But from everlasting to everlasting the LORD's love is with those who fear him and his righteousness with their children's children . . . Psalm 103:17

Wednesday, January 23, 2013

Seth's homecoming complications?

Hi everyone,

I am struggling with some discouragement over the disappointing and complicating news that our health insurance for Seth has maxed out, perhaps throwing a bit of a wrench in the work to get him home Thursday or Friday. I am so indescribably grateful I can know God is sovereign and only ever works everything together for the good of those who love Him and are called according to His purpose. (Romans 8:28) Thank you to all who are praying us through this. I can hardly wait to get him home!

Another sobering fact is that before they knew we were maxed out on our insurance for Seth the hospital was attempting to secure 56 hours per week of professional nursing care at home for the foreseeable future. His needs are just too great for us to deal with on our own, especially on the weekends and in the evenings when help is more sparse and babies are more needy. :} He will also need regular home visits from the occupational, physical and speech therapists (due to developmental delays secondary to prolonged hospitalization and to help him overcome his oral aversion and learn to eat by mouth; he's back to almost all tube feedings only following the surgery), as well as durable medical equipment provision and maintenance. Whew! But our Father has provided so richly in the past, and we know He knows our needs before we can even think to name them. (Matthew 6:8)

Tonight when I was visiting he cried almost the whole time, then vomited profusely. It was a hard evening. I kept remembering, though, that we begged for his life and have been given that, so these hard times are really a blessing since he's here with us to go through them together. We cannot praise and thank God enough for sparing our little boy.

In the meantime, to those of you who feel led to pray for patience and protection: Gavin and I could really use it. There are times each evening we definitely fail, and "you always hurt the ones you love," in my case my wonderful stressed-out husband. I also am needing to scale back in some other areas.

Thursday, Lord willing, we will have things figured out with the financial department of the hospital and can room in with Seth to get teaching on all his equipment and special needs. Then, please God, he can come home! As I carried his car seat through the halls of the NICU this evening I was reminded again of the miracle God has done for us.

To Him be the glory forever and ever, in our lives, in Seth's, and in all of creation,
Carrie

22 comments:

  1. I noticed after the last few days that every time I inquired about something that you had been worried about (that had subsequently been provided) that you said ironically, "Yeah. That was really a good use of my time, worrying about that." SO, I am just reminding you that this is a chance for us all to wait expectantly to see and rejoice in God's provision, which will be amazing, timely, and perfect. Love you girl!

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    1. "...amazing, timely and perfect provision." I love that and will be praying and watching expectantly for it. Thank you, dear Katrina, for coming all the way from the East coast to TX to love and care for the quints and their precious parents.

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  2. Praying for God's provision. He knows.

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  3. As always, my thoughts and prayers are with all of you, especially Seth. May the Lord God who has brought him this far finish the good work that he has begun.

    Love to all,

    Gail Boemker

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    1. Thankful for your reminder that our triune God does indeed finish what He begins. He is indeed "able to complete it."

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  4. praying! ah, my heart hurts for you all. you are amazing. BUT God is even more amazing and when you have hit the end of your rope (each and every time) there he is. STILL working powerfully. praying fervently for another gracious provision and miracle for your sweet family.

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  5. I have been praying for your family. Early Childhood Intervention is a service available to your family for free through a State of Texas grant. They can assess the babies and set up a service plan where OT, PT, Speech, Developmental Specialists, respite, etc come out to help out. It might be something to look into - you can refer yourself or a doctor can do so - To make a referral, you can call: 817-446-8000 (local) or 1-888-754-0524 (toll free) Monday-Friday, 8am-5pm. I used to work there, so I am familiar with the excellent in home services they provide for pre term babies and others that might have some developmental delays due to early birth or disabilities. Continuing to pray!

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    1. Yes, I agree with the above post, the hospital case worker at our hospital set up a meeting with ECI for us as well, they took care of all the paper work & came to the hospital to meet with us, for convenience, & talk about what needed to be done with Cortlynn. They were going to have speech, physical, & occupational therapists come to our house, once she came home. We also had an O2 specialist who would come to our house & help us with the management of her oxygen needs. We also had her signed up for SSI, which is Social Security Disability, preemie babies and also babies with "chronic" health issues, (bad lungs qualify) for this & thus will let them qualify for medicaid, no matter what your income may be. I was a little leary of signing up for these, because I just thought we shouldn't because we aren't "low income", but I finally realized, it is best for the babies. & hey we deserve help as much as anybody else. :) SSI is very helpful, medicaid will pay for everything medical related that your insurance will not cover & you can even sign up for medical transportation, (going back & forth to NICU or for medical appointments) you can get paid for mileage. This can be back dated a little bit, so you might want to check in to this soon, to help with all the traveling back & forth you have done so far. Another thing you might want to look in to is CSHCN Children with Special Helath Care needs, you can read about it at www.dshs.state.tx/cshcn......paper work is a little tedious, but if they qualify, it is supposed to really help out once they come home. Hopefully some of this info will help you guys out, I just assumed your hospital had informed you of these. Still praying for you all! I'm really excited Seth may be coming home soon!!!
      Nichole Doty

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    2. These are excellent ideas. Our preemie qualified for SSI, which covered her medical expenses. In our state we also have the Early Childhood Intervention. It is an excellent resource. Like others have said your social worker at the hospital should definitely be able to help out. He/She might even have other ideas or know of other programs in Texas. It will all be worked out. :)

      Can't wait to see pics of all 5 babies at home together.
      Sarah

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  6. Lord, the situations with Seth's health problems and now insurance issues seem so immense and difficult, but, You know all the issues and are so much bigger than they are. We lift up the Jones family, Lord, and ask that You conquer their fears and frustrations and give them peace and patience as You work all things to their good and Your Glory. And, please provide the volunteers they need to function, and help the babies to be content and sleep as they should. We praise You and thank You for all of your blessings. Amen. NKL

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  7. Carrie, don't worry, not having insurance coverage will work out. Years ago, we didn't have ANY, and our son's $250,000. stay at CMC and heart surgery was all paid by Medicaid:thanks to taxpayers. (For us not having any insurance at that time was a blessing.) It will all, ALL work out...Rom.8:28 became my "best friend"...God continue to bless...

