It was Thursday night, 8/24 and everything seemed normal. Put the kids to bed, even somewhat early which is a miracle.

At 1am, Isaiah wakes up, screaming but it sounds weird. We can hear him through the baby monitor in Ella’s room, with her door shut. He started preschool that week and every time he’s around a bunch of kids, he catches all sorts of fun illnesses. Josh darts out of bed. Then, ends up bringing Isaiah into our room and it sounds like a seal barking except Isaiah is very worked up and can barely breathe. It’s like he was breathing out of a straw normally in his airway that shrunk to a coffee stirrer. It takes the effort of both of us to calm him down so he can breathe again. He has had croup before, but this sounded worse and came on suddenly. It was definitely not expected. We know that cool air can help and it was a crisp night. So we left Isaiah in our bed, sleeping on Josh’s side next to the window with it cracked open. He finally falls asleep, but it was apparent that this was not going to be an especially great night of sleep for me.

While we settled Isaiah, I could hear Ella stir and dry cough a couple of times (nothing out of the ordinary). I listened, but it seemed that she must have just rolled over and went back to sleep.

I was not sleeping great, and very much on edge throughout the night. So when Ella started coughing again, a few times in a row, a pause and a few more coughs, I decided that maybe I should check on her and give her some water. It was 3:45am. The boys were both snoring, so I snuck upstairs. Looking back, it was the good Lord prompting me to check her. And the miracle that Isaiah had croup and I wasn’t sleeping well anyway.

When I walked into her room, turned on the light and grabbed the syringe to give her water, I could immediately tell something was wrong. She was laying on her side, eyes glazed over, staring straight ahead, then eyes darted back upwards into her head, then back straight. I kept saying her name and she was not responsive. I grabbed the pulse ox and turned it on – she was 89, 85, going down fast. I cranked the oxygen, ran downstairs and thrusted my bedroom door open to ask Josh to come quickly. Something was not right. When we came back up, Ella had desaturated and was turning blue. I dialed 911 and Josh placed the cannulas in her mouth and started mouth-to-mouth resuscitation while I started chest compressions. We were giving CPR to our daughter. What was happening? Was our daughter dying right before our eyes? She had a pulse the whole time but she was not breathing. It was a very long 6 minutes before the EMTs arrived. We were in a fog. What just happened? Ella has been on such a great track. This was coming from left field.

(Dad’s perspective: This was the longest and shortest 6 minutes of my life. As I raced up the stairs and we started CPR, the flood of terror of losing our sweet miracle girl was overwhelming. Would Isaiah grow up without a sister? How would this trauma impact him? How would it impact us? Is she going to live or am I about to witness my daughter die before our eyes. This was the most terrifying experience with Ella since her lung suddenly collapsed back in the NICU, but even then, we had a team of nurses by our side. This time we were on our own!)

I’m so thankful that Isaiah was in our room the entire time and fast asleep. If he would have been in his room, he certainly would have heard the EMT crew (about 6 people) working on Ella to stabilize her. The distraction of trying to deal with him while performing life saving measures on our daughter would not have been a good thing. At least this way, he didn’t experience the trauma and doesn’t know the event happened either.

They carried Ella down the stairs and placed her on a stretcher just outside the front door. I rode in the ambulance with her to the nearby hospital. By the time we arrived at the ER, she had been stabilized, stats were good on her baseline O2, she was breathing, but just lethargic, eyes closed, restlessly moving around on the stretcher. She was still not responding to my verbal cues. I felt this was brain related. Did she have a stroke? or possibly a seizure?

(Dad’s perspective: As I’m asking Tina for updates, it sounds like Ella is just not responding. She’s stable, but she’s definitely not herself. If Ella is alive, did she experience some major brain trauma (i.e. stroke, etc) to where this is now how she’s going to be…alive but unresponsive? Such a heavy, heavy thought. This was a incredibly difficult perspective to consider.)

About an hour and a half passed, and like a light switch, she looked at me, gave me a smile and started using her minimal vocabulary – “mom”. Then, she asked for “dad”, “couch” (she loves to sit on the couch these days), etc. She was still there! I wasn’t sure if we had lost her. My heart felt over-joyed. But this quick turn of the episode to her normal self, within an hour and a half….started to seem like a seizure.

Ella had seizures in the NICU when she was only 10 days old and confirmed evidence of brain damage in her right frontal lobe and a stroke in her left parietal lobe. So they gave her anti-seizure meds and it stopped the seizures. From there, they discontinued the meds during our stay in the NICU and we never saw any another seizure….until Friday, August 25, 2017, approximately 10 years later.

Although Ella looked stable in the ER, they wanted to admit her. I reached out to her pediatrician to see if I should drive her to Denver for a hospital stay at Children’s Hospital or stay local in Colorado Springs. He advised to stay right where we were, get admitted and see if they would give her an EEG – this would confirm if Ella had a seizure. We were admitted to the pediatric floor, and that day, they scheduled the EEG. They wanted to keep her overnight for observation to see if she would have another seizure or not.

The next day on Saturday, still no further seizure activity. The doctor walked in with the news: the EEG was abnormal. Ella is having ‘spike and wave’ seizures on the entire left side of her brain, indicating a form of epilepsy that needs to be managed. Ella would need to start taking anti-seizure meds and so they recommended Keppra. Then, they also would send us home with Diazepram, which is an injectable rectal gel, if she continues to have a seizure that lasts 5 minutes or longer.

