Month: August 2010

We got tired of waiting for the replacement knee pad to arrive for Claire’s standing frame. So we fashioned our own. Claire was having a tough morning. She was responding to leg stretches and we wanted to see if putting some weight on her legs would alleviate some of the pain. It did. Claire stayed in the standing frame for just over 30 minutes and was calm and collected the majority of the time. She was also much more subdued after she came off the frame. We were so encouraged by the results we put her back on the frame this evening when she was getting agitated again. She calmed down again and stood for another 30 minutes. We intend to use the frame on a daily basis now and hope it will produce recovery results for Claire.

We spent the rest of the day trying to catch up on some rest. We got bits and pieces, but the weekend was still too short. I’d say that we’ve got a big week ahead of us, but that would indicate some relativity, that it’s different that previous weeks. They’ve all been the same. There’s always something new to qualify the week as “big;” we hope those things are steps in the right direction for Claire.

Thank you again and sleep well.

I’m starting to come down with something that’s I’ve been battling all day and hope I can head it off at the pass by getting to bed before midnight. So this is going to be quick.

Claire had a challenging day today. It had been a few days since having a bowel movement and that contributed to an early morning wake-up call and a day of discomfort. We finally started seeing some action around 3:00 PM today and had four diaper changes in quick succession. We’re hoping this means tonight and tomorrow will be more comfortable for Claire. The reduced Miralax doses seem to be going well, and we’re going to pick up a pediatric suppository tomorrow since it’s easier on Claire’s stomach.

I completed the Basic Lifesaving Course for health care providers this morning. It is similar to the standard CPR course I took years ago with more hands on training. The instructors were great and the presentation commendable. The class did have portions that drummed up haunting feelings, particularly on the pediatric CPR portion for the training. Aside from that the class was great and I’m looking forward to Tiffany’s attendance.

Thank you for your continued hopes. It’s hard to stay optimistic on some days. Knowing we have an army of supporters helps us regain our optimism. Goodnight!

Everybody is in bed now and another work week is over. After I laid Claire down to sleep, I walked into the kitchen and Tiffany asked me, “Was that a sigh?” I told her it was. I don’t sigh much, but this week was a long one and that sigh may be the one break we get before the night begins and we hit the reset button tomorrow morning. It’s going to be a busy weekend.

Tiffany and I have been brainstorming ideas to help relive Claire’s pain and discomfort. Our meeting on the 25th seems close to others, but 12 days is an eternity for us. We can’t stomach the fact that a solution may exist to ease Claire’s pain but we have to wait for it. So we started thinking up ideas today. We are going to try our new approach through the weekend and see how Claire is on Monday. We have a percussion massager that we started using today hoping it will heat her muscles and break apart her tone. We made sure to up her water intake today to deal with the amount of acid being released into her system from the muscles. We paired the massager with deep tissue massages and her regular stretching regimen. We moved Claire into the bathtub after one session for a long soak with hopes that the buoyancy will alleviate some of her spasticity as well. By the end of the day we were seeing some improvements, but the jury is still out on whether they will be long-lasting or not. Her feet aren’t pointing in as much and when she relaxes, her feet fall closer to a neutral position.So far, so good.

We also repurposed the massager for another recurring issue. Claire’s body still hasn’t developing a normal plumbing schedule. The Miralax was sidelined because of the vomiting, but now she’s backed up. The prunes and water levels have not solved the problem. We gave her a smaller dose of Miralax this evening and hope it will alleviate her discomfort.

We feel relatively comfortable bringing the Miralax back into the game because Claire has not stopped having eating problems since we took it off the solution list. Claire’s reflux has diminished, however, she still has mild episodes of reflux. Today was the first episode when I was not home. Tiffany and the girls called emergency services to stay on the precautionary side of things and I’m glad they did. Claire was fine. The firemen and the paramedics checked her out and gave her the thumbs up. They also cleaned up the house to help Tiffany. They’re our family now. Family take care of each other. They continue to take care of us.

We’re going to plug away through the weekend and hope to break through Claire’s tone. We’re aiming to see if we can eliminate the knots and tightness and stop the self-perpetuating cycle the muscle rigidity brings. We thank you again for your support. We’re looking forward to seeing many of you soon. Goodnight!

I tried out four online sign-up sheets and this is the one I liked the best. We’ll see how well it works.

Click here or the button below to go to Claire’s calendar for signups. This will open in a new window. Please be aware that the time slots for each day are for a single volunteer/family to visit Claire. Each slot is between two and three hours long: you are not obligated to stay for the entire time slot. You are signing up to visit Claire anytime within your time slot. Claire does best with visits between 30 and 60 minutes.

