Saturday, November 22, 2014

Hello, Baby

Here is the photo of the embryo we transferred. Sadly the other did not survive the thaw, but we are comforted that he or she is with Jesus.

In the meantime this baby looks great. We've never had one who hatched this much before so that was neat to see. Hope we get to meet you in 9 months, baby!






Thursday, November 20, 2014

On the Eve of Frozen Embryo Transfer Five


I'm sitting here on the eve of what I think is our last Frozen Embryo Transfer, waiting until I can take my last meds and go to sleep. I've been thinking about all of the other nights like this one, and how each one has been so different. In so many ways, they're each the same--try to relax, try to get sleep, drink until my belly hurts, and think about the babies I might get to meet.

Before the first one, I was hopeful, optimistic, expectant. We got pregnant, and I miscarried, and I was confused.

Before the second one, I was cautious, but still hopeful. The transfer failed.

Before the third one, I was detached, but still hopeful, if that makes sense. I felt the least connected with the process itself, but I think as a result, I also felt the most peace. That transfer resulted in the pregnancy with Matthew.

Before our fourth transfer, I was weary, afraid, and cynical.I went through the motions but deep down, I really had zero expectation that it would work. That transfer failed.

This is our fifth and final transfer. I think I'm all of those things, and none of those things. I haven't been counting down the days on the calendar, but I haven't been dreading them, either. I've been aware that the day is approaching, but not anxious. I've been cautious, but not cynical. I've tried to hope, but have not been naive.

I reactivated the posts I deleted before our loss in 2012 so I was able to read some of my thoughts from previous transfers. I suppose this is the benefit people keep talking about with journaling.

The one constant has been God's grace. His grace with His generosity, His grace with His patience, His grace with His guiding, His grace with His compassion, His grace with His companionship, His grace with his provision, His grace with His refining, His grace with His comfort, His grace with His rebuke, His grace with His love. Though my heart has been different on each of these nights, His heart has remained the same. It is one full of desire for His glory, for His salvation, and for His deep love for His children. It has always been true, peaceful, just, merciful, careful, purposeful, and trustworthy. God is faithful, steady, and unchanging.

I think tonight, I feel peace. God's peace. I've caught myself sort of deprecating hope and saying things like "why am I even talking about baby names? This isn't going to work, anyway." And then I've caught myself thinking, "But wait. You don't feel that way anymore." It's a reflex of cynicism and loss, but I don't feel like those things are the primary voice in my head and heart anymore. I've conditioned myself to think that way, but God has loosened me of some of it. I have hope, but not expectation. I have trust, but not fear. I truly have no idea if this is going to result in children in our arms or not, but I am not afraid.

The peace is from the Lord. I've tried to be intentional about asking for it, praying for it, meditating on it, and He has been gracious to answer my prayers, and guide my heart to ask for more. I'm the sort of person who works out her faith through lots of questions and running in circles. And I've come to determine that that won't change, and the fact that I still have those questions doesn't mean I don't or can't have peace. Peace comes with accepting that I may not be able to answer those questions.

We asked our Pastors and Elders to come over to our home and pray with us this week, and they did. I don't think they have some secret batphone to God and I don't want anyone reading this to get the wrong impression. But we are instructed in God's Word to intercede for one another and with one another, and this was a ministry of encouragement and blessing to us, regardless of the outcome. We joined them in praising God's character, His love, His plans, His power, His design. Those things are unaffected by what will come.

So I'd ask you to join us in praying the same way we have been praying. Pray to praise God for His plan and purpose in this procedure, in our lives, in our babies' lives, in Matthew's life, in the doctors' and nurses lives, and in the lives of the Genetic Parents and Siblings. I'd ask you to pray for comfort for the Genetic Family, for wisdom and skill for the doctors, and for peace for us as we wait for, and then accept whatever the answer is.  I ask you to pray that the Holy Spirit continue to help us worship and trust and believe, no matter what comes. I ask you to pray for God's peace for us, and most of all, to pray for His glory to be revealed and magnified.

And please give a little one in your life a hug for me, to wish my girls a Happy Birthday. Saturday is their 6th birthday in Heaven. The timing of this transfer has not been lost on me, but we trust God in His timing, too.

Monday, November 17, 2014

Embryo Adoption in People Magazine

Several of my friends tagged me in an article today in People Magazine featuring a family who grew their family through an embryo placed by another family. One friend in particular is personal friends with one of the two genetic mothers mentioned in the article.