For those of you who do not know: epilepsy is a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain. If you have a seizure once and you are mostly healthy, then you have an acute seizure. But when you have a chronic condition that needs to be managed, they give a diagnosis of epilepsy, which can take on many forms. They likened it to asthma and your lungs. Something very manageable but you will want to take meds and precautions to prevent any further damage.

(Dad’s perspective: While we are glad that the seizure can be managed with meds, we are not fans of adding any more meds to Ella’s regiment. While medications are necessary in instances to help a condition, they always come with side effects, which are never fun to deal with.)

Before we left the hospital, they also wanted to get a new baseline MRI. The last one on file was when Ella was 4 years old. With new technology and the seizure activity, they wanted new images to create a recent baseline.

The MRI was scheduled for 10:30am but they were having trouble finding the manufacturing info for Ella’s heart stents. They wanted to make sure that they were MRI compliant because if they were not, it would instantly kill her during the procedure. We knew they were MRI compliant, since they were placed in 2009 and she had an MRI in 2011, but since that was at another hospital, they were not comfortable moving forward. We could have chosen to have the MRI done outpatient but they have to sedate her and we were already there. So I called Josh at home (he was watching Isaiah) and we walked through the filing cabinet until we were able to locate the manufacturer info for her stents. That worked and they were able to confirm the safety.

The MRI did not happen until about 3:30pm. In the meantime, she had her first dose of Keppra and it made her drowsy – she fell asleep. When I walked down to the MRI area, I was able to stay with her all the way until they had to go into the room to sedate her. I’ve had ear surgery and have titanium in my ear, so I was unable to walk into the MRI room. I watched from afar while they attempted to sedate her.

When they called and she was in recovery, Josh and Isaiah had made their way to the hospital so Josh went down to see Ella. About 30 minutes later, they rolled them both up into her room on the stretcher (Josh was laying next to Ella singing her songs). She was a bit out of it from the sedation. Then, Ella seemed to get a stomach ache. I decided to give her some food via g-tube (they did not want her having food before the MRI, so she was empty). The food seemed to help and Ella fell asleep.

We kept asking about discharge. They wanted the results of the MRI to come back, to ensure that there was nothing alarming. Finally, although we had not seen a doctor or neurologist, the MRI must have had the results they expected without anything too alarming because they decided to let us come home and follow-up with neurology. All said and done, we were out by ~6:30pm. I put Ella to bed at home by 8pm, which is early for her. She seemed tired, and tipsy from the sedation. And now, just like when she was little, she will be wearing her pulse ox religiously overnight. Otherwise, how would we know she is having a seizure? For us, the best way is going to be the O2 saturation rapidly declining, along with all the other symptoms. But at least the pulse ox will alarm to tell us to go check her!

Isaiah has been fine, just a little residual cough and only had the symptoms of croup that one evening. He has not experienced the tightening of his airway since that time. I still think it was a miracle that he had that happen, was in our room at the time, that I was not sleeping real well that night, so that I felt prompted to check Ella when I did.

So far, Ella seems mostly normal….although we have noted a few slight changes. Behaviorally, she does seem slightly “off”, which can be a side effect of the seizure medicine. More aggression, louder screaming, banging objects/her head, whining, walking over pronated (especially right side), and trouble keeping balance while walking. The Keppra medicine has only just started with 3ml per dose, twice per day and titrating up. By next Monday, we will be at her full dose of 6ml, twice per day. The jury is out on this one…so far, not a huge fan of the side effects. Holding out slight hope that maybe the brain just needs some adjustment to the medicine and the effects will not be as noticeable after some time. We are also unsure if there was any permanent damage from the seizure. Seizures normally last 1-2 minutes. I walked in her room and it had already started (albeit likely recently), and we were on the phone with 911 for 6 minutes. The seizure stopped at some point when the EMTs were treating her.

All of that to say that it was a fairly traumatic event that Friday morning. Josh and I both thought she was dying in front of us. Now that we are home and the weekend is over, life is trying to resume and its apparent that under the surface, we are both still a little shaken from the event.

And although we don’t truly understand, we are confident that He has a plan and purpose in all of it. Just like the first time we received the news of a seizure and damage to the brain, the same song comes to mind:

I Will Praise You In This Storm

 
I was sure by now God,
That You would have reached down
And wiped our tears away,
Stepped in and saved the day.
But once again, I say, “amen”
and it’s still raining.
As the thunder rolls
I barely hear You whisper
through the rain,
“I’m with you”
and as Your mercy falls
I raise my hands
And praise the God who gives and takes away.
 
And I’ll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I’ve cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm
 
I remember when I stumbled in the wind
You heard my cry to You
and raised me up again.
My strength is almost gone.
How can I carry on
if I can’t find You?
And as the thunder rolls
I barely hear You whisper
through the rain
“I’m with you”.
And as Your mercy falls
I raise my hands
and praise the God who gives and takes away.
 
I lift my eyes unto the hills
where does my help come from?
My help comes from the Lord,
the maker of heaven and earth
I lift my eyes unto the hills
where does my help come from?
My help comes from the Lord,
the maker of heaven and earth
 
And I’ll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I’ve cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

This song is by by Casting Crowns. You can listen to it below.

