toilet we were sad to see that there was so much more damage than expected.  We had to take the tub out in order to go under that to make sure we got all the bad wood out.  It was disheartening to see just how much we were really going to have to do in order to make the bathroom decent again.

Gratefully my parents have been willing and able to help me by letting all of my kids stay with them.  My parents are the best!!!  They get all my kids up and out the door. My dad even takes Rhett and Dylan to school since they go to schools that are a long ways away and the buses only pick up them up at my house.  My mom takes Nikole and Gavin to school. It helps completely that she works at the school that Gavin attends. 

If this couldn’t be worse we just add to it.  

We pulled everything out Saturday and Sunday and by Wednesday we still didn’t have a floor.  After a rough weekend without kids and a bathroom, since this is our only bathroom right now, I was grateful for the week to start.  As I was headed out of the house Monday morning I get a call from a debt collector on my cell phone for a $47 bill from IHC Homecare Bountiful.  I was in tears!  I couldn’t even understand why all this was happening to my family.  It would be different if I didn’t have to deal with all the multiple thing that I have to continually juggle.  So after a day and talking to my husband about bills that we need to pay, I called IHC.  Let’s just say some people were more helpful than others.  I finally got in touch with a manager over accounts at IHC and the financial assistants.  She was downright mean!  I tried to explain to her that we are really struggling and to be getting multiple bills and when they all cover each other it make it really hard to keep track of them all.  She told me that I should make a spreadsheet and good luck.  I tried to tell her that I get bills from several places that are all on payment plans, not including the major payment plan for my two surgeries and Rhett one surgery.  I informed her that because I work and my husband works we don’t qualify for help from anywhere.  We own a duplex that we rent out and it covers the mortgage so my boys are not covered by Medicaid and they won’t be because of that.  I let her know that we have already gotten help once this year with medical bills for the boys from Angel's Hands Foundation

I have calculated that I get a bill from the OB, IHC homecare Bountiful, IHC homecare SLC, IHC clinic, U of U, Neurology learning and behavior, orthodontist, and Anesthesiologist for my surgeries and the boys.  Yep you counted right that is at least 8 bills because of the multiple bills that I get from IHC.  That is several payment plans and payments every month.  When I told her that we have met our out of pocket max (which is $8000) and starting in January it is going to go back to $0 and we will have to start all over with everything.  Those payment plans are just going to increase.  Right now our big payment plan from the hospitals are about $4000 and the payments are about $160 every month.  With all those other bills it is at the minimum of $25 every month.  But there are at least 8 bills listed so I would be paying $200 for those 8 other bills plus $160 that makes it $360 every month.  Oh and if any other balances are added to the balance that we have now they are going to increase the payment in order to pay it off in 6-12 months.  Not included in this is the orthodontist bill.  I told them that I will pay them when I can and they are great at working with me on that.

 

I tried to tell this manager on the phone but I get this response, ‘Well even if they were all on the payment plan we would have the payments really high in order to pay it off in 6-12 months’. After talking with this woman on the phone I was almost in tears.  She said well sorry we cannot help you.

At that point I was trying so hard not to just break down and cry.  It made me want to regret having my kids.  HOW DARE THAT WOMAN DO THAT TO ME!!!!!  My kids are treasures and should be cherished not regretted.  Why would she do something like that?  I have not eaten in days I just feel sick to my stomach.

I thought about apologizing to the woman that I talk to saying…. “I am so sorry that I gave birth to my children who have medical needs and will have to fight to pay the medical bills.  I know that if I had adopted them they would always be covered by Medicaid.”  Just writing this today I chocked down some instant breakfast praying that it stays down.

This whole situation is too much.  I need help and I am not even sure where to go for help.