Overall, I'm glad to see Embryo Adoption receive positive press. A lot of what the mom interviewed said was life-affirming and she also spoke freely about her faith. I hope the article leads to more embryo adoptions. Their daughter is a cutie. I also think the way the genetic mom has shared her story has paid excellent respect and honor to the difficult decisions and pain and loss that can be felt by the placing family, and also the tremendous blessing and peace that can come to both families.

I take big issue with one major theme throughout the article, and it's not specific to her. It's not even specific to Embryo Adoption. It's the notion that adoption (of any kind) is an answer to infertility. I don't even think people mean to communicate that, but it's so ingrained in our culture that the belief is easily betrayed within a few minutes of conversation.

Embryo Adoption is not a fertility treatment and we need to stop treating it like it is.

I firmly believe that the reason so many children (both frozen and not) are in need of homes is because we've relegated adoption to a "Plan B" for people who can't conceive.

Adoption is a calling, and for the Church, it's a commandment.

It's not a cause or a crusade, either.

Adoption is messy. And hard. And beautiful. And wonderful.  But it should not be entered into as an effort to fix a problem in your life. Children in need of a family need to be loved and embraced and pursued and rescued because we want to give them love, not because we couldn't give that love to someone else. We should adopt because we have something to give and we feel the call to give that something to someone, not just because we want to receive something. It's a perfectly wonderful thing to want a child...even desperately so. But adoption needs to be about the child AT LEAST as much as it's about the parents.

The problem with treating adoption as an answer to infertility is that the byproduct is, by in large (I know there are exceptions), that people think of adoption as a backup plan, when there are millions of children worldwide who need us, the Church, to be their Plan A. People shouldn't adopt just because they're infertile, and shouldn't not adopt just because their biology works just fine. The two issues have become intertwined, when really, they are unrelated. The call to adopt can touch anyone with any variety of biological function. Adoption is a beautiful picture of God's love for us, and it is something He asks us to do to take care of the most vulnerable in our world. His instruction has no fertility contingencies.

Often people ask an infertile couple, "Why don't you just adopt?" Well, why don't you, fertile-Myrtle? Biology has no bearing on whether or not someone is called to adopt. Adoption should be considered because someone wants to answer a call in their heart and we should be listening for that call, regardless of if we can procreate. I don't think every person is called to adopt and it would be wrong for those who aren't called to do so. Adoption is too darn hard for that. But if only the 10% of people who are infertile ever adopt, we will never catch up and children will suffer needlessly.

The other problem with treating embryo adoption like a fertility treatment is that it can open the door to violating the sanctity of life. If you think of these embryos as "therapy" or "treatment" rather than people, then it's easy to forget their humanity when making decisions about their future. This is pretty common in fertility clinics, that treat embryos clinically, not humanely. When the whole reason Embryo Adoption was invented was to honor the humanity of these children, we shouldn't be helping the conversation that contradicts that.

Tuesday, November 11, 2014

Ministering to a Family Dealing with Hospitalization (of a Child) and an Update on Matthew

I've spent an inordinate amount of time in hospitals. I've held bedside vigils for and with both of my grandparents, my Uncle, my brother, and one of my best friends. So I've learned a lot about "being" in the hospital, and about loving on the family members of those ill.

This hospitalization with Matthew was the first time I was the "primary" person though, rather than a support person so I was more a direct beneficiary of the efforts of others.

I thought I'd share the things that have blessed me in case you're in a position to minister to another family dealing with a hospitalization. I wrote this from the perspective of a parent with a hospitalized child, but many are relevant for all ages of patient.

-Pray WITH and FOR the Family: Please pray for the patient, the family, and the medical staff. If you visit, please offer to pray WITH the family. It's such a tremendous encouragement.

-Allow the Family to Update as they Can: Unless you're immediate family, please consider checking facebook, your church prayer chain, or with someone other than the primary care giver(s) for updates, at least during the hospitalization. While it was lovely to know that so many were concerned about Matthew, there were times I just couldn't answer all of the calls and text messages, and I felt rude.  If you're close to the family, perhaps offer to be the "go to" person for keeping the extended circle updated if there are lots of people asking.

-Feed the Family During the Hospitalization: Hospitals feed the patient, and no one else. Especially when the patient is a child and a parent wants to stay around the clock, it gets expensive quickly to eat 3 meals a day in a cafeteria, not to mention, Cafeteria Food usually isn't awesome.  It was such a great blessing to us to have people bring meals to the hospital for us. Even if the person is returning home every day, having a meal made already is one less thing the person needs to worry about while trying to sneak in a shower or a couple hours of sleep.

