Monday, August 30: Update

My days are starting to bleed together. One of my co-workers asked me how my weekend was. My response: “I don’t remember it.” And I really couldn’t. Granted it was an early Monday morning, but it was indicative of how fleeting is my time. Even as I write this, the clock stares at me, shocking me with its pronouncement of another day gone by. On the one hand, I want time to slow down so I can catch my breath, and on the other I want it to speed up, hastening Claire’s recovery.

If I remember anything from this weekend, it is reflecting on the fact that it’s been three months since the accident. My shoulders get heavy just mentioning it. The difficulty level has increased. I reflect on the first few days when it happened, hoping that as we brought Claire out of hypothermia, we’d take great strides to recovery. We were cautioned that the recovery would take a long time, but we still didn’t grasp the gravity of the situation: little did we know that weeks, months and years of shuffling forward were ahead of us. The slow pace is what is difficult, each day another day without seeing Claire smile, hearing her voice or watching her play. We’ve survived for three months without those things, but we can’t imagine living without them for another day. But we do it anyway, because we hold on to the hope that day will come soon.

And while they’re not the strides we hoped for, we continue to take baby steps toward that day. Following Claire’s horse therapy on Friday, we spent the weekend running her through the gamut again: massages and stretching in the morning, body weight therapy in the stander, visual therapy with Wee See (thank you Rollin), oral therapy exercises, exercise ball therapy, more stretching, more exercising, more massaging and then some tummy time. On some days we see something new. Tiffany had the idea of buying some Baby Orajel as part of oral therapy. Her idea was that when you feel numbness in your mouth, your tongue tends to explore that side of your mouth. Claire’s tongue exercises have been limited. So we tried the Orajel. It worked right away. We watched Claire move her tongue to the right side of her mouth, feeling where we had placed the drop. We all cheered watching her little tongue move. Her curiosity turned to annoyance when the feeling didn’t go away. She didn’t like it. It was a victory nonetheless.

These victories, no matter how small, still help us battle the hope defeating thoughts like wondering if Claire will ever get better or how long will Heidi and Autumn have to wait to play with their sister again. We don’t dwell on these thoughts, but they stalk us. We still return to your comments for support. Knowing that such a wonderful group of people are praying and hoping for us, helps us keep our spirits up. Thank you as always. Goodnight.

Friday, August 27: Update

Peanut exercise balls and horses. We introduced these two new tools to Claire’s rehabilitation program this week. Both provided some great results. Claire’s therapists at OCH Grapevine brought out a peanut exercise ball yesterday to let Claire practice lifting her head. Claire has been working hard to lift her head at home and we’ve seen her do it several times; but there is something different when the doctors and therapists see her do it as well. They got to see her lift her head yesterday. Claire stretched out over the exercise ball and when asked to raise her head, she did. Her therapists could feel the effort in her upper back muscles: she was working very hard.

Her hard work extended into today’s new experience. We arrived at Bridlewood Farms in Flower Mound at 10:15 AM for Claire’s 10:45 appointment. We met Mandy, Melissa, Reyna, Toni and Kathy (forgive me if the spelling is incorrect). We also met Delilah, the mare Claire would ride today. She was gentle and calm.

Claire had short outbursts, but the majority of the time she was attentive to what was going on around her. She struggled under the added weight to her head because of the helmet: her head would fall forward and the helmet would follow suit, covering her eyes. Each time we’d adjust the helmet, Claire would strain her eyes to see what was on her head. It made us smile.

Claire’s trunk control and posture improved as we progressed through the session. We loved watching Claire observe and process the new stimuli. At the end of the session, Claire gave Delilah a small hug with Mandy and Tiffany’s help.

Claire spent the ride home calm and collected, just processing the day’s events. We are excited for the outcome so far and look forward to next week’s session.

Autumn and Heidi’s first week of school concluded on an upward slope. Heidi was skeptical after her first day, but improved her outlook on school by today. We’ll continue to challenge her and help her set small goals for each day to accomplish.

I wanted to clarify my last post as well. Claire’s new therapy schedule which is one day a week instead of three is not indicative of progress. We voluntarily changed the number of sessions because we felt the time we were spending in the care traveling to therapy was time that would be better allocated toward therapy at home. Claire continues to improve, however, the reduced outpatient therapy schedule is not a function of improvement.

We also have not learned the results of the MRI and we have not decided whether we will solicit those results. If we do, we will be sure to share them.

Thank you as always for your prayers and support. I will continue to post on an every-other day basis for the foreseeable future. Enjoy your weekend!

