Saturday, July 31: Update

We took Claire to the mall today for the first time. It was mildly successful. Our plan was to see if Claire could handle an hour in public. She made a valiant effort for 30 minutes before letting us know she’d had enough.

The rest of Claire’s day was productive. She has her moments of hardship, but she was predominantly relaxed and amiable today. Around 7:00 PM Claire became more subdued than she has been since being home. Tiffany and Esther were stretching her and working out some of her tightness while Claire watched TV. We thought this passivity was preceding an early night to bed. We were wrong. She’s still awake. But she’s not making noise or agitated. Every time I look in on her, she’s wide-eyed, but calm. It’s sweet, but we hope she falls asleep soon.

Autumn and Heidi’s return to school and on the horizon. We did some school shopping today for them. Autumn is going into the second grade and Heidi is starting kindergarten. The school activity has given us pause as we reflect on the plans we had before Claire’s accident. Every day we are learning more about how far-reaching the effects are into our family life. Our school plans are just a piece of the puzzle. We continue to hope and pray that Claire makes a full recovery, so she can continue to make plans with us.  We can see how much she wants to when we look in her eyes.

Thank you for hoping with us. Enjoy the rest of your weekend and sleep tight!

Friday, July 30: Update

Today marked the end of my first full week back in the office and a week since we brought Claire home. Tiffany and I reflected on this last week tonight when Esther gave us the opportunity to go on a date. We are happy that Claire is home and able to sleep in her own bed. We are happy her sisters are able to help and have us all together under the same roof again. We are happy that Tiffany and I don’t have to stay apart each night anymore. These are the things we remind ourselves of every time the recovery feels overly time consuming and onerous.

What also helps is having health caregivers that are as concerned as we are about Claire’s rehab. Grapevine OCH’s team made us smile with their call this morning. We learned earlier this week that Claire was not going to be able to use the pool as planned. The pediatric rehab center shares the pool under an agreement with the adult center; the agreement precludes kids that are not potty trained. Without us knowing Kristin at Grapevine OCH has spent the week making arrangements to get Claire pool therapy sessions arranged. Her efforts and attention mean a lot to us: we are overwhelmed when others fight for Claire as if she was their own.

We’re looking forward to the weekend and some time to recover from the first week with Claire home. We are going to get out some and get Claire some air. But we need to get some rest first. So with that, thank you for the prayers and support and goodnight.

Thursday, July 29: Update

At the same time we seem to be stuck in time, we also feel like we don’t have any of it left. Before we know it, we’re looking up at the clock and it’s 11:00 PM and we’re wondering where did the rest of the day went. Sleep seems to be an afterthought, though we feel like the Sandman is always stalking us, lurking around every corner. It’s different from those first three months with a baby. Then we felt like we were the ones chasing sleep, and it was ever elusive. We couldn’t get enough. That’s not the way it is this time. I’m tired. But I feel other burdens and I fight the urge to sleep. I feel like I ought to be doing more. More research. More therapy. More focus.

This has always been the albatross around my neck. I’ve felt that any problem, issue or opportunity can be overwhelmed. Friends and family are amused with my approach to new hobbies. When I find something new to pursue, I go all out. I digest inordinate amounts of information, structure my own training regimens and immerse myself in the new culture. This is the last subject matter I would have chosen to pursue. It’s certainly not a hobby. My tendencies, however, are put to good use with Claire. I feel that there is always something new, something better that we can do for Claire, so I chase after it every day. But this requires a lot of time as well.

My sleep gets the leftovers. And it’s not a priority for me. Not yet. I will be soon, either by my own choice or foisted upon me when my body says “Enough!” I have a solid understanding that balance is the best approach, not only for me, but also for Claire and my family. If I don’t take care of myself, then it will be hard to take care of them. I understand that; but I don’t abide by it. Not yet.

While I may not be getting as much sleep as I need, Claire is sleeping like a pro. She is getting nearly 12 hours of uninterrupted sleep each night and her reserves are being replenished. She captures another one to two hours with naps during the day. Today I rolled her on her stomach for a while for a change of pace: she got so comfortable she fell fast asleep. We’re learning new methods to add variety into Claire’s routine so that she feels more comfortable and less frustrated by the mundane. Being on her belly was just one of our attempts. It’s nice when the experiments work and we discover a new tool to fight the malaise.

Claire wrapped up her week of scheduled therapy at Grapevine OCH today. She had another productive day and we learned some new therapies that we can utilize at home. We are pleased with the first week and her new therapists. They have been a great source for new ideas and they are proactive with Claire’s plan. We appreciate that and are glad we added them to our Claire Team.

Thank you as always for being a part of the Claire Team. We hope the end of the week is a good one!