[mp3]music/praiseyou.mp3[/mp3]

Videos and more photos can be seen here.

I know many of you used to wonder how in the world that I had time to blog about Ella, much less every day for two years. But I think that having a full time job that is crazy plus a newborn pretty much halted the blogging altogether for a stretch. But I’m sad because so many great things have happened with Ella and you’ve missed them because I did not take the time to write.

One of the best things is the addition of her baby brother. I cannot tell you what a shock and surprise it is to see her with him. At first, she wasn’t too sure because she had never been around a newborn. You could tell that there was this look with wonder as if she were saying, “Mom, what is that thing?” She doesn’t spend much time in public, so I honestly think she was unsure what this thing was that was so small and made so much noise. But as time progressed and her brother was in the house 24/7 with her, and we kept telling her that this was her brother with big smiles, she started to like the idea. It only took about 2-3 weeks for this realization to set in.

Now many of you have never met Ella in person and those that have met her, may not have had the privilege of getting a hug. Ella is strong and when she likes you and wants to hug you, be prepared. She doesn’t just put her arms around your neck and push her cheek into yours, she pushes her entire body into you, as if she is trying to crawl inside you!

You can imagine then, just how endearing, when we saw Ella trying to give her brother a hug. She likes him so much that we have to make sure she doesn’t hurt him. And Isaiah loves it – he thinks his sister is awesome. He’s always tracking her and smiling. Now we know that eventually these two will fight just like healthy siblings do, but we thought Ella would be more jealous and not like her brother. It’s very surprising to see her response and such a blessing.

Some other highlights for Ella:

-She’s been staying healthy! No overnight hospital stays!

-Grandma Eusey has played a huge part in helping Ella move forward. Since they hang out together during the day, Grandma Eusey is always teaching Ella and asking her to help her with things: putting things away, sticking clothes in the washer, opening and closing doors, brushing her hair, etc. By playing and making things fun along with her developmental stage, Ella is interested in exploring lots of things.

-Developmentally, Ella seems like she is around two years old. She’s starting to do things that other two year olds do, including the temper tantrums! Terrible twos have arrived.

-Ella’s receptive language has increased. We feel like she is understanding more and more of our verbal communication to her. When we repeat things to her verbally, day after day, it seems like she is picking it up faster than before.

-Ella has started to mimic. This is HUGE! From here, the possibilities are endless when it comes to communication – and we are so excited because we’ve tried everything for years and this is the first time we feel that we have had a break-thru.

Initially, about a year ago, she figured out that if she wanted more of something or liked something, she would clap her hands. And/or she would grab your hand and take it to show what she wanted. But now that she likes to mimic, it has opened up a new world.

It began about 8 months ago when she wanted us to play “Peek A Boo” with her. So she started taking her hand and covering her eyes and then moving her hand away from her eyes, as a sign that she wanted you to play this with her.

I am happy to report that this has now expanded. Her therapists like to use singing and nursery rhymes with Ella as a motivator. So the next favorite became Itsy-Bitsy spider. So we took the time to “sign” the Itsy-Bitsy Spider song. We found a free app on the iPad that would sing the song too – she would play it over and over and over again. Next thing you know, she was taking her hands to sign that she wanted us to sing the Itsy-Bitsy Spider song to her. That was awesome!

Grandma Eusey decided to incorporate the Baby Signing Time videos more into their day (Ella has been watching those since she was an infant). So one of the next signs was “hat”. Grandma would bring a hat or two with her and they would play. Ella can sign “hat” now. What else you ask? Eat and Wash Hands are there too. If you ask her, “Ella, do you want to eat?” She will make the sign for eat!!!

Now, we are working on “Mom” and “Dad”. It still takes lots and lots of repetition for her to get it, but we are so excited that we think she is beginning to understand the concept. This gives us so much hope that our daughter might some day be able to communicate her wants and needs more effectively.

-Yes, after 2+ years of daily use, Ella slammed her iPad on the floor and broke it. Sigh…Josh decided that he doesn’t use his that much and handed it over for Ella to use instead. Needless to say, we also upgraded the cover to the highest rated child proof one on the market!

-Ella’s favorite book is still Brown Bear by Eric Carlyle.
-With Grandma’s help, Ella is also learning how to draw with her erasable Crayola markers. She is making quite the art work. I think Ella’s birthday might need to include an easel.

-We purchased a tricycle for Ella over Christmas – she became obsessed with it. Her oxygen cord gets tangles all the time, so we have to out it away sometimes. She doesn’t know how to ride it solo, instead she like to push it around (and into the walls)! But the interest is there and she is working on it with her physical therapist.

-The physical therapist showed Ella and Grandma how to practice her getting in and out of her high chair. Grandma reinforced over and over – she got it down in about a week. Now you just tell Ella to go sit in her chair, and she does it solo!

-Grandma and Ella love to do her hair and put zillions of matching bows in her hairdo each day. But now it has become a “thing” to sit in front of the mirror and have her hair styled….and yes, she is still obsessed with shoes and loves to sit down and try each pair daily!

-Grandma and Ella like to do girly things. So one day, I noticed Dora underpanties over Ella’s diaper. She gets excited and thinks it’s very fun!

-Ella still loves her daily conversations with George.