Wednesday, August 25: Update

Everyone woke up this morning with things to do. We packed the girls off to school and then prepped Claire for our return visit to OCH Dallas. Aside from having to fill out another library of paperwork because we are outpatient instead of inpatient visitors, there’s not much to report in terms of progress. Claire’s physician, Dr. Raji, was pleased with the improvement in Claire’s arms and reported that we were doing all the right things. Yet the now familiar refrain of “wait and see” rings in our ears.

We did make some slight changes to Claire’s regimen. Claire will go to outpatient therapy once a week now instead of three. We feel that our efforts at home have been more productive so far. The time it takes to get ready and drive over to Grapevine would be better spent conducting exercises and sessions at home. As Claire continues to improve, we will re-evaluate increasing the number of sessions at outpatient therapy with a more aggressive rehab plan.

We also asked the doctor to prescribe Ambien for Claire. Claire has been on Seroquel as a sleep-aid since she was admitted to OCH Dallas. It is primarily a psychiatric drug and we would prefer to have Claire on a med that targets sleep: Ambien is a good place to start. We will trial the Ambien for a month and hope to move Claire off the Seroquel soon. While we wait to wean off the Seroquel, we are taking Claire off the Amantadine right away. We learned that the Amantadine has a history of causing reflux. Dr. Raji wasn’t seeing any continued benefit from the Amantadine and since Claire has been struggling to keep food down, we decided to cease Amantadine doses. It will be out of her system by Sunday.

The rest of Claire’s day was mild. Her calm mood matched the subdued day outside in north Dallas. Claire was content. And we were reluctant to push her hard today for therapy. Tiffany conducted some easy sessions throughout the day, keeping Claire loose and comfortable. The break ended at 7:30 PM. We gave her legs a vigorous session. Her quadriceps have been a growing source of discomfort the last week. We made them our focus tonight. Claire was not happy. It was a mixture of contempt for not being consulted and overall discomfort. She may not have wanted to do it, but she did. And by the end of the night her legs were more flexible and her disposition even more relaxed.

The hefty workout was a great prep for sleep. Just talking about it makes me more sleepy. So with that, I bid you a good night. Thank you for your continued support and prayers.

A New School Year

This is going to be short.

Heidi and Autumn joined the annual migration back to school today. We joined the host of parents with cameras attached to their eyes and captured the first day back. It was bittersweet.

Another piece of the routine has been set. The kids are in school and Claire is plugging away at therapy. It will be a while before we can stop to catch our breath, but at least we have air to breathe.

Thank you for your support and prayers. Sleep good.

Sunday, August 22: Update

It was a challenging day. Claire was not overly agitated but was inconsolable almost all day. She seemed fed up with the situation and no amount of yelling and crying helped. Claire had brief breaks. They were few, however, and short lived.

I stayed home with Claire all of today while Tiffany helped tie up some loose ends for before school starts tomorrow. I stayed home in large part due to the same reason I didn’t post last night. We had a late night soccer game yesterday, our last of the season. We were short sided which meant there were no substitutes and I got to run the entire game. While it was good for my cardiovascular health, the full kick to my right ankle did not bode well for my body. When I got home we couldn’t see my ankle it was so swollen. It is a bright red today and showing shades of black and blue. While I don’t type with my ankle when I write posts, the night’s activity kept me away from the computer. It also made me a homebody today. So Tiffany ran errands and I stayed home with Claire.

Though Claire’s day was rough, we did notice some improvements. Claire’s range of motion continues to improve particularly in her arms. We have been focusing most of our effort on Claire’s legs which seem to cause her the most discomfort. We had planned to intensify her arm rehab this week. We are finding it may not be necessary. Despite that attention lack, Claire’s arms have become more flexible. Her left arm has always been tight, and now it is much easier to maneuver and manipulate. We are pleasantly surprised.

We hope her legs follow suit soon. While we are seeing improvement in Claire’s calves and Achilles, her quadriceps and hamstrings are getting more sensitive and sore. Her feet are more flexible but they seem to maintain their flexion rather than fall to a natural position. We continue to use aggressive therapy like the percussion massager, the stander, deep tissue massages and stretches; however, we haven’t gotten to the point where all the tension is worked out of her legs. It’s been a game of inches. We hope bigger strides happen soon.

Heidi came into the kitchen today while I was making dinner. She was in a reflective mood. School is finally upon her and she was thinking about this, her last summer. Her opening line was “I hope Claire can walk and talk by next summer.” It was an appropriate summary for our summer of 2010: the story behind it is tragic, and we remain hopeful for things to come.

Thank you for you support through this summer. We wish you and your family a prosperous school year. Thank you for keeping Claire in your prayers and hopes. Goodnight.

Friday, August 20: Update

There’s not much to report tonight. Claire had a mixed day: she was equally frustrated and content throughout her waking hours. It was a good day to recover from the preceding three of therapy. But it still felt long and belabored.

