Month: August 2010

It’s time for another short update since there is not much to report and I’m tired.

Claire’s streak continues. We increased Claire’s feeds slightly today and feel that we’ve found an equilibrium volume that we will test for a while. We’ll continue to measure her weight to see if it is fluctuating, and hopefully we’ll see that she’s gaining at a normal, three year-old pace. It’s been nice having a run of three days without the need for emergency services. Claire’s stomach seems to be more stable: we’re not seeing the slightest signs of reflux right now.

Tiffany worked Claire out today despite it being an off-therapy day. By the time 6:00 PM rolled around, Claire was spent. She was calm for the rest of the evening and eager to sleep once 8:30 PM arrived. She’s sleeping soundly in her room, and for the first time since this began, Autumn and Heidi have joined her. The change is hard on them. They’ve gotten used to sleeping on our bedroom floor, close to us both. But as we continue to rebuild a routine, this piece of normalcy will serve them well.

We hope your collective weekends are enjoyable and you get to relax with friends and family. Thank you as always.

A new win streak has started. Claire has broken the one day on, one day off pattern she’d started on Sunday with emergency services. It’s a small victory, but we’ll take it. We kept Claire’s feeds to much smaller doses the past two days and we haven’t had any reflux episodes. We are still on edge whenever she makes an odd noise while feeding, but our anxiety has been unfounded for the past two days. I’ll gladly continue the anxiety as long as this continues to be the result: it’s an exchange I will make.

We also continued our new routine of keeping Claire with us while she falls asleep. She relaxed in Autumn’s arms instead of Tiffany’s tonight. Autumn held Claire for a solid 30 minutes before politely asking, “Can you hold Claire now? I can’t feel my leg.” In addition to the pin pricks that comes with a sleeping appendage, Claire’s diaper had printed itself on Autumn’s leg leaving red creases and wrinkles. She’s a good big sister, and she wore her discomfort with honor.

Claire began her day at therapy with her first return to the pool since inpatient therapy. She enjoyed the water, though she still protests when her soaking time is interrupted with actual therapy work. Yet she perseveres.

We met with the orthotics group today to measure her feet range of motion. While we have seen improvement in her feet flexibility, we are still concerned about losing range as she continues to point her toes. The therapists started the first stage of serial casting today to make sure we protect her abilities. The casting involved the most strenuous stretch to date for Claire’s feet. In order to build the boots, the therapists have to get Claire’s feet as close to neutral as possible. Claire’s right foot has retained most, if not all of her range. Claire’s left foot, however, is tighter and has toned a little more. It’s not much, but it could deteriorate farther if not treated aggressively. When we started her evening stretch tonight, Claire expressed some cries of pain on her left foot. We think it’s a little sore from today’s casting session. So we took a break this evening and will check tomorrow to see how her foot feels. Overall, we’re glad she is getting the custom formed boots and believe they will help her maintain her range.

I’ve got some projects on the weekend’s docket. We received the standing frame yesterday and while it is used, it is in good working order. The cosmetic issues are easily remedied. I made an enjoyable trip to Home Depot today to get some of the repair materials and I’m all set for the work this weekend. I think I’ll just lay out my new tools and equipment in a row and admire them for a while before actual work begins. They’re just so nice to look at. But that’s not all the shopping I did today. I followed up the Home Depot visit with a trek to Fry’s to get an adapter for Claire’s new headphone set. I wasn’t satisfied with off-the-shelf headphones, so I ordered a studio quality set earlier this week. They’re pretty awesome. Claire likes them too.

Every day I’m reminded of how many people are pulling for Claire and I continue to be humbled. Thank you for your support and hopes. Enjoy your Friday!

Claire had a good day today. We diminished her food volume today even more than we planned because Claire’s stomach was still a little unsettled. She still received a healthy amount of food, however, it was a little less than we plan to give her long-term. ‘Long term’ is about four or five days right now. We are constantly re-assessing how well Claire is handling her food and each day’s schedule because things change hour to hour. Yesterday is a good example. Claire hadn’t shown any signs of feeding trouble throughout the day. She was on her final feed, getting ready to call it a wrap; next she was over my knee gasping for air. Watching her while she feeds has become our big time consumer now. But until we feel we’ve got a handle on what she can tolerate, we will continue to observe her for the slightest changes.

