Well, finally late this afternoon we made it home. We are home for now and hope that it stays that way, but on the way home Kaidence started throwing up again. We will watch her tonight and see what happens. Her count today was up to .6, so better. They gave her IVIG which helps her immune system for the next 4 weeks. Hopefully they can figure what med is triggering this before we have a problem from her not getting her meds. We have 2 meds that we have temporarily taken her off of, but she needs to really be on both. However, this is the only way to figure out what is causing the problem. The good old process of elimination. We are waiting for home health to bring us her IV medications. Kaidence is happy to be home and loves to have her brothers around her.
We received another wonderful letter form SSI today telling us they will no longer give us the money needed to pay for Kaidences meds each month. We aren't quiet sure what happened but they told us that was how it would be from now on. They told me it dropped because Mike has a job. Hello, he has had a job all along. I supplied them with pay stubbs and W2's and always spoke with someone personally to update income status. I have received 3 SSI letters in about 1.5 months, each giving me a different amount that Kaidence qualified for. I think they are confused. Needless to say we are very disappointed about the major drop in SSI income for Kaidence. We really needed it. It is frustrating when you call and personally talk with someone and they tell you that you can count on this money for her medical and they just take it away. Oh well, life goes on. But we would apparently be further ahead once again if Mike just quit his job. Crazy how it all works. I have decided to appeal our Medicade Denial. We will wait and see what happens with that.
Other than that hopefully a quiet night at home and in my own bed. I am exhausted and I am sure that Mike is as well. He has had the kids for pretty much the most part of this ordeal. I grateful for him and all he does. He is a great daddy. Thanks for your prayers and as always we count our many blessings!!!
Danny's Birthday
4 weeks ago
3 comments:
What wonderful news. I am so happy that she is home. As far as SS I don't think that they know which end is up. I know that if you keep paying your tithing you will be blessed, and Heavenly Father will provide for you.
You are in our daily prayers and in our thoughts. Love to all of you, Aunt Deb
Oh my gosh, I was so sad to see that Kaidence had to be back in the hospital. Thank heavens you guys are home now! If there is anything we can do, please let us know. The prayers are a definite given, but if you just need someone to watch Kaidence while you shower or just take some time for you, please let me know. She is such a special little angel and that reflects on what wonderful family she has! We miss you guys and pray that all continues to do well!
Shantelle,
I was glad that when I was up at the hospital yesterday Kaidence had been sent home the afternoon before. Even though I LOVE visiting with you. . just not in those cicumstances.
I hope her throwing up has gotten better and last night was a peaceful night so everyone could get some sleep.
I am so frustrated with SSI, that they are playing this game with you. . .hopefully soon you will get word that the funding is back on and to stay.
My new Motto. . .
"Learn from Yesterday, Live for Today, HOPE for Tomorrow"
Heart Hugs,
Carolyn
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