Monday, July 19: Update

I hit the wall today so this one is going to be quick.

The Sandman has finally caught up to me. The three and four-hour nights of sleep have left my sleep reserves at a deficit. It was difficult to keep my eyes open today and everything looked like a bed. And now I’m ready to crawl into bed, which is rare because I don’t often get to bed before midnight.

Claire is already asleep. She knocked off around 8:45 PM today. She is having a harder time adjusting to the feed changes than at previous feed adjustments. So we are moderating her feeding a bit to give her stomach a break.

Aside from the digestive discomfort, Claire was very alert today. Her eyes were open and searching. Her face was often relaxed and pensive. Her muscles are showing some rigidity relief as well. Her left bicep is not as spastic and her left foot is more nimble. These two areas have been the most troublesome and it’s nice to see some positive changes.

We will continue the fight against muscle spasticity this Wednesday when Claire goes into the operating room for her botox and phenol injections. We are all looking forward to the benefits that come with these procedures: Claire’s rigidity should be greatly diminished from them. We feel that a portion of Claire’s continued agitation can be attributed to her muscle discomfort. The injections should alleviate the stress and pain in her muscles and we hope they will improve her demeanor.

We have a Care Conference tomorrow morning followed by another pool therapy session. This will be our last Care Conference before discharge. We hope all goes well and we continue the charge toward home.

Thank you for your support. Good night!

22 thoughts on “Monday, July 19: Update”

  1. Please Lord, give this family what they need……a healthy little girl!!!!! Lord just lift her little body to you and heal her and bring her back whole to her family. That’s my preayer everynight!!!!
    I pray also for the strength that Mom and Dad need to make it through each day. And for her sisters as well.
    Please god reunite this family!!!!! Claire we are sending angels your way baby girl!!!!!!

  2. Hi Tyler and Tiffany. I am a friend of Monica Castro. I have a miracle baby who is almost 3. When I was fighting against infertility the only thing that gave me comfort was to know that no matter what the future would be, that was a God that loves back the ones that love him. Whatever happens, be what you want or not, can you imaging how would that feel without God??? Be strong, you have an almighty God that is watching over you in a very special way. I hope I could hug each one of you now as my tears came down. God bless you!

  3. So glad to hear about Claire’s progress. I will remember her and she goes ino the operating room on Wednesday and hope the procedure only further her progress.
    I pray you will have a very restful night of sleep and soon you’ll be able to sleep more then the 3-4 hours. I have no doubt it’s hard to get.
    Still praying for you all everday.

  4. Praying! I hope that you will get a restful sleep tonight.
    Hoping that the results of the injections will be promising. My Goddaughter has them (she has CP) and the results have been amazing!
    Praying for continued strength and wisdom as you continue on this journey.

  5. We don’t have anything profound to say-just want to send you our love and prayers-thanks for sharing so much thru your blogs-You are an amazing writer, Tyler-absolutely amazing-take care-

  6. What awesome news and progress! Thank God! And we haven’t yet seen what He will do today and tomorrow!
    We’re continuing to pray.

  7. Hope you and your family can get some much needed rest before bringing Claire home. I pray you will have a pleasant experience after bringing Claire home. I’m sure you’ll all feel much better having her home. Sweet dreams!

  8. I hope you get some much needed rest. We are praying for your family several times a day. I feel as though you all are a part of my family. I sometimes laugh at myself because when I tell people about Claire and your family, I make it sound like we are related and yet we have never met. I guess that I just feel so close to you all because I can see into your hearts and minds through your daily post. I thank you for that. We will continue to pray for all of you daily!

    In Him!

  9. Tyler – As I was partaking in one of my many Dove chocolate square moments yesterday at work, the message inside really spoke to me about Claire. It said, “Even a small pebble makes ripples”. I know you recently mentioned her recent triumphs are small; but small victories are how wars are won. At three-years-old, Claire is showing signs of strength that possibly a thirty-year-old would not have. She, and the strength of your family’s bond and love, are testimony’s to God’s power. Look at how many people that you haven’t even met, are now praying for Claire daily! If that isn’t God’s power, I don’t know what is.

    The small pebbles that Claire is currently throwing into the sea of her illness, are stirring up ripples that will eventually create a tidal wave of blessings to heal her. I just know it!

  10. Hope you got a good nights rest, Tyler. I pray that you woke up replenished.
    Are they going to sedate Claire for the injections, or how will that work? Is Heidi feeling better? How are her and Autumn doing. I imagine it is a big adjustment without your mom there. Although, it is one more step toward “normal”, if that makes sense.
    Love you guys,

  11. ever more you are in my prayers.
    reading your words of your mom picking you up with a hug and helping you “walk” is so heartfelt.
    I will ask my kids to pray for Heidi that the tensions ease for her as Claire is slowly showing positive signs…
    get some rest and know there are many of us praying.

  12. Surprised you don’t hit the wall more often; stress like this can drain even the biggest reserve tanks bone-dry Sahara-desert kinda DRY!
    I remember praying for God’s strength often, A LOT; Psalms was home for me.
    Interesting that Botox helps rigidity; we tend to associate it w making the face seem rigid, emotionless. We’re excited about the treatments:)
    Prayers up! Get some sleep.

  13. Yep – muscle spasms HURT [ and make you crabby ].
    Good luck tomorrow Claire!
    Care to the caregivers; love and prayers to all.
    Susan Davison

  14. Good to hear of the little strides with Claire. Will be praying for her tomorrow with surgery. Rest well. Cathy

  15. Good luck with these last few days and steps to going home. The journey continues with great hope.

  16. I’m another one of those “you don’t know me people.” 🙂 I pray for your family, cry with you, and smile at your victories. I’m glad to see that you are blogging and taking photos along this journey, as I think they can be a source of comfort in helping you see how far you have come when all you can see is current spot that has you bogged down.

    I’m sure people have told you many times through this process to remember James 1:2-4: “Consider it pure joy, my brothers, when you face trials of many kinds, because you know that the testing of your faith develops perserverance. Perserverance must finish its work so that you may be mature and complete, not lacking anything.” Unfortunately, God doesn’t say “if” we face trials…he says “when”. While the trial isn’t fun, or what you expected out of life, remember that God is shaping your family into the people he wants you to be – and that alone is cause for joy.

    My continued prayers and support are with you.

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