Wednesday, July 28: Update

Claire had another positive day today. She was more calm during physical therapy than any previous session. We were surprised to see her do her exercises without protesting which was a first. Overall, Claire had a good day.

We are continuing to build our arsenal of gadgets and gizmos to further Claire’s recovery. Today we got a standing frame via eBay. The frame needs some cosmetic rehab but is in good working order. This will give us the ability to stand Claire up at home so her legs have to support her own body weight. The therapists have been eager for this and made us equally eager. It should get her in the next two weeks, and we’ll put it to immediate use.

Tiffany and I got out of the house for a little while today. We headed to a park and kicked around the soccer ball. It was nice to run around and get some energy out. I ended up getting a craving for fajitas afterward. Our friends had been telling us about a place in Coppell called Rosa’s that makes their own tortillas. It was 10:30 by the time we got home, but fajitas were worth it.

It’s been a long day, so we’re going to turn in now. Thank you as always.

Tuesday, July 27: Update

Today was Claire’s first day of outpatient therapy. Therapy was easy. Sitting in the waiting room was hard. We have not grown accustomed to the stares and whispers yet. We have to remind ourselves that Claire’s current condition is temporary. But Tiffany and I both have never craved attention. Even on our birthdays we don’t like parties; we are allergic to the spotlight. We are also acutely aware of Claire’s awareness and are protective about her. Being in public for the first time with her today was new and brought out aspects of our disposition that were previously foreign. It’s all so new and we haven’t had time to process or strategize for it. We’ll add it to the to-do list.

Heidi and Autumn have been taking turns working with Claire at home. A friend delivered a meal yesterday and tucked a copy of “The Little Engine That Could” with the delivery. It was a very appropriate and well-chosen book. We didn’t hesitate to read it to Claire. Heidi was nominated and gladly told the story to Claire, making sure to hold the pictures at the appropriate distance from Claire’s face.

We spent the rest of today devising new ways to work Claire’s feet into a prone position. We had looked at serial casting at OCH, but we didn’t pursue because the team thought that Claire’s Botox and phenol response didn’t require the casts. Now that we’ve gotten farther away from the injections, Claire’s feet still haven’t relaxed as much as we’d like. So today we tried lace up shoes inside her first set of splints. It worked. Even after removing the splints, Claire’s feet were more nimble and less stressed.

We got a lot of time to hold Claire today and comfort her. Tiffany still has the touch with Claire and enjoys holding her baby. Claire will hold Tiffany’s gaze for extended periods of time: it’s sweet to watch.

You will notice that the pictures I’m posting are now in color. I’ve decided that since we are now home, I will be transitioning all the images to full color. It’s a small gesture, but being under one roof again brings a little color back into our lives.

Thank you for your hopes and support.

Monday, July 26: Update

I’m still evolving my understanding for how long this is going to take. I know all the platitudes and heuristics for traumatic brain injury: “Every recovery story is different;” “It’s hard to see the changes when we’re living day-to-day;” and “She needs to recover at her own pace.” While they are true, I don’t like them. I want a frame of reference. I want to see big changes every day. I want her pace to be faster. And while I may understand the commonplace truths about brain injury, I don’t like them. I miss Claire now. The truths don’t help that.

The things we think would help like getting out, keeping busy and occupying our mind don’t help either. Tiffany summed it up with, “I don’t want to keep living. I want to stop until Claire gets better.” We encourage each other when we each say things like this, but it seems like a silly dance because when she says it, I’m battling the same feelings and vice versa. We go through the motions to keep living and moving forward. But we feel lethargic and impotent, always aware of the missing pieces we loved so much. We are careful to struggle out of sight from Heidi and Autumn. They need us as much as we need them. We’ve endeavored to protect their childhood through this as much as reasonably possible; we don’t want to jeopardize the fruits of that effort by indulging our selfish emotions in front of them.

They are selfish emotions. I look back at the things I wrote and my contradictions to each brain injury truism begin with “I want….” That was the short list. But these emotions inform what our drive and determination. We want to see Claire. We want to walk with her hand-in-hand on the sidewalk. We want to kneel beside her and watch roly-polies. We want her to live her life and we want to live it with her. It’s hard to digest the fact that we’re missing out on so much.

These are our daily struggles. Our self-talk is complicated and volatile. Being home has introduced a whole new set of emotions. We knew they were coming. We still weren’t prepared. We spent the last five weeks learning how to draw meds, operate a G-tube, perform physical therapy and care for Claire. Yet we are ill-equipped to deal with our roiling emotions.

