Oatmeal, glorious oatmeal

In May, we introduced organic, gluten-free oatmeal for Keandre's latest food trial.  That day, Keandre skipped around the house yelling at the top of his lungs, "Hooray!  Oat-a-meal!  I love oat-a-meal!"  Followed by, "It's yummy, right?  I think had it once a loooong time ago." :)

Because Eosinophilic Esophagitus and Eosinophilic Gastroenteritis (EE & EGE) are allergic conditions, every food has to be trialed separately until you know whether it's a 'safe food', meaning it doesn't trigger the growth of eosinophils, or white blood cells, in the digestive track.  The only way to know for sure if there are eosinophils is to schedule an endosocopy with biopsies, but you can also tell if the food is a problem from other symptoms. 

Within 1.5 weeks after we added 'oat-a-meal', Keandre was flaring.  Hiccups, stomach pain, reflux, and then vomiting returned.  Some families keep it up longer, and scope to be sure it's really 'a fail' (checking for evidence of eosinophils), but I just can't do that...it's too hard on him.  It's sign enough if I remove the food from his diet and he recovers. 

Oatmeal was a huge loss -- an emotional one for both of us.  My Mama heart breaks to see my son suffer, and I struggle with what to feed him with this limited diet.  He is grieving the loss of a food that he loved, and this loss is forcing him to face how different his life is from other 5-year-olds.

Please continue those prayers.  Keandre's body has rejected 7 of the last 8 foods we've trialed in the last 6 months, so I'm a little scared to introduce anything new for a while. 

For now, we're trying some new allergy treatments, in hopes that it will help his body tolerate more foods.  More on that later....

Foods that caused him to flare so far this year: lentils, cilantro, chives, green onion, leeks, celery, and now oatmeal.  (For the EOS moms who read here. :)

Please, please pray that pear continues to be safe for him.  He loves them!

Just doing our part...

  

Okay, who are we kidding. 

We may compost, recycle, carpool, use cloth diapers, and have rabbits in the back that take the place of a lawn mower.

But we aren't quite that environmental.

It's just been one of those months.

You know....

That month when the water heater bursts a pipe, the car needs repaired, one AC unit needs expensive work done, then the other AC unit goes kapoot and needs replaced.  Oh, and did I mention the water softener also died?  Yeesh!*

I've heard of many a Christian family that faced excessive hardship before adopting -- just before taking a leap of faith and committing to another precious child.

Destany said it well a few days ago.

"Mom?  I don't think Satan wants us to trust God right now.  He is attacking us and trying to make us discouraged!"

Amen, sweet girl. 

But our God is stronger, more powerful. 

He is faithful.

As always, prayers for provision and protection appreciated.

2 hot & sweaty kiddos

*Note: this is why our adoption fund is separate from our everyday budget! :)

sweet baby love

  

Lucas & Destany, 2.5 years and 10 months old

If you know us IRL (in real life), you know we've been praying for an expectant mom who was considering choosing us to adopt her baby girl, due in about 2 months.  (We don't post details about potential matches -- only ask for prayer.  Thanks for understanding! :)

We were so deeply encouraged by your immediate outpouring of love, prayers for all involved, and a desire to help us fundraise to pay the adoption/legal fees.

It looks like that match is not happening after all, and we are grieving that, but trusting God with the outcome.  We know He has a plan for this Mama and her precious daughter.

Starting to get ready for this little girl to join our family definitely confirmed for us that we can't wait to adopt again.  Even our children were ready to jump in whole-heartedly. :)  Our local agency has very few waiting families right now -- they have had so many placements lately that they are at an all-time low number of available families.  So we are excited to put our energy into fundraising again, and we will be available as soon as possible.  In the meantime, our agency knows they can call us with an emergency placement if we are needed.  

My heart goes pitter-patter at just the thought of a call. :)

Update on Keandre

 

www.kidswithfoodallergies.org

This is the best description of Eosinophilic Esophagitus that I have seen!  If you want to understand our journey more, this is a good starting point -- much easier to understand than other links I've given. 

