Bad news but who cares?

Okay maybe I care a little but just a little. Many of you know that Lila's primary insurance through the wonder of our unethical, incompetent health care system does not pay for any of her lung or breathing issues. She is covered by SSI disability which gives her KY medicaid. We were hopeful, after speaking with our case manager, indeed we were banking on medicaid paying between 15% - 30% of the costs of this trip. We found out today that the claim was denied. We can appeal and we will. And I think we have a pretty good chance. The doctor who looked at it said that he felt much of what they did could have been done here. Perhaps that's true. But it wasn't. We've struggled with this for nearly two years and no doctor was able to help the way they did. Ben and I said the same to each other that our only negative feeling amidst all the positive of this experience was that it seemed like some doctor here should have been able to do some of what they did. And in the end medicaid is going to save on hospital bills from this program. But that's logic and logic doesn't always seem to enter into the decisions of government agencies.

But I feel okay. We'll appeal. And really it doesn't change how I feel. I said it in the last post - I would have done anything to get her to where she is right now. Whether we get the help we were hoping for from medicaid makes no difference in my joy at how well she is doing.

All right. So back to some other things that we learned in Denver. We learned that her reflux is a very big problem in her asthma. She was on medicine for her reflux when they did the test to see how her reflux was and it was still really bad. Reflux makes asthma worse in two ways. One way is that as the reflux comes up, it irritates the nerves in the esophagus and the nerves in the lungs and trachea become irritated as well in a sympathetic response. The other way is that when reflux is bad enough which hers is, it can come up far enough to be aspirated into the lungs which also causes trouble. So they doubled her reflux medicine and surgery might be necessary in the future.

Also, a bigger deal to me, is that they figured out why she was passing out. It was connected to the reflux making her breathing bad. Evidently when your reflux is as bad as Lila's is, it can come up and actually make your trachea spasm, cutting off your air supply and making you pass out. I won't bore you with all the ways the symptoms match and how they figured it out exactly, but it fits precisely what was happening with Lila. It is so good to know and understand why that part of it was happening.

We have some tools besides the medicine for helping with her reflux. We will also be followed by a GI doctor who will help us keep it under control.

That's more of what we took away. I'll finish the wrap up in a day or two. I wish that I could find a way to post Lila's happiness at being able to enjoy being outside on the internet so you all could share in it and feel good about it. I hope that you will a little bit anyway. May peace be with you all.

Keeping Up

We got home Sunday night which was wonderful. We are exhausted and worn out and exhilerated and blessed. Lila is doing terrificly well. She is running around and breathing well. She got a cold and we managed it. I am not exaggerating when I say that this trip changed her life. When we left she could not run around without huffing and puffing and stopping. She is running and playing and her lungs are not slowing her down a bit. We got home and Samantha said, "Let's go pick tomatoes and let's run!" Lila said, "Wait! I can't run...oh, I forgot, yes I can!!!" And they took off. We've been watching her closely but she is doing so so well.

I am probably too tired to write down all of the things we took away from the hospital but I am going to start at least.

The biggest thing was a new medicine. This is a combination inhaled steroid and long acting bronchodialator. They don't usually give this to kids younger than five, but the concerns over that were far fewer than the concerns of her constantly being on oral steroids. This medicine is working wonders. The inhaled steroid is better tailored to her type of asthma and she is getting stronger everyday.

We learned another important thing about how we give her her medicine. It's logical but no doctor ever talked to us about it and we just never thought of it. When she is sick and her airways are inflamed is when she needs the inhaled steroids the most to calm the inflammation and make her able to breathe again. It is also, however, when she is least able to get the medicine where it needs to go. Her lungs and airways are already tight so she can't get as much in, so the inflammation gets worse, which means she gets even less in and on and on til she can't breathe. They have taught us to take her peak flow (to see how her breathing is) and if it's low, she gets a breathing treatment to open her up so that the medicine can get in and do it's job. It's simple but makes a great deal of sense. When she was at her most sick and needing the medicine the most, she was getting almost none. This really helped with this last cold she had that she fought off - the first one in 18 months that didn't send her to the hospital. Amazing.