-Offer Errands: Especially if the hospital stay is unexpected, the family may need someone to go to their house and get essentials for the child or parent, such as medicine, phone charger, pajamas, toothbrush, etc and bring them to the hospital. Or whomever is caring for other children may be in need of help like grocery shopping.

-Visit: If the hospital and patient's health allow it, consider a visit. For our son, seeing a friendly face that WASN'T a doctor who was there to do something to him was a huge diversion for him. It was also a blessing to us, because being in the hospital room around the clock can get lonely...and boring. Visiting also allows the tending parent to just sneak out for a walk or a cup of coffee for a minute if they need to. Speaking of...

-Caffeine! If the parent has a favorite pick-me-up, consider bringing one. This goes back to the whole, hospitals don't feed you unless you're the patient thing. There were times I really wanted a cup of coffee, but didn't want to leave Matthew long enough to go all the way down to the Cafeteria. Caffeine is super-helpful in times of long-vigils!

-Babysit: If the family has multiple children, offer to babysit the siblings still at home. You might also consider helping with things the kids may not be able to do, like their laundry.

-Distraction: Especially if the patient is a child, something new to do is a huge help in passing the time away. Many people end up hospitalized without knowing it was coming, so they're not prepared with a suitcase full of things to do, nor is it even really practical to bring a bunch of stuff. Consider bringing a small gift or loan of a toy, book, or activity. We were especially blessed by this because it often helped "reset" Matthew's patience clock, especially during our confinement. This doesn't have to be expensive. You can shop the dollar store or the dollar spot at Target. You can bring a library book. You can bring something you have already to loan. You can bring a stack of photos to show the child and talk about. This can be inexpensive or free, and is a huge blessing.

-Staples and Paper Goods: This one didn't apply to us as much because our hospitalization was relatively short but it has been relevant in other situations I've dealt with. If a hospitalization is prolonged and/or ends in death and/or has lots of family members still at home or coming to visit, consider bringing by the essentials like milk, toilet paper, paper towels, paper plates, etc.

-Gift Cards: This is another that wasn't relevant to us, but I've watched many friends go through it. If the hospital is not close to the patient's home, lodging and gas for the parent can get very expensive, quickly. Our hospital allowed one parent to stay overnight, but not every hospital does. If a parent is commuting a long distance, consider a hotel gift card or donating loyalty points so they can stay nearby for a night. Gas cards are also tremendously helpful if they have to travel a long way. We were blessed that our hospital allowed me to stay, and that it was only 20 minutes away from our home. Many people in smaller or more rural areas have to travel significantly farther, especially for specialty hospitals.

-Feed the Family When they Return Home: Just because a family is home does not mean the work is done. We've been home 2 weeks. A friend offered to coordinate a meal train for us and I almost turned her down because there's nothing wrong with ME. I was perfectly capable of cooking and I felt like the need wasn't "big enough" to ask. I am so grateful I let her talk me into it. The first week, we didn't do anything except let Matthew sleep. He and I didn't leave the house. He was weak, tired, and immuno-compromised. We were also majorly sleep-deprived. As we got our feet back under us, then began the task of cleaning the house, sterilizing everything, doing the laundry, running him to follow-up appointments all over town, filling prescriptions, etc. Our church has brought us meals every other day for 2 weeks and it has been a huge blessing. I haven't had to worry about grocery shopping or cooking. Between being exhausted and overwhelmed with tasks, I can't tell you how much not having to worry about dinner has blessed us.  We had leftovers from every meal so each meal fed us for 2 nights.  Our friends from out of state even had a pizza delivered one night so this is a way you can help someone even from far away. Takethemameal.com is my favorite website for organizing a meal train-offer to set one up for your friend!

Thank you to everyone who blessed us in these and many other ways, and I hope these suggestions are helpful to anyone in the position to love-on a family dealing with a hospitalization.


Update on Matthew: Thanks also for continuing to pray for Matthew. He continues to get better every day. He had his first Cardiologist Appointment last week. The doctor found some damage, but he thinks it is immunological in nature and that it will heal after the disease completely works its way through and out of Matthew's system. He's keeping us on aspirin and we'll watch it, but he encouraged me that he would be fine and strongly advised me "DON'T GOOGLE IT!" which I did and then freaked out, so I decided to listen to what the doctor said after all.   The great news is that there was no sign of aneurysm. The "danger zone" to develop one is 3 weeks post onset through 18 months so they have to keep checking, but for now, there is nothing!

