Month: July 2010

Hello again, this is Emily. Just a quick note from IBC regarding the fund for Claire. You may now also give online by going to http://www.give.irvingbible.org. You would then click on “Click here to make a donation to IBC through American Bank Draft” and, since this is done via a live check and not a credit or debit card, you would, again, put “Claire Martin” in the memo line of the electronic check to designate your gift’s destination. This will then be deducted from your checking account in a few days after you submit the information on the website. Thank you again for your prayers and love during this time, they mean more to us all than we can ever express.

When I was a kid, I would have a series of recurring dreams whenever I had a fever. One involved my mom turning into a vindictive, angry goose who chases me around corners. That has always been a family favorite. One in particular has continued into adulthood. It is a nightmare that is difficult to recall and have a hard time describing after it wakes me from sleep. I remember the emotions and feel of the dream much more than the imagery. It’s heavy. Suffocating. I feel like I’m being squeezed from all sides, like I’m trapped and unable to escape. It’s a horrible dream.

The nightmare I’m living and that dream converged a couple of nights ago while I was staying with Claire. She had fallen asleep and I’d laid down to sleep also. Without warning I felt the oppression and fear from that dream. I recognized the feelings immediately. They were familiar and daunting. I got out of the bed and went and watched over Claire, pacing my breathing and hoping the feelings would go away. I can’t explain the sudden onset, but it shook me up and seeing Claire helped calm me.

I didn’t get to see Claire today. I had a soccer game and we wanted the girls to have a break from OCH today. And the feelings from my dream found me. It started after my game ended. The girls reminded me of a task I’d been trying to accomplish since starting soccer again. When I first started playing in this league, the girls made posters out of butcher paper saying “Go Tyler Go!” Each of them held one at my first game. To her dismay Claire lost hers under the bleachers. I had been meaning to get it back. I got it back today. It brought back the flood of memories from that day when Claire was cheering for me and how she’d told Tiffany she was sad because she didn’t think I could hear her. I remembered driving home after and reassuring he that I heard her cheers for me and they made me happy. I remember reaching back behind my seat and holding her leg to encourage her. With these memories came the oppressive feelings from my dream. I’ve wrestled with them all day. And I have not been able to see Claire to help take them away. I miss her.

Today’s hardships followed a difficult farewell last night. My brother and sister-in-law, Alex and Laura, drove home to Colorado last night. Before this happened I missed my brother and wished we lived closer. This has magnified those emotions. I enjoy the time I have with my brother and wish we had more of it. We miss both of them and hope to see them again soon.

Alex and Laura left with Claire in good repair. It has continued into today. We are continuing to wean her off more meds and she is responding well. We hope the trends continue.

Thank you for your prayers and support. We hope he coming week is a good one.

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!

Hi Folks, this is Emily again. I’m writing because so many of you have asked if there was a way for you to send financial help for Claire’s care and continued recovery. Tyler and Tiffany have been reluctant to accept monetary help, and especially to use this blog as a vehicle by which to accept money. This blog is intended, and will always be used, as a source of emotional therapy for Tyler and Tiffany; as a means of conveying information to all of you; and as a great source of love, prayer and support from our wonderful friends, family and even strangers who have done so much already to sustain us during this unexpected and life-changing event. Some very loving friends have, however, gone ahead and set up a charitable fund for The Martins-Dallas Branch. For this generous act we want especially to thank Jon and Becky Barnes, Gary and Heidi Lindsey, Tommy Tucker and those who have worked behind the scenes for Claire. Their continuing kindness toward us all can never be repaid, and while the words “thank you” are too small, we do sincerely thank you. Therefore, if it would bless you to contribute to Claire’s recovery expenses, you can do so through Tyler and Tiffany’s home church in Dallas, Irving Bible Church (IBC). The specific information follows.

Checks may be written to “Irving Bible Church” with “Claire Martin” referenced in the Memo line. They may then be mailed to:

Irving Bible Church

2435 Kinwest Parkway

Irving, TX 75063

There is not currently a means of giving online, but they are exploring the possibility of it, perhaps through PayPal. I will let you know if there are developments on that front. If you have any further questions, please contact Tommy Tucker at IBC at 972-560-4600. All donations are tax deductible, and IBC sends out quarterly reports as well as one report at the end of the year for your own filing purposes.

Thank you all so very much for everything you have already done for us, whether you have been able to physically be in Dallas or not. Your loving support has meant more than any financial gift ever could. Your continued expressions of love through prayer and good wishes remind us that in the middle of all this darkness we have yet been greatly blessed.

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!