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.
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.
