Author: Tyler & Tiffany

Claire had her best night of sleep last night. Aside from 15 minutes in the middle of the night for a diaper change and a repositioning to avoid bed sores, Claire slept through the night. It set her up nicely for today’s Ativan reduction. She was a little more agitated today but we attribute it to the Ativan changes and subsequent withdrawals.

Having her hair done never helps her mood either. Claire has always disliked having her hair done and that hasn’t changed. We give her a shower every other day and each time Tiffany French braids Claire’s hair: it has been the best way to keep her hair our of the way. The tugging and pulling makes Claire very alert but not in a pleasant way. But she sure does look cute after all is said and done.

We’ve started counting down the days to our scheduled discharge date. Both Tiffany and I are eager to have Claire home so we can get her on a more regular schedule and start being a family again. In the back of our minds, however, we are aware that the discharge date could change. We don’t want it to change and we do want it to change. We want to take Claire home but we also know that if the date is extended that means Claire has emerged from her coma completely and is able to intensify therapy. At the end of the day, we, the doctors and the staff all want the same thing: we want Claire to have as complete a recovery as possible and will extend if that is in her best interest.

There’s not much else to update right now. We’re entering the last two weeks at OCH and it seems the last four have just flown by. We hope the next two weeks yields the most updates. Thank you for all the support.

Claire had her most subdued day to date. She was relaxed. She was alert. She was even. We saw the least amount of volatility today as well. The ups and downs, the mood changes, were much closer together than days previous. We hope this is an indication her brain is close to emerging from coma and she will be able to respond to commands with regularity soon. Setting aside whatever the future has in store, we enjoyed the present today and our time with Claire.

Because Claire is doing so well, we got the go-ahead to lower Claire’s morning Ativan dose again, moving ever closer to removing some of the sedation drugs from her system. The corollary is that we increased her Baclofen to deal with any additional muscle spasticity that could result arise from the lower Ativan dose. It also helps make sure that Claire can continue her therapy without regressing. Finally, we also increased Claire’s Amantadine dose today: Amantadine is the drug that increases Claire’s brain dopamine levels to make her more alert.

Tiffany and I got to reflect on Claire’s progress this morning since my mom was staying with Claire. It’s difficult for us to think about the future without reflecting on the past. On the one hand, we need to be positive for Claire and her recovery prospects: we believe she feeds off our mindset and disposition. On the other, we are still grieving the little girl we miss. Striking the balance is difficult and we are not good at predicting when we will be hit with emotion. We ordered a new car seat for Claire today and Tiffany remarked that she has no problem getting rid of Claire’s old car seat. She reasoned that we couldn’t keep the old one because every time we put Claire in it now, she would be reminded of how Claire always insisted on buckling herself. We don’t know when she will next ask to buckle herself. And that uncertainty weighs heavy.

We needed a break to clear our minds and the opportunity presented itself when Claire’s occupational therapist, Lori, offered to watch Claire tonight so we could get away as a family. We escaped for an hour and a half in the Dallas rain. It was just enough of a respite that we got to laugh and short enough to dissuade opportunities for sad thoughts. When we got back, Claire was sprawled in Lori’s lap, relaxed and awake. Lori often jokes about how much agitation she inspires in Claire: we know it’s all a front and Claire loves Lori. So do we.

Thank you for your continued thoughts and prayers. Enjoy the weekend with friends and family!

Claire slept well last night. It could have been because of the long day full of intense activity. It could have been because she didn’t take any naps. It could have been because she didn’t get much sleep at all the night prior. That’s the fun part with Claire’s sleeping: it’s hard to isolate a single variable because so much changes day to day. I don’t think we’re really going to be able to nail down a solid sleep schedule until we get her home. We may get close but it will always be tenuous as long as we’re in a foreign environment.

Claire had a relaxed day today following her good sleep. We had our first equipment consultation today and ordered Claire he own wheelchair and bath chair. We also learned that we may get a standing rack at no cost from Texas Scottish Rite. We’re going to test it in the next few days and see how well it works.

Claire spent the rest of the day chilling out with Tiffany, Alex, Laura, Autumn and Heidi. Everybody reported that Claire was less agitated and subdued than days previous.

I couldn’t comment myself because I was back in the office today. After catching up with my team, I spent the remainder of the day talking with government agencies. We learned that we do not qualify for Social Security disability benefits, so our Medicaid coverage is contingent on a Texas children’s disabilities program. We have started the process which we expect to take two or three months before our eligibility is determined.

