Monday, August 9: Update

Last night was a long night that followed a long day. Because Claire has been increasingly breathing through her mouth and because she is unable to drink liquids, her throat is raw and swallowing is labored. We bought some chloraseptic spray yesterday because she can swallow trace amounts of liquid. We had mixed results with its efficacy. We also broke out our warm humidifier. That seemed to help.

The problem is that a solution to one problem creates its own set. The warm air humidifier made her room muggy and heavy. The moisture rested on Claire’s skin and made her sweat. This is not good. Claire doesn’t have the body control to shift her body during the night. The pressure points with the bed can cause bed sores and skin breakdown if we do not shift her on a regular basis; however, skin breakdown with Claire only occurs when her skin is moist. If she is dry through the night, we don’t see any signs of developing bedsores. Aside from waking up at odd hours last night – which is off for Claire – she also developed some mild bed sores because of the warm, humid air. So we killed the warm air humidifier.

But we’re still left with Claire’s sore throat. Claire woke up with a mild fever today and we decided to take her in to see the doctor. Claire’s thrush had returned and the prescribed treatment wasn’t working. The doctor thinks that Claire’s sore throat could be a product of the thrush moving further down her throat. So we picked up a treatment today to combat the thrush. We also picked up a cool mist humidifier with hopes that we can avoid the downsides that came with the other. We hope her throat stops giving her fits soon and she can sleep and breathe easier.

This typifies our new reality. Every day is an experiment. Cause-and-effect is difficult to determine and may take several days to reveal itself. But we feel like we’re getting a better hold on things. It’s an education about ourselves as we learn how much we take for granted. We don’t remember how valuable it is to breathe through our nose until a cold forces us through a night as mouth-breathers: the ensuing sore throat reminds us of the body’s proper, automatic function. We hope Claire can soon return to that mode.

Aside from these setbacks, Claire continues to show mild small improvements. She continues to improve her command response and seems to be making more effort to move her limbs with purpose. We are increasing the number of sensory inputs with her and she is responding well. We placed a large order for oral and speech therapy tools this weekend and we’re looking forward to incorporating some more aggressive at-home therapy in those areas.

Autumn and Heidi got to spend the day with our good friends the Schmiseks. They took our the girls to the library. Heidi was more content following Marnie Schmisek to the adult non-fiction section of the library to make her selections. Among her more interesting choices was the “Guide to Buying Pearls.” She’s been fascinated with pearls since my mom told her a story about clams. She has a big appetite for knowledge. I like that.

Tomorrow is the return to therapy. Please let us know if you’d like to visit Claire. If you’re so inclined, we would love to have you come. I’m going to work on getting a schedule set up via the blog. A number of people have offered to come read Claire books or sit and talk with her. We’d like that and think it will help her. I will let you know how we will coordinate visitors in the next week or two.

Thank you for all your hopes and support. You bless us.

Advertisements

24 thoughts on “Monday, August 9: Update”

  1. Loving that there are people are willing and want to read claire, tears come to my eyes as I would love to read to Claire– but I live to far away.
    I do hope that Claire’s throat heals quickly and that she is able to get some rest and same for you all.
    In Christ’s Love remembering to pray Healing for everyone.
    Have a Blessed Night
    christina

  2. I would love to visit Claire – is it ok that she’s never met me, or do you mean just folks that she is familiar with? The last thing I’d want to do is make her uncomfortable. I’d love to read to her. šŸ˜€

  3. What came to mind for prevention and help with bedsores was eggcarton foam pad and then fake sheepskin. Thats so cool about Heidi and pearls!

  4. Hi,

    Just read your update about Claire’s pressure sores. Here is what I have on my two boys beds ATP Pads Alertnating Pressure Pump Pads. Another benfit for David and Josh has been the pump makes a humming noise (like a white noise) and they sleep much better with it. They also make a gel pad for this but the air pump type worked better for us. They have not a a problem with pressure sores since we started using them 6 months ago. Most Home Health Care Store’s carry these and they are not super expensive. But I am pretty sure Medicaid will cover them. Hope this helps.

    Janet

  5. How I would LOVE to come read to Claire. I had a dream about her last night. I was staying with you guys, and when I woke up I went out to the living room and she said hi and she was eating fruit loops. Maybe there will be a similar futture post… I laughed about the humidifier, it is already like 110% humidity there-lol!

  6. Try using only distilled water in the cool humidifier. I don’t know why it works but you don’t get the mold and mildew issues!

