Saturday, August 14: Update

I’m starting to come down with something that’s I’ve been battling all day and hope I can head it off at the pass by getting to bed before midnight. So this is going to be quick.

Claire had a challenging day today. It had been a few days since having a bowel movement and that contributed to an early morning wake-up call and a day of discomfort. We finally started seeing some action around 3:00 PM today and had four diaper changes in quick succession. We’re hoping this means tonight and tomorrow will be more comfortable for Claire. The reduced Miralax doses seem to be going well, and we’re going to pick up a pediatric suppository tomorrow since it’s easier on Claire’s stomach.

I completed the Basic Lifesaving Course for health care providers this morning. It is similar to the standard CPR course I took years ago with more hands on training. The instructors were great and the presentation commendable. The class did have portions that drummed up haunting feelings, particularly on the pediatric CPR portion for the training. Aside from that the class was great and I’m looking forward to Tiffany’s attendance.

Thank you for your continued hopes. It’s hard to stay optimistic on some days. Knowing we have an army of supporters helps us regain our optimism. Goodnight!

19 thoughts on “Saturday, August 14: Update”

  1. The hopes, the prayers and the good thoughts are being sent your way daily. Love and miss you all.
    Uncle Andy, Aunt Susan, Alec and Eric

  2. Dear Tyler, I am reading so much pain in your later posts… Not even just pain, but seems like small daily improvements and victories are fading somewhere, and it’s like you guys are stuck now… Thank God for doctors and medicine that saved Claire’s life, but we need so much more that just that…

    I’ve noticed a lot of people posting non-traditional recommendations now… I know this stuff is very controversial, because there is no cut and dry recommendations about those… They usually work for some people and don’t work for the others… That’s why when someone finds something that works for them, they swear by it, but science can’t prove anything because it just doesn’t work the same for everyone… But you will never know unless you try it…

    My take on chiropractors, acupuncture/acupressure and any non-traditional medicine is that if it’s un-intrusive and doesn’t interfere with what the doctors’ orders are – why not… I am sure there are a lot of people out there giving false hopes and squeezing money from people in despair, but I believe that if you research your referrals, you may be able to stumble onto something worthwhile… I’d stay away from herbs and supplements because they can interfere with medicine, but we all know that there is something out there that works for certain people … Nobody can prove it, but we all know it’s there… I personally swear by battling asthma with acupressure and breathing exercises which worked miracles for my 3-year old daughter, but it doesn’t work on everyone this way… I still use traditional medication, but the quality of life has changed tremendously… I know there is something out there that will make Claire feel better together with traditional medicine… Just making that quality of life better – that’s all that matters at this stage of recovery…

    That’s what so great about this blog – people just tell you what worked for them… If you feel it’s un-intrusive – try it… Maybe it will help… You’ll get hundreds of paragraphs of advise I am sure – listen to your intuition and stay open to all possibilities – even if you find just one thing that will make it a little bit better – it’s worth all the hours logged into reading, researching, discarding, etc…

    Do not give up hope. We are here to keep you going and keep you strong. I am glad people are posting things that worked for them, with respect to your “taking it or leaving it”… You have an army of people working for you – praying, supporting, sharing, and even looks like researching things… You obviously have the best doctors of Dallas working with you – you are in great hands here. But you do need to add something here – you know it, you feel it… It’s there, keep looking Tyler…

    Listen to your doctors, but keep your ears open to what worked for someone even if it makes no medical sense, and hopefully something will stand out for you… I just hope that people, especially those with similar experiences like yours, will continue bombarding you with their personal experiences, and you can just sort through the information on your own terms…

    I know it’s easy to say “Stay strong” but please know that we are all praying for Claire, you and your family, sending the healing energy your way, and I just know it does something here… Daily routine may try to grind you down, but every time when you feel down, think that every hour you put into your RN classes, every post you read here, every bit of information you get from someone – it benefits Claire. That’s what makes her better every day.