That's maybe a third of the main things we took away. I'll write more tomorrow or the next day. We are so grateful to be home and so grateful for all the prayers that carried us to Denver and back. Words can't express. I have a feeling in me, too deep for mere gratitude, for all of you who made it possible for us to go, who prayed, who called, who wrote. We don't yet know the final bill and if we will have enough to pay it, but it was worth it. Watching my little girl run around, seeing her joy in being outside, her wonder at being able to do it, I would pay anything, do anything. Thank you all so incredibly much. God has touched our lives through all of you.

I will share more soon. Blessings and peace to you all.

Sorry it's been so long since my last update. I've been having technology issues. We did get to leave Denver Saturday morning after going to the hospital for a last check. We have been so fortunate and blessed. I will write when we get home tomorrow.

Homestretch

Yesterday was more recovering. We got some results back. The cell balance between eosinophils and nutraphils (yeah, look how smart we are now) in her lungs which control different types of asthma, looked good. The docs say that's the new medicine she's on and that that's what they hoped to find. The other important test about whether there are lipid laden macrophages (see? we're learning big words) will be a couple of days. That will tell us to what extent she has been aspirating food and stomach contents. Also we are waiting to see if anything grows in the cultures from the tissues they took.

Yesterday she did some more breathing tests and a bit of running around. She really is doing remarkably better. She is starting to get a little cold and the doctors say that will be the test. She hasn't had a cold in 18 months that hasn't sent her to the hospital. But she is SO much better. And we have so much better tools to tell when she is beginning to go down hill. This has been life changing for us.

Today we do a swallow study. We know severe reflux is perhaps the biggest puzzle piece to her asthma but there is concern that she is aspirating from the top end too and that her swallow coordination is poor. This will tell us that and if that is the case there are things we can do.

And.....the docs say tomorrow can be Lila's last day!!!!! That means, if all goes well, we will be home SUNDAY!!! We are so ready. This has blessed us in so many ways but we all want home. I told Lila and Samantha today that we would be home Sunday and what the first things they would do would be. Here are there answers in the order they were received. Lila: "I'm going to get out of the car and run all around like crazy because I can now!" Samantha: "I am going to run around and hug our chickens and let our dogs be crazy with me." Lila: "I'm going to go in and kiss all my toys!" We are all ready.

Speaking of toys...yesterday a woman who we didn't know somehow tracked us down through the newspaper article that Lila was in and brought two bags full of toys for the girls. The kindness of stangers amazes me. And speaking of strangers, we miss our friends. I talked to several of our friends in the last few days, and got a wonderful email from another friend and I miss them. I am feeling really fortunate right now. Our life is going to be changed and our friends have stuck with us on this whole horrible journey. Thank you. And thank you to those who have never met us but who are sending prayers our way.

I will post what we find out today and then soon a whole kind of wrap up of all that we have found out. Thanks all.

This will be brief because it's late. Most of what we will learn from this procedure will be from the biopsy. Some we'll know tomorrow and some later. Structurally her lungs look good although her airways are inflamed which makes sense for who she is and what she's been through. She's still dizzy and sleepy and will take a few days to recover.

She's out now. She's still asleep but came through all right. More later.

be still my soul...

Today was a slower day and we got to leave the hospital around 3:00 which was nice. Lila did some breathing tests today. They gave us another piece of the puzzle, part of the pattern. We learned that right now, fairly healthy, she has a 25% reduction in lung capacity without her bronchodialator medicines. That is significant but pretty much what we would expect. It points us on a path though, and that is helpful.

Tomorrow is surgical procedure day. We have to be at the hospital at 6AM. They'll put in the IV, and sedate her. Once she is out, they'll take her and put a tube with a camera up her nose, down her throat, and into her lungs. They'll take a biopsy while they are there. It should take about an hour. It's pretty low risk and will tell us a lot. But, oh, it scares me. It twists my stomach in knots and the tears seem really close to the surface today. It's silly really. They do these often here but this is MY baby. It's a hard lesson to know that I can't protect her from everything. All parents have to learn that but somehow it never sunk into me. Maybe it still hasn't.