Government bureaucracy is only rivaled by insurance bureaucracy. Our case manager has been great; however, we still find ourselves wrestling with the intricate, small print in our policy and making sure that items are billed correctly. I want to make sure that we get a jump on potential problems early before they get too far into the billing cycle. While I don’t care for the number crunching, the insurance company serves as a reasonable proxy for my frustration and aggression from the whole ordeal. The ubiquitous insurance company and government agencies are my faceless punching bags on which I can loose my displeasure. It’s therapeutic for me.

Overall, things feel like they’re slowing down. We know they aren’t and attribute those feelings to the mindless rhythm in which we find ourselves. We feel like we’re in a sort or limbo just waiting for the next big event without knowing exactly when it will come. It’s draining.

We are looking forward to a nice night of sleep to recharge our reserves. My mom is with Claire tonight and we hope that they both establish a new sleep streak.

Thank you for your hopes and support. We hope your Friday caps off a good weak and welcomes in a great weekend.

Claire made her return to the pool today. It wasn’t a triumphant return. It was more of a leisurely stroll. Her audience had no outbursts as well which made for a more controlled environment. There was an intensity in everyone’s eyes as we watched her work with the therapists. Tiffany and I both braced for the phobia related stress we expected for the first time. It didn’t come. We were instead struck with regret and dismay as we watched Claire be carried around the pool with three adults on all sides: it was heartbreaking to think that she was learning to swim and playing in the water just over a month ago. We were reduced to tears again, reminded of how Claire was.

From a therapeutic standpoint, however, Claire did very well. She was relaxed and comfortable. The therapists remarked that they could feel some muscular effort around her trunk while she was in the water. We’re happy to hear she’s trying to use her core muscles more. Claire got to exercise those muscles first on a foam mat, followed by an inflatable neck ring and waist device. Claire was relaxed for a solid two hours following the pool therapy and she needed that relief.

Claire didn’t get good rest last night. Our two night streak was broken. Claire didn’t fall asleep until midnight and had fitful sleep until 4:30 AM. She finally slipped into slumber then until 9:00 AM. While Claire was able to collect bits and pieces of sleep, Tiffany didn’t fare so well. The physical distress led to emotional duress and the pulling of hair ensued. For those concerned, I’ll point out that Tiffany was pulling her own hair, not Claire’s (though if she was, we’d understand why Claire wasn’t sleeping well). Remarkably, Claire was alert for most of the day. Tiffany not so much. Claire’s eyes were open and searching. She was responding to people entering her gaze, especially when they were less than 12 inches from her face.

But her energy was bound to give out. After exercising her for over an hour and giving her a bath, Claire only had enough energy left to protest while Tiffany did her hair. She made a mad dash for the finish line and resigned herself to a more calm state thereafter. She’s made virtually no noise since and is now sleeping soundly.

Today was an emotionally draining day for Tiffany and me. We continue to deal with some of the fallout without knowing how. So we just hope and pray that we’re given the necessary information when the time is right and we rely on the professionals around us to make a wise decision. Please keep us in mind as some other aspects of this ordeal transpire these next few weeks. The state is obligated to investigate events like this. Our investigation has started. I won’t provide details except to say that it is unnerving for me. The process is foreign and adds to the strain. Your prayers and support are welcome and appreciated.

Claire will make her first return to a pool tomorrow. We hope Autumn and Heidi will be able to watch also. It will be therapeutic for all of us to see her in the pool again. It is a great opportunity to overcome some of our irrational fears in a such a controlled environment.

The pool therapy will be on Claire’s second day of decreased Ativan. Claire was much more alert today after halving the dosage for he first time this morning. We enjoyed seeing her eyes open for a significant day portion. Her agitation stayed static compared to yesterday and we hope the trend continues as we continually wean some of her medication.

We discussed her weaning schedule at our Care Conference today. We are very satisfied with the way the medical staff engages our concerns and suggestions. We had a lot of them today. We discussed nutrition and getting additional nutrients into her daily diet. We also discussed changing her feeding schedule to match a more normal cycle. We eliminated her 2:00 AM feeding and boosted the rest of her portion sizes throughout he day. If she handles this well we won’t have to get up at 2:00 anymore. We like that idea.