His energy and strength come back a little more every day. We were able to get out for a few outings last week and that was a great boost for him. I took him to church this week, which I think was his longest outing. He really enjoyed it and did well, but he was exhausted when we came home and struggled through yesterday a bit with being over tired. I'm still learning how to gauge his capacity, but the wonderful thing is that HE is learning too. He has quickly developed a lot of self-awareness and will tell me if something is in pain, or if he is tired, or needs to sit down, or whatever. I've really tried to teach him to listen to what his body is telling him it needs. He's good about asking to get into his stroller or into a shopping cart or on a chair if he needs a break. I'm so grateful for this because he's normally your typical 3 year old, "I'll do it myself" sort of kid. I know this self-awareness is supernatural and I am thankful for it. His skin is still peeling really badly but it doesn't scare him any more. I know he still struggles with shooting pains, but it seems to be less often. His color has come back and his eyes no longer look sunken and shallow.  His appetite has come back too. We have another echocardiogram next month to check his heart.

We've been so grateful for how quickly a lot of things have improved.  Thank you for your prayers for our sweet boy!

Monday, November 3, 2014

November Family Tree of Gratitude

Last year, we barely celebrated Thanksgiving. It's not that we weren't Thankful, it's that a few days earlier, our house had flooded, so we were working around buckets and industrial fans, and water, and rain, and contractors. We had a meal, but I didn't have opportunity to make much celebration of it. In previous years, Matthew was too young to really do anything other than eat.

This year, I want to start teaching him about Thanksgiving--not so much the historical events, but the action of giving thanks. I ordered a few story books that I'm patiently waiting for, and we're trying to actively express gratitude as a family. Most of our prayer life with him to this point has been prayers of gratitude so he is exercised in this to a point, but we want to build on that foundation.

So a few weeks ago, an idea struck me and this week I was able to execute it.

I created this tree of gratitude. Each night, we will each write (or in Matthew's case, dictate) one thing for which we are thankful on one leaf and hang it on the tree. Matthew colors on his leaves while we write on ours and then I write his thanksgiving on his for him. At the end of the month, we should have almost 100 leaves--overwhelming for this little tree and demonstrative of just how rich and plentiful and overwhelming God's generosity is. We're only 3 days into November right now so our tree only has 9 leaves, but soon it will be full and bushy!

I made the trunk and branches out of excess Amazon.com packing paper. I tore and rolled and just sort of stuck it up there. I affixed it to the wall with Command Strips. I found a template online for the leaves (google it, there are tons) and rough cut them out of construction paper. I have a whole pile of leaves in our hutch next to our kitchen table and we do it before we sit down to dinner. We include prayer for the things we named in our dinner prayer time. Then we just attach them to the wall with FrogTape. Easy, peasy, and super affordable because I had everything on hand already.

Fall leaves that change colors are a foreign concept in Phoenix, and I realize oak and maple leaves don't grow on the same tree. However, Matthew seemed to get the concept well and I think it will be a powerful visual by the time Thanksgiving rolls around.



Then I can save the leaves if I wish and take the tree down just in time for Advent. I have some super-fun Advent recommendations that I'll post in the next few days.

Side Note: I introduced this by first talking about the month of November and how this month is special because it has Daddy's Birthday, and a special day called Thanksgiving. Then I said the next month is called December. I explained that December comes after November, and December is special because it has Christmas in it. Then January comes after December and it is special because January has Matthew's birthday. He was tracking with me until he hung the leaves, and then he said, "Ok, now it's December. Christmas time!"

Saturday, November 1, 2014

Praises Already

Thanks so much for your prayers and words of comfort to our family. It is such a blessing to know he is being prayed for, and we along with him. I wanted to share with you how some of these prayers are already being answered. Thank you for praying!

Immediately after we identified that what our home needed was prayers for peace, we saw a calming in Matthew's mood. He is still having a difficult go at things and having many more meltdowns than is acceptable under normal circumstances, but we no longer feel like we're all holding our breaths. He's a little more reasonable, a little more able to compose himself, the meltdowns are a little smaller, and he's a little quicker to rebound when he does go off the deep end. He's still a far cry from his normal sweet temperament, but it no longer seems like he's being held hostage by anger. Thank you, Jesus!

