Dog Therapy

Today was a very good day. I left early and spent most of the day with Clare and Kris. Clare worked well with her therapists and showed a sense of humor many times. She likes to smile and to make others smile.


Something new today was when the therapist and I took Clare to the piano to see what she would do. She put her hands on the keys and started playing. It sounded a little like Jonah when he plays our piano. She moved her hands along the keys and felt them as they made sound. I played a cord and asked her if it was major or minor. She correctly answered major. Then I changed the cord and she said "minor". I asked her if she could play a scale and she tried to play cords starting with C. C, D, E, F, G, . . . she was able to find most of them and even sharped some of the notes to make them correct. Pretty impressive. I turned to Silent Night in the Hymn book and asked her if she could play it. Her mind was willing but her hands are not. They just don't work well together yet. I changed keys and played the tune in the key of C to make it easier for her and then put her thumb on C and helped her play it. She fumbled a little then picked out Silent Night by ear all by her self. The therapist was impressed as she used the fingers on her RIGHT hand in a more deliberate and controlled way then she has ever shown them. He said that she needed to spend time at the piano every day.


This afternoon Amber and Victor came to visit (Kris's sister and husband) and brought Clare's dog Scout for a visit. Kris wheeled Clare outside in the sun and she held Scout for quite a long time. She loved it. Scout cleaned Clare's face several times. It was really a lot of fun.

Today Clare was OK with not being able to remember everything. When she said "I don't remember" we would say that it is a good thing not to remember because there has been a lot of pain. She said at least once today that it is a good thing she doesn't remember. I hope she will remember this tomorrow.

Kris and Clare posed for a family picture (less Marley).

I took time to pause today and soak in the beautiful miracle unfolding right in front of us. I have heard of Priesthood healings all my life and have witnessed some, but never anything as magnificent or steady as the healing of these two love birds. It has been constant and comforting. Through all of the difficult times there has been an undertow of peace that has helped me know that it is going to work out. We don't know how it will eventually end, but that doesn't matter so much right now. We are enjoying the journey. There is so much to be thankful and grateful for.

Rebirth Déjà vu

Several weeks ago a co-worker told me that reading the blog gave her the impression of a baby chick fighting its way out of a shell. She likened the struggle to a rebirth and necessary but hard. I have watched Clare and have written about many of these challenging days as she struggles and fights with frustration to free herself from the fog that is holding her captive.

In the past week Clare has continued to make great progress but not without struggles along the way. I had no idea there were so many levels of awareness that people with brain injuries go through as they heal. When Clare was in a coma we got to know the coma scale that went from 1 to 15. Now that she is not in a coma we have been introduced to the “Rancho Los Amigoes Cognitive Scale” which goes from 1 to 8 and measures cognitive skills from “No response to pain, touch, sound or sight” (Level 1) to “Purposeful and appropriate” (Level 8). Clare is probably around a Level 5 right now. If you want to learn more about this you can go to http://www.northeastcenter.com/rancho_los_amigos_revised.htm

Clare remembers her past but seems more challenged with things that have happened the last 6 months or so. That memory seems to come and go with her agitation level. After a wonderful day of therapy and participating more than she has before, she engaged us in some conversation and during the questioning and answers she became more aware of things she did not remember. That really disturbed her and she became very distraught and tearful and kept saying “why don’t I remember?” “I can’t remember anything.” “I don’t remember you.” (Looking at me.) “I don’t remember you.” (Looking at her brother Nathan.) “I don’t remember you.” (Looking at Kris.) All the while looking scared and almost sobbing. She really does remember but when she works herself up it appears that her memory and brain go into protection/vacation mode. It is very hard for her, not to mention hard on those that are caring for her.

Clare is using her right arm more every day. The fine motor skills are not there yet but she is moving her arm. Her right leg is also moving better and transitioning from bed to wheelchair is much easier for her. It will be another 4 weeks before she can put weight on her right leg. She is also showing a sense of humor too. The other day her therapist asked her if she could tell him the goals they had set the previous day. Clare responded quickly to him that the goal was “to not have any more therapy.” The therapist said, “no that is not the goal,” and then noticed the big smile on Clare’s face and realized that she was teasing him. On another occasion Clare was scratching a lot and Kris was comforting her telling her how beautiful she was. Clare said, “even if I itch?” and Kris said “Yes you are beautiful even if you itch.” Kris went on to tell her that he scratches a lot and it is ok to itch. I asked Clare, “does that make you worry that you are ugly?” and she immediately broke into a huge smile and started shaking her head yes. Kris soon realized the joke Clare and I were sharing and we all laughed. Clare still has a quick wit and with time I am confident that she is going to be just fine.