Being home presents new emotions, but it also gives us additional strength to deal with them. Claire is sleeping better and so are Autumn and Heidi. We are slowly following suit. We have to remind ourselves that it’s only been a few days since we’ve been home. Establishing a new routine is going to take a while. Maybe by the time we have, we’ll have figured out how to deal with these emotions.

Despite the roller coaster, we are thankful for the support of those around us. The comments on the blog continue to provide a safe haven to recuperate. They are invaluable to us. Thank you for your continued prayers and support.

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.

Saturday, July 24: Update

Claire was scheduled to come home on Tuesday, July 27. We brought her home yesterday instead! We decided not to post about it yesterday because we had someone coming in that we wanted to surprise. It was a surprise, so mission accomplished.

Claire was discharged from OCH yesterday morning at 10:30 AM. We’d made the request for an early discharge on Tuesday because there was little point in staying through the weekend: the extra four days would be invested for only a couple of hours of extra therapy. We felt that getting Claire home would be much more therapeutic. The Care team agreed.

We also kept the news secret from Heidi and Autumn. Both girls were speechless when the front door opened and Claire entered. Autumn gets embarrassed when she is overcome with shock and retreats from those situations. Heidi didn’t have anything to say for 10 minutes. Her Aunt Krissy asked her if she was happy. Heidi just smiled and said, “Yes.” Seeing their reactions was a great payoff.

These past two days with Claire at home have been busy. We got some more furniture to organize the girls’ room and spent a lot of yesterday finding homes for their collective belongings. Trips to Sam’s Club and Vitamin Cottage were in order to get some much-needed supplies: Huggies diapers and a pill crusher were the most important. OCH used Pampers diapers for the duration of our stay. We don’t like Pampers. We are walking spokespersons for the absorbent power of Huggies. It makes a difference! The pill crusher is for Claire’s meds. Three of her prescriptions were delivered in pill form. We have to crush the pills and mix with water to administer via her G-Tube. We’d been using a spoon and a bowl to do this. The pill crusher has made it easier to draw her meds now. These were the last two pieces we needed to take care of Claire.

Everything else had been completed beforehand. Last week was a mad dash to make the Friday discharge date. I was so excited and full of nervous energy last week that my sleep cycle suffered further. For that reason, I’m going to cut today’s update short and get in bed. We’ve already seen some improvement since Claire has been at home. I’ll share those things with you tomorrow. How’s that for a teaser?

Goodnight to all and thank you for your prayers and support. We’re home!

Friday, July 23: Update

It’s been a busy day and it followed a long night. My nights continue to be short. I got to bed at 3:00 AM last night and was back at the hospital by 8:30 AM. I’m looking forward to Claire being home for many reasons including better sleep.

We continued making arrangements for Claire’s post-discharge therapy in Grapevine. Claire is going to continue therapy three times a week with one day of pool therapy. We’ve gotten her scheduled so there will be no gap between inpatient and outpatient.

We spent the rest of the day organizing the girls’s bedroom further. We picked up a large bookcase at IKEA today, assembled it and found places for the mountains of toys the girls have received over the last two months.

Your generosity continues to astound us. Gifts, prayers and stories continue to overwhelm us. We thank you again and look forward to updating you tomorrow.

Thursday, July 22: Update

Claire resumed her rehab schedule today following yesterday’s recovery break. We were told to expect the phenol injections to take two to three days before effects would take hold and the Botox three to five. I noticed substantial differences this morning when Claire woke up for her first diaper change. Claire’s therapists were equally excited when they started working with her: there is a noticeable improvement already in Claire’s muscle rigidity. We are looking forward to seeing how improved she is after the treatment has taken full effect.

The improvement allowed Claire to complete her sessions in a much more relaxed state. Lori, Claire’s occupational therapist, still had to battle with Claire’s surly attitude in the early morning (an early morning for Claire is anything before 11:00 AM). Despite the fact that Claire is not a morning person, Lori was able to flex Claire’s wrists and arms farther than before and with relative ease. Mary, Claire’s physical therapist, drew the long straw and got to work with Claire while she was alert and calm. Claire was our new stretchy, Gumby toy today and we enjoyed seeing just how much further she could bend. She did a great a job.

Claire’s final session today was with Susan, the neuropsychologist. I got to administer Claire’s Rappaport test today and she scored a 1.0. We will continue to give her the test after discharge to track her progress and help inform her therapy efforts. Claire did not cooperate for the vision portion today, refusing to open her eyes. For some reason she didn’t like the idea of lights being shined in her eyes. Go figure.

The rest of the day was quiet. We continued to make plans for going home and spent time together where we could. Tiffany and I started making our way through a six part series on the history of comedy in America. Claire joined us for one of the episodes. She seemed to like it.

Thank you for your support and enjoy the end of your work week!