Tuesday, April 12, 2011


So, today was the big day.....we had THE SSI MEETING! For those who have my husband on their facebook, you already know the outcome LOL

Just as I suspected. We had to have a "meeting" with SSI because the income reports show we make to much money. I had to go today with paycheck stubs for Jack and me since October 2009. 2 years of income tax returns, the title to my van that is paid off, and the statement for the car we still pay on. So of course we no long qualify for SSI at this time. I don't quite understand the whole SSI thing, but apparently they count the income from 2 months ago for the current month. For example this month they look at February's income. We have been mailed a check ($54) every month for the last 18-19 months except for 2 or 3 months. Occasionally we would get a letter saying we did not qualify for the next month, but then it would start back up the month after. We did not qualify in December or January (but still got checks for some reason) We did qualify in February I guess because their were only 28 days, their were no holidays, and I took off a lot so my paychecks were much smaller. The months that their are 3 pay checks we are screwed and would not qualify no matter what. Most of the time we are $100-300 over the limit apparently.I don't understand what is different..our income has not changed AT ALL!  She would not give me any strait answers when I asked how much we could make and still get at least a $1 check so Jacob could still get his Medicaid. She finally told me I made "X" amount of dollars in February before taxes and I qualified that month, so she said we should make no more than that.

I don't care about SSI money. Sure it would be great to have a few extra dollars...and if I happen to get fired from my job ;-) I know I could collect SSI for the boys and unemployment LOL...but seriously I am very worried about the monthly cost of his medical supplies after his medicaid is gone. It is going to be hard and I am going to have to budget better to pay for all his co-pays (right now medicaid picks up what the private insurance does not cover). I am hoping his medicaid will last until the end of the month at least :-( I will have to pay $35 co-pays for all specialist including his speech therapy..though I think I remember reading that the co-pay for that changed to $15 (must investigate this more)...but it used to be $35 so assuming it is still $35....that is $70 a week plus Ava's school is $65 a week. I will have to find away to budget $270 a pay check.....this not really being possible on our budget especially with gas going over $4 a gallon....not to mention I already pay $25 an hour for the CECO therapy every other Friday. Making just the cost of Ava's school and Jacob's therapy $590. Then after the co-pays for Jacob's prescriptions which average over $300 a month...one costing $165 alone. I am looking at a cost of nearly $900 a month.

I was worried about the cost of his tube feeding supplies....I called the company that does his supplies today and I was relieved to hear that his health insurance has been covering 100% THANK GOD! I got a bill a few months ago for over $100 for his formula...I think it was billed because he was changed in the middle of the month from pediasure to Vital Jr.  She also told me that she would send me a form for me to fill out...she said I could possibly qualify for a program that covers any co-pays I may have for supplies from them.

How am I going to work $900 into my budget??? I do not know....(BTW I am including Ava's school because I just had to start paying for it. Jack's parents paid the 1st part) Hoping the speech therapy is only $15 co-pays...if not we will switch to once a week...and I will work with Early Steps to maybe find a speech therapist ..just realized something...if Early Steps can not find a speech therapist for him in 30 days they WILL PAY for whom ever I find..YAY!  Maybe I will have that covered! Heck Yeah! If not he will be moved to once a week if it is $35. If gas prices get worse and we are really hurting then I will have to cut out CECO. The $165 Rx may be going too.....

Ugh...trying not to worry. God always provides for us. The lady told me to work less hours...which is not possible at my job...so I realized instead of trying to find ways to work less hours to get government assistance...maybe I should just work more and pay for it myself. LOL The only part that will bother me then is when he is hopitalized...they can send those bills to the pile of other medical bills I already have in collections that I can't pay.

Trusting in God that my son and the rest of my family will be provided for. I considered quiting my job, but I don't want to rely on the government for my bills to get paid. I was told even if I quit I would not get the full benefit amount (which is close to what my after tax paycheck is) so we would still be having less income every month and we would loose private health insurance. With all the benefit cuts going on around here these days..I am just not prepared to leave my family at the mercy of the government...so I guess I will carry on and keep working. Trusting in God for the next step...maybe there is something I don't know about he will qualify for. I guess time will tell.

Oh, the lady suggested that I "give him to someone else to take care of"! Seriously! She said well if you can't provide for his medical expenses...you can let a grandparent or another family care for him that makes less money. She said then they won't count our income because he won't be living with us.Then he would get medicaid and who ever had him would get his SSI benifits...so I am confused if she was suggesting I lie and defraud SSI or is she was serious....I wonder if she would just "give" her child away!

I think Andrew took steps tonight...but my back was turned. LOL He was by the coffee table and I was getting his high chair ready for his dinner. I turned around and he was standing independent in the middle of the room..so he either walked from the table to the middle of the room (2 or 3 steps away maybe) or he learned how to stand up without pulling up on furniture. YAY! Either way he still has never stood alone in the center of a room before. Andrew has a mysterious fever. No cough, no runny nose..just lots or drooling...they say it is a myth that they get a fever when cutting new teeth, but who knows...I hope Jacob does not start spiking a fever!

Jacob had a sleep study last night. I don't know when we will get the results. Poor little guy looked horrible with all that stuff on him. He is STILL VOMIT FREE! He continues to take tiny amount of food by mouth. I have upped him to 2 jars of baby food during his 3rd feed instead of 1...so now I am going to have to up his volume a little to give him extra water. I am so excited that he is doing so well. He is holding things in his hands a little now. Jack says he held beads in his hands for a while today while the EI was here. He says he brought them to his mouth too.

I don't remember if I blog about it before, but I bought Ava the dvd "The Letter Factory" she can say "A-E" now she can also say 2/3 of the sounds of the letters, but just not the letters themselves...nor will she say any of them in order Ugh!

Jacob all hooked up for the sleep study...HOW THE HECK DO YOU SLEEP WITH ALL THAT ON!

Andrew giving Ava some love


  1. Ha ha Skye has had 2 sleep studies and she also looked just like this !!! Also if it makes you feel any better we also lost our medicaid this month. I am freaking out too so you are not alone!! Love Andrew walking !!

  2. your story breaks my heart.my daughter was born 3 months early and was sick and in the nicu for a while and the doctors tried to tell me to abort her when i was pregnant saying she would be brain dead and wouldnt ever beable to walk or talk and i would be lucky if she were to survive .she is now 9 and walks ,talks,ect.my sister helped keep my spirt up and just recently she passed away with one of her little boys in a car accident and now i am raising her other little boy.i was so upset because she got married just accouple of months before she passed away and just because she got married her son didnt get any of the things that belongs to him.my sister was in a car accident in 2004 and with that money she bought a house and ect. it all went to her new husband that moved on with his life just 1 week after my sister passed and has his new girl friend living in my sister/nephews house .i pray to god each and every night and tell my sister sorry i didnt protect her things but i got the most inportant prieous gift custody of her little boy .gods watched over me and my family and hes watching over your family to i will pray that your family continues to get the help /support that yall deserve .my nephews ssi check was canceled do to my husband and myself making to much money so i do understand .his bio dad is suppose to pay child support and have health insurance and doesnt so we work 60 plus hours a week each to keep our family a float .