Kris continues to receive physical therapy almost daily and is making progress. He is hoping he will be able to go back to work soon. The MRI and other tests on his heart came back good and they took the monitors back. What he really needs is to get Clare and him back to normal life. Sleeping in strange places and eating fast food can not help with recuperation.
With every advancement and progress there comes a struggle that Clare must fight through to get to the next round of challenges. We are so grateful she is making so much progress every day. It is like watching a glacier move down a mountain. It keeps moving and sometimes a big piece breaks off and we see more progress and rejoice. Most of the time the progress is ever so slight but we see it and are so thankful. It is wonderful to be witness to this miracle. I think there are many many of you that are the reason this miracle is happening. Focused faith can move mountains and in this case heal people. Thank you again.

Calling all Golfers

The thoughtful expressions of Kris & Clare's neighbors and friends continue to humble us. I will not get specific for fear of leaving someone out, but I want to thank those that have done so much. One of the most humbling things I heard was of a lemonade stand that some children did to raise money. Clare has a bag of coins in her room along with some beautiful cards from the children wishing her well. There have also been individuals that have given, a bank account set up, gift baskets, pizza fundraiser, silent auction, and on November 5th there will be a golf tournament to raise funds to help with expenses and ongoing therapy. Wow! I didn't go golfing this year, but I am going to dust off my clubs for this event. If any of you would like to come please do. It will be a fun day and I want to meet the community that has so openly taken my daughter in under their wings.

Kris & Clarissa Olcott Golf Tournament
Sunset View Golf Course
3 miles North of Delta on Highway 6
Saturday, November 5th at 11:00am
4 man scramble, 18 holes
$50 per person, includes cart and lunch
$100 Hole Sponsor
$240 Hole Sponsor including 4 man team
Prizes and Raffles

In order to plan lunch for all that will come please call ahead and reserve your spot/team.

Golf Pro: Todd Mullin
435-864-2508

Failed Surgery, but Good Things to Come

Clare's last surgery (we hope) was today. The plan was to take her blood filter out of her vein. They put the filter in after she got blood clots in her lungs to catch any other clots before they reached her lungs. She was put under for the procedure and was supposed to be done in 15 minutes. Two hours later, Kris was in the waiting room and still hadn't heard anything. It turns out the procedure took much longer than anticipated because they found a clot, so they decided the filter needed to stay. The doctor tried to reposition the filter so it wouldn't get too attached and could be removed later, but it was so firmly attached that he says it will have to stay permanently. I guess that means Clare's a faster healer than they expected-which is a good thing usually :)

She's back, a little drowsy, but doing well. They were waiting for this last surgery to remove her PICC line (her long-term IV), and she's also been eating better the last few days, so if she keeps it up they can take her PEG (feeding) tube out soon too. After that she will be tube-free!

Clare has done pretty well with physical therapy. She still can't put weight on her right leg, so she isn't walking but she stands and her right knee is bending more and with less pain. She still has irritated and confused moments when she doesn't cooperate with the therapists, but for the most part she seems to be trying her hardest.

We have always had hope she would get better. From the very first night in the emergency room when the doctors weren't sure what to tell us about either Kris or Clare, we have been comforted and somehow knew they would be okay. I still have no doubt they both have amazing things ahead of them! Here is a clip of a talk that has comforted me at times through this. It assures us that there are Good Things To Come.



p.s. In case you were wondering, I asked her and she said she is going to be a witch for Halloween! Guess we'd better start pulling together a costume for her-unless she changes her mind before then :)

Nine Weeks

Nine weeks. Looking back so much has happened. Last month we got excited when a finger moved on command. Now we get excited when she does something new with her mind. When we arrived last night and came into the room, Clare was not alone. Hospital beds are barely large enough to hold one person but somehow Kris had climbed in with Clare and they were snuggling and snoozing under a blanket. I suppose that if you are going to share a single bed you should be newlyweds. I hope they remember that there is a camera above them and the nurse’s station is watching.

