Friday, August 13: Update

Everybody is in bed now and another work week is over. After I laid Claire down to sleep, I walked into the kitchen and Tiffany asked me, “Was that a sigh?” I told her it was. I don’t sigh much, but this week was a long one and that sigh may be the one break we get before the night begins and we hit the reset button tomorrow morning. It’s going to be a busy weekend.

Tiffany and I have been brainstorming ideas to help relive Claire’s pain and discomfort. Our meeting on the 25th seems close to others, but 12 days is an eternity for us. We can’t stomach the fact that a solution may exist to ease Claire’s pain but we have to wait for it. So we started thinking up ideas today. We are going to try our new approach through the weekend and see how Claire is on Monday. We have a percussion massager that we started using today hoping it will heat her muscles and break apart her tone. We made sure to up her water intake today to deal with the amount of acid being released into her system from the muscles. We paired the massager with deep tissue massages and her regular stretching regimen. We moved Claire into the bathtub after one session for a long soak with hopes that the buoyancy will alleviate some of her spasticity as well. By the end of the day we were seeing some improvements, but the jury is still out on whether they will be long-lasting or not. Her feet aren’t pointing in as much and when she relaxes, her feet fall closer to a neutral position.So far, so good.

We also repurposed the massager for another recurring issue. Claire’s body still hasn’t developing a normal plumbing schedule. The Miralax was sidelined because of the vomiting, but now she’s backed up. The prunes and water levels have not solved the problem. We gave her a smaller dose of Miralax this evening and hope it will alleviate her discomfort.

We feel relatively comfortable bringing the Miralax back into the game because Claire has not stopped having eating problems since we took it off the solution list. Claire’s reflux has diminished, however, she still has mild episodes of reflux. Today was the first episode when I was not home. Tiffany and the girls called emergency services to stay on the precautionary side of things and I’m glad they did. Claire was fine. The firemen and the paramedics checked her out and gave her the thumbs up. They also cleaned up the house to help Tiffany. They’re our family now. Family take care of each other. They continue to take care of us.

We’re going to plug away through the weekend and hope to break through Claire’s tone. We’re aiming to see if we can eliminate the knots and tightness and stop the self-perpetuating cycle the muscle rigidity brings. We thank you again for your support. We’re looking forward to seeing many of you soon. Goodnight!

8 thoughts on “Friday, August 13: Update”

  1. Not sure what you are able to give Claire, but other ideas for the plugged plumbing problem would be cantelope and syrup. Holding her in my prayers.

  2. My name is Amy, and I share in your grief and desire for rehabilitation as my own daughter, Claire, suffered a severe brain injury 7 years ago. My husband and I heard about your Claire through an email from Lisa McBride, a friend of ours, who attended your church. Our Claire is currently recovering from the baclofen pump implant, and she is doing so well. Thank you, God!! We had tried botox for over 6 years, casting, oral Baclofen, and in April chose to proceed with the Baclofen trial. We are pleased so far, and I would be happy to chat with you and/or answer any questions you may have. We are already seeing good results.
    God bless!
    Amy Edwards

  3. I’m a friend of a family who attends your church. I’ve been praying and following your family’s progress all summer. I also have a suggestion for helping Claire’s plumbing, Aloe ferox, also called “cape aloe.” It’s a little different from common aloe vera and more effective for plumbing. If you think it would help, please email me and I can have my family’s business send you a free sample supply to see if it will work for Claire. I keep up with your journey daily and am lifting all of you in my prayers

  4. Just a thought for her muscle tightness, as doctors may have already mention this to you, I have chronic myofacial pain, and basically that means muscle knots and adhesions tension all over my body, i see a chiropractor who works with both muscle and adjustments(which is very rare around here) I was wondering if you have tried to ice her muscles for 20 minutes and then stretch, repeating this every twenty minutes on and then off,
    also 5 minutes of ice then stretch and 5 minutes of heat for a total of 20 minutes
    the adhesions that try and keep the knots around the knot of the muscle are not allowing the muscle tension to keep away– another technique for this is rub some lotion on her leg or where ever the tight muscle is, and then take (i use the dull end of a butter knife) and rub up and down over the area with adhesions ,this helps break up the lactic acid build up that is keeping the muscle from relaxing.
    Just some other home remedies that i use to keep inflammation at bay in the body is Bromalain< this is a pinapple extract in pill form to take between meals(if taken at meals it is an enzyme- which maybe will help with acid reflux– you just never know
    Just wanted to throw these ideas out, and this may be want Claire does not need, I just wanted to give an idea incase it would

    Still in my daily thoughts and prayers(about the acid reflux is there a pepcid type medication that would help if she took one of those daily)
    May God give you comfort this weekend and His Peace as you try your new therapies out

  5. I don’t know if you have ever used a chiropractor, but I know a baby that had severe “plumbing” issues and it was resolved by an adjustment at the chiropractor. It was amazing because the parents had tried all the medications and nothing would relieve the issue. I am not sure if Claire could tolerate the visit, but I am a strong believer in chiropractic help. It might help with the rigidity too.

    I am still keeping your family in my thoughts and prayers. You guys are awesome and you are doing an amazing job with your girls! Have a wonderful weekend!!

  6. I know everyone and their dog will have suggestions for you… and I’m not even sure this is one that would be ok for Claire, but I’ve recently been turned onto a tea called “Smooth Move”, also sold as “Get regular”. It has Senna leaf in it, and works wonders. If it IS something you can use for Claire, I would ease into it, it’s very strong, only steep for 2-3 minutes, and if that doesn’t help, next time let it steep a little longer.

    I hope you find a way to get her “movin'” again!!! Blessings and prayers you guys!

  7. Dear Tyler i know the decision about the baclofen pump is hard to think about they told us the same with dylan but we did some research and found some oral meds that can be crushed and puched through the mickey button. we use oral baclofen and tizanadine and also diazepam its has been great for him sure we still have a bad day once in a while (maybe once every 4 weeks) but that is so much better then the alternative or what we think. we were always worried about its another surgery, the pump can break down, and its another thing in him. i hope this helps. we are going to och this wednesday we see dr. raji she is dr. mcdonalds partner i like her alot better then dr. mcdonald. we are praying for claire and your family. if you ever need anything please let us know. also i wanted to let you know we just recieved a new wheel chair for dylan last year and we love it check out the kid rock wheel chair. its really light in weight wise and will last for up to five years for growth. i hope this info helps. god bless you and your family.

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