Please also be aware that the times are subject to change. I will update the calendar as new events come up. The sign-up calendar goes through October right now. Feel free to email me with any questions at tyler.tmartin@gmail.com.

It’s a down day. Grapevine has reintroduced the Baclofen pump as a recommendation for Claire. The physical therapist explained that she is unable to break through Claire’s muscle tone because of the spasticity; and if the therapist can’t break through the tone, then we don’t think Claire can either. This could mean that a lion’s share of Claire’s pain and discomfort is coming from her rigidity. In normal English Claire is very tight on her right side. She has large muscle knots in her left calf, bicep and trapezius (neck) muscles. Most of the therapy session is spent just trying to stretch these areas. We and the therapists feel that we’re racing on our hamster wheel, and we’re just not gaining any ground. Enter the Baclofen pump.

We have seen the Baclofen pump as a solution of last resort. There are also some complicating issues that may preclude Claire from having it anyway. But Claire’s new occupational, speech and physical therapists have all mentioned the pump and gently prodded us to consider it. I think it’s the gentle prodding that is causing more headaches. We’d really like a professional opinion one way or another with an explicit discussion about the risks, downsides and upsides. We appreciate the consultative approach, but we’d like an expert to stand up and tell us what they think is best for Claire. Because that’s what we’re interested in. If we’re at the solution of last resort and that is what is going to help Claire improve, then we’ll take that path.

The pump still causes its share of trepidation. We don’t like the idea of Claire going into the operating room again. And we also want to be assured that the pump will work, that we’re not assuming the risks for a possible solution: it needs to be a real solution that will accelerate her recovery, or at least get it moving again off this plateau. Whether it will or not has yet to be explained to us. Claire is scheduled to return to Dallas OCH on August 25th for a meeting with her advising doctor. We will be discussing the Baclofen pump then and seeking the expert’s recommendation.

Until then we will continue on the same path. We feel hamstrung knowing that there always exists the potential that we could be doing more and we just lack the knowledge and resources to draft a comprehensive plan of attack. We’d like to help Claire break out of the cycle of pain causing tensing, causing more pain, and so on. It breaks our hearts to see what her body is doing to itself. We hope a solution presents itself soon, whether it’s the Baclofen pump or something else.

Today marks the end of another formal therapy week. We’ll continue  working on Claire through the weekend and prepare for next week’s events. My mom gets her on Tuesday, shortly after Claire has her second MRI. We are approaching the MRI with mixed feelings and we haven’t decided yet whether we will request the results or choose to keep them out of our knowledge set. We know that if the results come back negative, it won’t change our approach or our hopes for Claire’s recovery. It would only make it more difficult to remain hopeful. So since it won’t change how we’re going to behave, the knowledge becomes superfluous. We will be wrestling this issue over the weekend.

Thank you for continuing to pray for us. We need your prayers over the next few days particularly as we start to evaluate some bigger decisions. Enjoy your Friday and goodnight!

Another day gone and we don’t remember getting to the end of it. All we know is that everyone is asleep except us and we’re eager to join them. So this will be another short update so I can get some sleep.

Claire’s therapy sessions went well today and she was able to squeeze in an unexpected occupational therapy session. Claire still dislikes morning sessions and let the speech therapist know it today. Tiffany was able to get her calm in time for the next two sessions and Claire performed swimmingly.

We started researching some other wheelchairs for Claire today. We are looking at units that resemble traditional strollers (buggies for Claire’s Easter seaboard supporters) instead of heavy, standard wheelchairs. We hope to place a new order by the end of the week.

Thank you for your prayers and encouragement. Talk to you tomorrow and goodnight!

Claire worked hard today. Tiffany followed up her afternoon therapy sessions with a home regimen that tuckered Claire out. When I got home, I set to work on her legs. Claire ended the evening with a stint on her stomach. At 8:30 PM when it was time for her meds, we really didn’t need them: she was sufficiently tired on her own. She voiced her discomfort throughout the day, but soldiered through everything she was forced to accomplish.

I’ve been wanting to take a refresher CPR course since this happened and signed up for one of the advanced courses this weekend. My mom is coming back down next week and so I signed her and Tiffany up for the same course in a couple of weeks. Surprise mom! It will also satisfy a requirement that I need for some nursing courses I am going to be taking over the weekends and via distance learning. I’m not content with just regular book learnin’ at home and want to make sure I have the skills to take care of Claire at home in the best way possible. So I’ve registered for the RN nursing program at a local college. It is additionally beneficial for my career because I work in the health care industry and it will give me a clinical perspective for my business efforts. The class I’m looking forward to the most right now is the Basics for Health Care Professionals course: it is a survey course that will go over the skills paramedics and EMTs require, so I can perform routine checks on Claire should she have any other vomiting episodes.