Clare was the most interactive and responsive we have seen her. Not only did she answer questions, but she asked questions and spoke in complete sentences. At one point she teased her little brother Jonah with different things that she hoped would get a response from him. When we said things that were humorous, she smiled big and she looked happy and very natural. The big thing for me was watching her change from just responding to interacting and initiating conversation.

The battle of the week is nausea. Clare gets an upset stomach quite often which impacts what she feels well enough to do.

Most of the time we spend with her is sitting in a quiet room. She wakes and sleeps, in and out all the time. When she is awake we get a few minutes of interaction, but really try not to over stimulate her. She gets all she can handle in therapy. She is doing incredibly well. Every day there is improvement and we are so grateful for every little blessing.

Today in physical therapy she kept saying, “I want to go home.” She got mad at the kind therapist and loudly told her to stop and that she wanted to go home. She is starting to show some pushback to being here. This afternoon it was more difficult. She would not be consoled. If she was in bed she wanted to be in her chair. If she was in her chair she wanted to be in bed. She wanted to dance, to get on the floor, to leave, to go to the bathroom. . . . There was no comforting her. She is now so mobile that she can’t be left alone for her own safety. They did say that this stage would happen.

She is schedule for another surgical procedure Monday. They will remove the filter from her vein that has been catching clots. They put it in before her pelvis surgery and when she could not have blood thinners. Now that she can have blood thinners, they will remove the filter before it becomes permanently attached.

Scrap Metal

Yesterday was a great day! The fixators were finally removed. The procedure was quick and went very well. Clare recovered fast, and after she woke up had a very nice lunch. It was so good to see her eat. Kris bribed her with a chocolate malt...if she finished most of her lunch, then he would buy her a malt, AND HE DID! (If you come to visit Clare, take a minute and go to the hospital grill, they make the best shakes and malts. An Oreo malt is Clark's favorite, and Clare really enjoyed both the Oreo flavor and chocolate flavor. You will have to vote on your favorite!)Our next big goal is to get Clare eating enough that they can discontinue feeding her through the feeding tube. It would be nice to get her pick line and feeding tube out.

Clare is working hard at her therapies, and the Social Worker indicated that Occupational Therapy is her favorite. For all of us that know Clare well, that is no surprise. They have her working on the computer and moving arrow keys or the mouse in order to identify spacial relationships.

Today at Physical Therapy, Clare was making tons of progress. Without the fixators in, the therapist could have her roll from side to side. Kris said that she was doing really well, and loving it. Clare is improving everyday.

During this recovery, it has given me a chance to see Clare and Kris together. It is very obvious that Kris is devoted to Clare. He is very loving and patient with her through the good moments and the bad. It is just as obvious that Clare loves and counts on Kris too.

This process of healing is unlike anything that we expected. It is long and gruelling. We are just beginning with the intense rehabilitation period, and expect that we will be in this new facility for at least a month.

Kris and the medical staff are working hard at helping Clare make new connections for her short memory. We know that the long term memory has come through intact. She remembers everything from her early childhood and into her married life. But, she doesn't always remember where she is or the current day. We need to repeat things frequently. We ask her the same questions over and over. Repetition is the best way to help all of those connections reform.

Kris is continuing to recover too. He has been experiencing heart arrhythmia. His heart will start to race, and he will experience some chest pain. The episodes happen multiple times a day and last for about 15 minutes each. Yesterday, he was given a heart monitor that he will have to wear for a month. The doctors want to have a good grasp on what is happening with his heart. He has a doctors appointment tomorrow, hopefully we'll learn more then.

We continue to hear about the thoughts and prayers that go out to Kris and Clare. Thank you for all the continued interest and support. This is going to be a long process, but I have the highest hope that both of these kids will recover. I believe that this experience will strengthen their relationship, and prepare them for a long and happy life together.

