Saturday, August 7: Update

The streak ended today. Claire started to reflux and lost her last meal of the day around 5:45 PM. While the episode was similar to the first two, we did not need to call emergency services. We were aggressive with our measures and had Claire’s airways clear in a matter of seconds. Switching to action-mode in such a short time frame and for such a quick burst still taxes our energy reserves; however, today’s event was much more moderate than the previous two.

We also realized a pattern is forming that is independent of Claire’s food volume. Claire’s plumbing has been irregular since the accident. When her feeds began while we were at Medical City, she was prescribed a laxative called Miralax that we use on an as needed basis. We gave Claire a dose today and she was agitated all day. Tiffany commented that every time she gives Claire Miralax she seems to have a challenging day. After Claire vomited today, I asked Tiffany if her previous episodes coincided with Miralax doses as well. We have a sneaking suspicion that they do. From an anecdotal perspective, the Miralax instigates digestive action that makes Claire uncomfortable and her vomiting could be apart of the chain reaction. At least that’s what I’m hoping. Because if Miralax is the culprit, then these episodes will be even more manageable. We cut out Miralax today. We will use more traditional methods to clear Claire’s colon: we’ll increase the amount of free water in her system and use baby food prunes to hasten regularity. We hope we have stumbled on a solution.

This minor blip today was couched amongst a very busy day. I spent the first half of the day working on Claire’s standing frame. I took the frame apart, treated all the rust spots with naval jelly before painting the frame over with rust protecting paint. Every joint and bearing was oiled and lubricated. Every surface was cleaned. We now have one of the premier standing frames on the market in great working order and in like new condition. I ordered a single replacement part which will arrive this week. Then Claire gets to take her first test run. We’re excited.

Autumn also have her second to last basketball game today. Heidi and I went to watch and cheer. We also took some photo equipment to capture the team photo. We grabbed the image before the game and the team was all smiles. Had we taken the picture after the game, expressions would have been different. The girls played hard, but they were soundly beaten. They were dragging by the end of the game. It presented the opportunity to have a discussion with Autumn about character and perseverance. She didn’t want to run at the end of the game. She now knows that her dad expects her to run when it’s hardest and I hope  she begins to expect it of herself.

This weekend seems to be passing us by. There just doesn’t seem to be enough hours in the day right now. We hope your weekend is giving the opportunity to rest. Thank you for thinking about Claire today.

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17 thoughts on “Saturday, August 7: Update”

  1. Dear Tiffany and Tyler and, well, all of your family — I have never written but have been following your wonderfully written journal since not long after your Claire’s unfortunate near drowning. You now have your new daily rituals and one of mine is reading your words … words sometimes brimming with hope and other times aching with the day’s reality. You all need to know there are people out there in all walks of life thinking of you … thinking of Claire, eyes welling with tears and whispering words of hope for you all. I cannot imagine the angst, I cannot presume the fear, but I can root for hope, I will expect the best for you. I am the father of three girls and cannot imagine myself in your shoes. I would hope I could soldier on as you all have done, but am not convinced I would. It is obvious that your perseverance, hope, and unwillingness for anything less has been exactly what your Claire needs. Tomorrows are unknowns, but today you can rest comfortably knowing that you are doing everything possible for Claire and for you. –Dave

    1. Such beautiful words from Dave. Tyler, you always thank us for supporting you and thinking of Claire and yet we should thank you. As the Mimi of five girls I can’t imagine your pain. Your words touch my heart and I pray for your sweet Claire to recover. You are an amazing writer and you help all of us to put trivial annoyances in perspective. Sending strength and hope to all of you.

  2. while I hate to hear claire having a bad day, I am happy that you may have found the reason!! I will say an extra prayer tonight!
    Congrats to Autumn for playing such a great game. I look forward to hearing how the stander works out. Have a great night, and sleep well.
    kristen

  3. When you mentioned sharing with Autumn that “her Dad expects her to run when it’s hardest”, I couldn’t help but see what an example you and Tiffany have been of that very thing. There is definately a time to stay in the game and give it your all… To run when its hardest. Doesn’t the the Word say to ‘run the race set before you’, Praise God, with Him , we all, will finish the race..and finish well, even when its hard. You both are persevering well.

  4. Thanks Tyler for takng the time to post. Each night it is part of my routine as the day closes. We are out of town and I sure miss seeing y’all. Please tell the girls I love them. XO

  5. I am glad you might have found the reflux culprit. I agree, using more natural methods to help Claire should be much easier on Claire’s system than the chemical stimulants. I hope your week goes well. I continue to keep you all in my prayers!

  6. I am always sorry when Claire has a difficult episode but am hopeful that eliminating the Miralax will put an end to the reflux. Trust your instincts on these things. I am praying for a quiet day of peace and healing for all of you.

  7. Tyler and Tiffany, Your actions of “running when it’s hardest” are so powerful. Often times to our children, our actions speak so much louder than our words. What a wonderful example you have been to all of us and mostly to your girls of this very principle. God is using you in amazing ways and blessing us all by being a part of your
    trying journey.

  8. So much trial and error – good for both of you for thinking outside the box when it comes to Claire’s digestion. You know her best.
    I’m excited that the stander is getting ready to roll – did it come with a tray? They’re handy to put toys on, and when she’s ready, pudding and foods for Claire to explore.

  9. There is a product called fruit-eze that may help. Although a bit expensive you could make your own version in a Vitamix blender. Someone also recommended noni berry juice to me, although I haven’t personally tried that yet. And a friend recommended a producted called Neocate to me yesterday although I haven’t had a chance to really look at it yet. I’m always searching out natural alterntatives too. Hoping and praying for Claire each and everyday. God bless you always.

    Stacy, Chris & Little Noah

  10. I found your blog through a forum and have been following for a month now. Your words and struggles are an inspiration to me. If someone could contact me, I would like to make some meals for the family. leah.cole @ yahoo.com.

    Thank you.

  11. I had an early birthday celebration Saturday, and one of my wishes before I blew out the candles on my cake was for Claire’s full recovery. Just want you to know that many of us hold you dear in our thoughts and prayers.

  12. I pray that solves the reflux problem. And I know if it doesn’t, you will figure out, or be led, to the solution. Tyler, I loved reading about the care with which you took apart and put back the stander–clearly you enjoyed doing it! Your mom knew just how to connect what you told Autumn about “run when it’s hardest” to what Paul told the early Christians. She is so wise–and she and your dad taught you and your siblings well. From Tiffany’s dad’s comments, she had a similar upbringing. That is serving you both well now on this journey. Love, Dodie

  13. It was fun to hear how u worked on the stand, such care n attention to detail…kinda good depiction of how u all hv tackled this challenge! KUDOS!!

    Prayers for refreshment n more strength, grace n quick best answers to issues that arise:))

  14. In regards to the Miralax, my son has had the same difficulty. We switched over to Benefiber in his Sunsweet Prune Juice, some canned pears (in their own juice), and more water. This seems to do the trick.

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