Please, please pray for Keandre.  We saw so much improvement when we first took out the additional 15 foods (+ the orig. 4).  A week later we realized he was also reacting to wheat and honey, so we removed those as well.  Incredible.  Apparently our son is allergic to 21 foods.  And to think that we hoped none of our children would be allergic to peanuts.  The whole food allergy issue seemed a little scary to us. :)

After seeing about 80% improvement in his worst symptoms (severe reflux & vomiting, stomach/esophagus/throat pain, runny nose & eyes, irritability and behavior issues, etc.), he seems to be getting worse again.  Although he has not thrown up in two weeks, his stomach hurts often, and sometimes his throat is very painful (reflux burn).  He is completely dependant on twice-a-day Zantac to neutralize the acid, and still it is not enough.  The steroid slurry that is prescribed for EE would not help him, as the EE (esophagus) is moderate, but the EG (stomach) is where the disease and pain is worst, and it would not address this at all.

We may need to go in for another round of patch testing, to see if there are other foods he's reacting to. 

This disease is difficult to treat.  It is rare, which means there are very few doctors who specialize in it, and there is no set protocol for how to approach treatment. 

For Keandre's sake, we need to see a lot more improvement when we do another endoscopy in a couple months, or we will need to try him on just elemental formula to help his body heal.  That would be so hard on him, not to mention the surgery and tube feedings we would need to administer.

Oh, how my heart hurts for my son tonight.

Life with EE, EG, and Food Allergies

 

Hanging out in the back yard with Lucas.  We just put 3 new goldfish in our little pond.

Keandre's diagnosis has pretty much stopped us in our tracks.  It's not that his health issues are worse today than they were last week or even 3 months ago.  Rather, it's the fact that an official diagnosis us forced us to realize that this issue is not going to go away easily, and we need to focus as much energy as possible on helping him heal. 

Our day-to-day schedule includes serving up medications, supplements, and vitamins many times a day.  Nine times a day, to be exact.  (Wow -- no wonder it feels like a lot!)  The good news is that it is helping.  His eczema is improving dramatically, and he has been off of daily allergy medications for a month for the first time since he was less than a year old.  That is no small miracle!

We have to be very careful about what Keandre eats.  We avoid his life-threatening food allergies -- dairy, eggs, nuts -- as well as coconut and other foods he has reacted to -- like fresh blueberries.  It takes planning to make sure he has a balanced diet.  We focus on lots of whole, fresh foods and home-cooked meals.  We are learning a lot about healthy fats, traditional cooking, the importance of buying organic food, etc.  This has been good for the whole family!  I am so very thankful that Keandre likes vegetables, since they are a staple in his diet.  ("Steamed butternut squash or sweet potatoes, anyone?")

We track his symptoms very carefully.  How does he feel when he first wakes up?  Did his medication seem to help at all today?  How much pain is he experiencing, and how often has he thrown up?  It is time consuming to track all of this, but we are hoping to see a pattern that will help.

With all of the prayer and effort we are investing into Keandre's health, we feel it's realistic to be hopeful. 

We hope for healing.  And we hope that someday we won't hear phrases like this on such a regular basis:

"Mom!  Keandre is throwing up in the backyard!"

"Keandre, stop running around or you'll throw up."

"Daddy, my tummy is hurting.  And my throat."

"Mom, is it okay for me to try eating again?"

"I'm sick today.  I have a tummy bug."  (Said almost daily, first thing in the morning.)

It is heart-wrenching to watch our little guy suffer this way.  And it is exhausting to wrap our minds around the reality of this condition in combination with his food allergies. 

But we trust God with all of this. 

We are still hopeful.

And so very thankful for our doctors -- traditional and naturopathic* -- who are helping our sweetie. 

Thank you for your continued prayers and support.  It makes a difference.
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*Did you know that in Arizona, naturopathic doctors have four years of medical school as well as their other naturopathic training?  I didn't!  What a blessing, considering there are states where alternative approaches are not regulated and an online degree can suffice!

test results

No fun and creative blog post here.  Just sadness for our Keandre.