A side note about the fixators...Kris wanted to keep them to show Clare someday. Kris joked that he is collecting scrap metal for recycling$$$. ;o)

Sunday, the day of rest

Today Kris and Clare had a good day together. A peaceful day with no interruptions by therapists. A singing group came to the floor and some priesthood members came by and administered the Sacrament to them in her room.

This evening we went down to visit. Annette and I took Jonah to the rec room / dining area on the floor and let Whitney and Jazlyn visit with Clare and Kris first. Annette and Kris then helped Clare shower and then wheeled her out to the rec room to visit with us all. Clare's cousin and husband had come and were in the big room when Clare wheeled in. It was a large group and I wondered how long Clare would handle it. We all behaved ourselves, trying to talk one at a time and directing our talk to Clare and not too much to each other. Clare handled it very well. This time Jonah gave her a kiss and held her hand. That made Clare happy and her smile today was the most natural looking that we have seen.

Her new nurse for the night shift came over and introduced herself. She seemed a bit leery of us and sat and observed what was going on for several minutes until she was satisfied that Clare was handling it alright. As the nurse started to leave I asked Clare what her nurse's name was and she responded, "Jo." Jo was impressed. I then asked Clare the square root of 25 and she said, "5" with little hesitation.

I can see that our Clare is in there. The miracle that so many of us are praying for is happening every day and will most likely continue to happen over the coming months. Clare looks better each day. How simply wonderful little blessings and progress are. And it is also wonderful to be able to feel truely grateful for each and every little thing.

What did you get done today?

Today is my first time spending the day with Clare in her new place. The weekend crew is different than the weekday crew and she is not familiar with them. She does not like unfamiliar things.

Clare and I sang a song together today. In reality I sang and she filled in a word here and there. We will need to work on this a bit more but she seemed to enjoy doing this with me. Clare tires quickly and she needs to rest. Her Saturday schedule went like this.

7:30 wake and get going
8:00 breakfast
9:00 transition from bed to wheelchair and prepare for
9:30 Occupational Therapy
10:15 Physical Therapy
11:30 Rest/nap
12:00 Lunch- quiet sleepy lunch. She does not eat if their are distractions
1:00 Speech Therapy
2:00 Physical Therapy
3:00 Free time/Nap, we took a stroll outside
5:15 Dinner
8:00 Prepare for sleep
9:00 Lights out

It takes a lot of work moving from one activity to the next and if she gets nausiated or needs to go the toilet it takes a lot longer. It is a busy day and very tiring for her so when she gets a few minutes between things she needs to rest. She handles visiting with one or two people OK, but she does not like a lot of talking.

During speech therapy this morning Clare pushed herself away from the computer and looked very scared and asked, "Am I getting better?" We assured her that she was getting better every day. I don't know if she completely believed us. She doesn't remember everything from day to day so every day she has to re-discover her condition and deal with it. I cant imagine what she is going through.

Kris needed to run back home to get their lama back in the yard and try to figure how he keeps getting out.

Grateful

A couple of weeks before the accident I gave a talk in church on being grateful for the things you have and in finding pleasure and peace with the things that are given to you. I had thought long and deep on the subject and found myself feeling very grateful and satisfied with everything that I am blessed with. Fast forward several weeks. This message of love and gratitude is what has sustained me. I find myself genuinely happy when Clare is able to move a finger or toe. These small things are what has kept my hope and faith alive. I have never felt like Clare would not get better. Sometimes I did feel like I was disconnected from reality and I knew that if I allowed myself to look at things too logically it may cause me to lose hope. I could not do that so I chose to drift in a self imposed state that did not fully recognize reality.

When Clare and Kris were both so serious that some felt they may not live, we could not dwell on this thought. We could not mourn or grieve either. Grieving would mean that we had lost hope and we could not give up on them. There were times when I hurt so bad that I felt that it would have been easier to mourn the loss of a child then to be stuck in this in-between state where you can not start the healing process and there is no end in sight for when resolution will come. The spiritual strength that we feel from many of you is what keeps us going. Thank you.

This blog has been a lifesaving force very literally for Kris and Clare and for the Mabey and Olcott families. Thank you for every kind word, thought, deed and prayer on our behalf. Clare and Kris are both healing. Clare’s mind appears to be intact. It will be a long road, but we are now on that road. How thankful I am that we are on that road.