I'll send a quick update via phone in the morning when she is out of surgery and then write more later to say how it went. Please pray for her. And for the doctor to be careful and gentle. And for the answers this will give us. "Be still my soul, the Lord is on your side. Bear patiently the cross of grief or pain. Leave to thy God to order and provide; in every change He faithful will remain. "
I'm listening to this hymn a lot tonight.

One more thing...

We went to the farmer's market Saturday and at the cupcake stand there was a woman who really wanted to take the girls picture. She posted it here: http://sugar-bakeshop.blogspot.com/ It sure doesn't look like they're having a rough week, does it? This picture lifts my spirits. As long as there are cherries and farmers markets, they can get through the blood draws and IV's, the missing home and feeling left out.

Tired, so tired...

I do feel absolutely exhausted. Ben is putting the girls down and all I want to do is go to sleep with them, but I haven't updated. So many of you have told me that you check often and all of you are who made being here possible that I want you to know what is going on, but I am tired. Like I said, it is a different tired - I don't feel beaten down; I feel hopeful.

Well. Friday we did Lila's last round of allergy testing, met with the nutritionist, and had our end of the week meeting with the doctors and social worker. We also go the results of her ph probe. Even on medicine she is still refluxing acid pretty significantly and refluxing non-acid stuff often. They said 39 times in 24 hours! The non-acid reflux doesn't bother the digestive system but it does effect the lungs and seems to be a major part of this puzzle. Another doctor is going to look at the results on Monday and we'll know more about what they are going to do then. At first, it sounded like surgery was likely - to tighten the area between her esopgogus and stomach so that she can't reflux as easily. I don't think that has been ruled out but it looks less likely. We'll know more about this piece of the puzzle tomorrow.

She also had her allergy testing done and the results were crazy. They say (and these are the leading allergy people in the country) that she is NOT allergic to mold or cats or dust mites or almost anything. She was allergic to two trees - box elder and hackberry (both of which are everywhere around in KY) and could explain why she had a rough spring. They say that she will likely get more allergic, but that's it for now. But even that, they said, could be enough to have made for a bad spring for her.

They also clarified the role of the mold exposure that she had in the parsonage that we lived in. It doesn't make a huge difference but it was helpful for us. They think that Lila likely had asthma anyway that would have shown itself. Even though she's not allergic to mold, they think that living in a house with concentrations like that was an irritant. She would not test allergic to cigarette smoke either, but living in it would really bother her asthma. That was their comparison. It's nice to have an expalnation finally for what set off this chain reaction and that that exposure was only exacerbating something that was already there.

Plans for this week are for minor surgery (but it feels major to me!) to do a bronchoscopy, a swallow study, another exercise test, and a series of breathing tests. Tomorrow we actually had nothing on the schedule at the hospital. We are supposed to go in around 9:30 and it is almost certain that they will have things for Lila to do. It's been such a crazy weekend though that I would love it if they would let us come back to the RMH after that.

Lila is also really tired. She and Sam both are showing signs of the stress. It's so hard on them. Today we took them to the Disney store. They were each given (by several people) a little bit of money to spend while we were here and that's where they wanted to go. While we were there several people recognized Lila from the paper and the news which was wild. I was also getting a couple of things. Someone before we left gave us a Disney store gift certificate and I used it to buy toys to give to Lila after a tough procedure - blood draws or IV's or the ph probe. And then we'd give Sam one then as well. It seems to make it more bearable for Lila. Well, someone stole our stash of toys out of our car, which upset me so much. So I was picking up a couple of things so I would have something if they needed to stick Lila tomorrow. When the Disney store manager heard who Lila was and what had happened she gave each girl a fairy doll for free. This whole experience has shown me that I am too cynical about human nature. We have been helped so much by total strangers, and by those whom we know that it might be hard to be cynical again.