We received the results from his endoscopy and biopsies last Monday.  He has been diagnosed with moderate Eosinophilic Esophagitus (EE), severe Eosinophilic Gastritis (EG), and mild Eosinophilic Gastsroenteritis (EGI).  This is not good news, especially since we are very careful about his food allergies and that is not likely to be the cause of so much inflammation and damage.  (When allergies are the cause, it is much more hopeful.)

There are no easy answers here.  This condition is difficult to treat.  Without a miracle, Keandre's struggle with daily stomach pain, reflux, and vomiting will not be over any time soon.

We are grieving for our son.  We are also trusting that God will carry us through this struggle and sustain us when we're worn out, like we are right now.  We appreciate your prayers.

Prayers for Keandre (updated 3x)

  

We'd appreciate prayers for Keandre tomorrow.  His reflux has been terrible lately, and medication has not resolved the issue or prevented the pain and vomiting that he has suffered from since he was only a few months old.  We'll be spending the day at the local Children's Hospital, and at 11am he is scheduled for an upper endoscopy.  We're praying that his doctor will have answers for us soon.

When I told Keandre tonight that his doctor is going to put a tiny camera inside him to take pictures and see what's going on in there, he thought that was hilarious!  "A camera?  In my tummy?!?"  Ah, I love preschoolers. :)

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Monday afternoon update:  We are home from the hospital.  Keandre's doctor met with us for quite a while to discuss the results.  Unfortunately, he didn't have good news for us.  Keandre has a lot of inflammation and damage in his esophagus.  It is likely that he has Eosinophilic Esophagitus (EE).  We will know for sure in a few days, when his biopsy results are in.  It's a bit too much to explain right now, so I'll do a new post when we know more.  For now, we are resting and thankful to be home again. 

Thank you for all your prayers and support.  The journey is far from over, but we are trusting God has a plan for our sweetie and will guide us through it all.

A big thank you to Sarah, Katrina, and Catherine for your help with Brooklyn, Destany, & Lucas.  They had a wonderful time with you!
 

Keandre drove a hummer through the hospital to the room where he had the procedure.  He was smiling SO big.  He couldn't believe he got to do that.  We couldn't either! ;)

He was FAST!  Nurses and doctors were jumping out of the way to avoid getting hit.  Andy & I couldn't stop laughing.

He crashed a few times.  We noticed that the walls and doors all have sheets of metal to protect them.  Now we know why.

Keandre and his doctor, in the recovery room after he woke up.  Keandre says about Dr. S., "I like how he talks.  He talks funny!"  (Dr. S. is from Ghana.)

We feel blessed, and incredibly thankful that we have wonderful doctors taking care of Keandre!

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Wed. night Update:  Keandre is having a very rough week so far.  We covet your continued prayers.  He typically has a 2 - 4 days per week where is vomits a few times, and struggles with coughing and gagging.  Well, we are now taking it to a new level.  Monday after the procedure he ate just fine, and he quickly made up for the morning of fasting.  But then yesterday (Tues.) he threw up so many times I lost count.  He tried eating several times, and was successful in keeping food down only one time -- a whopping 1/2 cup of applesauce.  It was a difficult day, and heartbreaking for us to watch him suffer like this.  Today was a little better, but he is still coughing and gagging regularly.  He will be sleeping in our room indefinitely, as he wakes up coughing/gagging and struggling to breath normal.  The poor little guy is exhausted. 

The doctor has us giving him the Prevacid and Zantac still, but it's not helping.  We are waiting for news on the biopsies as well as news on whether there is more we can do to help him.

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Friday morning Update: Thank you for your continued prayers.  Thursday Keandre was a little better, and today he is MUCH better!  He is still coughing and gagging occasionally, but he is eating well and keeping most of it down.  We are still waiting for test results.

One Dad's Thoughts...

  

I just had to post this.  It is one Dad's perspective on how God convicted him to be available as an adoptive dad when he was initially quite reluctant. 

David & Erica were in our local adoption group before moving to Florida.  I'm excited to share that God blessed them with the $30,000+ needed for this adoption (legal fees, agency fees, travel, orphanage donations, etc.), and they are in Ethiopia right now, waiting for the final document needed to bring their daughter home.