Tonight Annette asked Clare what on her dinner tray she wanted to eat. After looking over her choices Clare said, “mandarin oranges”. I have never been so grateful for mandarin oranges than I was tonight. Who would have thought?

New rehab center and another postponed surgery

Clare is doing well, she is now in a new rehab facility and has started therapy with speech therapy, physical therapy, and occupational therapy. They are really structured with her therapy throughout the morning and afternoon and she seems to be exhausted by night. They have posted visiting hours from 5-9pm, but she seems so tired by that time that she usually has little energy to visit and still has to eat dinner. She likes to see people, but likes the visits to be short and is over-stimulated easily with more than 2 people.

Today she started reading with speech therapy and working with the computer. She did math, including multiplication and division, and remembered many other things. She says her left eye's vision is very blurry, which is opposite of what we thought would be the case because her right eye has been so dilated since the accident, but she can see out of both eyes which is a miracle.

The plan was to get her external fixators out today, but it was postponed (again). She has been on a blood thinner to prevent clots, and the message wasn't passed on to not give it in the couple days before surgery. Because of that blood thinner she would be very likely to bleed too much in surgery if she went in today. So the plan is next week... As we've thought about it we think it is probably a blessing to have the fixators another week, because her pelvis is considered stable with the fixators so she can begin to walk with physical therapy. Once the fixators are out, she will have to be non weight bearing on her right leg, which is very hard for neuro patients to do. She needs all the exercise she can get on that right leg while she can, so another week with the fixators is fine by us.

We realize this is a quick post, we will add more to it a little later. Just wanted to give a quick update.

She's talking! Trach, demolished! Fixators, not quite....

Yesterday was a very good day for Clare, but a very frustrating day for the staff and us. There were difficulties with the insurance company and miscommunications about her appointment with her orthopedic doctor including details about transport, the location of the appointment, and the purpose of the appointment-- we thought she would get her external pelvic fixators out, but found out it was just for an x-ray. Thankfully there are people here whose sole job is to coordinate things like this, so it all worked out in the end; but boy was it frustrating in the middle of the chaos!

The x-ray on her pelvis looked good, so she has a definite appointment to get them out on Tuesday (thank goodness!) We did find out that once the fixators are out she will not be able to put any weight on her right leg for 6 more weeks, which was a slight bummer because physical therapy was hoping to have free reign once they were out. It will still be nice to have them out so she's more comfortable sitting up.

One thing that did go as planned was that she got her tracheostomy out! She now has a small hole in her neck that the doctor expects to close up in a couple days, but after the soreness is gone hopefully she will want to talk more. She talked quite a bit yesterday morning. She worked with speech therapy and said many things like her full name, birthday, all her brothers' and sisters' names, her parents' names, her dogs names, named many animals, colors etc. Whenever she talked she would start coughing and she said it hurt to talk, so after speech therapy she tried her hardest not to talk when she didn't have to. She did talk to my mom on the phone though, my dad put the phone to her ear and she said "Hi Mom" then had a conversation back and forth for about a minute.

We have been told to expect some memory loss, but so far we haven't found anything she doesn't remember- from childhood things to things that happened in the months before the accident. Even her short term memory seems to be mostly intact. When we went to the doctor's office she asked why she was there, and after Kris told her she was getting an x-ray she didn't ask again. We were told to expect we'd have to repeatedly tell her things, but she seems to remember things after telling her once or twice.

Everyone keeps saying they are amazed by her progress, so amazed that her admission to a rehab facility has been moved up (with some "encouraging" from the insurance company) to Monday!! She is definitely a fighter and wants to do everything the therapists ask her to. We are so proud of her :)

I have never seen that before

Are these words that you want to hear two respiratory therapists and a doctor say as they work on your daughter? Today we were anticipating another large step forward as Clarissa’s doctor decided that her trach should come out this afternoon. Kris and I were happy that this would happen and hoped that an unobstructed airway would accelerate Clare’s ability to talk. What was supposed to be a simple “pull it out” procedure quickly became a project in futility. The trachea tube is stuck and does not want to come out. As they would gently pull on it, Clare would cough and struggle and hurt and colored fluid would spray. It was not a good thing from my viewpoint at the foot of her bed. It was during this time that I heard each of the therapists and the doctor say that the tubes usually come right out and that they have never seen one like this before. The doctor decided that they needed to have an ear nose & throat doctor look down her airway and see what is going on. They are hoping that one of these specialists will be available tomorrow when they take Clare to the hospital to have her external fixators examined and possibly taken out.