Today-

I am still not back to "normal" if that is what you call it.  I can eat but not lots and not often. My favorite food that doesn't make me sick is sushi.  LOL!  I know land locked state and that is a favorite.  My bathroom is still nonexistent. We are barely hanging on with all the money issues that we have.  I have had to put this whole bathroom on a credit card, I mean heck let me check my pockets do I have $4000 to fix everything that needed to be fixed in my bathroom? Uh no.  So in order to have a toilet and a tub working that is what was needed.  At least I can see that we might have a working bathroom before next weekend which would be the best thing ever after having none for over a month.

I am still unsure how I feel about so much. I am working on trying to figure out how I feel and why I feel that way. I think that will take sometime, and that it is going to be hard for me since I am not use to doing that very much.  Is everything in life hard? I would hope not.

I am so grateful for Crystal and Jared Hess that came over to my house and helped with the tub taking out business and the tiling of the wall business.  They are a huge blessing!!!  Thank you ever so much!!!!!! Crystal has been getting my boys after school and taking them to my parent house for me because I can't and the buses don't bus them there. I believe that it is stressful for her to do that for me but I am so grateful.

It is now almost December and my mom called to find out what we are getting the kids for Christmas.  I told her that I am not getting anything.  I just put a bathroom in my house that is all I can do for this year.  She asked if my spouse was going to get anything.  I told her that I didn't know.  I think she is frustrated too.  I completely understand.

I was thinking the other day that it is a miracle that I am as sane as I am right now. There is so much going on in my life that could cause me to lose it completely but thankfully to the music I am listening to it is somehow keeping me grounded.  I know you will think it is weird but it is what is holding me together right now. Thank you Kim Hyun-Joong and SS501(Triple S)!!  I have been listening over and over. Even if it is the same songs and the fact that I don't understand everything being said, but it is so relaxing to me.  His music and their music have touched something in me that I didn't even know about until I heard it. This is just one of the many that I love to hear. I know Jan Hernandez would crack up reading this, but she is introduced me to this music. Thanks Jan!!! :)

Just the other day when I took Rhett to the Cardiologist he did a 6 minute walk test and came out with really high blood pressure.  So now the cardiologist is referring him to a Nephrology (the branch of medical science that deals with the kidney) doctor.  Now we have another doctor to add to the list of lists.  But the doctor was wondering if there is something going on with his kidneys, since the main reason for having high blood pressure in children is linked to the kidneys.  So we are having lab work done the beginning of December and the middle of December we are seeing the kidney doctor.  But what I don't understand is that if it says something about this syndrome affecting the kidneys, why hasn't anyone wanted to check it out before?  Oh wait maybe that is because they just found out what the boys have in March.  Even so it says so right there in print:

Short Rib-Polydactyly Syndrome Type 2 An autosomal recessive lethal skeletal dysplasia (OMIM:263520) characterised by markedly short ribs, short limbs, polydactyly and multiple anomalies including a narrow thorax with hypoplastic lungs, extreme polysyndactyly, dysproportionate dwarfism, median cleft lip and palate a ventricular septal defect and cystic Kidneys.

Imaging
Shortened and horizontal ribs, squared scapulae and elevated clavicles with lateral kinking, normal spine and pelvis configuration, and shortening of the bones of all four extremities, with extreme reduction of tibial bone length.

Molecular pathology
Defects in NEK1, which encodes and enzyme thought to have a role in controlling meiosis and cilia assembly, cause short rib- polydactyly syndrome type 2.

All of that is found here: http://medical-dictionary.thefreedictionary.com/short+rib-polydactyly+syndrome,+Majewski+type

But now I question it because everywhere I look the infants have died at birth or right after.  I understand that they told me that Rhett would die after he was born, but I refused to accept that since I was so very sick with him.  But I figured out that the chances of having a child with SRPS are .0075%.  So that got me thinking and I am not wondering "HOW THE HECK I ENDED UP WITH TWO?" according to the doctors.  If it is really that rare how did that happen and how are they still alive?  I will be in contact with the genetics office this week to get the boys in to discuss this whole thing.  The appointment will probably be months away because that is how doctors roll.