  7. Guys, I also had a dream about Claire last night… And it was one of the dreams that was especially vivid and felt very real.. I dreamed that she was responding to drawings. Someone took a big sheet of paper, big black marker, and was drawing simple pictures in front of her: kitty, flower, etc… And she was watching, smiling, pointing at the pictures… It was so weird – all pictures were in black and white only, and she was very engaged…

    I also hope this will be one of the future posts from you…

    But yes, if you guys are ok with people you hardly know to come and read for Claire, I’d be happy to come and keep her brain stimulated by reading, drawing, telling her stories…

  8. I have been reading your blog and keeping up on Claire’s status. I am so amazed God has been working miricles with her. I look forward to your email everyday. I love to see how much she is improving. I had a suggestion. I saw that you used cloristeptic spray to help coat her mouth. I was thinking to just give her moisture you could use a spray bottle with just water. Just a thought that came to mind when I read your update this morning. I know she can’t really swallow much but that might help. also maybe a pedialite popsicle. Not sure if she is that far along yet. But maybe soon. Your family is in my prayers everyday. I think about your family and and how strong you have become. I hope that your days get easier and cna’t wait to hear more updates on Claire. YOur girls are so special and so strong. I love to hear how Autuam and Heidi are so helpful and loving. Those are some great kids. Take care. Thanks for listening to my thought. I hope it helps.

  9. Hi , You are all very strong and doing a wonderful job . I wondered if you have talked to anyone at the vitimin stores ? Aloe should help with the throat and stomach ? acidolhis is to keep the good yeast in the body ,when we have to take a lot of antiblotics.Another product out there is align , it is a probiotic , I am not a professtional , these are things I have learned from taking care of family members . Excuse my spelling , I am also not a teacher . Good Luck , my Prayers are with you .

  10. I just want you to know I continue to pray for Claire and for your family – even though I don’t leave comments. I read your journal everyday and must say I am impressed at your ability to relay what is going on and to continue doing everything you need to do. God is with you. I know that I know that one day soon Claire will be healed and whole and you will look back and see that God has taken what satan meant for harm and turned it for His good.
    God Bless you,
    Shannon

  11. I’d love to read to Claire if, as others who posted today said, you’re okay with strangers being around her. What a privilege to finally meet her! Keep us posted as to when, and thanks so much for inviting us.

  12. 1] can you use the humidifier in the daytime, for her naps, instead of all night? or maybe use it part of the night?
    2] curing the thrush should help a lot – praying it does!
    3] a big HI, HEIDI! and HI, AUTUMN! to the ‘big’ girls.
    4] I love pearls too!
    Care to the caregivers; hugs, prayers, and love to all,
    Susan D.

  13. Tyler,

    I received notification about your site from a fellow church member at Riverside Church of Christ in Coppell, and I have been following Claire’s story from the beginning. I would be honored to come and read to Claire or visit with her or your other daughters as needed. I am a teacher at Coram Deo Academy (main campus is in Flower Mound), so I can also work on homework with Heidi and Autumn if you need me to. I don’t teach at school on Fridays, so those days are always open for me. Please keep me connected to your “visitor blog” when you get it established.

    Praying for you all,

    Yvette Cavender

  14. Makayla asks about Claire all the time. I know she would love to come and read to her and see Autumn as well. Makayla is really hoping her and Autumn have class together this school year.

    You all continue in our daily prayers…

  15. THRUSH HELP!! When my daughter was about a month old, she developed thrush in her mouth from antibiotics. The typical “swish and spit” directions on her medication did not work due to her age, so the medication gave her an awful stomach ache. One of my friends recommended liquid yogurt in a bottle. We found Gerber banana yogurt juice and gave her a bottle of it at her morning snack time every day until she turned a year old. She NEVER had another bout of thrush even though she continued on antibiotics almost continously for the next 8 months. I hope this helps. I do know that they still sell this in the baby section at the grocery store. We are continuing to pray for you!

  16. Oh joy joy joy!!!!!!

    Thank you for the invitation for us to reach out to all of you, Tyler. I guess you have been doing that all along, but you are being so gracious about welcoming us even further.

    I will be delivering a dinner on Monday, August 16… let me know what time is most convenient for you and I will come by as planned. My work is just a few minutes away. I would love just thirty minutes of your family’s time. Sending love and happy thoughts to each and every one of you…

  17. You mentioned a while back about finding equipment on eBay for Claire. There is an assistive technology consignment in Edmond, OK. It’s called Movin’ & Groovin’. The phone number is (405) 255-5995. Their website is: http://www.movinandgroovin.net. I don’t know if this will be of help, but spied it in our “Easy to FInd for Speical Needs” catalog.

  18. hi again , this is just a small thing you may have thought of already , but cool washcloths on her face to help with anixety . the darkness and coolness helps with stress.

  19. We missed seeing Claire and the girls when we stopped by on Monday!! We would love to come visit… please let us know when it works best for you all and we will be there!! All our love and prayers – Karin, Andy, Marbella, and Milana

  20. The staff at Las Colinas Medical Center ED, still enjoys to follow claires progress. We are still praying for all of you. Even my wife loves to read about Claire and she texts me while im at work to give me updates as well. My wife and i would absolutely love to help you all out, we remember reading about claires bed sores and that a woman responded by saying that she uses ATP Pads Alertnating Pressure Pump Pads. Is this something that you are interested in? It would be our pleasure…to get this for Claire.

  21. So glad there are many local who will visit Claire. Sounds like some promising ideas from everyone on solving the thrush…
    I’m continually amazed at what grrrreat parents the girls have:)) Prayers always!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s