Author: Tyler & Tiffany

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!

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!

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!

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.