We’re finding that as our confidence grows, we are taking more and more into our own hands. We are not content with the pace that red tape from bureaucracy inflicts on recovery. After a month of waiting to receive Claire’s wheelchair and bath seat, we got a call from the supplier to let us know that the bath seat and a number of wheel chair components were denied. So we are taking matters into our own hands and getting the tools Claire needs. The financial aspect doesn’t bother us. It’s the expectation that recovery tools were on their way only to be delayed longer. So we’re not delaying anymore. We ordered her bath seat tonight and are going to get a new chair – something more fitting – ordered for her tomorrow.

Claire’s train marches on and we’re laying the track for her as fast as we can. We thank you for laying the track with us. Goodnight.

Last night was a long night that followed a long day. Because Claire has been increasingly breathing through her mouth and because she is unable to drink liquids, her throat is raw and swallowing is labored. We bought some chloraseptic spray yesterday because she can swallow trace amounts of liquid. We had mixed results with its efficacy. We also broke out our warm humidifier. That seemed to help.

The problem is that a solution to one problem creates its own set. The warm air humidifier made her room muggy and heavy. The moisture rested on Claire’s skin and made her sweat. This is not good. Claire doesn’t have the body control to shift her body during the night. The pressure points with the bed can cause bed sores and skin breakdown if we do not shift her on a regular basis; however, skin breakdown with Claire only occurs when her skin is moist. If she is dry through the night, we don’t see any signs of developing bedsores. Aside from waking up at odd hours last night – which is off for Claire – she also developed some mild bed sores because of the warm, humid air. So we killed the warm air humidifier.

But we’re still left with Claire’s sore throat. Claire woke up with a mild fever today and we decided to take her in to see the doctor. Claire’s thrush had returned and the prescribed treatment wasn’t working. The doctor thinks that Claire’s sore throat could be a product of the thrush moving further down her throat. So we picked up a treatment today to combat the thrush. We also picked up a cool mist humidifier with hopes that we can avoid the downsides that came with the other. We hope her throat stops giving her fits soon and she can sleep and breathe easier.

This typifies our new reality. Every day is an experiment. Cause-and-effect is difficult to determine and may take several days to reveal itself. But we feel like we’re getting a better hold on things. It’s an education about ourselves as we learn how much we take for granted. We don’t remember how valuable it is to breathe through our nose until a cold forces us through a night as mouth-breathers: the ensuing sore throat reminds us of the body’s proper, automatic function. We hope Claire can soon return to that mode.

Aside from these setbacks, Claire continues to show mild small improvements. She continues to improve her command response and seems to be making more effort to move her limbs with purpose. We are increasing the number of sensory inputs with her and she is responding well. We placed a large order for oral and speech therapy tools this weekend and we’re looking forward to incorporating some more aggressive at-home therapy in those areas.

Autumn and Heidi got to spend the day with our good friends the Schmiseks. They took our the girls to the library. Heidi was more content following Marnie Schmisek to the adult non-fiction section of the library to make her selections. Among her more interesting choices was the “Guide to Buying Pearls.” She’s been fascinated with pearls since my mom told her a story about clams. She has a big appetite for knowledge. I like that.

Tomorrow is the return to therapy. Please let us know if you’d like to visit Claire. If you’re so inclined, we would love to have you come. I’m going to work on getting a schedule set up via the blog. A number of people have offered to come read Claire books or sit and talk with her. We’d like that and think it will help her. I will let you know how we will coordinate visitors in the next week or two.

Thank you for all your hopes and support. You bless us.

Heidi had a hard day today. Our morning walk wasn’t the smoothest. It was getting hot and Heidi was having none of it. We’ve been working with Heidi on her decision-making skills and talking her through her bouts with negative thoughts. Heidi and Tiffany have similar struggles with self-talk: once a negative thought comes into their minds, it is a short trip to more challenging thoughts. We’ve been able to help Heidi break away from downward spirals with silly things to make her laugh. We used to make her look in the mirror and make a silly face when she would feel sad: the effort to make a silly face was always enough to break the hold. But as she’s gotten older we’ve started working with her to take her own thoughts captive.

Our efforts have been complicated because of Claire’s accident. Heidi has real source for pain and grief right now. The sadness and complaints that comes from not wanting to be outside on a hot day can be a front for other feelings. That’s what happened today. Heidi’s walk was miserable. It ended with a timeout in her room while she settled down and collected herself. We had the same discussion that I’d had with Autumn yesterday: we may not have control over our circumstances, but we do have control over our response to them. Heidi recognized the correlation with Claire’s accident. She didn’t want to cry. She really did have a stiff upper lip; it was her lower lip losing the battle.And it was something that happened at the beginning of our walk pushing her over the edge.