It has been a long year, full of faith lessons, tears, fatigue, and confirmation that God would provide in His timing.  And He did.  (He funds what He favors! :)

When they adopted Silas, God asked them to give up everything to bring their son home.  It was hard, but they did it.  Huge financial sacrifices.  They would be the first to say it was well worth it.

This time, He asked them to humble themselves and ask others to come alongside them to help bring their daughter home.  They obeyed.  He blessed.  Precious Zahra will be home soon!

To follow their journey to child number five, check out their family blog here.

ps - Although I think it's clear that God calls all of us to care for orphans, adoption is not the only way to care.  How is He calling you to care? :)

A change in perspective...

Oh, how we can be so quick to judge….to assume the worst, or at the very least not be very gracious.

Brooklyn came down with a fever on Saturday evening. She didn’t seem too sick, but fevers are taken very seriously in newborns, so at 4am I ended up at the Children’s Hospital with her for a full work-up and a couple days of observation. It wasn’t easy to see our little one in pain during her procedures (blood draw, IVs, spinal tap, etc.), but it was over quickly and now we wait…and do heavy duty IV antibiotics every 6 hours. It is so hard to see her being pumped full of these powerful drugs, but I must trust God to care for her body.

We were assigned a shared room. This was a given, as there are no private rooms here. But I was still a bit disappointed. I was brought in and immediately faced with a fussy little girl, a movie blaring (peppered with the occasional cuss words), and to top it off, the family barely acknowledged our presence. Disappointed, I finally fell asleep. Not too hard considering I’d only had 2 hours of sleep before coming to the hospital, and had been there since 4am.

Later that night I learned more about their situation, and finally got the little girl to warm up to me a bit more.  Soon after that, her mom relaxed and we enjoyed getting to know each other a little.

The real situation? Little H is six years old and has leukemia. She was diagnosed over 2 years ago. She is in the maintenance stage now, with multiple daily medications and monthly chemo, and she is here because of complications from a simple fever and cold. I can only imagine the long road they have been walking. My heart broke for them, and last night, at midnight, I wept behind my dividing curtain as the nurse tried to find a good vein for a blood draw – almost impossible because of her longs months of chemo and fragile veins. This family has been through more than I can imagine. And how many roommates have they had by now?  Nice ones, noisy ones, roommates whose whole family moves into their tiny room….  Their ability to try and connect with those who will only be here for a few days is probably greatly limited by now.

My focus has completely changed. The mom was worried they would disturb us. Ha! Nothing could bother me much – including the many nighttime disturbances as Little H heads to the bathroom, gets more meds, and her IV beeps. Instead, I feel such compassion, and pray for them often. I am blessed that my baby girl is doing so well, and that I have 3 healthy children at home. I fell asleep thankful for that, and thinking, also, of the many moms in Haiti who have newborns and sick children living in tents during the muddy rainy season. I don’t have to tell you how terrible the conditions are. We have all heard the news, and it’s overwhelming and tempts us to turn away to protect our hearts.

I am so thankful that God kept me from being overly absorbed in our situation this weekend. I feel blessed to have my world rocked in this way.  I am praying He uses me to encourage this family in some small way.  I would appreciate your prayers for Little H.  She needs them.  Please also pray that my interactions with them would be meaningful. 

The Challenge

It has been rough around here lately with our older three.  We suspect it comes with the territory, because of the journey our family has been on for the last few months. 

Andy was laid off in November '08.  There is not much need for an architect in this market, so it has been an up and down road of learning to trust God deeply to meet our needs.  We have not been terribly stressed about finances -- just cautious.  But when Andy is able to get a contract job, he goes from being an active part of family life, and involving the kiddos in various home projects, to suddenly working long hours to meet a deadline and praying that this new client will lead to another job opportunity.  This wreaks havoc on family routines, for obvious reasons.  And me?  Oooh, that is another journey altogether.  'Take it easy' status, followed by bed rest, then sudden hospitalization & stricter bedrest, then no bedrest - but weak and tired, then 'Baby is here!'.  Ugh.  None of us have known quite how to 'normalize' that experience. 

