Our first hour of training as caregivers took place today. Tiffany and I were eager to learn about Claire’s needs and the tools to meet them. The session escalated when competitive opportunities were presented. I have to admit that Tiffany was faster at getting the correct dosages into the syringes. I, however, clearly took home the gold star after introducing a new technique to the nursing staff for cleaning the G-Tube lines. Our relationship has always had a healthy dose of competition beginning with the day Tiffany kicked me in the shins after a sound beating at air hockey. It was nice to rekindle that portion of our relationship today.
We were able to have some fun today after getting some uplifting news this morning. My mom stayed with Claire last night and was present when the neuropsychologist came to test Claire’s coma scale level again. We got a ‘confirmed blink.’ The test includes a light test for vision: the doctors shine a pen light into her eyes and check for pupil dilation and reaction. She will only blink if she can detect it visually. She did. Claire’s vision is improving. We pray and hope it continues to progress.
The results of the test came back better than we expected. Claire was previously scored a 1.8 on the Rappaport Coma Scale. We were amazed to see it had improved to 1.2. The score improvement came from the visual test and her auditory test. Claire had not reacted to the auditory stimuli in previous tests. She reacted to the ringing bell today. Claire also reacted better to pressure. Vocalization, olfactory and threat stayed the same. Overall, the test results showed that Claire is very close to the lower limit for ‘near coma’ and progressing toward a ‘no coma’ designation at an even rate.
Claire is still working on her sleep cycle. Her pattern changed last night. While she accumulated the same hours of sleep, they were more sporadic. We started tampering with her medication frequencies which may have had some effect. Tonight we will be doubling the dose on her seroquel which is an anti-anxiety drug that helps Claire’s agitation. It has been spaced out to carry her through the early morning hours. We hope that this normalizes her sleep cycle for her sake and the caregiver in the room. Everyone is getting tired and you can see the fatigue in Claire’s face.
Tonight my baby sister and her main squeeze, Brian, are coming out to stay with us for a few days. This will be the first time I’m meeting Brian. If his mom is any indication of his character, then the meeting should be a success. Brian’s mom sent us a package a couple of weeks ago that had charm necklaces with Claire’s name on them. They made Tiffany cry. While my sister has been tormented away from family since this began, I’ve heard that Brian has been taking care of her. That’s all I’ve ever wanted for both my sisters. So I’m looking forward to meeting him and only wish it was under happier circumstances.
38 thoughts on “Thursday, June 24: Update”
Glad you had a good news day! The day-to-day struggles aren’t over, but it sounds like you’ve done the right thing and allowed Claire to rest and heal…with limited visitors. She’s a beautiful girl…as I’m sure your other daughters are as well.
Good news! I am so glad Claire’s vision is improving!! I continue to keep your family in my prayers!
Thank God for small steps on the road to recovery. Way to go Claire!!! It is good to hear Mommy and daddy are having a bit of a contest for doing the right things towards your going home.
Hope you have a nice sleep tonight and more healing can take place.
God bless you all and be with you at this time.
Hugs to all,
Janice & Eddie
Very happy to read today’s positive report! So excited for the improvement in Claire’s vision.
Your family has touched my life very deeply just through you sharing your experiences thus far. Please know that so many people, even ones you have never met, pray for Claire and your entire family daily.
God bless you all.
Love from VT.
So glad to hear the good news you all got today! Still praying for more good news…
Touching you with many prayers and thoughts as you walk through your journey with Claire and all in your family.
Rejoicing with you over the good report! She is making amazing progress.
It blesses me to see the humor and playfulness in your recent updates. Early on in our journey I remember feeling guilty whenever I found myself enjoying life in the least little ways, but then I realized it would be much better for Jacob if I was healthy in body, mind, and spirit. So, for Claire’s sake keep up the shin kicking. It will help her thrive. 🙂
Praying for rest and that everyone settles into good sleep habits.