-Ella’s biggest health challenge: gaining weight. Last time she weighed on March 15th, she was only 31 pounds but has definitely lengthened. Even her 3T pants on the tightest setting for the waist, were falling off of her (and they are too short). So our main mission is to increase her calories. Back in December when I was feeding Isaiah, I noticed that I was feeding Ella more often than Isaiah. Somehow, this didn’t seem right. So we worked to reduce her feeding sessions from 8 down to 7 times per day (during the waking hours, nothing overnight). But now each week, we try to increase her food just slightly. We are trying not to add feeding sessions. So far, we’ve had success. Over the past few months, we’ve been able to increase her blended food intake from 840ml to 1000ml, just this week. We just have to make the changes slowly and try to delicately push her body. We can tell that the slight increases are having an impact, but her pediatrician wants to see her gain 4-5 pounds and told us that besides keeping her healthy, that is or homework!

-We’ve regressed a bit as far as feeding orally. Her OT therapist is pregnant with a baby girl and had to go on modified bedrest so she cannot work! We won’t see her until September! And Ella will not let us feed her. Oh believe me, we still try. We’re hoping that watching her brother start to eat food will create new interest.

-Another piece of good news on the health front: we decided it was worth taking the risk to see if discontinuing aspirin and Plavix will work. These are blood thinners and Ella takes them to keep her three heart stints from occluding. Supposedly, the risk of occlusion is minimal now that they’ve been inside her body for a few years. So, we took an entire set of labs for the hematology to look at while she was taking both meds. Then, we discontinued taking them in early March and have been off of them. Now, we just went back for more labs yesterday to check the clotting properties of her blood. We’re hopeful that we can remain off of them and have no ill effects. (If you remember, she had her first stent placed and took aspirin daily but the stents occluded and she was back in the cath lab 6 months later, requiring 2 more stents). And unfortunately, by the time you realize that there is something wrong (too much pressure gradient on an echo), its too late. We are hoping that the blood work can give an indication and we can be proactive, if needed.

-It’s time for Ella’s recertification for her IEP. If you remember, we opted to keep hold her back in preschool again last year so she could continue to work with the same teacher – they love each other and work together so well. This year, she has to move into Kindergarden and her re-certification is up. When I asked her pediatrician about keeping Ella in a home setting versus attending school, he was bold in advising that we keep Ella home for another 2-3 years and away from all the germs from other kids in the school setting. She is staying healthy at home and what might seem like a small illness (like last year when she caught a virus from Josh), puts Ella in the hospital for days. He just feels that she needs to get stronger before we expose her to children daily. So I reached out to Ella’s advocate that we hired last time, so that she can attend the IEP and help us fight for Ella’s educational needs. Her IEP meeting is in mid-May.

-“Aunt Karen” comes to hang out nearly every weekend. The kids love on her and vice versa. It really does seem that she is part of the family. She is a God-send, giving us breaks from the kids and allowing us date nights.

-There was a CDH reunion in Gainesville, Florida yesterday that we were not able to attend. It would have been so fun to go and see some of the other families and see Dr. Kays. Sigh…maybe next time.

Josh got a new job recently – it’s been very busy but he’s loving his new gig. Also, we recently celebrated 18 years of marriage!

Finally, we’re trying to set up another family blog, to help this blog continue to feature Ella and her survivor milestones. Look for an update on our family blog coming soon, so you can catch up on TONS of photos and see how adorable Ella’s little brother has become!

Since the last time we posted, we have attempted to solve the mystery behind Ella’s coughing and retching. We wanted to reverse any changes recently made, to see if we could get her back to baseline.

We reduced fluid intake, eliminated protein juice that had been added for extra calories and tried increasing her dose of aldactazide (diuretic) back to twice per day (we had reduced it last spring). This allowed us to reduce her oxygen requirement back to 1/2 liter and it seemed that the retching disappeared, but there was still an intermittent cough.

From there, we figured that we would research pulmonology further. Along with the increase in diuretic, we tried an inhaler (albuterol) – that did not make a difference. Then, we tried a burst of steroids for 5 days. Once again, no change in the cough. Next on the list was to investigate options with GI. We increased her zantac dosage to the maximum dose from 2.7 ml to 3.0ml. The silver lining: we were able to make this increase in zantac because she gained weight over the past several weeks to 32 pounds (up from 30 pounds)!

It does seem like the increase in zantac over a two week period (along with the reduced volume, increased diuretic) has made the difference we were looking for – the cough pretty much disappeared. She started to do really well last week and into the weekend – sleeping better and very chatty. Just in a great mood overall.

So this week, we thought we would try adding the juice back into her diet. So far, it has not produced good results. Yesterday, we tried diluting the juice with water and giving it throughout the day (this replaces plain water to provide more calories). Unfortunately because it is a medicated juice with protein, it slows down the already slow process in her guts. So when we feed throughout the day, we can tell that her tummy is taking way longer to drain and process the juice. Then when we go to feed again, the cumulative impact of it not draining throughout the day ends up making her uncomfortable.

Today we thought that maybe we would try giving her the juice without diluting it and then giving plain water the rest of the day to see if that would help the drainage/volume issue. Unfortunately, the fully strengthened juice is not something she tolerated. Within 10 minutes of filling her belly with the protein juice, she was fussy and wanted to lay down. It was chewing up her belly and she was retching a lot. Normally, we would just drain the juice but we alo gave it with a bunch of meds. So we decided to just let her body process it. It created lots of gas and belly pain for her; she was misearable. We ended up having to cancel her speech therapy appointment because she was so upset. Finally, it went through her body fast and she had a bowel movement. Once it passed through, she was normal again. Fortunately, that happened about 20 minutes before her occupational therapy appointment so she was still able to keep that appointment. We fed her normally the rest of the day w/o any more juice and she did great.