We had our first follow-up with the Pediatrician today. I didn't expect this visit to yield anything, but it was still nice to receive a thumbs up. He's also started taking his daily medicine without a fight, and let the Pediatrician examine him without fear. Thank you, Jesus!

Our transfer got moved from November 20, to November 17, to possibly canceled, to now, November 21! And that date is as firm as it can be until a lining check on November 13, at which point things could be called off as in any other cycle, but not because of my med mix-up. Thank you, Jesus!

Many, many friends have brought or are bringing us meals. Friends from out of state even ordered us a pizza.  This is such a great relief to us. Thank you to those of you who have ministered to or are ministering to our family in a very tangible way. It blesses us greatly.

It's still hard to get out of the house. We tried a couple of times this week, including tonight, and it just ends badly because he is SO tired and runs out of energy so quickly. So I think we will be staying in for a while, as he regains his energy. Otherwise, he just crashes and burns too quickly.  But overall, things are already much better than they were even just a few days ago.

God hears our prayers. Thank you, Lord!

Cardiology check up this coming week...

Wednesday, October 29, 2014

Kawasaki Disease

Last week, I was feeling curmudgeonly about Halloween. My feelings of irritation toward its existence occupied way more space in my mind than it needed to. On Thursday morning when I had some free time before Matthew woke up, I even blogged about it. Now, I can't spend any energy at all thinking about Halloween.

Around lunch time on Thursday, Matthew was complaining that his back hurt. Thursday evening, we were in the emergency room of the Children's Hospital and by the wee hours of the morning, we were admitted. It turns out, Matthew had a rare condition called Kawasaki Disease, which is a virus from unknown causes that attacks the arteries, and ultimately, the heart.

This story is very long, but I think it shows God's incredible attention to detail, so I am going to try to spell it out. I also hope that if anyone googling needs some information on Kawasaki Disease, this may help them.

Two Saturdays ago (approximately 10 days ago), our family joined our good friends for our annual tradition at the Pumpkin Patch. Matthew behaved and looked 100% normal.

The next morning was Sunday (this is Day 1--the distinction of which will make sense as you read). When he woke up,  his bottom was red. We thought it was diaper rash because there had been some hay in the pumpkin patch that got in his clothes and diaper (side note, I think he and his best friend have made a pact to go to college in diapers). I put him in the bath for a while, then got him ready and we went to church.

When we picked him up from his class at church, he felt warm. But it was a hot day and our church building is often warm so we didn't think much of it. He was a little tired, but otherwise seemed fine. Some friends invited us to lunch and we joined them. During lunch, Matthew went downhill, very quickly.  He became lethargic and irritable and grew hotter by the minute. We quickly wrapped things up and came home. When we got home and undressed him, the rash had spread all over his body and he had a fever of over 104 degrees.  I gave him a cool bath and put him to bed and he slept all afternoon. That evening he was still warm, covered in rash, and tired, but had no other problems.

The next morning (day 2), he started complaining of sharp stomach pains and vomiting. He continued to have rash and fever. The pediatrician was able to see him first thing that morning and she concluded that it was just a virus. Matthew has developed rash with illnesses before. I thought the vomiting might have been from fever--I know that I vomit when my fever gets too high.  She checked him for strep and a UTI both came back negative. I took him home and kept his activity level low and we stayed here at home. He did not have much appetite. He was extremely irritable.

By Tuesday and Wednesday (days 3 and 4), the rash had gone away but the fever remained and I noticed he was still extremely irritable. At the time though, I chalked it up to him being tired (he'd had night wakings every night for more than a month--we were both exhausted!) and being 3.

On Thursday (day 5), he woke up complaining of pain in his diaper area. He was still listless, irritable, and warm. My mom had come to visit that morning--a visit he had been looking forward to for weeks, and he couldn't be rallied to excitement. At lunch time he started grabbing his back and complaining of sharp pain. I got him calmed down and put to bed for a nap. While he was sleeping, I called the pediatrician, whose nurse said we could return the next day for another urinalysis. I pressed her, knowing that UA results take a few days and we were going into a weekend. I asked her what else they could do on site and the end result was not much in the way of diagnostic tests. If the rapid test for the UA showed nothing, we'd wait for the complete results. If they suspected something, they'd send us to an imaging center for an X Ray. I knew we were heading into a weekend and those wouldn't be read until at least Monday, either. She said that if he woke up from his nap and was still in considerable pain, the best way to get tests immediately was to go to the pediatric Urgent Care run by our local Children's Hospital.

