I can't even believe I'm posting these pictures. I mean, this is my diary but a diary that everyone see's! But now I'm thinking of sending them to the Utah state government and including a little letter that says. Thank you so much for opting out of all the federal medicaid waiver programs, except for the one you made up yourselves that only takes a limited number of children. Because of you this is where I get to sleep because I get ZERO nursing hours for my medically fragile child!
Ray took these this morning when he found me asleep in Jax room. He does have a chair in there, obviously my head is on the ottoman. But there was a bunch of crap in it and I was too tired to move it. I honestly don't even remember taking my pillow in there and falling asleep like that!
Oh Lacey, I wish things were different for you and that you and Jax had the help you both need and deserve!! I can only imagine how difficult it must be!
ReplyDeleteI must say, it is awfully kind of your husband to take pics of you sleeping rather than whisking you over his shoulder and bringing you to bed to sleep!! Ahhh, men!!! lol
Positive energy coming your way!!!! ((hugs))
Actually, it makes me FURIOUS that the gov't can do whatever they want! It is not fair to people like you who really need that service. I wonder who we can contact in Utah state congress to help you turn it around!
ReplyDeleteoh lacey - i am so sorry to see you "sleeping" (if that is what you can actually call it) on jax's floor with your head on the ottoman! is jaxson on a medicaid waiver waitlist? I hope somehow you can get some sort of night nurse/relief figured out or be one of the few accepted into the program you mentioned that Utah "made up". so sorry to "see" the night you must have had!! thinking of you!!!
ReplyDeleteLacey, I don't know how you do it. Seems like there should be SOME WAY to get you help!!!! How infuriating and frustrating!
ReplyDeleteOh I'm so sorry- that picture made me tired just looking at it!
ReplyDeleteI think you should definitely send it to the government - with a strongly worded letter!
ReplyDeleteIt's just so unfair that you can't get nursing. It's not a luxury, it's a necessity when you have a trach kid with complex medical needs. I hope you can get some much needed rest soon.
ReplyDeleteHave you ever called 'Get Gephardt'? He seems to have connections...
ReplyDeletethis brought tears to my eyes. my heart aches for you....I have had many of those nights, and now they are over for me, but seeing this just KILLS me. I want to come take a night shift for you!! ((hugs))
ReplyDeleteYou are an amazing super mom! I know it's hard to not have nursing in home. I hope for yours and any other children who REALLY need it get it sometime in the near future. Keep fighting it. You are amazing.
ReplyDeleteOh Lacey! I really, really am feeling your pain.....literally! I have been sleeping in a recliner in Christopher's room for the past 6 years because of the same issue. THe sad part is, we are approved for nursing - they just can't/won't find any!!!! :(
ReplyDeleteI would get the addresses to your State Rep and Senator & the Governor, get some REALLY nice Thank you cards...Enclose those photos along with some of the other boys. Then thank them for not participating, limiting the number of children with disabilites that they halp and for being discriminatory towards those with disabilites. Remind them that if you, as a parent, endangered your children the way that the State does, they would have been taken away.
HUgs to you. Like I have said before, I wish we lived closer - we could tag team!!!
Steph and Christopher
AWW...Jax has such a great Momma!!!
ReplyDeleteSorry you aren't getting very good sleep, but I am impressed that you were able to sleep like that.....obviously you are exhausted enough to be able to sleep anywhere!
Like I've said before, of all the people that I know with a special needs child, you are THE ONE who needs nursing the most....the system there just isn't right! I would definitely send those pics to them with a VERY long letter!
Hope you get some GOOD sleep soon! Love and Hugs!!!
I got tears over those pics, Lacey, that's just freakin outrageous! You should send them the pics with a big fat thank you! FOR NOTHING! Ask them how they sleep at night!
ReplyDeleteBut Cammie's comment came me laugh..
Ok, I cannot believe that Jax doesn't get "priority seating" in the Utah MW program, WTH? If anybody needs it, its you guys. I am shocked that there is a limit on how many children can qualify.
ReplyDeleteMy nephew was trached for a long time and they has nurses everyday in NY and then in TX when they moved. Utah needs to get with it.
As for the pics... you look like a real life Sleeping Beauty to me... a loving and dedicated mom.
Bless your heart! I so wish that you could have at least a part time night nurse so you could get some rest.
ReplyDeleteHopefully in CA you will have all the help you need.
sorry Lacey. It's really not fair. I wish I could make it better.
ReplyDeleteUgh! That breaks my heart, guess it doesn't help to say that IF I were closer I sure would be pulling a few night shifts to help you get your rest. Big hugs Lacey!
ReplyDeleteLacey, I wish we lived closer. I would love to come take a few night shifts a week to give you some rest! I cannot believe you don't get nursing, it's insane to me. I hope that after you get your beautiful little girl, you guys find a way to come to CA quickly!!
ReplyDeleteI hope Jax feels better soon...thinking about you guys and sending lots of hugs your way!
ReplyDeleteLacey, I'm so sorry. We did this for 3.5 years before Parker was trached.
ReplyDeleteI wish I could say that I see things turning around in the Medicaid department. I follow this pretty closely and unfortunately I see things getting worse. If Utah follows what a lot of states are doing, NOBODY will have nursing hours.
This is why Reed and I have been working to revamp Parker's room so that we can fit a twin sized bed in there. Sleeping on a mattress thrown on the floor just isn't working anymore.
Have you contacted the Medicaid offices in Cali lately? My friend there tells me that Medicaid is only being offered to those who admit their children into special needs facilities.
This is a pretty reliable friend, she is a nurse practicioner and her husband a Doctor.
But, maybe that is just in her area?
Big hugs~
Tammy and Parker
www.prayingforparker.com
www.5minutesforspecialneeds.com
Lacey - I am just catching up on things - praying that all is well with Jaxson. And you - poor thing - I hope you have gotten some rest. Oh, how I wish I lived nearby to come and give you a break!! Blessings to you and your precious little man.
ReplyDeletePoor mama!!! It's so not fair! I wish I lived close so I could help in some small way!! I do need your address, I have something to send you for your sweetie in pink!! HUGS!!
ReplyDeleteLacey I feel terrible and extremely guilty that I actually got to sleep in my bed at night and that I got a relatively decent nights sleep.
ReplyDeleteI wish there was something you could do, will this change once you guys move to california? If yes, you better hurry up and get out of there!!! Don't they see and realise just how much medical care Jax requires or don't they care???
This is priceless, and my life and yours are far too alike. I find myself in her crib more than in my own bed. And I get wrapped up in the cords and wires more than she does not. Oh boy!
ReplyDeleteYou look lovely though, stay beautiful <3
It seems like there should be more help~ If it is like anything in our state, it goes to all the cheating people who don't need it~ Yes, I said it! Jaxson has the best mommy!
ReplyDeleteLacey, these pics break my heart. You are doing wonderful things for Jax, but I am so sad that you don't get the nursing help you deserve!
ReplyDeleteUrghhhhhh...that makes me mad at Utah...Jaxson is a lucky boy though!
ReplyDelete