    We continue praying for your family, Claire’s recovery and your finding all the answers you need – you will know when you hear them. Trust your intuition in your decisions, and we will all keep you in our prayers…

    1. Thank you Olga for your thoughtful post. It is so nice of you to sit down and write such a lengthy encouragement to us. I appreciate it. I miss seeing you guys each week. Thank you for your prayers for Claire.

  3. your mom and dad came over to visit for a little while this evening. It was great to see them and chat. You and your family were the bulk of our conversation. We continue to pray and think of you constantly. G

  4. As I follow your story & pray for you daily I ask God to give you wisdom. Wisdom to know how to balance all your responsibilities & relationships. Take all the advice given to you & go directly to your Heavenly Father with it. He is listening & he will direct all your paths.

  5. Hi folks,
    I work with you dad up at Fedex, and was noting the issue of Claire’s BMs. I have a rather intense issue that is similar du to medications that I must take. My doc had suggested the myrlax, but i have found better relief with Phillips milk of magnesia, and it is much more compassionate with the tummy. I say this because the laxative effect is very good, but acts more like Pepto, although Pepto would do the opposite. If the physician feels it is no threatening, you might give that a try. All our love and prayers to you and yours,

    The Fletchers

  6. i have no wealth of wisdom to offer up. no tidbits of insight that might help. i’m just a faithful follower and prayer warrior for both claire… and you, her family.
    i too, can sense the exhaustion and frustration you must be feeling… press on through the routines, grab joy when it glimmers.
    praying for stamina for you… for this incredibly long marathon.

  7. I have found comfort during difficult times in Music from my church…”Be not dismayed what ever betide God will take care of u.” “Jesus loves the little children””Turn your eyes upon Jesus” “Trust and obey” and Jesus Loves Me…….Simple but true…….With continuing prayers for Claire and her loving and faithful family. Keep hopes alive.

  8. Tyler & Tiffany – I was on vacation last week and only got to check your posts a couple of times. I read of Heidi’s down day on my phone while waiting in a restaurant and teared up in the middle of a restaurant for what she must be feeling. I wish I lived closer and could meet your family. Claire’s progress sounds up and down but in the long run more up than down. I can only imagine how frustrating it is to want to speed up time to move the recovery along and know what your life will be like. We generally don’t get that option so… you keep on moving through each day and you have both are doing beautifully. You are going to have tough days and not so tough days. I hope you soon find the good days outnumber the not so good ones.

    My thoughts and prayers continue for you and your family.


  9. Andy prayed for Claire by name this morning at church. There are so many people asking God to heal her and to give your family comfort and endurance. I believe he can do it! I can’t imagine your daily challenges, but we are all behind you. Tiffany, I am available if you need childcare for the big girls! I will look at your play date site to sign up soon. 😉 Have a good Sunday as a family.

  10. Praying that the God of all hope will make His presence felt to you and your family in a mighty way this day. I cannot even begin to imagine the battle you are facing. May you find strength each and every day to continue and do what needs to be done.
    God bless you all!

  11. my prayers continue and I speak of your family often to let Claire teach others..
    Be comforted when you are too tired to pray, to worn out to take a sigh, there are those of us who pray for you, Tiffany, the girls and Claire…
    you are so patient- even though it is being tried time and time again… Claire is a lucky little girl to have you as a family and you are lucky to have her there to teach you all patience, unconditional love, and unending need to show empathy..
    thanks for sharing her lessons with all of us.

  12. Tyler, I’m glad to hear the class went well (or as well as can be expected) and it was a good skill refresher. We’ve taken a CPR class twice, but since it’s been a few years, we should probably go for a refresher too.

    You mentioned in a previous post that you’re exploring various options until your next consult on the 25th. I was curious if Scottish Rite Hospital may be an option. I’m not sure if they have specialists for Claire’s needs, but they do a lot with orthopedics and therapy. It may be worth checking into. They certainly have helped our son’s club feet, and they have many other specialties. Just a thought.

    All the best, I hope you’re feeling better.

    See you tomorrow.


  13. Hey just saw this truly inspiring video and I do believe you two have the fight and persistence that this father does. Different story and situation but you will see Claire to her complete healing and a wonderful life. Love you guys. Keep pressing on with God. You are an inspiration truly.

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