So glad to hear of an “UP” moment with all the ups and downs of your journey. I don’t know if anyone has commented on this yet, but, your writing style is so descriptive and amazing to read. Where do you find the words?! They make me feel like I actually know you and I don’t. Thanks for sharing your deepest feelings with all of us, as it allows the Claire Journal Followers to feel close to your family and pray for Claire and all of you as if you are part of our family.
Go Claire go!!! I just told mom last night I was praying for you guys to have a piece of encouraging news. I would say this qualifies;) One step closer…
Rejoicing with you about the good progress that Claire made today! YIPPEE SKIPPEE! Blessings to you all!
What wonderful good news! If spousal competition helps, all the better! Glad Bryanna’s coming; she’s smart as well as lovely, so I’m sure Brian will be great. The picture of tired Claire made me teary. I’m sure you and Tiffany are every bit as exhausted, so today’s prayer is that things will settle down enough for all of you to get the rest you so much need. Love and blessings, Dodie
Wonderful news!! The prayers will keep coming. Bless all of you.
Yeah Claire!!!! That is awesome news! We pray for continued victories like this! Keeping you in our thoughts, hearts, and prayers daily.
Yeah for Claire!!! The staff at First Presbyterian Preschool continue to pray for Claire and your family.
Hip, hip, hooray for Miss Claire today!! So happy that God is showing His glory through Claire’s improvements. Praying for a good nights rest for everyone!!
Always hoping for the best!
Good is good and he does miracles the same today as he did yesterday! Tie another knot and keep holding on so very tight! Praying for you guys! ALways on my mind!!!!!!
Much Love from Arizona!
I am soooo happy for ya’ll today! What a wonderful thing that her vision is improving!!! God is definitely good.
I don’t know you, but saw your story via facebook and have followed it daily since then.. The struggles that your family and Claire are experiencing are heartbreaking! I hadn’t seen many pictures of Claire until last week. When I saw the picture of her sleeping, I burst into tears.. I immediately took the picture to my daughter and asked her who was in the picture. She replied, “That’s me mommy, where was I?”. The two of them look like twins.. I can not imagine what you are going through! Please know that Oklahoma prayers are coming your way daily, for all of you! And very special prayers for Claire’s sisters as I know that they are devastated watching little sister go through this! I’m happy to hear Claire’s great progress! God bless you all!
This made my day. Such great great great news! We’re so happy about Claire’s amazing progress and we’re believing for more steps to recovery with each new day. Love you and praying always!!
We pray for you all daily!!! Stefan our 3 year old said to me tonight ” I get to say the Claire part of the prayer to make sure she feels better soon!!”. Very glad to hear about her progress!!
Small steps towards improvement are a good thing! I know this is such a roller coaster for all of you, and it can be tiring in so many respects.
Although we have probably never officially met, I do know Autumn from Landry. I teach fourth grade there, and she has always brought a smile to my face and heart. She is the kind of little girl that shows you that she comes from an amazingly loving and supportive family. I know this is tough on her as well.
I have a younger brother who is severely handicapped, so I have an idea of what it is like to spend day in & day out in a hospital setting. The worry, fatigue, loss of time, fear, and lack of good food wears on your psyche and your body. Also as a sibling, I know how it takes a toll on the kids as well.
Hopefully this won’t come across as crazy, but I would be more than happy to take the girls for an afternoon or evening or stay with Claire for a while (even at night). It is summer vacation, and I would love to help if I can/while I can/if you are willing/interested. Feel free to contact me at email@example.com if/when that time comes.
Either way, know that I am always on the lookout for updates and you ALL have been in my prayers since day one. Yes, there are many days to come, but we are all here for you.
Go Claire!!! Sounds like Tyler’s mom may be a good luck charm and should stay the night at OCH more often! I’m so glad to hear that your relationship is stronger than ever. Tyler talked about the great balance that you have when he first returned to the office. This strength is the core of your family and provides Claire the determination she needs right now. We should all learn from your example!