The hospital people have been really terrific. They take good care of Lila. Before there is a procedure someone comes in and talks to Lila about what's going to happen to her. And if it is a painful thing, they provide distractions (bubbles and viewmasters seem to work well for her) and those things really help. Lila has started having regular nightmares about being hurt in those ways and I hate it. The social worker says that she is showing signs of trauma but that she is dealing with it well. I hope so. I hate this for her and so want to put this behind us for good.

Hope and fear really do march side by side along in me. I keep praying but lately my prayers are just, "God,..." and then silence. I think God can see my heart and knows the rest. Thanks to all who are lifting us up in prayer - the emails and letters have made a tremendous difference for us. We miss you all. We miss home. We miss church. We miss our friends. We knew this wouldn't be fun and it isn't, but the care we are receiving here is better than even the best I had ever imagined. Take care all and know we love you.

Quick update to say that I'll write more later. We are glad that it's the weekend and we have a short break from the hospital. We are all exhausted. We found out a lot yesterday. I'm going to get to a computer and write later today.

I didn't post last night and I'm sorry. I was REALLY exhausted and the girls were needing a lot of attention. Yesterday was a strange day but first things first.

We continue to learn more and to be amazed. My dad gets here Saturday with his laptop and when I can type I will post a long post with lots of stories about how wonderful they have been with Lila.

Yesterday we had blood work, first round of allergy testing, kid exercise test, meetings with docs, parents group. Her first allergy testing was unremarkable. They did foods mostly which we have never had trouble with and goat and chickens (do they have dander?) and we were happy to find she is not allergic to farm animals. The exercise test showed the ways that her asthma does flare up which gave us another piece of the puzzle, as the doctors have been saying. Lila was a champ. She got her ph probe out at 5:00 and we got to come back to RMH. She was so happy. She was running around yelling, "I'm free! I'm free!" We will find out the results of that today.

Samantha is mostly doing really well. She is starting to wear out a bit. We are all looking forward to the weekend. She met with the child behavioral social worker at the hospital yesterday who was so good with her. Not many worries with Samantha evidently. The social worker, Jennifer, said that Sam did mention that she used to feel sad because mommy always left and went to the hospital with Lila, but now sometimes daddy goes and mommy stays with her. I'm glad we've made that change. She also told Jennifer, after being asked to help clean up her toys they had been playing with that she "wasn't really a clean up kind of girl." Evidently Jennifer then asked her who did the cleaning up at home and Sam's answer was ,"no one." Oh well. One more thing to work on when Lila's better.

Now for the strange. The hospital we are at, National Jewish received a gift of 10 million dollars yesterday for pediatric asthma work. So there were reporters, photographers, and even a camera guy. They somehow decided ( I don't know how) that Lila would get pictures and we'd get interviewed. So between tests and caring for her we (mostly Ben) were talking to two different reporters. It was mostly cool, although the cameraman was a little annoying and didn't seem real aware and respectful of the fact that we were running a test on her while he was filming. But the other two were great as well as the hospital PR guys who were around. So check out denverpost.com. I haven't been out to see the actual paper (just the website) but I think our girl made front page! Isn't that crazy? Only Lila.

I continue to be grateful for the letters, emails, phone calls, comments here and the prayers. It seems so odd to have real, solid hope again, but I do. I am exhausted like I get when we come home from days in the hospital. But it's different too - like a postive tired. I am starting to really believe that our life is going to change. Thanks all.

We've learned so much today. We've learned more about Lila's lungs and allergies in two days here than in two years before. We have great docs in KY - it's just that these people are THE experts. We have numerous ideas and paths to investigate. Today we met with the pulmonologist and Lila had her ph probe. That was awful. Tears were shed by us both. But we got through. She's in the hospital again tonight but Ben is going to stay with her. Tomorrow - blood work, allergy testing, kiddie exercise stress test, more doctors, breathing work - plus classes for me and Ben and art therapy for Lila.