I am seriously thinking of starting a fundraiser to help cover the medical costs that we have. My sister said she would help..... I wonder.  I think that would help me destress, even if it a little, and I think that might help Rhett not try to turn blue to because he doesn't want to pay for oxygen.  HAHAHA!  You would think it is free.  I told him that I didn't have to pay for it since he was changing tanks often.  But in my opinion he shouldn't have to worry about how much money his medical needs cost.

It is so hard!

People have often asked how I am doing and to tell you the truth I just want to cry!  No there are very few people who know what it is like facing what I face every day but most of them are different issues since I don't know of anyone who has what my boys have.

You have no idea how hard it is to talk to these doctors and get as much info as you can and then understand that said info.  But when the doctors finally see the results and they can see how bad the results are... you still have to smile because you have your children right there and there is nothing that you can do about that but the doctors face drops into an almost grim face.  After going through what I have to go through I often tell people that I don't care, I also will tell people what I think most of the time if I am in one of my moods that let's me just get it out.  I feel like such a horrible person sometimes for being honest and mean with people, but heck the petty problems that they face compared to mine are so just that petty.  Yes I know that there are many people out there that have their challenges and I know it is hard for them, I understand.  I know everyone has problems and they are all different, and that is a good thing.  But when you ask for my opinion and you want me to be honest do be so put out if I don't tell you what you want to hear because I can only take so much before I just snap.

You have to understand where I am coming from.  We struggle everyday with just getting by not only with money, food, and everyday things but also with the health of our boys.  No we don't get help very often because we know of many people that could use it, and feel that they could use it more than us.

But man when we get the rug pulled out from under us so many times often I am ready to throw in the towel and say "screw you, I am done!"  How many times do I have to watch the faces of doctors drop and then have them tell me that they don't know?  I would love a straight answer for once instead of this I don't know, or we might be able to...

So Rhett asked me the other day when it was just him as me... "Mom if I pray hard enough and want it really bad and have the faith to get it will the lord give me the ability to fly?"
As I looked at him and tried not to laugh since I wouldn't have thought he wanted to fly, but then I remember he does love planes and wants to go on them more.  But because of fund not going to happen anytime soon...  I looked at him and said... "No sweetheart.  The Lord doesn't have the power to give you the ability to fly.  You see, people were not created with wings to fly on their own and that is why we have airplanes and not wings."
After he thought about that for a little while he said... "Well if I pray really hard and have the faith will the Lord be able to help get me off oxygen?"
As I looked at him and wanted to cry I said without crying..."Yes honey the Lord has the ability and power to help you get off oxygen.  It might not be the answer that you expect but he can do that if that is what you really want."
As I thought about that answer that I gave him I wonder if he really knows what is going on, I mean he is a smarty pants.  He even told the doctor that without oxygen he turns blue.

What would you do if you had to face everyday watching your child not breathe right and then find out and have the knowledge that the lungs of your child are not functioning the way that they are suppose to meaning that the lungs are slowly not working anymore?  How would you handle it?

The things said

So this might sound like a little rant but this has really been bothering me and I am sure I am not the only person out there that feels this way.

I am not perfect but I try my best to treat others the way that I would want them to treat me and my kids.  Here is the point...

If you have mean things to say DON'T!!!  Yes I know you are entitled to your own opinion and that is great, but why don't you think before you open your mouth?  Think how is this going to affect the other person.  There is a good chance that you don't know what is going on in their life right now, or you are not sure how they are handling everything that they have to in balance.

I know I have been hurt several times by people ranging from family to total strangers not thinking before they speak and really hurting me.  They will never know how much they have hurt me because I refuse to stoop to their level and let them know they have hurt me.  I know they don't mean to be hurtful to me, but that doesn't make the hurt go away.  There are lots of people that just do not understand that when they open their mouth and say what they want they are bound to hurt someone.  They think that it is something that needs to be heard, but most of the time that isn't the case.