For weeks now, we have been dealing with crazy amounts of whining, bickering, and sass.  Our best attempts at dealing with it have felt completely futile.  Last night, Andy and I were very discouraged.  It just seems that we have not been able to reach our children and deal with the heart issues that they are struggling with.

And then God brought Christine's blog entry to my mind.  To our knowledge, we are not dealing with attachment issues.  But we are dealing with children who feel a bit neglected, frustrated, and probably a lot of other emotions, too.  When I first read this entry, I thought it was a great idea, and I prayed for the MANY families who commented on her blog and took her up on her challenge.  But other than that, I was basically thankful that the more serious behavior challenges we've dealt with in the past, with the help of a wonderful Christian therapist, are not an issue right now.  But last night I was praying for our sweeties, and for wisdom for Andy and I, and I realized that is the level of intentionality we need in our parenting right now.  We can't expect to wing it on a daily basis and get great results when our family life has been chaotic for months now. 

So this morning we woke up, put smiles on our faces, and gave our kiddos lots of hugs and intentional, caring interaction.  We helped them with tasks they can technically do themselves -- like dressing, putting lotion on, etc.  We are calling them by loving nicknames, using active listening when they want to tell us something, and making sure they know how much we love them and feel blessed to be a family together.  We are changing the focus, and trusting that God will help us set a new tone for our family life in the days to come.  This is our chance for a new beginning as a family of six.  And we are ready!  We'd appreciate your prayers as we walk this path with our children. 

And thank You, Lord, for giving us a fresh start.  Please sustain us when we are tired at the end of a long day.  We are so blessed to be the parents, mentors, and nurturers of these four precious children!  Please help us to be good stewards of our time with them.

Our basic daily goals:
~lots of hugs and verbal reminders of our love for them
~as many positive and purposeful interactions as possible
~active play time with each of them, even if only for a few minutes
~family reading time (used to be a fav family activity)
~continue with consistent discipline and instruction

We won't be checking these off a list, but rather we'll see these as goals, and a focus to get back to when we feel that things are slipping. :)

Key phrases to avoid right now:
~Seriously....seriously?
~You've got to be kidding....does that ever work?
~How about your try that again with a little more whining....

Oh yeah....sarcasm has crept in.  And now we are cutting it out! ;)

Ready to work together now....

heading home

Well, I'll be discharged from the hospital tomorrow morning sometime.  I have mixed feelings about it, but I'm willing to give it a try.  My OB will see me twice a week to check my Amniotic Fluid Index, and we'll have one more FFN in another week or so, to check the likelihood of baby coming early.  This test is very accurate, so hopefully it will be negative again next time.  Please pray for us! 

follow-up...

Yesterday late afternoon Kiara and I had the follow-up appointment at the hospital - she had the second steroid shot for baby's lungs and an ultrasound.  Baby still looks great, but unfortunately her amniotic fluid levels, which were already a little too low, had gone down further.  They decided to admit Kiara right away for more monitoring and tests.  She is still contracting regularly, but they are hoping to get that under control with the new medication.  We'll keep you posted when we know more - thanks for the prayers.

-Andy

Update (Wed. afternoon):  The ultrasound looked good this morning -- fluid levels are up a little, baby's heartbeat and activity levels are good, and umbilical cord and placenta seem to be doing their job still.  We're waiting for a consult with the neonatologist and a tour of the NICU, just in case.  And praying these contractions settle down.  Kiara has internet now, so she will be able to update the blog whenever we have more news.  Thank you for your prayers!

so courageous

Although Andy and I intended for me to take a break from leading abuse recovery groups until after baby girl made her arrival, God had other plans.  In fact, He practically wrote His plan on the wall for us, so in faith we followed Him.  And even with the pregnancy complications, we cannot regret it.  This is an amazing group of women! 

I am currently leading 5 women (including 1 who is training to facilitate groups in the future) through the Mending the Soul book and workbook.  This is my 6th group in about 3 years, and it never ceases to amaze me how God brings the women together and gives them the courage to do this incredibly difficult work. 