I continue to be amazed at the people working here. They are not only so knowledgeable but so good and attentive to Lila. It is incredible. We also start another new medicine tonight. After hearing the doctors talk, I have very high hopes. I'll let you know how tomorrow goes!

Today she had CT of her sinuses, a CT of her lungs, a test for nitrous oxide in her lungs, she learned how to use a peak flow meter, met with a child behavior expert, was examined by two doctors. We broke free for dinner with Sam and now we are at the hospital all night for observation. Tomorrow we see the pulmonary doc and she gets a ph probe. That's rough on her.

I will update then. One thing I have to tell is that out hospital room has these giant windows looking out on greenspace and the Colorado sky. Tonight as I was thinking of the day the nurse said, "look!". And outside were two rainbows arching across the sky. Maybe it's prooftexting or sentimentalizing, but it felt like a promise from God.

We continue to be so grateful for the emails and phone calls. Hope is palpable in our family tonight.

We have also learned new things. New ideas about her lungs, new tests, new information about old tests. Communication is so far great.

I'm wishing for a computer. It's hard to say all I want to say texting from my phone. Please excuse typos and brevity.

First, I am SO proud of my girls. Lila was really a trooper today. I wish everyone could have seen her, determinedly focusing on her breathing - in, out, hold - just the way the docs said. Amazing.

This place is great. I cannot tell you(especially from my phone) all the things they have done to make Lila comfortable and prepare her for the difficult things. I have wonderful stories.

I already take it back. More details later.

We have been at the hospital for 20 minutes and so far I'm not impressed, partly because I am so nervous. We've not actually seen any medical personnel. And there's lots of time to change my mind. Hopefully I'll write later and say, "I was so wrong! They are amazing!" Here's hoping.

Countdown!! Things are rolling along here. We worshiped yesterday at South Broadway Christian Church (DOC) and that was pleasant. There were several people there who were really friendly and understanding. The whole church looked like a castle which Samantha loved. Lila told Mark, the pastor, that his church was a castle and he was the king. He liked that. Samantha loved Sunday School and we look forward to returning next week.

After church we ate at the best Asian restaurant I have ever been in. And it was cheap! We came back to the house and got the girls to nap, hoping to get them on a better schedule.

Last night we picked up Ben's stepmother, Linda, from the airport. The girls love her and she will be another pair of hands to help us this week.

And tommorrow is the day. The last two days of settling in have been downright pleasant. But I am not looking forward to tomorrow. Lila is not either. And I really don't want to be away from Samantha so much who is feeling extra sensitive and needy right now. It's just hard. I am scared too about what if we somehow don't get answers. I'm just a jumble of worries about it all. But I continue to be grateful that we have made it this far and I am trying to let hope be strong. Thank you all for your emails and messages. Even if I haven't gotten back to you individually yet know that it's appreciated and that it really keeps me going. Blessings on you all. I'll let you know how tomorrow goes.

The GOOD, The BAD, and The UGLY

The GOOD: The Ronald McDonald House is amazing. It is beautiful and fancy and welcoming. Our room is great. There are giant playrooms all over. There's even one connecting to the kitchen so the kids can stay occupied while grownups cook - blessings on whomever was wise enough to plan that. There is a giant big wheel and tricycle track inside since so many kiddos can't be outside. And the people! The volunteers here are great. And we arrived just before a group brought in a giant rib dinner for the families here. The other parents, though, are so far the most wonderful part for me. Ben of course has talked to them all by now, but even I have made a few connections. Because you don't have to explain about how tired or worn down or worried or stressed about being away from home you are. They just know. And that knowledge is a balm.

The BAD: It is 5:30am and the girls are awake. I have no confidence that they are going to adjust to this time change thing. We are all a little discombobulated by it. Who knew that two hours would be so hard for the girls to adjust to?