I know that this also applies to me but I am trying to keep my opinions to myself and then if someone asks then I will share but until that person actually asks too bad I refuse to share.  I don't want to hurt others like I have been hurt.

This also applies to parents teaching their kids on the correct things to say.  I have seen several kids come up and ask me(usually) and Rhett(sometime) point blank, "What is wrong with him/you?"  He looks at me with a broken heart.  I turn point blank doesn't matter what age the child is or adult, "There is nothing wrong with him what is wrong with you?"  I know mean but get it through your head!  This boy has been through so much and he thought you were his friend until you opened you mouth and didn't think about asking why he has oxygen, or why he is shorter than normal kids his age.

You should teach your kids how to approach someone with a disability and ask questions appropriately.  I know I have done that with my kids and I correct them often  and we go over situations where I might not be with them but if they are curious and want to ask questions ask them with the feels of the person they are talking to in mind so they do not cause unnecessary heart ache.

Going on with my little rant...

Even if you think you might have the persons best interest in mind understand you do not know them as well as you might like to believe you do.  I am tired of defending myself from all the closed minded peoples attacks verbally.  I understand that we are all human but please think before you speak.  Even if you know the persons background and you know what is going on in their life it still gives you no excuse to say anything you want to them even if you think it will make them feel better.  Well guess what it doesn't help and it makes the person you are talking to feel horrible!!!  Often times I just want people to let me know that they care, I don't want pity or drama from them

I let people know what is going on in my life so that way my sister and brother stay informed and that is the only reason if I help others that it great.  They both live so far away and it easier for me to just put everything here so they know what is going on since I normally have so much going on that it can be hard keeping track of everything.

On a different note I have had a few people ask me how I handle everything all the time.  It really isn't that hard.  Either I laugh or cry but if I start crying I never stop.  I put a smile on my face so no one knows what is going on, and trust me I am a great actress.  I only go day by day.  I am thankful that I am able to get up in the morning and to be able to get things done that I need to do.

Hope everyone has a great day!

Happy it is over

This past school term was stressful for me and I am not even in school!   LOL!!

This two weeks ago was the end of the term and Rhett was trying so hard to pull his grades up.  He only had to go to school Monday through Thursday since they have Friday off when it is the end of the term.  Well Thursday he had a dentist appointment and so did Dylan so I took them to the dentist and when I took Rhett back to school I told him that if he was staying late to finish some papers that were due last term he had to call me because I was responsible for picking him up from school and making sure that he has enough oxygen to last.  Well no one called me and by 4:30 I started to panic!  I was trying to call the school to find out where he was and no one answered the phones!

CRAP!!!  WHERE ARE YOU RHETT!?!?!? 

So I called the bus driver to find out if he was on the bus and they were for a reason or something like that but when I called there was no response so I left a message and tried the school again.  I was doing all this while getting ready to get in my car and head out to try to find him.  As soon as I was about to walk out the door the phone rings and it is.... the bus driver.  He told me that all the boys that he picks up from the school decided to stay and no one called him.  I told him that I would have called him if I had known but my son didn't call me like he was suppose to have called me.  So when I found this out I was so mad it was not good.  I was way past my breaking point.  I had changed his oxygen when I dropped him off after the dentist so I knew he was almost out of oxygen.  When I told that to the bus driver he was kind enough to offer to go give Rhett another tank since he was close.  I told him that would be great and to let me know if he saw Rhett, since I wasn't even sure he was still at the school.  But I never heard back from the driver, I think his cell phone died. LOL!  Oh well.  I was driving toward the school during rush hour and I was panicking, really angry, and stressed.  Those are not a good combination to have while you are diving, so I was on the phone with a few people trying to calm myself which did work and we got to the school safe.  I go in and he is standing there in the class where he stayed after to work on some papers.  It did help his grade.  That went from a C- to a A- just by staying after and finishing some work.  At least his teacher can get him to work on things that I cannot get him to do for the life of me.  But I was still really mad at him for not calling since I had told him over and over again to call me if he was going to stay late.  I took him home and told him he was grounded forever!!  Wah ha ha!!  I can do that since I am the mom!

