Sunday, July 25: Update

We took our first walk tonight around our neighborhood with Claire since we’ve been back. Claire watched the sky and flowers while Heidi, Autumn and Esther ran through the sprinklers. We enjoyed getting out of the house and watching Claire observe her familiar surroundings. It was a nice cap off to the weekend.

Claire has settled down a lot since she got home. She wasn’t able to fall asleep at the hospital while any activity was occurring in her room: that has changed at home. Claire has fallen asleep twice in the living room while we were playing games or watching movies. She has been much more calm and collected, spending significant parts of the day just watching and observing us and her surroundings. She is also sleeping very well. Claire fell asleep last night at 8:30 PM and woke up at 8:00 AM. She didn’t wake up at all in the night and had an easy morning with plenty of time to wake up.

We’ve spent a lot of time breaking in our new therapy equipment with Claire. We like the new toys and how they enable us to work her out. Claire doesn’t share our enthusiasm. She has been doing well with her sessions, however, she still doesn’t care for the exercise monotony and strain. Despite her dislike for the work, she continues to work hard. She is showing more improvement and flexibility along with decreased rigidity. We are excited to see how well she does at her new therapy sessions.

Those sessions begin on Tuesday. We solidified our outpatient therapy schedule on Friday. Claire will be doing therapy three times a week for one and a half to two hours a day. One of the sessions will include pool therapy since we saw such great results while we were at OCH. This week will give us the opportunity to meet Claire’s new rehabilitation team. We are eager to grow our support group and have them meet Claire. We’re excited for this next step.

We continue to educate ourselves and plan for Claire’s recovery. We are reading the Glenn Doman book that one of the commenters recommended and are planning to use it as a template to develop Claire’s at home rehab program. We believe that Claire is able to bear more intense therapy than the professionals are able to predict: we’re with Claire all day every day and see her more alert than he doctors do. Her outpatient caregivers may not see her at her optimal time and we want to make sure that we’re being as proactive and aggressive with her care to maximize her recovery. We will be discussing this with her new therapists and soliciting their insight on Doman’s methods.

It’s been a busy weekend. We are getting glimpses of what our new routine will be like, and still trying to recover from the energy depletion the last eight weeks. We thank everyone for the support and thank you for your continued prayers and hopes. I will continue to update the blog on a daily basis and hope big changes are coming in the next few weeks and months.

Advertisements

31 thoughts on “Sunday, July 25: Update”

  1. Sounds like a blessed day.

    Can you clear up something? I was under the impression that Claire had lost her sight. And obviously, you’re saying she is seeing okay now? Prayers continue!

  2. Tyler & Tiffany,
    I’m so excited for you all, that’s such great news that Claire is home and doing better already. And nice that everyone is able to sleep through the night.

    Continuing to thinking and pray for all of you!

  3. Tyler,
    Do you know when you’ll start going back to work? I know that may not even be something you’re thinking about right now, but I was just curious.
    g

  4. I have been keeping up with Claire’s progress and todays message at church (Irving Bible church) talked about how we have a big GOD who can answer big prayers and I instantly thought of Claire. Our God is big and my big prayer is for a complete recovery for this sweet girl.

  5. How wonderful!!! Keep praying, keep believing, and this little girl will outperform everyone’s expectations!! She is so young, and her body has so much potential to fully recover, with God’s help and guidance!! She is so resilient, you guys have a great strong family, and God is so powerful!! We are praying for you!!!!

  6. I am so happy that she is home early and doing so well! That brought tears to my eyes. People underestimate the power of home and family as far as healing goes. Awesome!!!! I am so excited for you guys. This is a big step! 🙂

    Still praying!

  7. In my heart and my prayers I knew that Claire would respond positively once she was home. Hospital setting are the pits. Staff continously interupting at the most inconvient time and you really can’t rest there. Like I said before in my postings “There is no place like”. Claire will cotinue to surpass the diagnosis that they Dr. have giving, they seem to aim low. Claire is a fighter keep pushing her to the max. Only you know your child’s potenial and you will know when to pull back. So stay strong Tyler and Tiffany , press on, the Lord is guiding your path. You are both His children and He will show you favor. Love you…..

  8. This is the most wonderful news; I can just picture the look of shock and awe on your other daughter’s faces as their little sister came home! Our God is a mighty God indeed! So glad Claire is doing so well at home. Continued prayers for all of you as you adjust to a new normal.

  9. So good to hear how well everything is going with Claire at home!
    In every situation, there’s God’s part and our part. We can’t do His part and He won’t do our part. He is the one who causes favor and communication to happen and gives us God connections with people. That’s what we’re praying will happen with you and the new team He’s giving you to work with for Claire’s therapy and recovery. Don’t you love how amazing He is?!