When he woke up, he was complaining of pain more frequently and more emphatically. Quickly, he was inconsolable. His eyes looked bloodshot, but I figured it was from exhaustion and crying. The skin on his bottom had begun to peel like a sunburn. I packed up a backpack with a few toys and we headed out. I was expecting them to diagnose him with a UTI or a kidney infection. I figured we'd wait around to see a doctor for a while, get diagnosed, and be sent on our merry way with a pain killer and antibiotic.

The doctor saw us rather quickly. He initially suspected some of the same things-childhood virus, UTI, and a few other things I can't even remember. However, as I talked and mentioned the things I had seen over the week, the doctor's body posture changed. After a while, he said, "I think I know what this is but I haven't seen it in a very long time. I need to excuse myself and read on it before I tell you anymore." A little while later, he was back, with instruction to go to the Children's Hospital ER. He told us that we would probably see the ER doctor, who would probably admit us, and have us see a Cardiologist and an Infectious Disease Specialist. Wait. WHAT? What happened to the UTI I was certain he had? That I could handle. A Cardiologist? For a 3 year old? My head was spinning. My mom stopped at home for some pajamas and other essentials for Matthew and I and met us up there.

In the ER, we saw more doctors than I can remember. My husband said that there must have been some sort of note in the doctor's lounge: "Hey! Go check out bed 6 for something you've probably never seen before!"  Around 4:00 am after tons of blood work, a nose and throat culture, and another UA, we were finally admitted, with all of the ER doctors and the hospital admitting doctor concluding that the diagnosis of Kawasaki Disease was correct. He and I slept for a couple hours in his room before the doctors and nurses started coming around at 7:00.
Matthew and the best daddy in the world, sleeping in the ER gurney while waiting for admission.


Another new doctor visited us, who said she thought it was Kawasaki but that the Infectious Disease doctor would need to confirm. He came later, and confirmed it, as much as he could. They explained that there is no test to confirm Kawasaki, but all the tests they ran ruled out everything else, and other things they discovered in his blood and fluid showed signs of KD.  The only test to confirm KD is after a patient has already suffered irreparable damage so they can only make a clinical diagnosis and treat accordingly.

Kawasaki Disease is a virus that inflames the arteries, and if left untreated, can cause coronary aneurysm, heart attack, or other heart damage. They have no idea what causes it.  It is very rare. It primarily affects young children, and boys more than girls.

The treatment is a 12 hour infusion of IV Immunoglobulin that somehow, protects his heart. Then he has to be on an aspirin regimen, and continue to follow up with a cardiologist.

Because they had to culture Matthew, he was in isolation for the first half of his hospital stay. Adult visitors could come and go, but he could not leave his room. Being trapped in 4 unfamiliar walls for days with a frightened, sick, tired 3 year old was very difficult. The first full day there was very hard. One of the doctors had said that the IVIG treatment was very uncomfortable and that Matthew would be very aware of it. He was overwrought from being tired, overstimulated from pain, and emotionally highstrung from being trapped. I was dreading the IVIG for him. My heart hurt so badly.  I learned that in times of great stress, I can handle the big things. I grew up in hospitals. I've literally spent months in them at various family members' bedsides. The big stuff, I was able to take in stride. But I broke down in tears when my little boy was crying for a toy and I had nothing to give him and the nurse I had asked 3 times for one wasn't getting off her duff to help. Apparently, my control-freak self is smart enough to know it can't control the big stuff, but then it over compensates on the small stuff.

The IVIG was ordered around 10:00 in the morning. But because of whatever black hole exists in all hospitals where orders go and hang out a while before they resurface, the treatment did not actually arrive and begin until 5:00 or 6:00pm. By that time, Matthew was so exhausted, he slept through all of it.  He didn't have to deal with the discomfort or the headache or the panic from feeling restrained.  Huge hurdle 1, down.

By the middle of the afternoon the third day, his cultures came back negative and they released him from quarantine. He could now go to the play room, the playground, the activity center, the cafeteria, on walks, and outside, utilizing all of the wonderful resources the hospital had to make the stay easier for kids. Immediately, his anxiety started to decrease. I don't think we returned to that room for 5 hours that first time we were released.

These are some of the very many God things I noticed:

-Because one of the main diagnostics of KD is 5 days of fever, the disease cannot be diagnosed until day 5. Treatment must begin by day 10 in order to have the best chance of coming through it without heart damage. Matthew was diagnosed on day 5. Treatment began on day 6. His diagnosis came at absolutely the earliest possible moment. If we had waited through the weekend and into the beginning of this week for lab results and/or radiology to come back after the weekend, we would have been to the 10 day danger zone mark.

