Thursday, July 8: Update

Claire slept well last night. It could have been because of the long day full of intense activity. It could have been because she didn’t take any naps. It could have been because she didn’t get much sleep at all the night prior. That’s the fun part with Claire’s sleeping: it’s hard to isolate a single variable because so much changes day to day. I don’t think we’re really going to be able to nail down a solid sleep schedule until we get her home. We may get close but it will always be tenuous as long as we’re in a foreign environment.

Claire had a relaxed day today following her good sleep. We had our first equipment consultation today and ordered Claire he own wheelchair and bath chair. We also learned that we may get a standing rack at no cost from Texas Scottish Rite. We’re going to test it in the next few days and see how well it works.

Claire spent the rest of the day chilling out with Tiffany, Alex, Laura, Autumn and Heidi. Everybody reported that Claire was less agitated and subdued than days previous.

I couldn’t comment myself because I was back in the office today. After catching up with my team, I spent the remainder of the day talking with government agencies. We learned that we do not qualify for Social Security disability benefits, so our Medicaid coverage is contingent on a Texas children’s disabilities program. We have started the process which we expect to take two or three months before our eligibility is determined.

Government bureaucracy is only rivaled by insurance bureaucracy. Our case manager has been great; however, we still find ourselves wrestling with the intricate, small print in our policy and making sure that items are billed correctly. I want to make sure that we get a jump on potential problems early before they get too far into the billing cycle. While I don’t care for the number crunching, the insurance company serves as a reasonable proxy for my frustration and aggression from the whole ordeal. The ubiquitous insurance company and government agencies are my faceless punching bags on which I can loose my displeasure. It’s therapeutic for me.

Overall, things feel like they’re slowing down. We know they aren’t and attribute those feelings to the mindless rhythm in which we find ourselves. We feel like we’re in a sort or limbo just waiting for the next big event without knowing exactly when it will come. It’s draining.

We are looking forward to a nice night of sleep to recharge our reserves. My mom is with Claire tonight and we hope that they both establish a new sleep streak.

Thank you for your hopes and support. We hope your Friday caps off a good weak and welcomes in a great weekend.

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25 thoughts on “Thursday, July 8: Update”

  1. Sweet Dreams Baby Claire! You and your sisters and Mommy and Daddy are always on my mind, and in my heart. I am still praying so hard for you baby girl. You are an angel amongst us! Love Hugs and Prayers to you all!

  2. There is a little known secret within most insurance companies, and that is that they are counting on you to give up your fight for the things that they do not want to pay. Point blank, if they are balking at paying for something, then tell them that you want to file an appeal for it. It creates such a paperwork nightmare for them that they usually cave in the first round and pay.

    Also, you might want to ask someone at your insurance company if they have a preferred durable medical equipment supplier. This can cut your frustrations to almost nothing, because if they have one and you use them to get Claire’s equipment the insurance company will usually pay their entire portion with no hassle. (Of course there is still the copay to cover, but at least you won’t find yourself in the position of having to pay for everything.)

    I know that the Medicaid and Texas Children’s system is hard to navigate, but if you can get face to face with someone you might make quicker headway. Even harder, but try taking a few pictures of Claire with you. Trust me, if you are sitting across the desk from another parent and they see your child, they will think of their child and hopefully the process will go more smoothly for you.

    I know that you all have a lot of people who are helping you on all angles, I am just hoping maybe some of this advice will help you as well. We will continue to pray that God opens all the doors that you need to walk through in the coming weeks and clears a path for you. Hope your family rests well tonight.

  3. “The LORD himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged.” – Deut 31:8. Praying that you guys will stay strong in the midst of disheartening trials and find hope in the small victories of each new day. We love you guys.

  4. We are thinking of you all daily!! Glad that Claire had a calm day!! We pray for continued progress…sending positive thoughts and prayers your way!!!

  5. Hi Tyler and Tiffany

    Have you also thought about contacting the Shriners they have hospitals for crippled children, do surgery to help them and supply durable medical goods I believe to children that are in need of such things. You might want to check them out before you break the bank account for all the things that you will need. Any child is eligible until they are 18 I think it is. Well worth looking into. Here in Portland OR they do lots of great things for kids with no charges to the parents. I looked them up and they are also in Texas. I don’t know how close to you kids is the only problem.

    I have a feeling the pool helped a lot with Claire’s sleeping. We are so happy to hear she had a good night. Hope that she gets more time in the pool to help relax her and make her sleep well.

    Pray for you all and that God will help you along this rocky road.

    Tyler congratulations on finding such good punching bags. I to love to take it out on the insurance folks and they hate it when you contest their choices so contest away, don’t give up on them and you might be surprised at how many you win.

    Hugs to all,
    Janice & Eddie

  6. We are still with you and are still praying. Our little Emma (4) continues to include Claire in her bed time prayers AND dinner prayers! Great job Claire. Hoping you all get some good rest.

  7. Tyler,
    Don’t give up on the SSI; they are notorious for denying the first, second and even the third time. You still may not qualify, but don’t take no for an answer with the first request.
    I’m glad to hear of all the sleep Claire is got, I hope she and your mom are sleeping well (as I write this at 11:31 PST)

    All my love,
    Aunt Mary Ellen

  8. Hang in there. It can be very overwhelming. And full of questions about who is getting benefits that shouldn’t and who needs them and can’t get them… It was very hard on my brother and us as he waited then the person got fired who was his case worker then the papers got “lost” and each time required a long waiting period…. every doctor can write off a occasional patient as long as his other patients are on whole able to pay. Sometimes they can discount a few things…. My brother went through every dime he had and then some. I think there needs to be a Claire fund started.