Clare continues to amaze everyone that works with her. They are now saying that she may have to be moved next week to an inpatient rehab facility because she has graduated from this level of care. The Utah Valley Specialty Hospital has been a God send for Clare. Everyone there has done everything in there power to help her and she has responded to them. We are so grateful for everyone that is involved in any way with Clarissa’s life past & present. It is all coming together to help her.

P.S. Tonight I saw Clare eat apple sauce and chocolate pudding and drink from a straw. She seemed to enjoy doing that.

Quick update

Clare had a good day today and calm for the most part. She does not seem to want to talk and has been quiet today. She will need to relearn how to use these muscles. Thursday she should get her trach out and I am thinking that they will start working with her after everything is removed from her airway. Clare has an appointment Friday that may result in removal of her external fixators.

Not quite what we expected

Today was a huge day for Clare and exhausting for Kris & me. I knew that many things had the potential to happen this afternoon, so I left work at lunch time and went to Provo. Kris and I talked with Clare and she was very pleasant and responsive. About 3:00pm the speech therapist came in and said that she was going to give her the last Kool-Aid test. Before she did this test she wanted to ask Clare some questions. After passing a lot of single commands, she started giving Clare two commands at the same time and Clare did them very well. Things such as; “Open your mouth and stick out your tongue.” “Point your finger and raise your eyebrows.” “Close your eyes and wrinkle your nose.” “Open your eyes and wrinkle your nose.” “Close your eyes.” “Open your eyes and raise your eye browse.” She did them all perfectly. I was so proud of her.

Then she asked questions which Clare nodded yes or no to. Things like. “Do you have a dog?” “Is his name Billy?” “Is his name Scout?” “Do you know where you are?” “Are you in a hospital?” “Is your name Sara?” “Is your name Clare?” “Are you married?” “Is your husband in the room?” “Is your dad in the room?” “Is it the month of August?” “Is it the month of October?” (I don’t know how she got this right since she has been asleep since August.) Needless to say it was pretty amazing.

The Kool-Aid test was done this way. The respiratory therapist deflated the cuff in her trach so that the air passage is no longer protected. The speech therapist put a piece of ice on a spoon and then covered it with blue Kool-Aid powder and fed it to Clare. Clare would chew the ice and swallow it. The therapist felt Clare’s throat as she swallowed. They did this over and over again. Clare had blue teeth, lips, tongue. . . everything was VERY blue. She also gave her plane ice to eat. Then the respiratory therapist suctioned out her trach. Clare does not like this at all. We are told that it feels like the wind is getting knocked out of you and it hurts. No blue die came out so the respiratory therapist said I will go and get a speaking plug and he left the room. That was at 3:21pm. He returned, pulled out the tube that curved down her airway and put the plug in. If I had known it was that easy I could have done it weeks ago.

We watched Clare as she lay there breathing through her mouth and nose. Not much changed. The speech therapist tried to get Clare to make some ahhh noises but with no success. Clare coughed several times and we could hear her voice in the coughs and a kind of pained whiney sound. When the therapist had tried all she was going to try for the time being, I leaned over Clare and said, “Clare you can talk now, take a big breath and open your mouth and say ahhh.” We did it together and she made a similar sound as I was making, kind of a singing ahhh sound. I said let’s do it again and we took another breath and she made an ahhh sound and it rose in pitch until it sounded like a siren going off. At this point she was looking panicked. The siren continued and she worked herself up.

The stimulation was really getting to her. The new sensation of breathing through her nose and mouth were setting off new connections to her brain and she was VERY confused. She was trying to sit up, throw her leg off the bed; she would punch, hold, push, and squeeze anyone near her. The siren continued to go on and off. She coughed a lot, gagged and was trying to clear this new airway. It got worse. Kris and I traded off holding her and keeping her from ripping off all of her wires and pulling out her trach. She would not keep the oxygen on and for 2 hours we worked her trying to keep her from hurting herself. The nurse gave her more pain, anxiety and nausea medications. After about 2 hours she began to settle down. She was visibly terrified and not happy.