-Though the disease is rare, the first doctor we saw had the experience to recognize it, and the humility to research his findings in his own unfamiliarity.

-Phoenix Children's Hospital is one of the best Children's Hospitals in the country. The doctors we encountered were very familiar with KD and how to treat it. In reading some of the KD forums, many many parents and children have a very difficult time getting a correct diagnosis because many doctors have never encountered it and because so many of the symptoms are typical of the age and of other childhood illnesses.

-Matthew showed ALL of the hallmark signs of KD, on both his body and in his blood and fluids, making the disease as confirmable as possible without the heart damage that is the only thing that can verify 100%. Additionally, every single doctor who treated him (more than 10) agreed on the KD diagnosis. I really appreciate that there was no hesitation or wondering so they could just move forward with treatment.

-I really believe the Lord pushed me to take him to the Urgent Care that night. On their own, irritability, rash, fever, red eyes, and even some pain are normal in children going through threenagerhood, diapers and potty training, and growth spurts and growing pains. None of those things are concerning on their own and Matthew has had them at other times in different combinations and I haven't been alarmed. But this time, I distinctly felt the need to take him in, despite my usual bent toward "wait and see" when it comes to common colds and illnesses.

-I also believe the Lord brought all of the different symptoms of the previous week to my mind with exacting precision. He loosed my tongue to mention things that I didn't even realize I had taken note of. All of the information and the timeline I gave were what piqued the first doctor's interest toward KD. Had I not mentioned some of the things that had come and gone earlier in the week, we might not have had a correct diagnosis.

-He was able to sleep through his infusion

-He did not have a negative reaction to the infusion

-The infusion seems to have worked and so far as we can tell, he does not need another.

-His first echocardiogram was clear.

-On our third day there, he was released from isolation, which made the rest of the stay much much easier. They said that cultures can take up to 2 weeks to come back so originally they said he would be in isolation the entire time we were there. To be released from it early was a real gift and it really helped Matthew's anxiety.

-He manifested each symptom necessary to make a diagnosis, but each symptom lasted almost as short a time as possible. His rash and vomiting were gone in 2 days and he didn't get the pain until day 5. The symptoms appeared long enough to be noticed and noteworthy, but not any longer. I think this was a sweet mercy that he didn't have to be excessively miserable all week long.

-My mom "just happened" to arrive for a visit the day the hospitalization started, so she was able to help us with sitting with Matthew, doing things we needed, etc

-My dear friend was also available and brought my meds to me in the middle of the night and ran errands for me. People were kind to show love to Todd and I, too.
This was waiting on my counter for me next to my coffee pot when I got home (this was not one of the errands I asked her to do). 


-Many family members and friends came to visit Matthew. We learned while there that most children don't even have parents who visit them around the clock, much less other visitors. Matthew had an almost constant stream of people who wanted to cheer him up and distract him. I am so grateful to know my little boy is so loved.
Playing with one of the many gifts friends and family brought him to help keep the isolation manageable. This is after his infusion and we really saw him start to turn around. He was even singing to his tractors. It was so good to hear my little boy sing again. He was singing, "I love to dump the garbage in my backhoe, oh yeah!"

-My Mom's Church has a ministry called Wrapped in Prayer. A guild of ladies make quilts for people who are going through a hard time, and then they and others in the church tie knots to join the layers together. As a person ties a knot, they pray over the quilt and the person receiving it. Then the blanket can "wrap" the recipient literally, representing the prayers they are wrapped in. The group made a quilt for my little boy and the Pastor's Wife dropped it off at our home, along with a gift from the Pastor and his wife. The church shared some photos of their Sunday morning where people came to pray and tie knots. I've never met most of the people in the photos. What a beautiful way to show love!


-There is a nationally known KD research clinic just a few hundred miles away from here so we have access to expert care if things get complicated. I've already been in touch with a doctor there who has been so sweet to help us with a few things.

-KD is not contagious, so his best friend and her sister, who we were with the day before, and the kids in his Sunday School were not put at risk by being with Matthew.  It also means that as he has energy and stamina, he can still get out of the house now a bit.

-Our employees really stepped up to the plate and took over everything so Todd did not need to worry about the shop. The only thing he had to go there for was to sign checks for payroll. I am so grateful that we have kind and compassionate men working for us, who have integrity, initiative, skill, and work ethic to work and be proactive even when the boss is away and who really showed us love in our time of struggle. They even made Matthew his own "License Plate" wishing him to get well. They hand painted and etched this. This was another tears moment for me.


