Monday, August 2: Update

Claire made it through today without refluxing and in an improved disposition. Yesterday’s events prompted us to begin researching alternatives to Pediasure in earnest. G-tube parents had reached out to us previously with offers to discuss dietary solutions: we started taking them up on their offers today. Tomorrow we will be starting Claire on a diet that consists of baby food, carrots if you’re interested in the entrée selection ( thank you Laura for the recommendation). We will be keeping Claire on the carrots for a prolonged period as her digestive system begins to acclimate to real food again. We hope it helps assuage the tummy volatility.

Today marked the first day that we did not have a live-in guest during the past two months. Esther ended her week-long stay yesterday, leaving Dallas’ 105-degree weather in exchange for Colorado’s high 80s and thunderstorms. She was missed the minute she left the house. Esther overwhelmed us. She cooked, cleaned, played and prayed for our family. She was here for the first time that Claire’s G-tube popped out and suctioned Claire’s nose so she could breathe during yesterday’s episode. She cleaned soiled sheets and cleaned the soiled couch when Claire’s diapers didn’t do their job. She helped Tiffany clean Claire’s mouth and brush her teeth. Esther came down her with a mission. It wasn’t apparent to us when she got here, but we were clairvoyant when she left: she was here to serve us in any and every way she could. She did. She served us in more ways than we could have come up with. Esther is invaluable and Gordon is a rich man for it. We love you Esther.  And Gordon, we love you too.

I have also been grossly negligent with mentioning that Tiffany’s sister Krissy left last Saturday. For that, I apologize. Krissy was with us when we brought Claire home. She helped us get the house ready for Claire’s return and stayed up many late nights listening to us and crying with us. Krissy came down here the week before her own daughter was scheduled to go into surgery. Coming down to be with us in spite of the fact that she was caring for her own kids shows us how much she loves and cares for us: We love her equally so. We are so thankful she was able to come and we hope to see her again soon.

Tomorrow marks week two of Grapevine therapy. We’re scheduled to receive Claire’s standing frame this week as well. I’ll be sure to include pictures the first time Claire takes it for a test drive.

Thank you as always and sleep well!

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12 thoughts on “Monday, August 2: Update”

  1. Hurrrraaayyyy!!! For it being a better day. We are so thankful that you all are blessed with such wonderful family and friends to support you! Praying for more days like today!!!

  2. Tyler/Tiffany,
    Glad to hear that today was much better and wanted to offer up my food processor for your use in making baby food. It was a wedding gift and I have held on to it for when we have children so I can make my own baby food (my cousin tells me its the best and cheapest way to go!) If you would like to borrow it for now I can bring it over tomorrow or anytime just let me know! Also, after visiting with everyone last week and Tiffany showing me the weighted blanket that Claire has my mom and I would like to offer to make one. We have found a wonderful website with step by step instructions and would love to make one for Claire. I will need to know what weight she is to determine how heavy to make it and would like to know what her favorite color(s) are. Please don’t buy one, it might take us a couple of weeks to make it but we would love to do this for little Claire. Just shoot me an email me or message me on here when you have time!! Still praying everyday and sending all our love! –Doug & Jennifer Lupton

    1. Jennifer– It is so nice of you to offer to make her a blanket! How sweet! Claire is right about 30 lbs or so. Her favorite color is pink. Maybe you could do pink and white. 🙂 Good to see you the other day! Thank you for all your support. You have been wonderful.

  3. Hey!

    Long time no write and I am so sorry for that! I read your blog every night before I go to bed and continue to pray for Claire’s full restoration!

    Makenzie suffers from reflux. She has from day one. When you wrote about your 911 call yesterday I saw the fire men in my living room. They have come to my house numerous times for that very reason and it stinks! It will get better though!

    We have tried every formula under the sun as well and have now switched over to a blended diet. It has been a work in progress but Makenzie is doing much better and I feel so much better as well.