The Care team also gave us our list of equipment for home care. It was shorter than we expected. We liked that too. We have been hoping that the required equipment wouldn’t force us to get more living space: we want to bring Claire home to something familiar. So we are trying to avoid moving as much as possible. Today’s equipment list indicates that we can postpone or eliminate the need for a move.

We got further insight into where Claire is in the rehab process as well. The Care team is focusing most of their effort toward Claire’s medical treatment as opposed to pushing her rehab schedule. The doctors are waiting for Claire’s brain to calm down further before increasing her rehab intensity. This gave us clarity and helped temper our expectations for the next few weeks. It was information we needed to feed our patience which tends to wane over time.

We are hoping for another good night of sleep tonight. Thank you for your hopes and support.

Medicaid, Social Security and pharmaceuticals were the topics of the day. We started down the winding road of bureaucracy and red tape as we learned the financial mechanisms to care for children with ongoing disabilities. We only caught a glimpse of it. We didn’t like it.

The internal struggle we have now is coming to grips with possible realities we are hoping against: to qualify for these programs means that Claire has not made the recovery for which we are holding out hope. This is contingency planning at its emotional worst. While it is financially wise for us to do, we don’t like it and we don’t like the implications. Nobody wants their child to be eligible for Social Security benefits before age 65 or to automatically qualify for Medicaid for disability reasons.

But nobody wants this to happen in the first place. It’s the hand we’ve been dealt and this is a part of the process, an area of education we never wanted to receive. So we approach this step as a bridge to Claire’s recovery. Like the G-tube and ventilator, we hope that Claire’s qualifications for these two programs will be temporary. We hope the day she is disqualified from them comes soon. I can’t imagine another time I’ll have the opportunity to celebrate someone not giving us money. We’ll party it up big.

Part of he road to that recovery also deals with Claire’s reliance on the meds. We opened up this discussion with the doctors again today. I’d like to see a more proactive approach to Claire’s pharmacological strategy. We have been trying to strike the balance between administering drugs that stimulate and drugs that calm her agitation. The problem is that there are strong sedation effects with the calming meds. So we are simultaneously waking her up and putting her back to sleep. I don’t think she is taking too kindly to it. So I asked the doctors to start backing down on the sedation drugs so we can see how she responds. We cut her Ativan in half for tomorrow morning and will discuss additional tactics at tomorrow’s Care Conference.

We have a lot of questions for the conference tomorrow. We are going to meet with the nutritionist to discuss a more complex diet instead of the straight Pediasure nutrition she’s on now. We are also going to discuss continuous feeds through the night pursuant to a suggestion we received in the comments. We’re looking forward to the meeting tomorrow and hope to have a lot to report.

Claire had a good day today. She had a great night of sleep last night. We hope tonight starts a pattern of good sleep.

Thank you for your support and prayers. We hope many of you got to enjoy the day off from work today. If you didn’t, we hope everyone else didn’t rub it in too much.

This will be short. My brother and his wife drove in from Colorado today. We’re glad they are here.

The holiday brought an opportunity to spend time with the girls away from OCH but amplified our emotional states. We watched fireworks as an incomplete family tonight. It broke our heart knowing that Claire should be here enjoying the fireworks.

We take solace knowing that Claire is a fighter. She challenges us to fight harder. Tiffany and I encouraged each other to match Claire’s feistiness for the next several months: she is working hard, we need to match her efforts. We’re very proud of her.

I plan on giving a more thorough update tomorrow. Until then Happy 4th and thank you for your support and prayers!

UPS delivered pieces of our new reality today. After Claire used the wedge last week to lay on her stomach, I began ordering equipment for our home therapy sessions. Our wedges arrived today, one six inches high, the other eight. It was the first piece of equipment that was delivered.

As we begin to forecast what the future looks like for the near term months, we are making a list of the things we will need to maximize Claire’s recovery potential. We are eager to have Claire home at the appropriate time, and we know that when she is here we will be leading the majority of her therapy. In addition to our wedges we have ordered a new bed/crib, tumbling mat, weighted blanket and vibration snake. We expect the list to grow.

This planning helps us regain some feelings of control. We have a lot of uncertainty about Claire’s recovery potential, but we know that we can control the environment and effort put toward it. The researching, buying and organizing is cathartic for me.

Claire’s exhibited improvement today was more therapeutic than my shopping list. Tiffany and I took Claire for a walk outside and it was her best outing to date. She showed very little agitation and seemed to enjoy the sun on her skin. We managed to catch the one hour in the metroplex when it was not raining: while humid, the walk was nice and temperate.