The Doctor came in to visit her. He hears glowing reports of what Clare does every day but every time he visits her she is sleeping or very unresponsive. When he walked into the room, Clare closed her eyes and went to sleep. She would not do anything for him. I don’t know what he did to her to get on her bad side, but she was not going to give him the satisfaction of performing for him. As the doctor was about to leave, I leaned over Clare and asked her to try and make an ahhh sound for us. “The doctor needs to see what you can do so we can get you out of this hospital.” We took a big breath together and she wound up into a siren and began thrashing again. The doctor seemed pleased to see the progress and soon left. He said that if she does well on this speaking plug, then in 48 hours they will take the trachea completely out. That will be so nice for her.

Kris and I talked about how exhausting this afternoon was. It is not unlike what we experienced several weeks ago except that Clare is much more mobile and she now has her own alarm that goes off. We are told that she is processing so many new stimuli that she is overloaded. Hearing her own voice and breathing through a new airway and not being familiar with the feeling of a partially plugged airway is all overwhelming to her. Three hours after the speaking plug was put in, she calmed down and went to sleep. I am sure as she lays there breathing through her new airway; her brain will continue processing this new sensation and remake many associations. Let’s hope that tomorrow she is more comfortable with her new airway and will be able to say what she has been trying to tell us.

There were two words that we heard at the start of one of the sirens. It was “Help me.” The only way Kris and I could keep from crying during this emotionally and physically exhausting time was the joy of knowing that once she passes through this, she will not have to go through it again. Rebooting a brain is hard work and Clare is working very hard at it.

You Can't Keep a Good Woman Down

This morning when Kris arrived to see Clare, she was trying to climb out of bed. A short time later her physical therapists arrived and decided to take her downstairs to the physical therapy room. Clare was able to stand up four times. She did this on her own with the therapist and Kris there to stabilizer her. They also put her on a hand pedal machine. She really did well with the hand pedals, and did not want to quit. Kris said that he hasn't even been able to work up to doing the hand pedal machine yet, so he was really impressed with Clare's progress.

Occupational therapy worked with Clare's range of motion, and she is doing very well. The speech therapist gave Clare her second Kool-Aid test, and she passed! Two Kool-Aid tests down and one to go. If she passes her third test tomorrow they will put in a speaking tube. Today they had Clare try to make sounds. She was able to make an "Ahhh" sound. Clare has been trying to mouth words to us for the last couple of days. She has said "I love you", and "please". She has tried to say more, but we are poor lip readers.

This evening Clare was still very alert. She is nodding and shaking her head in reply to questions. Her eyes seem brighter and more alert every day. I can't wait to see what tomorrow will bring.

Today when Kris sent photos and the update on Clare's physical therapy, I sat at my desk and cried for joy. I had a few of my friends point out to me . . . the power of prayer really works. I am extremely grateful for answers to prayers, and I am hoping for the progress to continue.

Happy Birthday Clare

Today is Clarissa's 21st birthday. We celebrated her birthday with her in a very subdued way and didn't make a big thing of it. We did take cup cakes for anyone that may visit and for those that care for her.

Today Clare was very responsive to us. She is getting better at nodding her head for yes and no and is trying more and more to mouth words. (we have only been able to discern a few of the words that she mouths) She is getting better at puckering up for kisses from Kris. At one point this morning she got a kiss from him, looked at him and puckered up again as if to say, "that was not enough." When we took out our camera and took a group picture, she smiled big without being asked to do it. We can tell that she understands some of what is going on and that she can remember some things from the past.

We are looking forward to the day when Clare will be allowed to try and talk. We hope it will come in the next few days. There is daily progress and we see it. Most of the time the changes are very small, but we see it and are very grateful for each positive step no matter how small.

Thank you all for your continued prayers and concern. It buoys us up and we see the results daily.

Evening update from Kris - Clare has done great all day pretty calm and happy. She was happy to go outside and see Scout (her dog) and pet him and handled the trip very well. As soon as we got in the hallway she smiled big.