    If you are going to do a blended diet and use food other then baby food I would strongly recommend getting a Vitamix Blender. I tried a few others and it was SOOOO much more work. Vitamix will also give you a nice discount on a blender with a doctors note.

    I accualy wrote todays blog post on Makenzie’s food if you are interested. If you need any help please feel free to email me. Each and evedry kiddo is different but this is one subject I know way to much about!

    Tons of hugs and prayers from Colorado
    Pam and Makenzie
    http://www.makenziesmiracle.org

  4. Glad to hear you are going to try some different options for feeding Claire. I have two special needs boys both with severe reflux. One of my boys doesn’t do well with Pedisure . Davids drinks Vital Jr it is gluten and lactose free so you may want to give this a try. Also as I am sure you know keeping them up right for 1 to 2 hours after feeding is a must. My boys got so tired of sitting in their wheel chairs. This past month we got them the Tomato Chairs with mobile setting wedge. They love them much softer than Tumble Forms. You can see them on Adaptive Mall web site. Also in looking for equipment check out e-bay search on special needs I have gotten some great equipment at very affordable prices. There is a special needs jogging stroller on ther now used. I have those for David and Joshua also and they love going for walksin those. I am sure you will find out there are alot of things insurance and medicade will not pay for. Anyway I have been doing this for a while so if you want to ask any question on equipment and things what I have tried and what worked well and what didn’t I will be happy to let you know what worked for us. I check on you guys daily and you remain in my thoughts and prayers.

  5. Isn’t family Amazing!!!!
    May God really bless them richly for all their sacrifices they all have made.

  6. It is wonderful that you have so many people out there offering support and guidance! I am glad to hear Claire will be transitioning to real foods. I hope the process is easy on you all!! I continue to keep your family in my thoughts and prayers!

  7. I am so touched and blessed by your continued tender, loving care for Claire! The picture you posted today is precious. I pray for your continued strength as you walk along this path.

  8. Hi there Tyler and Tiffany. Great news on little Claire’s progress. So glad to hear you are trying real food. We changed jd to a blenderized diet 1 year ago this month and are amazed at his health and vitality since then. I commend you both on your courage in coming home, trying new things and ideas. I look at the progress you have made in just 3 months and applaud you both. We were so scared to consider this and that and believed every word the doctor told us could or could not happen or change in jd. At the end of the day, you know your child better than any dr and you know what God has laid upon your heart to do for her. I applaud your courage!!!!! To follow that small still voice and (as we say in my house) to “poo poo” what any “negative nancys” may say. Good job guarding your hearts and minds.
    Okay rambling sorry
    Check out these 2 yahoo groups. “blenderized-diet”. And “ponds”. (parents of near drowned). Both gave us great perspectives, advice and suggestions on tube feeds and foods to try. Lots of info on reflux, gastric emptying, venting and so on. I wasamazed to hear others use same terms that I thought was only the language in our world!!!! You guys keep up the good work. You inspire and encourage me with your posts. Call anytime. Beth Hartman 512-264-5224, John 512-947-8134. God bless

  9. So glad that you’ve been blessed by servant hearts like Esther’s and others. I pray that continues and that you feel the support and prayers of all of us. Amazing too how the tragedy you’ve been through has introduced you to a whole new “family” of caring ones who are walking a similar road and can share what’s worked for them or offer a listening ear. I pray you find the best diet for sweet Claire that she can tolerate well and that you sleep well when night comes.

  10. Thanks for the sweet shout out, Tyler :). It was my true joy and honor to serve you all…and I still don’t think it was enough. Claire has captured my heart even more (which I didn’t think was possible), and I pray the next time I see her, she’ll be running into my arms. I miss you and love you all dearly. Oh, and Gordon wouldn’t give me up to just anyone, ya know…only you guys 🙂

  11. Esther & Krissy were angels!! Love how beautifully & graciously they slip in n help help help..

    Prayers for more angels:))

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