We may try once more experiment of diluting the juice down even further – it won’t give her the additional 250 calories per day. But if we could get her to tolerate the juice enough to have 125 calories extra per day, that would likely help with the weight gain. It’s just so tough when she is fluid restricted; your choices are limited. So the good news is that we’ve resolved the cough – now we are basically back to baseline but faced with the challenge of the extra calories and the best way to do that within the contraints that we have with her cute little body!

One other health update: when we went to see the pulmonologist, we had a typical echocardiogram to check for pulmonary hypertension. One strange anomaly they found: a small amount of fluid accumulation around the lining of her heart. Normally, this is only seen with infections and Ella would be demonstrating all types of other obvious side effects that accompany an infection. Since she isn’t showing those signs, the pulmonologist was perplexed but not especially concerned.

When I followed up, I asked if they could get a second opinion from her cardiologist. The team actually went and acquired three other opinions internally at the hospital – none of them were concerned with the findings, since they were so minor and there are no other clinical symptoms. But as a parent, we have never seen this on any of Ella’s echocardiograms. So to be conservative, I requested that we check it again in 2-3 months (versus waiting 6 months which is the normal timeframe). This means that we will need to take Ella in for an ECHO in November or December to see if it is still present, has gotten worse or been minimized.

Ella is still doing well with her occupational therapy and is having a great time – she loves creamy garlic alfredo sauce! This is a girl after my own heart.

As a follow-up to the last post, Ella and Grandma Eusey have been having a great time hanging out each day together and bonding. It’s fun to see their progression with each other.

Grandma Eusey found a place to live nearby and hopes to make the move from California once the baby boy is born (Josh will have three weeks of paid paternity leave, so she will move while Josh is at home helping).

I don’t have too many photos of the great event, but Josh also turned 40 years old. One of his other college friends was turning 40 too, so we combined the surprise events for the day. It was complete with pizza, cake, and college guy friends going to a shooting range, dinner and drinks in downtown with a hotel as a crash pad (one friend even flew in from Florida). Overall, it was a memorable day for him. Much better than hanging out with the pregnant wife!

On the baby front, Josh and I also went and had some maternity photos taken by a local photographer.

My dear friend, Terri came all the way in from Dallas to throw me a baby shower – my neighbor was gracious enough to open her home. Many friends and ladies from the neighborhood arrived to give gifts and well wishes for the baby boy.

Finally, we’ve been getting the room as well as all the details prepared for our new arrival. Here is some shots showing the progression and transformation of a very pink girly room to a boy room with a vintage airplane theme. Some of the walls are still blank and have some room. We’re looking forward to Grandma West coming out with her artistic talent to put her stamp on the boy’s room (just like she did for Ella). She is planning to visit after the baby boy arrives.

So for now, the due date for our baby boy is just one week away on October 23rd. No contractions or any signs of labor – he seems content to sit in my tummy and bake longer! Besides being very uncomfortable (feeling large, pelvis pain, sciatic nerve pain, and all the other fun pregnancy symptoms), everything is progressing and measuring normally. At this point, my doctor said that we would discuss a new strategy if the baby is one week late – October 30th.

We’re just waiting in anticipation for our new arrival. Pray that all goes well in the coming days and that Ella’s little brother will make his arrival soon!

This last month has been busy! Plus, we will be going on vacation the first two weeks of July, so we figured we’d give an update now. Between vacation, Ella’s 5th birthday and all the crazy life stuff going on, it might be August before we can update again!

We’ve made some progress in getting Ella’s communication device funded. It is still in process, but we’ve received some confirmation that it is going through the necessary steps.

Ella’s physical therapist wasn’t convinced that she could help Ella any further, so she dropped her a s patient. This was a bummer, as we had worked with her for 3.5 years. Since Ella’s gross motor skills are still not up to par with other 5 year olds, we are in the process of finding a new physical therapist.

For some reason, Josh has gotten sick a couple of times since we posted last. And same with me…normally, we are both pretty healthy. This has made for challenging times and switching on/off to take care of Ella and try our best to not get her sick.

Ella’s Grandma Eusey came out to Colorado to visit for 2 weeks at the end of May/early June. That was a fun visit!

In the middle of Grandma’s visit, Ella caught a viral infection (probably one she caught from Josh). At first, we were not sure what was going on. Her stomach was hard as a rock and very distended. Then, she started to get a mild fever. After giving her a break from food and only giving Pedialyte and water for two days, we called the Gi department at Children’s Hospital, to get directive. They were not convinced that it was not something more major, like a bowel obstruction. We weren’t that concerned because the symptoms were not the same as the last time she had a bowel obstruction, so we were quite surprised when the ER doc came in to show us the xray films and mentioned that they needed to admit Ella to the hospital. After 1.5 hours and 4 attempts for an IV, Ella was traumatized. Since Grandma was visiting, Josh took the lead and spent day and night with Ella at the hospital from Friday through Tuesday. It was a long and grueling stay, as we were put under the general service team (instead of the GI service, for example). We felt like we had no advocates and had to fight to get information and advocate really hard to overcome unnecessary tests and procedures that they wanted to push. In any case, a healthy kid w/o Ella’s medical conditions would have been able to stay home and use over-the-counter medicines, but because of Ella’s system, it required hospitalization and complete bowel rest via IV fluids. We were just thankful that it was viral and that she did not need a major surgery!