  9. I cover your family throughout the day with my prayers. May the “wars” over the billing be swift and few. Do not give up! We will carry you when you are weary, we will lift you up when you are to laden with this to walk. We are covering you with prayer continuously. I hope that Claire had a peaceful sleepover with Grandma.

  10. Tiffany and Tyler–

    Marty is an expert witness for Social Security; however, he doesn’t work much with children’s cases. He said to keep pursuing. You can also ask for a hearing. You can call Marty if you need to. Your mom and dad should have our number.

    You are in our continual thoughts and prayers.

  11. Hey – I can certainly understand your frustration with the government process! You can call your State Representative and your Member of Congress if you need help. Both offices will have caseworkers on staff who spend all day helping people navigate the government bureaucracy. If you aren’t sure of the phone number, go to http://www.votesmart.org and put your zip+4 in the box in the upper right hand corner. This will give you all your elected officials and their contact information. Hope this helps!

    Amy

  12. Still reading your post daily and my kids pray for Claire, Heidi and Autum on a daily basis. We were in Destin last week and the boys learned a respectful fear of the waves. Your words are so encouraging and since I’ve been in the medical field since 1990 I feel your pain w/insurance and government agencies. As you well know the Holy Spirit is our ultimate healer and as Jesus as your guide HE will allow for care that bypasses all earthly standards! May the power of God’s love continue to hold fast to your family Tiffany and Tyler! We love you guys!

  13. Tyler,
    As for a normal sleeping routine, Claire will sense that she is home, surrounded by familiar things, sounds and people and it will be easier for her to sleep. That is what we find every time Riley is brought home, always on oxygen, pulsox, feeding pump, etc. She just has learned to sleep through everything and it is a blessing.
    Also, thank God for the Texas children’s disabilities program and Scottish Rites hospital. They really are a lifeline so it is worth the time it takes to get the benefits.
    Praying for continued strength and small miracles every day.

  14. Tyler & Tiffany and family, I’m praying for you today, that God’s sweet presence would infiltrate the mindless rhythm and draining parts of your day, that he’d grant grace as you deal with the frustrations of gov’t and insurance details, and that you’d have restful sleep tonight.
    From a psalm of David: “Here is something I am still sure of. I will see the LORD’s goodness while I ‘m still alive. Wait for the LORD. Be strong and don’t lose hope. Wait for the LORD.” (Psalm 27:13,14)
    We’re waiting and hoping with you,
    Anna and family and friends

  15. Tyler and Tiffany,

    Had a wonderful visit with your grandparents, Tyler. We prayed at dinner time for Claire, and checked for your updates daily. In fact, the only time I could get pictures of the two of them together was when they were reading the updates, they’re so busy!

    When I went on SS disability, I got turned down twice. I had to get a lawyer (on contingency, and I went to free Legal Aid to locate one who does nothing else and knew the ropes). She told me that by law you cannot get SS disability for two years after the time of the disability. Then you get a lump sum retroactive to the time of disability, and payments going forward. That keeps the govt. from having to pay for people whose disabilty turns out to be short term, and also discourages those who won’t persevere. You don’t get Medicare until you get the SS disability. At least that’s how it worked for adults in 1997. It may be different for kids, and the law may have changed in the meantime. I had some bad words to say about the process. But other posts reminded me of this, so I thought it might be helpful for you to know.

    When I became disabled, I spent 5 1/2 months total in the hospital and rehab. Joann’s and my brother Hank got the hospital to write off a considerable part of that bill. Maybe you can try that route. That’s no help going forward, of course.

    People seem to be giving you lots of other good options.

    Prayer also helps, of course, and you’ve got lots of people praying for you, many more than you know. That little Claire is such a trouper, and while it may seem to you that progress is slowing down, she may just be gathering her strength for the next big push.

    God bless you all. The Holy Spirit will carry you through, hard as it sometimes seems.

    Love,
    Dodie

  16. I have been away for a few days with family and am back reading like crazy to see how things have been. I continue to pray as does my family and friends.
    I pray that the investigation goes smoothly and your nerves are calm. I also pray that Claire’s rehab gets easier on all of you…

  17. Like several people, I do not know you personally but discovered your story through a friend of mine. I’m amazed at your strength and more importantly, the love that you have for your daughter and family. As a mother of two, my heart aches when I read some of your entries but Claire is so lucky to have you as an advocate and a father. Words cannot always ease the pain but know that I’m praying for Claire’s continued improvement. God Bless you. God Bless Claire. God Bless your family.

  18. I had to laugh at your comments about the government agencies and insurance companies. it reminded me of my husband, who has little patience with bureaucracy and tends to go after such entities with a vengeance. Your description of them as “faceless punching bags” was poetic though. And frankly, the experience probably was cathartic and long overdue. Hang in there. So many questions and mounds of frustration. But Claire is obviously making progress, boosted by so much love from family, friends and caregivers. While you’re there every hour, know you’re backed by hundreds, if not thousands. Just like in the Verizon commercial! 🙂

  19. I was a consultant at a large insurance company and I wrote software for their legal team that determines win factors of claim cases. Be very diligent if and when they disallow something; they’re waiting to see if you just accept and go away or maybe just contest it once. Document every call and who you spoke with, and then do everything in writing.
    It helps if you find groups that have already gone through it, help you expedite, introduce you to some amazing resources…

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