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  8. Know God has everything in His ultimate control. He WILL provide for your financial needs. Some states have "catastrophic" health insurance for children with chronic medical problems, I would ask the Social Worker at the hospital about the state your in and if it's available or not. My grandson has this insurance in Michigan and the State covers all his medical costs and recently purchased him his first wheelchair. It is a blessing for sure. Do not think for one single moment you are not expected to be stressed out from time to time. Look at how much you and Gavin have been through already with these precious children. For ANYONE to think your days are filled with patience, roses and rainbows is crazy. We're talking 4 babies at home and 1 with serious medical issues to deal with each and every day. And in the mix trying to keep Isaac "front and center" instead of being pushed to the back of the line just adds another "layer" to the issues.

    I'm praying harder for patience, for those around you to realize that when your not quite as patient as you would like to be they recognize that and give you a big hug. Although said often "God never gives us more than we can handle" needs to be said yet one more time. It WILL get better, God WILL provide! You are doing an amazing job under some very critical and difficult circumstances...."this too shall pass". And as always praying for Seth....always praying for Seth.

    A good, short "read"... http://www.gospel.com/blog/index.php/2010/10/07/todays-devotional-why-does-god-allow-his-children-to-suffer/

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  9. I can only imagine your emotions right now. Prayers for paitence and grace are for you.

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  10. God knew about little Seth's need way before you did and He planned a solution for it as well. Just keep trusting. I've been praying for your little ones and especially Seth every day.

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  11. My daughter went through her federal representative when she applied for SSD. Mike Rogers had a person that walked her through the steps and she was approved the first time through.

    God provides. When my husband died, I didn't have any back up resources and God provided more than I could ever have thought possible in ways that still astound me.
    Judith

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  12. Ask for the hospital to apply for Medicaid for him.. given his birth weight and his needs you might get approved.... Also you might want to get a copy of his medical records and apply for SSDI (social security) for him if he qualifies for SSDI he will then automatically qualify for medicaid. Talk to the social worker at the hospital, she will help. Praying for you

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  13. I always keep your family in my prayers. Are you able to apply for state insurance, MA, extra or Social Security. These are options that have helped my family or other familes I know of in the past get there children home and there special needs care paid for. I know all to well about maxing out on care each year. Prayers daily that god only gives you what he knows you can handle and than you get that last bundle of joy home.

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  14. Will keep on praying hard for your family.

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  17. I've been praying all day after reading this post...You two are going through a very difficult time, mentally, physically, emotionally, and spiritually....All the ups, joys happiness, and downs since August....Anyone going through what you have been through and are going through, would be feeling the same.... God knows Seth's needs, months ago and now...Sometimes all we can say is "Lord, I do not understand, but I believe"....I pray that more help comes you way, during the fussy and the demands of 6 children...But most of all you two Gavin and Carrie, that each of you are in God's hands, and he will help you with patients,and peace...Please Lord help they keep their eyes on you,and each other,, give them rest Lord and the space alone and with each other..to be strengthen by you....
    My heart goes out to the both of you..My husband and I adopted a baby that was disabled,,,he is now 32yrs old...he has had major health issues all his life, with lots of ER visits , DR visits, and Doctors not knowing what to do until 2010... because he cannot talk,and him being in pain,,he would act out with behaviors and scream....through the years, we also had two biological daughters. I guess what i'm trying to say is many times, our relationship was strained, and we were tired physically and emotionally ...Wondering where God was...and what he was doing and how long could we hold on...But we had to keep coming back to God and say WE CANNOT do this alone...We don't understand but we believe, and would apologies many times to each other for the times we were inpatient or hurt each other...GOD HAS BROUGHT US THROUGH..and our marriage is stronger because of our Son and the difficulties we have been through... Our Son is now on a diet that helps him not be in pain, and we have help in our home about 8 hours a day plus a wonderful day program...He has his own life and friends... It's hard to see God's plan when you are in the middle of everything,,, But God IS there carrying you two through this.... Enjoy what you can, and place the rest on the Alter of God....Maybe I've said too much...But my prayers are with you from Dayton Ohio...

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  18. Happy Birthday Isaac Hope you had a wonderful day. How old are you now? Hope the pizza was wonderful. What kind of cake? Mine favorite is angel food. That is what my Mom made for all 5 of us. Still a favorite. Ask your Mom and Dad to hug you for us. Thanks for helping your Mom and Dad so much also. Kiss on all the babes for us too.

    The blog said it was 70 degrees at your house. We live in southwest MI and it is 18 degrees. Zero when we woke up and we got another 4 to 5 in of snow last night. It is gorgeous outside.


    Take good care of yourself - extend your birthday as long as you can. Love and Prayers - Dean and Vicki Hermann

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Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

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