  10. We prayed for Claire at our little country church yesterday. We are so glad to hear you have her home and around family. God bless you all and may little Claire gain strength each day until she is running and playing with her sisters. Janet Myers, Tunnelton WV.

  11. We’re so excited that Claire was able to come home on Friday! That’s awesome. How wonderful it is to be together again as a family under one roof. Hopefully this past weekend will be one ya’ll will remember as very special.

    I still read the blog and think of ya’ll daily. Hopefully in this next chapter, ya’ll will start to get more rest now that Claire is home. Your strength and ambition for her therapy will make such a difference over the long term.

    All the best,

    Karen

  12. so glad she is home! I’m sure Claire is happy with the change…hospitals are such a beating…no one can actually rest there.

  13. I’m so glad that you are all together at home again. I continue to pray for your family daily. Get plenty of rest and continue the path that you are on. God has a wonderful plan for all of you.

  14. So glad that you are home and settling into a routine. Our son spent 8 weeks in the hospital and came home with very similar deficits as Claire. That was 2 yrs ago and many hours of therapy later. It is a very difficult road, but I am sure all your efforts will enable Claire to rehabilatate. We would highly recommend Hbot as we had very dramatic improvements with this therapy. Our son has a carepage under MatthewTaffera (no space between his first and last name) I pray that you settle into a great routine and for Gods healing for Claire. I would be happy to talk to you about anything that may help with your journey. My email is listed above.

    Sherri Taffera

  15. I’ve not been able to visit the blog for awhile, but your family has not been far from my thoughts and prayers during my absence. I am so glad to see that Claire is home and doing well. It must be a relief not to have to be running back and forth so much now. We are still praying for a full recovery for Claire and strength for all of you. Thanks for keeping us up to date on her progress.

    Vickie

  16. Tyler and Tiffany,
    My two kids are the same age as your older ones. On my blog, I made a list of all of our favorite books that we read this summer. I ordered a copy of one of each of them to be sent to your house (Emily Shoup passed along your address). Since our kids are the same age, I thought they would probably like them too, and even if they are too old for Claire, maybe she will like the pictures. So when you get a box from Amazon, that’s what it is.
    Naomi (Hancock) Haverland

  17. Praise the Lord your family is all home now! That is great news! We’ll continue to pray for total healing and an amazing recovery. I’m sure she’ll recover even faster in the comfort of her familiar home. May the Lord shower you with comfort, strength and healing during this new stage. Go Claire!!

  18. Hello,

    I, like others have been following your blog. I live in Michigan and heard of Claire through some MOPS friends. I would love to see some pictures of you guys again! It helps me to pray for you all to put a name with a face. We here in Michigan are praying for God’s hands to wrap your family, giving you faith and hope.

    Blessings,
    Tammy

  19. So happy that you are at home with Claire. I know the strain of having someone in the hospital for weeks and the pain of not being able to be with children at home at the same time. Hope the wonderful uninterrupted sleep pattern will continue for all of you. God Bless!

  20. Ah, sleep, blessed sleep! I hope Claire’s sleeping through the night meant her parents did so too. May it continue as your family settles in at home. So glad you are blessed to all be there again. And that you will soon have a new set of folks on your team to help Claire. You’ve learned so much by now about being in charge of her care and enlisting the specialists when they can help–that was clear in this post, compared to your frustration at the begining of your time at OCH. So many people’s prayers will continue to undergird you every step of the way in the days and months to come. Dodie

  21. I’ve been following your story and I’m very happy that Claire has improved. I’ve never seen you mention how old Claire is.

  22. No place like home! Lovvvved the update!

    Agree the aggressive way is the way to go, paying attention to good technique & form & alignment. Playing music n color engages whole brain n helps w boredom…

    Prayers up for new page, new chapter:)))))

  23. This is so encouraging!!! It sounds like Claire feels safe now that she’s home. The improved sleep for her is such a positive! I will be praying that all other areas of her recovery start to show the same benefit from her being home. Thank you for keeping us all up-dated. It means a lot but, speaking for myself, I don’t want it to be a burden to you. I have confidence you’ll get new info out as soon as you have some and are able, so please don’t be pressured. You, Tiffany and the family have had enough pressure in the last weeks for a lifetime.

  24. Yay!
    Claire is home!
    Yay!
    More sleep for Tyler and Tiffany!
    Yay!
    Continued inprovement!
    Care to the caregivers; love, hugs, prayers to all.
    Love, Susan D.

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