The UGLY: Last night when we were in line for the aforementioned dinner, I met a woman from Texas who had been here about a week. We chatted a bit as we got our food. I was far from my best. Tired after ten hours of driving, bleary, shaky, rumpled and not fit for making new friends. But I did my best. I got food for Lila and me, and made it to the table where I promptly turned my very full plate upside down on the table when I dropped it. I stood there and stared at it for a minute, my tired brain not quite grasping what had happened. I sighed and felt like crying. Before I could process what to do next, my new friend from Texas and two other moms had rushed over and were cleaning it up and pushing a new plate into my hands and practically shoving me toward the food. Then a few tears did escape. I tried to put enough words together to thank them. The Texas mom said, "Oh honey we've all been there, the only way we get through is helping each other. I know exhaustion when I see it. You eat, take a shower, and get some sleep. You'll feel better tomorrow." And I do. Largely because of that kindness and undestanding. Which circles right back around to the good which is where I am right now.

We are at a hotel in Topeka, Kansas tonight. It's 7:30 local time and Lila, who is not on local time, is already asleep. Ben is trying to get Samantha to sleep. She is exhausted but really out of sorts.

They have both done pretty well so far. Lila's breathing seems to be getting worse to me and I am glad that we will be in Denver tomorrow night.

Tomorrow is our long drive and I am blessing the mystery giver who gave us the travel DVD player. We will arrive late and then go yo church Sunday and hope to get settled into the RMH then as well. Our first hospital day is Tuesday so stay tuned. Thanks for all the prayers

Farm Girls

Okay. I am posting one more time before we leave. Lila had a pretty good day and got to be outside for about an hour this morning and a bit this evening. Here are my farm girls. I love this place. It was a good way to say goodbye for now to our home.

Longing

In the almost two years we have lived in this place, I have become unbelievably attached. Attached to the church, attached to the community, those things for sure. We have been supported over and over again by a church that was expecting to get a team of two ministers not a family with a sick child that needed to be taken care of. We are trying to restore the balance and they are hanging in there with us, mostly gracefully, faithfully, and prayerfully. There have been bumps and there will be more before its done, but we are trying to stay on the right road.

So it's true, I am attached to the church and community. But even more is the community of people we have stumbled into. Farmers and firefighter, teacher and carpenter, artist and doctors. Women and men who are seeking to live intentional, sustainable lives. Women and men who have become family, who love us, who inspire me, who floor me with their gifts and talents and thoughtfulness. And the realization that they want my family in their lives just seems like a dream. Getting ready to leave and saying goodbye to them has been hard. At the bank today getting the money out for our trip, I said to Sarah, the drive through teller and the Baptist minister's wife, "This will be the last time I see you so take care." She laughed at me a little, and said, "You're not leaving forever, right? It's just three weeks." And she's right; I have been saying good bye like I'm leaving forever. I think because in terms of emotional time, it will feel like so much longer. Every time my child is hurt, even in the quest to heal her, it feels like it takes days and days in soul time to recover. There will be a lot of that. When I come back, I will have gone through one of the most challenging times of my life and I will have gone through it without this net of people that I have come to rely on. One of them, a woman whom I love and admire, a doctor and thinker, older and much wiser than I, said to me that the net of people will still be with me every step of the way. And yet as I get ready to leave it feels like a series of hard goodbyes. How did I get so integrated in this place?

The other attachment is to the land. We have lived on this little plot of land, our five acres for just over a year now. And yet my roots are deep. I love the giant sycamore tree in the front where my girls play. I love the field out front that Ben has let go for the birds - and the swallows, bluebirds, buntings, finches, and killdeers that make their home there. I love the butterfly weed we found hiding in the back hay field. I love the hazy, summery way that the sun going down looks from our back porch. I love the smell of the air and the breeze on my skin. I love the taste of the first yellow raspberry from the bushes we planted last fall, a promise for seasons to come. I love the taste of the first tomatoes, White Currant and Sun Gold that we had today - they taste like summer. I love our first corn on the cob that we had last night from our land - an entire meal from here, our chicken, our potatoes, our carrots, our zucchini, ours, ours, ours. It made me feel even more rooted. I am literally nourished, body, mind, and soul from this place. Being away will be hard. When we return we will have missed a lot of harvesting. We won't recognize our chickens, and we may even miss the first egg they lay. I will miss the giggles and the laughter from my girls as they discover new things, taste the first fruits, and wonder at chicken antics. I can't help but feel sad at being away during this time of life and flourishing.