Claire’s walk followed a long day of rest. She slept very well last night and woke up only once for an hour. She napped through the early morning, only waking to confirm the resounding German victory over Argentina. The rest did her good.

We made a slight change to Claire’s feeding schedule today. Claire has been eating via G-tube every four hours with each feed taking two hours to cycle. This has left us with few hours to do therapy, get baths and take walks. We experimented with accelerated feeds so that Claire only takes an hour to eat instead of two. She did great. No reflux. No aggravated stomach issues. We will keep the two hour cycle through the night, but if looks like we’ll be able to reclaim some working time during the day.

We hope everyone is enjoying their weekend. Thank you for your prayers and support. Happy 4th!

Claire’s elbows were cast today. The occupational therapist fitted Claire for some hard plastic elbow splints yesterday and they didn’t work very well: they left red stress marks on her elbows that didn’t go away for several hours. So we moved to plan B. We spent an hour and a half today padding her arms and wrapping them in hot pink casting strips. Her left arm is showing the most tone, so it received the heftiest treatment. She now has hot pink Popeye forearms.

We had to cut the casts off after they set. Claire wasn’t a fan. The saw was noisy and the vibration was odd. She protested despite plugging her ears for her.

We did learn that she didn’t protest as much when we covered her ears. This was valuable information and led to a solution we should have considered sooner. Claire has been having trouble sleeping at night because of the in-and-out nature of the night nurses. She’s sensitive to the slightest noises. Some of the nurses are very good at being quiet. Others are more heavy-handed. The problem is that we never know who we are going to get each night. Because Claire responded so well to having her ears plugged, I ran to Target and got some of the compressible ear plugs. We cut them down to Claire-size and they’ve worked well at calming her down and muffling punctuated sounds. I hope they work tonight.

We were assigned an appointment date next week for Claire to try some pool therapy. It’s a bigger step for Tiffany and me, but we can’t think of a better, more safe opportunity to get Claire in the water again. We also hope the buoyancy and warmth with help calm her further and reduce her muscle tone. The right side of her body is not exhibited much tone; however, the left side continues to challenge us. She hasn’t lost any range of motion and now we’re looking for similar improvements we’ve seen on her right side.

Claire has a more challenged night of sleep last night. She was very lethargic today and struggled to keep her eyes open. The overcast day and afternoon showers contributed to the general malaise in Claire’s room. We hope Claire’s shower tonight will wash away some of the dreary feelings and prep her for a solid night of sleep.

Thank you for your prayers and support. We hope your Independence Day weekend brings some great rest and relaxation with friends and family.

Autumn had a breakdown today. The drawn curtains and somber mood took its toll on her while Claire cried in the background. She needed to escape.

OCH has a nice garden sitting area that is conducive to emotional talks. Between tears and sniffles, Autumn told me that she wanted her sister back just the way she was. She remembered how Claire would hold Autumn’s hand at night before they went to sleep. She remembered how excited Claire would be to see Autumn after school days ended. She remembered a time that Claire was angry and Autumn laughed at her. She told me how sad she was that she’d done that to Claire. She told me how much she missed Claire. She told me how often she hopes that this is all a dream.

I recall all the times I’ve told my girls that “It’s all right,” or “I’ll take care of it.” I couldn’t reassure Autumn with those platitudes this time. Autumn wants to know that her baby sister will be the same. It’s hard to tell your eight year old daughter that she has to wait and see if her little sister will be how she remembered. We’re trying to balance having honest, candid discussions with Autumn and Heidi while still protecting their claim to childhood. It’s hard.

We decided to take a walk with Claire to decompress. Heidi had made a 4th of July visor for Claire to wear. We laughed when we put it on her, but we were surprised at how well it worked for our walk.

Claire also got some new equipment upgrades. Claire is sporting some new splints for her arms, feet and elbows now. She’s graduated from her old splints because her muscle spacticity is improving. She is now in the middle school of splints: we hope she moves on to high school splints soon which are custom fitted.

Claire also got a sporty new weighted vest. The weight and pressure help Claire feel secure and safe. We hope it helps further moderate her agitation levels.

Overall, there were not any major news events today. Claire continues to do her exercises with Tiffany and me and reluctantly attends her therapy sessions. Her flexibility and range of motion continues to improve. Her agitation continues to moderate. We celebrate these little victories. Thank you for celebrating with us.