I will have to post more later since there are pictures that go with the next one.

This bites!

So I have been home with no computer all week and man it totally sucks! I thought that I was going to handle it well but man I went stir crazy. I check my email and there are over 400 messages. :o That was bad and it took over 2 hours to go through. I have been working on the police and insurance papers. It is taking longer than I was hoping. I have to just get it done and turn them in ASAP.

Met with the genetics this week and that was hard since I have no new info and neither do they. :( They are going to be getting a hold of the doctors in Washington DC to see if they have found out anything or if they need to fly us down there again for another go around. He is also going to find out if they can get us a case manager at the hospital to get all the doctors in the same room to talk about Rhett and what we can do for him. It won't be until later this year. I wish that we could have some answers now but if I can get them by the end of the year that is great.

Nikole told me the other day "Did you know that in my class they push you?" ROTFL!!! Of course they are suppose to push you. I told her that is is better to be pushed and learn new things every day than it is to be bored out of your mind in class all year long. Of course she doesn't think being bored all year is all that bad of a thing and would much rather be bored. :D She cracks me up! So we asked Rhett which one he would rather do be bored or be learning new things everyday and he told us that he would rather be learning everyday. Go figure the one that already knows everything would like to learn everyday. :)

Gavin is having some issues at school and he told me that he didn't care. WHAT?!?! He better care! He is only starting school and already acting this way. :( It looks like I got my hands full. He is really enjoying school but it is mostly struggling with emotions. I wish I could help him more but I am at a loss. I am trying and so is his teacher but there is only so much that we can do. He is such a sweet boy and likes to cuddle with me in the morning when he wakes up. Makes me feel so special. :) He loves teaching Dylan new things and he often has to get in trouble for teaching bad behavior. That is ok he is learning.

Dylan is the funniest kid on the block. :) Still not talking or signing but loves the facial communication that he displays. He loves learning and is way smart, but it is too bad that he doesn't want to corporate when they are testing him or trying to work with him. He wants to be a big kid and tries to do big kids things but he is so small. I don't think that he realizes that yes he is old but not as big as the same kids his age. I hope he is not coming down with anything that is going to need any hospital time. I like not being in the hospital with sick kids.

I will have to update more often. But until I get a new computer I will update when I have a chance.

So Frustrated a rant

So what should I do when I fell like doctors are going too far?

After this surgery that Rhett had I am very frustrated to see how much pain he is in.
The doctor said that he was very aggressive and it is my son that is suffering.
Don't they understand that I have to see him every day.
I ache each time I see him since I think they went to far, of course I put everything on the line.
He is so bruised and battered.
He had a huge drain and it really hurt and there is still a hole where they took it out.
Yes they did bandage it but it was HUGE!
He has 5 bandages on his back and is not eating very much,
not drinking very much,
not moving very much,
not taking pain meds as much as he should.
I want to cry wondering what I did to my baby!

His shoulders have risen to the point that for me it looks like he doesn't have much of a neck like he used to. It almost looks like he is shrugging a little.
He looks like he is hunched over to me which is very sad for me to see him not stand up straight.

What have I done?
How can I change what I did?
How much more does he have to go through?
Is he mad at me for putting him through this surgery?
Do I really know best?
How can any mother do this to their child?

Can you tell I have a lot on my mind?
What would you have done in my shoes?
I would love some feedback...

I will post pictures tomorrow when I am more awake.

Frustration!

It has been a little frustrating here. There are so many things that I need to do but it just seems like I have not enough time to get everything done.
What to do what to do?
I want to help so many people and I cannot speak the language.
I want to do better and I am not sure how.
How come I feel like I am good enough?
I try so hard, but maybe I try too hard.
WOW! Many things flying through my head...
I need to make sense of it all and hopefully I can do that soon.