Today’s semi-normal schedule was punctuated with an enjoyable visit with the Damoffs. We met George and Jacob today. Both Tiffany and I were all smiles when we met Jacob. I’d been eager to meet him since Jeanne and I started exchanging emails. Both Tiffany and my mom have read Jacob’s story, but I haven’t been able to pick up Jeanne’s book because of the emotional burden. I was hearing bits and pieces about the story from them and decided to visit Jeanne’s image library dedicated to the book. It was Jacob’s smile that encouraged me the most. He was happy. He was the same today. And he had the same encouraging effect on me that his pictures did.

George and Jeanne have become our mentors, without us explicitly telling them. They’ve been on this path for 14 years. They share the accumulated knowledge and wisdom from those years without reserve. We are the richer for it. We look forward to seeing them again soon.

We tried a new bedtime routine tonight with Claire that went very well. Claire has stayed up for a couple more hours after she gets her meds for the past few nights which is different from nights previous: Claire had established a pattern of falling asleep within 45 minutes of receiving her meds. Tiffany and I were a troubled with the new pattern. I’d check on Claire multiple times and each time her eyes were wide. I was also seeing emotion in her eyes. I felt like she was expressing some anxiety and pain. It seemed like the meds were calming her down physically, but her mind was still active. I believe that Claire is very aware right now, and the idea of leaving her in her room, wide-eyed and alone was causing me a lot of discomfort. She may be calm on the outside, but she seemed to be nervous on the inside. So tonight we kept her out of her bed for longer. We brought her into our room so Tiffany could cuddle with her. Claire began relaxing on her own. Her eyes started getting more heavy and her body let down. When we laid her down to bed 30 minutes later than normal, she seemed more assured and ready to fall asleep.

It was also therapeutic for us. We haven’t had a lot of time to just relax with Claire. From the time she wakes up to the time she goes to sleep, she has a full schedule. It’s not about the time quantity with us because she gets loads during the day. It’s more about just holding her and making her feel safe and helping calm her nerves. It’s a routine we will continue because it does such good for all of us.

We will continue to work on her feeds tomorrow and hope that today is a harbinger of a good schedule to come. We thank you for praying for Claire’s recovery and hope the rest of the week treats you well. If you’re in Dallas, try to stay cool. For the rest of you, be thankful you’re not in Dallas.

I’m going to make this one short because both Tiffany and I need to get to bed.

We had another episode today that warranted calling emergency services. Claire is fine and sleeping well right now. It was almost identical to Sunday’s action. We looked at her feeds again and still feel she is getting too much volume. We’re going to back down her feeds tomorrow even more and make the rate a little slower. We are also going to introduce some real food into her diet. We hope these things settle her stomach so she can avoid the hardship on her little, 30 lb body.

Today’s activity wasn’t as emotionally shocking as Sunday’s but it was just as physically draining. Tiffany and I are starting to drag our feet and so we are going to focus on getting to bed before 10:30 PM the next several nights. Here’s hoping that works.

Thank you for your prayers and for continuing to follow Claire’s story. I’ll give a more thorough update tomorrow.

Claire made it through today without refluxing and in an improved disposition. Yesterday’s events prompted us to begin researching alternatives to Pediasure in earnest. G-tube parents had reached out to us previously with offers to discuss dietary solutions: we started taking them up on their offers today. Tomorrow we will be starting Claire on a diet that consists of baby food, carrots if you’re interested in the entrée selection ( thank you Laura for the recommendation). We will be keeping Claire on the carrots for a prolonged period as her digestive system begins to acclimate to real food again. We hope it helps assuage the tummy volatility.