Ella’s overall health has returned to normal since the hospital stay, but she did lose some weight from that episode and we are still trying to get her GI system back on track. We’ve had lots of fun with blowouts lately – let’s put it that way! She has an appointment in mid-July to meet with her GI doctor again to follow-up with the recent hospitalizations and changes.

We went to her pediatrician as a follow-up to the hospital visit and are planning to return in September to give Ella more vaccinations and a flu shot.

We had a fluke storm here in the Denver area in early June. Hail storm that was huge, tornado sirens, destroyed flowers and plants at our house. It lasted for about 3 hours while we hung out in the basement. It’s been so hot and dry – just this week we’ve had temperatures 100 degrees or higher four days in a row – that is a first for Colorado. And with all the heat and dry weather, Colorado has had so many wild fires in the mountains. While the fires are not really near us, please pray for all the families affected.

Our nanny got married on June 2nd and we missed the wedding since Ella was at the hospital. Such a bummer! Now, she has decided to move with her husband back to Kansas. This means that we will only have her until the end of July. The hunt has started for a new nanny. Such a hard thing to find.

One of our rental properties is up for renewal – we think we’ve found a new tenant (should have it confirmed by the end of the week), but that lease ends at the end of July too, so lots to coordinate that week!

In addition, we are having a family reunion for the Snyder family (my Dad’s side of the family) the first weekend of August, just a couple of days after we get a new nanny and turn the rental property. Crazy busy week!

Ella has figured out that sunglasses are cool – when we go out and she wears them, I think she likes them because she does not take them off. And everyone comments that she looks like a Hollywood rock star!

As recent as today, she left her occupational therapist speechless! With coaxing and assistance, Ella ate 1 1/2 tsp of beef gravy from a spoon, 1/2 tsp of cheese soup diluted with water and salt added, and 1 1/2 tsp cream of chicken soup diluted with water. All with a spoon and touching her chin (while we sang her favorite song to her as positive reinforcement). Wow!!!

Enjoy the summer until we post again!

I know it has been an eternity since we’ve posted. Our lives have been busy!

One of the big things that came up at the end of January: Josh had a sponsored work trip for Whistler in Canada where spouses were invited too. We knew this would be a great motivator to try and figure out a way for us to attend. Of course, we had never left Ella with anyone; it was a bit scary to consider. But we knew it was a healthy choice for us to make. The only way we even considered it is that we had someone in mind that we would trust completely to take care of Ella while we were gone for 4 days. We’ve been so blessed by our friend Karen. She’s become so integrated into our lives with Ella; it’s strange to think we only crossed paths about a year ago in January when Ella was in the hospital last. Her time with Ella started slowly last spring while I was here at the house, then graduated to babysitting solo, and now she is our one and only resource for overnights.

So we did lots of prep and training, even had slumber parties prior to the trip. We made sure that we had a Consent to Treat with medical history handy, just in case. It was a bit nerve-wracking because we were technically out of the country and our phones did not work. So it made it a bit more challenging to stay in touch. But the hotel did have wifi and Karen was great to email each day and send pictures, letting us know that Ella was doing well. The great news: it all went smoothly. Kimmie (nanny) watched Ella during the work week days and Karen watched Ella overnight as well as the weekend. Ella was good for both of them.

As far as our trip, I wish that it would have been more fun. Since it was a work sponsored trip, it was pretty fast for a long way to travel and since Josh’s company had just been acquired, he only knew about 15 people total out of 150. And because phones did not work, it made it hard to try and meet new people and coordinate to get together. But I’m proud that we went although it made me realize how much I missed Ella and how much I did not like being far away from her. In the future, I would prefer to go on vacations and bring along a caregiver to enjoy the time with us, giving us a break but still having Ella nearby. You just never know with her and the chances of something happening are definitely greater, so it made it hard to not think about it while we were so far away.

On to health status, Ella has been doing great. Steady and strong. We had an ECHO and that looked good, so then we went to see her pulmonologist. This time last year, we were able to reduce meds (they always prefer to do it this time of year versus winter). So, they figured that they would half her dose of diuretic and sildenafil (pulmonary hypertension medicine that she has taken since the NICU; the medicine that got her to get out of the NICU). Sildenafil basically opens up the blood vessels so they can capture the oxygen and take it around the body. The theory is that at some point when children’s lungs grow enough, there is more surface area and less of a need for sildenafil. Last spring, we were able to take her dose and cut it in half. Since she seemed to do so well, we figured we try that again this year. Unfortunately within a few weeks, we could tell that Ella was not tolerating the change, so we had to go back to the original dose. But at least we were able to reduce the diuretic – this means that she is getting less fluid sensitive. Especially considering that we are giving her more water and she is having less diuretic. So that was a small step forward.