This is no simple Bible study!  These ladies commit to hours of preparation for each group, facing a past of painful abuse and learning to talk about it, dealing with the grief of all they lost through that time in their life and how it still affects them today, and the often painful effects of bringing all of this up in such a tangible way rather than pushing it down and trying to ignore it.. 

I am no expert -- I can only share with them my own journey of healing.  Share the HOPE I found in God and in His ability to heal and redeem the broken pieces of us.  I can walk alongside these precious women and encourage them to keep going when they weep over losses, come worn out due to sleepless nights and nightmares, and have difficult conversations with those in their life who do not want to deal with the hard stuff, do not want to admit that they knew what was happening and didn't stop it, or were not safe and available when their child needed them. 

Please pray for us.  We need it.  Pray specifically for continued courage for these women to keep moving forward.  Pray for wisdom for me as I listen, cry with them, and help them connect with each other and feel less alone.  Please praise Him with me for the times He miraculously gives me the words to say, or a question to draw them out, at exactly the right time. 

And please pray for the mens' groups that are going through this same material.  The groups look different (let's admit it -- guys work different than girls ;) -- but the struggle and healing that takes place are the same. 

another long day....

We spent most of the day yesterday at my doctor's office, followed by OB Triage.  I had a rough weekend (with a few bright spots mixed in, thankfully).  I had many more painful contractions than usual, with times where the pain was unbearable.  We began to fear that I would not even know if I'd gone into true labor until it was too late.  (Yes, I remember the pain of true labor, and yes, it was that bad.)

It was wonderful to be cared for and get some answers and reassurance. 

Baby girl is (so far) not on her way.  What a relief!  (FFN was negative, no dilation.)
I am on stricter bedrest for a few weeks, and stronger medication to help control the contractons.  We are praying this helps with pain control, also.
They have given me the first of two steroid shots that will help baby girl's lungs be as mature as possible whenever she does make her arrival.
I am being monitored closely and I am to call my doctor any time I have questions or concerns.

Later today, Andy and I will return to the hospital for more monitoring, the 2nd steroid shot, and a tour of the NICU, just in case. 

Thank you for your prayers and encouragement!  And a big thank you to my Mom and Aunt Maggie who were available -- even last minute -- to tag team and care for the kids today.  They had a wonderful time with you, and we rested easier knowing they were with you.  We love you!

It's a full moon.

Yesterday was a good pregnancy day.  Not too many contractions, I had a little energy, and I got a few things done (besides keeping my kiddos alive and fed, of course).  Today?  Not-so-much.  In fact, I had so many contractions that I had to spend the whole day in bed.  Not-so-fun. 

This afternoon I checked in on a Yahoo group for women with early contractions/pre-term labor, and found I wasn't the only one having a rough day.  Then one of the moms informed us it's a full moon, and that she always had stronger contractions then. 

Apparently there is plenty of anecdotal evidence showing that pg Mamas are more likely to head to the hospital when there is a full moon.  In fact, reading that reminded me that our family friend and L & D nurse Laura pointed out that it was a full moon when I was put on bedrest with Lucas.  Braxtons Hicks may be stronger at that time, leading to moms who are close to their due date thinking they're in labor.  And supposedly more women do have their water break when it's a full moon.

Now I'm glad I didn't push it tody, and that I laid in bed.  All day long.  On my left side.

A huge thank you to my Mom and Catherine, who stepped in to help with the kiddos today.  They had a wonderful time with you!  And another thank you to my sweet husband, who is picking up the slack big-time these days.  For about the hundredth time, he wondered aloud today about how we'd be managing this if he wasn't unemployed right now....   

Please pray with us that our sweetie stays put as long as possible.  I'm 26 weeks today, and it is still way too early for her to make her appearance!

Click here if you want to read a short article about this issue.  Not scientific, by any means, but interesting nonetheless!
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UPDATE:  Today (Saturday) I spent several hours at the OB Triage, with severe abdominal pain and contractions.  An ultrasound, pain meds, and a shot of terbutaline later, I'm back in my own cozy bed, on modified bed rest w/ more terbutaline to take on an as-needed basis.  We're praying this is just a temporary bump in the road....