Wednesday, August 18: Update

Claire had another good day. We’re seeing a pattern emerge. We’re excited and anxious at the same time. It makes me recall having a baby again. I remember times with each of the girls when we would think we were making headway only for the baby to change on us. I’m happy that Claire is doing well right now but holding my breath hoping a downturn isn’t waiting around the corner. It’s hard to rest with such conflicting feelings.

While the inner turmoil continues, it is abating as Claire gets better. I’m not having to check on Claire as often each night and my sleep cycles are improving. Aside from the infrequent renegade night, we are all starting to get more rest.

Autumn and Heidi are getting excited for school next week. We are happy for them yet we mourn this summer. This was Heidi’s last summer before starting school. She received a bigger education in these two months than she will at school for the next nine. We wish we had two more months with them both before the year begins just so we could do some traditional summer family activities. We’ll be hoping and praying for that next summer.

But until then we have a lot of work to do. Thank you for you hopes and support. Goodnight!

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13 thoughts on “Wednesday, August 18: Update”

  1. Tyler and Tiffany~
    I am so glad that Claire had a good day. I continue to think of Claire throughout the day as I am praying for a few special littles ones in my life. And I’ll hold Autumn and Heidi in my thoughts as they start school next week. My oldest son started kindergarten a few weeks ago…it’s such a huge deal.
    God Bless you both.

  2. Your post sounds very encouraging and I’m glad things seem to be settling down.
    I pray every night for Claire to get better and I will include Autumn and Heidi in those prayers as well. They sounds like they have been real troopers. Heidi as a fellow middle child has a special place in my heart! I hope they have a great 1st day of school and that Claire is out front waiting for them to come home.

  3. I hope the girls have a great first week of school and that Miss Claire continues her improved patterns for you all! My thoughts and prayers are with you as always!

  4. We are praying. And rejoicing with you and your family for each big and small step forward. Read Isaiah 42.3 this morning and thought of Claire:
    …a bruised reed he will not break,
    and a faintly burning wick he will not quench;
    he will faithfully bring forth justice.
    God is gently working grace into each of you, including Heidi.
    Also the five verses of the hymn, “How Firm a Foundation” aptly apply to you and yours. Press on!

  5. Glad to hear everyone is getting more rest. May God continue to restore your all daily. May you be filled with His hope and encouragemnet to see every day as a new begining.

  6. I am so glad to hear that you are getting some rest. I am also happy that Claire is doing well. The love that you both show for your children will replace any family vacation that you could have taken. I know you want to give the girls a fun family experience but know that your love will be the lasting memory for them. We will continue to pray for peace for you all.

  7. was good to see you guys yesterday and to see how Claire has progressed since I saw her last. You don’t notice as much when you see her everyday. I too will join in with the others that the Hippo therapy has been one that has helped Elizabeth as much as any and it is also her favorite… glad you found something close. Praying for you guys daily.

  8. Great news, Tyler! I’m also hoping and praying that Claire’s days continue to be good and that she steadily progresses. Hope the school year starts well for Autumn and Heidi. Praying for good rest for all of you.
    Love,
    Susan

  9. Sounds like there’s a ton to be excited about!!! Love that’s Nana to enjoy the new changea besides being w all of u which is wonderful!!

  10. Tiffany and Tyler, the Lord gave me this word for you. You are deeply loved, His banner over you is love~

    With much love & prayers,
    Phoebe

    To My Dear Children, Tyler and Tiffany

    I have not forsaken you. Though you may walk in the valley of the shadow of death, I say to you fear not! For I have beheld your sorrow, I have carried your pain in the Palm of My Hand. See the scars; they were borne for you, for Claire, for the very grief you bear. My children, you are not alone. Have I not said “I will never leave you nor forsake you?” Never means for all time, in all times, at all times. My dear precious children, I AM with you in the night watches, when the morning breaks over your weariness, when you slump in despair over the noon day, when it seems you cannot endure one more day…
    And I would tenderly say to you I AM Here. Still. Though you fight Me, and rage against Me. I know your anguish. For that very reason, I bore the scars on My Hands.

    Now, I would say to you, My dear precious children. I AM not deaf, and I AM not silent. I hear every unspoken cry of your heart. And I have resounded through eternity Yes and Amen! And it reaches down to you now. Do you hear the echo, Yes and Amen! It is the echo of life overcoming death. It is My Voice and I have triumphed for you. I have triumphed over death, over despair. Do you hear the echo of My Triumph? With great joy, I have overcome and My Voice shouts Victory. I have overcome!

    Listen now, My dear precious children. How I love you. With great joy I AM pleased to give you the keys to My Kingdom. Yes, I have given you authority through My Blood to enter My very throne. Come boldly, for everything I have is yours. With great joy, I give you all you have need of. Yes! All…I have already overcome. Is there anything I would withhold from you? For you are My dear precious children. What do you need? I AM your Heavenly Father and I love you with a precious, everlasting love. My love for you is perfect and complete. My joy is made perfect when you abide in Me. Abide in Me, My Precious children for I long to show Myself strong on your behalf. Your joy will be complete and I will give you rest. You will know Me in a way you have never known Me before. For I long to reveal Myself to you, I long to walk with you and show you things you do not know. I long to walk along side you and fill you with the power of My love. For before the world was made I knew you and loved you.

    Nothing is impossible for Me. Is anything too hard for Me? Be still and know that I AM GOD! I AM the Great Shepherd. I lay down My life for My sheep and I raise it up again in Victory. And I say to you, I have walked in the valley of the shadow of death for you. Now I say to you fear not; we have already overcome!

    Deuteronomy 31:6
    Psalm 23:4
    Isaiah 49:16
    2 Samuel 22:7
    Matthew 6:8
    Psalm 28: 1,2,6,7,8,9
    2 Corinthians 1:20
    Psalm 47:1
    2 Corinthians 2:5
    John 16:33
    Matthew 16:19
    Hebrews 4:16
    Luke 15:31
    Luke 11:11
    John 15:11
    John 15:4,7
    Matthew 11:27,28
    Jeremiah 33:2
    John 17: 24, 26
    Romans 8:29
    Luke 1:37
    Jeremiah 32:17, 27
    Psalm 46:10
    Hebrews 13:20
    John 10: 11, 17, 18
    John 2:19
    Ephesians 4:9
    John 16:33
    Colossians 2:15

  11. Hello. I am Courtney Toomey, Julie Nickell’s sister in law. I am a resident physician, so I work quite a bit and haven’t commented on here. I read your comments daily, and your family truly inspires me. I have a daughter about the same age as Claire, so your story has really touched me. I am a resident in PM&R (Physical Medicine and Rehabilitation). We are trained to work with patients such as Claire. Although I as still in training and I recommend that you talk to Claire’s physicians who know her entire medical history, I can say that I would highly recommend the baclofen pump. I have seen amazing improvement even within a few hours of it being placed. It is a wonderful medical advancement. I know I do not know you or your daughter, but I wanted to give my opinion. I look forward to seeing how things progress. I pray daily for your entire family.

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