We also went to the GI doctor this spring too. We were starting to have challenges keeping the consistency of her bowels, so we were thinking we might have to increase her Miralax. When we saw the doctor, he recommended doing a “flush”. Ella normally takes 1 cap of Miralax per day; a “flush” meant giving her 3-4 capfuls for 1-2 days in a row and clearing out her GI system. We were not excited at the mess that would cause for a couple of days, but took his advice. Fortunately after the flush, her system returned to her baseline and we’ve been able to stay on one cap of Miralax. The doctor stated that we might even need to do a flush once per month, but so far we’ve only had to do it once. Thank goodness!

Along with the GI doctor, we’ve been working closely with the nutritionist. Ella gained a little bit of weight, she is now 30 pounds. She’s weighed more in the past, but it is a significant gain from a year ago. One that note, the nutritionist put her at the 45th percentile for her age, weight and height. Not too bad considering that there were many months and years where she was not on the growth chart. But the nutritionist still wanted to see if we could beef up her calories, so she asked if we could increase the volume. We tried by giving an extra 50ml per day. She seemed to take the volume fine, but by the end of the 2nd day, her GI system could not tolerate the cumulative impact of the additional food. So, we went back for advice. Instead, she asked if we would try a completely different blended diet that was higher in calories. It requires a bit more work, but as long as Ella tolerated it, it is worth it. Fortunately, Ella did. It includes using only a couple jars of baby food (fruit & veggie), beans, hard boiled eggs, avocados, deli meat, green veggies, base of prescription protein juice (versus water), baby grain, and prescription calorie enhancers. Once she stabilized with that diet, the nutritionist said we should try giving Ella more free water each day. So then we were able to add an additional 250ml of free water. So, her feeding schedule is now just bolus feeds at 10am, 11am, 12pm, 2pm, 4pm, 5:45pm, 7pm, and 9pm. Still a lot of feeds per day, but better than round the clock – we’ve been there before too! And you can tell that Ella tolerates feeds better – not only has there been no retching, but we’ve discovered that Ella likes sitting up on the counter to get her feeds. So now you can use sign language to sign “eat” and verbally say, “Ella, let’s go eat!” and she will grab your hand, actually get excited and walk over to the exact spot on the counter, flapping her arms and ready to be fed! I can’t believe this is the same kid that for 4 years, winced and complained as she would see you coming towards her with food. Praise God! We can only hope that she will continue to gain more weight over the coming months. She has a weigh-in and check up in June.

Speaking of food, Ella has started to make great progress with her occupational therapist. She’s has the same therapist for the past 3 years and it has taken a long time of focusing on tactile stimulation and other areas before we could come back and focus on food. But the past 6 months or so, food has been the focus of the therapy. Whether it is playing with food on the tray, putting some on Ella’s hands and arms for her to explore on her own, moving toward her face, then lips. We’ve gone from peach juice, baby food peaches on her lips, to playing with cheese puffs! Just a couple of weeks ago, her therapist caught a video of Ella taking the cheese puff off the tray voluntarily, putting it up to her lips, licking the cheese powder off it, putting her teeth to the puff, and even rolling it around in her mouth! It stopped there, but still…that is HUGE progress for her! It is just exciting to see progress with food again. It was a long time where Ella would not tolerate any therapies that involved food, so it’s fun to watch progress in this area.

Another improvement for Ella that has to do with her mouth: each morning, Ella use to resist the teeth brushing! She would melt down, scream and fight you off with her arms while you tried to do it. Ella has always loved music and relished when we sing to her. Well, one of her favorite therapists started singing “Twinkle, Twinkle, Little Star” to her during her therapy sessions as a reward. So we started using it while we brushed teeth in the morning and found that Ella started to tolerate it a lot more. And then it just happened over time – now, Ella sees you coming with the tooth brush and actually looks forward to it! Once you sing to her while doing the part you need to, she grabs your hand on the tooth brush and then she wants to try with your help to brush her teeth. It has made one of the hardest tasks with her SO much easier. Once again, small baby steps but very appreciative of the little things we see. Along with the morning routine, she also doesn’t loathe bath time. She enjoys it more. It’s not something she asks to do, but we went from torture, loathing, tolerating and now satisfied with bath time. She’s even graduated and likes to stand in the shower and take one with Mom or Dad!

The one area that is still a challenge and continues to become more and more prevalent: the lack of communication. As she is growing and developing, she wants to express herself and her desires. Over the past year, she has made progress by grabbing your hand and guiding you to what she wants. But sometimes even then, her wants are not always clear. She gets frustrated and has lots of temper tantrums. It is really hard because I can’t imagine not being able to talk and tell someone what you want. But at the same time, yelling and screaming is not always appropriate behavior that you want to reinforce either. So this area continues to be a challenge.

As a follow-up to the developmental tests in January at the Children’s Hospital, they recommended that we change speech therapists and focus on someone with AAC experience (Augmentative and Alternative Communication). Specifically, have Ella get a AAC evaluation and work with her to determine a device that will suit her needs now and in the future. This process has been slow and more tough than we anticipated. We’ve always struggled with making strides in this area. We keep pushing for the therapist to bring different devices, test them, so we can try to get one funded which takes months! We have watched Ella make such huge progress on her iPad and figure out the menu system, swiping, home button, etc. And she is motivated by technology devices, so we feel strongly that this is the way to go with her. We were advised to not use the iPad for her speech device for a few reasons: it is her play toy, plus it is not locked down as a pure speech device, so she can hit buttons easily and find herself in menus that have nothing to do with speech. This makes sense, although some of these “special” AAC devices also are ridiculously expensive – some upward of $5k-$7k. Makes an iPad seem cheap. So we’ve decided that we are going to stick with our current AAC therapist, also get an AAC evaluation at Children’s Hospital to see what they think (they have all the devices on hand), and then research ourselves to see if we can do something on our own since that may be faster. We just need to pick a device and stick with it, consistently. It takes Ella so long to make associations – lots of repetition. So we are anxious to move forward. The one thing that is promising: the AAC therapist brought one device to test and see how Ella would do and within 24 hours, she figured out the button for “more”. This is why we think that we need to find a device and get going!