Today marked the first day that we did not have a live-in guest during the past two months. Esther ended her week-long stay yesterday, leaving Dallas’ 105-degree weather in exchange for Colorado’s high 80s and thunderstorms. She was missed the minute she left the house. Esther overwhelmed us. She cooked, cleaned, played and prayed for our family. She was here for the first time that Claire’s G-tube popped out and suctioned Claire’s nose so she could breathe during yesterday’s episode. She cleaned soiled sheets and cleaned the soiled couch when Claire’s diapers didn’t do their job. She helped Tiffany clean Claire’s mouth and brush her teeth. Esther came down her with a mission. It wasn’t apparent to us when she got here, but we were clairvoyant when she left: she was here to serve us in any and every way she could. She did. She served us in more ways than we could have come up with. Esther is invaluable and Gordon is a rich man for it. We love you Esther.  And Gordon, we love you too.

I have also been grossly negligent with mentioning that Tiffany’s sister Krissy left last Saturday. For that, I apologize. Krissy was with us when we brought Claire home. She helped us get the house ready for Claire’s return and stayed up many late nights listening to us and crying with us. Krissy came down here the week before her own daughter was scheduled to go into surgery. Coming down to be with us in spite of the fact that she was caring for her own kids shows us how much she loves and cares for us: We love her equally so. We are so thankful she was able to come and we hope to see her again soon.

Tomorrow marks week two of Grapevine therapy. We’re scheduled to receive Claire’s standing frame this week as well. I’ll be sure to include pictures the first time Claire takes it for a test drive.

Thank you as always and sleep well!

We were shaken today from whatever semblance of normalcy we had obtained since coming home. Claire completed a feeding around 12:30 PM today and we were calling emergency services at 1:00 PM. Before telling the story, know that Claire is all right now. She is sleeping well. I won’t sleep as well tonight.

Claire has been having trouble keeping her meals down from time to time. We’ve had to monitor how much she eats in one feeding because we’ve found that the recommended dose has prompted some reflux. The trouble has accompanied the evening feeding for the most part. Today’s episode happened after her midday feeding. When Claire begins to have reflux, we coax her to breath and calm down and she normally responds. The coaxing didn’t work today. Claire lost all of her lunch today. The trouble began when she didn’t discharge all of the liquid meal. Some of the liquid was not evacuated completely and caused Claire to gag and choke. By the time I was starting the Heimlich she was turning a pale blue. Tiffany called emergency services immediately while Esther and I worked on clearing her airway. She soon had air back in her lungs and was breathing well. All this took place in less than a minute.

The EMTs checked Claire and found her vitals to be strong and her lungs clear. Once she was breathing again, our biggest concern was whether or not she had aspirated anything. Even though her lungs were clear, we toiled over whether we should take her to the ER or not. We also didn’t want to subject Claire to any further unnecessary poking and prodding in an acute setting. We called Claire’s primary care physician and she helped put our mind at ease by equipping us with the things we need to watch for to make sure Claire hadn’t aspirated. We’re 10 hours post-incident now and Claire isn’t exhibiting any of the signs, and we make sure to check every 10 minutes.

The episode seems innocuous enough, but it was most potent because of the images it recalled for me. The action I had to perform today was similar to the actions I performed on May 30. The parallels brought the emotional burden of that day back to my shoulders. It also reminded us of just how fragile Claire is right now. We’d begun to settle in to the idea that Claire’s big hurdle right now is her rehabilitation and recovery. We’d been lulled into a false sense of security that those would be our only hurdles. We thought we were past the challenges like today’s episode. That sense of calm was shattered today. It has drained us.

We takeaway some more knowledge about how to handle these situations as Claire’s first responders. We are also refining Claire’s feedings schedule to be more kind to her stomach and help avoid these situations in the future. But these learnings come in the wake of another shocking event. What feelings we had of our new normal have been scattered. Tomorrow we start a new “new normal”. We’re uncertain whether that will be sufficient to establish a routine, or if there is another freight train waiting around the corner.

We hope that train doesn’t come tonight, but we’ll be checking on her every few minutes to make sure we can head it off. It’s about time to check on her again, so I’m going to wrap this up. Thank you for your prayers and support. We need them for days like this particularly.