Along our tree covered walk, lilac bushes add some flavor to the canopy. Bright pink bunches of flowers accent the green. We stopped at one along the way to show Claire the flowers. Autumn picked one bouquet off the ground and held it in front of Claire’s face. Tiffany leaned over Claire and said, “Remember these flower Claire?” Her voice cracked before finishing with, “You and Heidi used to love picking up these flowers together.” Tiffany pulled back mouthing “I’m sorry” before closing her eyes as she tried to collect herself. We didn’t know that one other person had been struck with that memory as well. I didn’t find out until after we were home.

Heidi’s stiff upper lip broke when she told me what she’d been thinking at that point in our walk. We had told the girls – and the reason Tiffany mouthed “I’m sorry” – that we wanted to make every effort to not cry in front of Claire. We have reasoned that Claire needs our strength, not to be concerned with our sadness. Heidi remembered this. And mumbling through her tears she told me that when Mommy talked to Claire about the flowers she was sad too, but she “didn’t cry because she wanted to be strong for Claire.” My heart broke for Heidi. But it was going to break some more.

Heidi also told me one of the reasons why she was looking forward to school this year, her first year. She’d had the opportunity to watch Autumn’s triumphant return each day for the last two years, heralded by Claire yelling “Autumn,” running up to her and hugging her. Heidi said she watched this every day and thought it looked fun. She was excited to start school so Claire would do that for her. She’s not excited anymore. She’d rather stay home and help Claire get better.

Feeling my own resolve wavering, I hugged Heidi and asked her if she wanted to help Claire now. I ushered her into the living room to help Claire and then retreated to the bathroom to deal with my own pain. My daughters are growing up too fast. They’re dealing with things that are too far beyond their years. I’m grief-stricken for them. What more could a father ask for than to have three daughters that just want the love and adoration of each other and serve one another to earn it? At the same time it is sweet to have Heidi lean over Claire and whisper, “We’ll get you better so we can play with my doll house together,” and heartbreaking that she can’t do it now.

I love my daughters. They are precious to me and it pains me so to see them go through this. I pray that they will see a victory soon. Because I miss seeing them play with Claire. I miss hearing Claire cry out “Autumn” after school. And I can’t wait to hear her yell “Heidi!”

The streak ended today. Claire started to reflux and lost her last meal of the day around 5:45 PM. While the episode was similar to the first two, we did not need to call emergency services. We were aggressive with our measures and had Claire’s airways clear in a matter of seconds. Switching to action-mode in such a short time frame and for such a quick burst still taxes our energy reserves; however, today’s event was much more moderate than the previous two.

We also realized a pattern is forming that is independent of Claire’s food volume. Claire’s plumbing has been irregular since the accident. When her feeds began while we were at Medical City, she was prescribed a laxative called Miralax that we use on an as needed basis. We gave Claire a dose today and she was agitated all day. Tiffany commented that every time she gives Claire Miralax she seems to have a challenging day. After Claire vomited today, I asked Tiffany if her previous episodes coincided with Miralax doses as well. We have a sneaking suspicion that they do. From an anecdotal perspective, the Miralax instigates digestive action that makes Claire uncomfortable and her vomiting could be apart of the chain reaction. At least that’s what I’m hoping. Because if Miralax is the culprit, then these episodes will be even more manageable. We cut out Miralax today. We will use more traditional methods to clear Claire’s colon: we’ll increase the amount of free water in her system and use baby food prunes to hasten regularity. We hope we have stumbled on a solution.

This minor blip today was couched amongst a very busy day. I spent the first half of the day working on Claire’s standing frame. I took the frame apart, treated all the rust spots with naval jelly before painting the frame over with rust protecting paint. Every joint and bearing was oiled and lubricated. Every surface was cleaned. We now have one of the premier standing frames on the market in great working order and in like new condition. I ordered a single replacement part which will arrive this week. Then Claire gets to take her first test run. We’re excited.

Autumn also have her second to last basketball game today. Heidi and I went to watch and cheer. We also took some photo equipment to capture the team photo. We grabbed the image before the game and the team was all smiles. Had we taken the picture after the game, expressions would have been different. The girls played hard, but they were soundly beaten. They were dragging by the end of the game. It presented the opportunity to have a discussion with Autumn about character and perseverance. She didn’t want to run at the end of the game. She now knows that her dad expects her to run when it’s hardest and I hope  she begins to expect it of herself.

This weekend seems to be passing us by. There just doesn’t seem to be enough hours in the day right now. We hope your weekend is giving the opportunity to rest. Thank you for thinking about Claire today.