I am glad I got to see Claire today. It was wonderful to hear her cry. You guys are doing great pushing her through this. I will wait for the day to see her at home in her natural environment enjoying it. Remember dont give up, the road ahead has bumps but it will become flat and easier to guide through.
THAT’ S WONDERFUL NEWS! Made my day! Hugs
I’m so happy to hear GOOD news! It truly makes me smile!!!
My heart is broken for you all. Claire looks like a gorgeous little doll but does look tired. I am glad you had a good day and pray for more good days to come. Thank you for sharing your Claire with the world. Praying hard for a full recovery.
I pray for a wonderful day for you all, as I do for each and every day! Please know that as your replies may lessen, the prayers continue and grow. Thank you so much for continuing to post. Claire and you all are constantly in our hearts and in our prayers. I look forward to the day when we can all gather together in a celebration union/re-union, so that you all can wrap your heart and your head around just how huge our love for you all is! Lord, please let this wonderful family never lose faith, hope and love! pat 🙂
Such great news!!! Small steps in the right direction!
I loved reading about your moments of grace as a couple and as a family. I am sure God will give you more of those!
Prayers continue every day…
Hi! My name is Tammy and my daughter Rielli drowned two years ago as of July 3. She was revived and went through in patient rehab for three months. Her progress and experience is so much like Claire’s that, honestly, it’s very hard to read. I know where you are right now- you’re in hell. It get’s better…it really does. We received very little encouragement regarding Rielli’s future. Her coma lasted a long time, and although she could breathe on her own from the very beginning, she could not communicate, eat, sit, swallow, or see. Her posturing was very severe and she had to be heavily medicated for it. The journey has been long- but Rielli went into NORMAL kindergarden last September and yesterday I had the joy of watching her graduate to first grade. She sees quite well now, her speech is returning in leaps and bounds, she eats, walks/runs, and her old feisty personality is in full swing. She has not been unscathed- her movements are still jerky, her speech is delayed, she still has some issues with up close focusing…but she continues to beat all predictions and improve improve improve.
Here is a photobucket site with a lot of her pictures and even some video. I’m including a link to the video we made at one year. Please use me and my family as a resource if I can be of any help.
link to video:
Thank you for sharing your story. I visited your site and Rielli is beautiful.
It’s great to hear that Claire is having progress. It doesn’t matter if it’s little or much as long as it improves. Let’s continue hoping for the best! You all are always on our minds.
Your daughter and mine have played together a few months back which is why we know of your story.
I must say that this has been gut renching to think about. I can’t imagine how hard it must be to replay that day over and over again in your head. You must be able to feel every detail as if you could reach in your mind and touch them with your hand. Please know that Claires situation is causing glory to God in so many lives.
I must thank you for taking the time to share your world with us and the details you have provided through such an intimate situation. Know that HE is chosen your family and that each of you are already being an example of the gospel to the many who read your bog. The evidence of you constantly serving all of your family has not gone unseen.
I’ll continue to pray for miracles. Their really is nothing HE can not do. Faith Hope and Love….I pray all three are in an abundance in your lives.
We are so happy for you in DC!!! You are in many people’s thoughts across this whole country!!! Our prayers are with you.
What good news you had today. Savor each milestone. Claire sounds like a fighter and an amazing little girl. Know God’s angels are watching over her.
I enjoy your humor, Tyler, a healthy dose of competiveness never hurt anyone 🙂 And laughter is the best medicine, so keep it up.
Lift your weary soul to the Lord and may you be renewed with strength and sound rest – taking one day, one hour, at a time.
Tamara Wilkinson, VHA
What a beautiful and strong girl you have (her parents have provided wonderful examples for her and her sisters through this)! God’s purpose for strong-willed kiddos isn’t always apparent this early in their lives, but His pupose in giving her so much strength is very apparent. We are so grateful she is improving and pray continued blessings and healing for all of you 🙂 The Kay and Young Families
So very glad to read of Claire’s progress and hoping y’all get some rest and a good visit with your family. Praying every day for each of you!