-Matthew is sleeping right now. This alone is a huge, huge gift because sleep has been so hard for him. He also took 2 naps the day we were admitted, which really helped when we were up until 4:00am waiting for admission.

Other things I don't want to forget:

One nurse asked him if his mommy gave him his beautiful blue eyes or if his daddy did. Matthew looked at her puzzled, and then emphatically said, "JESUS did!"  You go, little man.

Our friends brought him a milkshake. He woke up while they were there and I told him and he sleepily mumbled, "Oh, that's sweet of them."



On Monday, they released us to come home. It appears that Matthew is out of the danger zone. The recovery time from KD is months long. He'll require echocardiograms for the next several months and then periodically over the next several years. The treatment he received has been used for about 30 years for KD and so far, seems to have good long-term results as far as protecting the heart goes and those now-adults are still doing well overall.

The disease has 3 stages. Matthew is in stage 2, which is arthritis, GI problems, and skin problems. He's still pretty miserable. They tell me his brain is inflamed, as are his nerve endings, so he is hypersensitive and angry often. My understanding is that this stage can last up to 2 weeks. Then stage 3 is when everything starts returning to normal, but it can take 8 weeks. So we have a little bit of a bumpy road in front of us.

We'd love your prayers for our little guy. The hardest struggle for him is that he feels lousy and doesn't understand. His skin is peeling off in sheets and it scares him. He's on an emotional cliff most of the time and the littlest things set him off. He wants to do things, but he has no energy or stamina to actually express the pent-up energy and feelings he has. So then he gets frustrated, and he's already emotionally fragile from the inflammation. The doctors assure us that KD doesn't have a lot of long term affects but we've been reading that a lot of kids do have struggles for years thereafter. We'd appreciate prayers that his recovery is quick and permanent. While he's on an aspirin regimen, for him to get the flu would be extremely dangerous. He got a flu shot, but that may or may not be effective, given that flu season hasn't really started yet so they don't know if the strains in this vaccine are the ones that will be in the US this winter. We'd appreciate your prayers that he does not get it. He never has before and Todd and I don't usually get it either, but extra prayers would be appreciated.

The hardest struggle for us as his parents is to know how to comfort him. I ache to take away his pain. It's also very difficult to navigate the landmines of his mood and the extreme anger, and comfort him and extend extra grace for him, without letting him be a total monster. When we know it's really truly not his fault that he's behaving this way, it's hard to discipline him for it. But we can't let him have carte blanche to be a monster, either. To be honest, our house feels rather like a war zone and we're on eggshells a lot. It's exhausting for us--I can't even imagine what it's like for him. Todd and I need prayers for wisdom on how to walk this line and our whole home could use prayers for supernatural peace. We're living on pancakes and grilled cheese sandwiches because at the end of the day, it's all I have energy left to make. He also can't always tell us what's bothering him so we need wisdom for being able to identify what's ailing him to be able to relieve it, in such a way that he'll accept help. Right now, he is very afraid of anything that even remotely resembles medicine.

This also affects our transfer. Because of the stress and being at the hospital, I forgot to take the last few days of pills so it changes the timeline for everything. It's possible that we can still course-correct, but it will depend on if my body cooperates. If not, we'll have to stop and start over. The date is no longer November 20. We won't know when it is until and unless certain things happen biologically. Now that I know we have an unknown amount of medical bills out there waiting for us, it was tempting to postpone again, but if we keep waiting for when the money can't be used on anything else, it will never happen. We're just moving forward in faith that God will provide.

Thanks for all your prayers for our little family!


*******
Signs of Kawasaki Disease:

If your child has high fever (over 101) for 5 days in a row, AND any 2 or more of the following symptoms, please ask the doctor to evaluate him or her for Kawasaki Disease. Matthew had all of these symptoms at one point or another during the days and hours preceding his diagnosis.

-"Strawberry" tongue (red, swollen, and bumpy)
-Body rash that has no other cause, especially rash in the diaper area
-Swelling in the hands and/or feet
-Bloodshot eyes without discharge
-Swollen lymph nodes in the neck

Additional symptoms (but they're not diagnostic like the above ones). Matthew had all of these too:
-Extreme irritability
-Nausea or vomiting
-Peeling of the skin

For more information, go here: http://www.kdfoundation.org/