But it's worth it. If we get even one more piece of the puzzle of Lila's health, then it's worth it. Worth the goodbyes, worth the missed vegetables, worth the hassle, even worth the needle sticks, IV's, and the surgeries I'm praying she won't have to have. Because the thing is, I am so tired of hospitals. I am so tired of saying to Lila, "don't run around, come inside into the air conditioning, how is your breathing, why don't you rest." My dearest wish is that we will come back with enough answers so that Lila can run all around, run and run, and enjoy these long summer days that are the right of childhood. That she might not have to endure more hospital visits, more fear because she can't breathe, more exhaustion. Our life here is a miracle, our friends, our church, the giving that we have received, all miracles to me. And still I ask this. I know that so many are praying for her. Pray that she can learn what normal is. Pray that this time in Denver is not too rough on her. Pray for smart doctors and gentle nurses. And please, pray that her mommy is up for the challenge of keeping it all together.

This will be my last long, rambling post before we leave. I have no idea what the computer situation will be at the hospital or the Ronald McDonald House, but I will post daily from my phone once we get there on Sunday. One day, two nights left. Ready, set,...

Updates: Lila, Giving & Receiving, Denver, Me

We are home from the hospital. The attending doctor basically wants us to keep Lila in a bubble until we go to Denver. I'm not sure she was quite ready to let us go home. Lila has definitely started heading back downhill. She is resting more frequently, in between bouts of energy and cuteness. If you catch her at one of those moments, you would never even know she was sick. It's hard for her not to be able to keep up with Samantha. But. She is home. She is holding her own. And I feel sincere gratefulness for that.

The gifts have continued to come in. Since I last updated about this we have received $6100. We have received from friends near and far, the largest gift coming from friends who are a constant inspiration to us and reminder of God's presence in our lives and our own call to live out our faith. We were truly humbled and bowled over, and we hope to share more with them for years to come. The other large gift came from the community and church of North Middletown where Ben served for four years and where both girls were born. They still claim us and love us and words cannot express how it feels to know that a whole town is praying and journeying with us. I am running out of ways to say thank you. But I will keep trying. That puts us at around $16000. Around $4000 of that has been given explicitly to help with trip expenses, and the cost of being gone for almost the entire month. The good news is that we have $12000 to put toward costs from the hospital. That is enough that we feel safe going. The total still looks to be around $20000-$25000. If we can get to $15000 we can finance the rest. It looks like we will. When we first heard about this and realized that the only way to get Lila this help was to spread the word and ask for any help anyone wanted to give, it seemed completely impractical that it could happen. I am in shock. I know of nothing else to do but to surrender to this wave of gratitude. This is a miracle to us. We have the temerity to ask God for another miracle, to give us answers to heal our girl so that she can run and play and stay out of the hospital.

We leave for Denver a week from today. This time next week, we will be in St. Louis, our first night on the road. The preparations are huge. I am more and more nervous about this trip, about what we will put Lila through and what we will find out. I will update frequently while we are out there. Her first day at the hospital is July 14. We found a Disciples church to attend while we are out there and spoke with the minister. It always fun to see what a small denomination we have - we knew several people in common. It will be nice to have a place to worship; I need that time and space right now and will as we go through this. We also found out more about the Ronald McDonald House that we will be staying in. They provide a real ministry to families, and I hope we will be able to serve also when we return.

I am overwhelmed. I am tired. I can't imagine normal. I am dreading putting Lila through even more. But there in the midst of all of this, like a candle light glowing through a thick fog, there is hope shining. The love and kindness we are experiencing are keeping it burning, and I pray that God will continue to help me fan the flame. Thank you all for your care.