For that reason, I’m going to cut this short and head to bed. I’m evaluating the update frequency right now. The end of summer brings more activities for us all: Autumn starts piano lessons again, Heidi goes back to ballet and both return to school. I will be amending the frequency in the next couple weeks. I encourage all of you to sign up for email alerts (on the right side of the page) if you haven’t done so already.

Forgive me for the brevity. Enjoy your weekend and sleep well!

Thursday, August 19: Update

Today’s trip was a little more rocky than the past three days, but still less volatile than some our earlier days at home. We have started taking evasive action if Claire goes for a single day of constipation: today we picked up a liquid suppository and it alleviated her discomfort right away. We recognize the close working proximity of all the body systems more now and make every effort to remedy causes before they cause a symptomatic chain reaction. We did that today, and we hope Claire will have a better day tomorrow.

The girls had their annual back-to-school kick off event on campus tonight. We were again overwhelmed with the support and encouragement. Everyone is very attentive to the girls and Claire’s story. The school has taken up residence in our hearts and we are so endeared to them. When we were faced with the possibility of moving because of the accident, we knew that we wanted to stay in district because the school staff, faculty and students have been phenomenal.

Feelings – new and oldĀ  alike – continue to percolate with us all. In addition to wondering when Claire will talk, walk or take her next big recovery step, we wonder when we will feel carefree again. The desire to get Claire better is ever-present; we are always pondering what more we could be doing and evaluating what we are doing wrong. But the biggest weight is just missing Claire. She’s here with us and she’s not. We grieve what she would be doing right now. These feelings are always lurking for us and are most acute in the morning and in the late evening. While we don’t lose hope, we still struggle with the gravity of the situation. The feelings don’t subside: we miss our daughter more each day.

It’s times like these that your support is particularly meaningful. Thank you as always and enjoy the end of your week tomorrow! Goodnight.

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!

Tuesday, August 17: Update

It was a long day. We were up before the sun made its appearance in North Texas and on our way to Medical City for Claire’s second MRI. All things considered, the visit was smooth and efficient. We were told we would be headed home by 8:30 barring any complications and we were on the road at 8:45 AM. That was a success by medical services standards.

The highlight of the morning was seeing Kara and Brian at Medical City. Kara has been mentioned in previous posts: she was one of Claire’s brilliant PICU nurses. Brian was the chaplain on-scene the night Claire was admitted to the PICU. We enjoyed seeing them both. We were torn about taking Claire to visit the 5th floor PICU today. We want Claire’s return to be more triumphant; however, we are eager to see our PICU family. If we had more time, we would have persuaded ourselves to go up and visit.

We did not have time. My mom was scheduled to arrive at DFW and we had to battle with traffic to get to her terminal. Tiffany, Claire and I picked Nana up and we were all smiles. We’re glad to have her back.

Claire’s therapy went well today. We’ve also been exploring new therapies for Claire, taking cues from the Damoffs: Claire will have her first hippotherapy (equestrian) session next Friday morning. Vestibular system issues tend to associate with anoxic brain injury and I suspect that Claire is following suit. Our vestibular system regulates our balance and sense of self in space: problems with you vestibular system can lead to problems like vertigo. One recommended treatment for vestibular orientation is referred to as cross-patterning. George, Jeanne’s husband, had discussed hippotherapy success with me and the impact on Jacob’s cross-patterning skills. We began researching and found a location in Flower Mound that are welcoming Claire with open arms. It’s another tool in Claire’s arsenal and we hope it yields some solid results.

We continue to work on Claire’s spasticity. We are seeing improvements in her muscle rigidity and overall disposition. Claire was very calm and collected yesterday and today. She was attentive to movement around her and able to calm herself with greater efficiency.

Overall, the past few days have been encouraging as we continue to see improvement and develop new tactics and strategies. We continue to look to the blog comments for encouragement and thank everyone for their prayers and support. We hope your week is going well. Goodnight!

Monday, August 16: Quick Update before Tomorrow’s MRI

This is going to be quick because I need to get to bed. Tomorrow’s MRI is scheduled to begin at 6:00 AM CDT. It will take an hour to complete and Claire needs to be under for it. I don’t expect any results tomorrow. I expect that we’ll hear the results – if we choose to – at our August 25th appointment at OCH Dallas.

We will be returning to Medical City for the MRI. We wish we had time to head upstairs and see our PICU family, but we have to make a quick escape after so we can pick up my mom. Please keep her in mind and prayers as she makes her way down to DFW tomorrow. Please also think of Claire: going back into the hospital is never fun and the triumphant return this is not. That will come down the road.

Thank you for your thoughts and prayers. Sleep well tonight!