On the education front, Ella was due for her IEP. She has been in preschool under the same school and therapist for the past two years…and Ella LOVES her ECSE (Early Child School Educator). They have a very special relationship. This year, Ella has made tremendous progress as they’ve worked together. Ella can now take a shape sorter and get it correct 100% of the time and instead of just taking the shapes and tapping them together, she is doing meaningful play. Also, she’s learned to take colored wooden pegs and return them onto the correct color pegs. Now, they are playing with stacking cups and wooden puzzles with shapes. Anyway because of the great progress she’s made, I was not looking forward to the IEP process because it was a transitional IEP from preschool to kindergarden. This meant switching schools and providers. Also, continuing to fight to have home bound services since we still need to protect and preserve Ella’s health. The best news ever: I went to the elementary school down the street, anxious for the meeting and ready for a fight and her ECSE met me. Before the meeting even started, she told me that because of Ella’s age and birthday, we could choose to keep her in preschool for another year and put off the transition for another year. This also meant that she could keep the same teacher for another year. I was elated!

I did learn more about the transition process in this meeting and realized that we may have quite a fight on our hands next year. The home bound program is present, but not as ideal for Ella. Generally speaking, the home bound program across the country in most school districts, is purely meant to service kids that are temporarily ill and cannot attend school. So in the K-12 program, the school district is only required to have a certified teacher come to the home. Usually it is retired teachers that are limited to working a certain number of hours each week. You can hope and pray that they try and find a good match for your child, but legally, they are only required to have a certified teacher. This means that a high school calculus teacher that has no special education experience could be the candidate to visit my kindergarden aged child. Also, this home bound teacher does not create the curriculum. The elementary school staff down the street, who has never had any interaction with Ella would devise the curriculum and guide the home bound teacher. So, I will have to do lots of prep and possibly involve my ARC advocate to see if we can try to make sure that the school district at the very least, sends someone with special education experience to work with Ella. I don’t have to worry about this now until next spring, so I’m thankful for another year with her wonderful ECSE.

Speaking of IEPs, any parent of a special needs child knows that this process is grueling. One thing that is amazing and available to parents in Colorado is the PEP Conference (Parents Encouraging Parents). It is a conference funded and put on by the Colorado Department of Education. The wait list is huge and only a certain amount of parents are selected each year. So, the event is designed to offer support, information, and education to parents and professionals. PEP promotes partnerships that are essential in supporting and including children with disabilities and their families in schools and the community. Three PEP Conferences are offered throughout the school year; one in the fall and two in the spring. The purpose of these conferences is to bring Colorado parents and professionals together to allow them an opportunity to share ideas, discuss concerns, celebrate success, and obtain information relating to parenting, educating and supporting a child with a disability—ages birth to twenty-one. I signed up earlier in the year and was surprised to get an email that I had been chosen. It was at a high end hotel in Steamboat Springs in the heart of the ski resort – and all free. Most of the topics were not new to me, since I plunged myself into this realm upon Ella’s birth and I tend to be a resourceful person. But it was the first time I had been in a room of 250 people and was able to look around and although all of our children have different disabilities, all the parents could relate in one way or another.

Work has been busy for both Josh and myself. During February, March and April, I had several business trips to San Francisco and Dallas. Now this month of May, Josh has 4 trips. We’ve been fortunate to where our travel has been on different dates, so it has worked. Boy, this past week was tough. On Wed, Josh caught food poisoning. Then, Wed night/Thurs at 1:30am, I woke up and started to feel sick, but it was not food poisoning. Josh and I did not even eat the same thing and it had been hours since I had eaten. Long story short, I was in the bathroom a lot and found myself so dehydrated on Thursday that I had to go to an urgent care clinic for an IV and anti nausea meds. I could not even tolerate plain water! I guess it was like a 24 hour bug of some sort, but between Josh and I both being sick, we started to get concerned for Ella getting sick. So thank God for Karen. We called her on Thursday while she was at work and asked if there was any chance she could come over to take care of Ella overnight while we were sequestered upstairs. Fortunately, she was available. Josh woke up on Friday and thought he felt fine, told Karen she did not have to come back that night and took off for work. In the middle of the work day, he started to get the cold sweats, and felt dizzy and nauseous. So, he ended coming home in the middle of the work day and called Karen again to ask if she could come back. Once again without hesitation, she came to our rescue. We are so blessed – before this year, we did not have anyone that could take care of Ella overnight for us, so we would have been in a major bind!

The unfortunate part: Saturday morning Karen woke up and was sick. Man, we still can’t figure out how everyone is getting sick. So, now Karen has been hanging out with us in our guest room recuperating and we’ve been able to return the favor and try to take care of her, as Josh and I both feel better. We feel so bad – she came to rescue us and now she got sick. The other blessing so far: Ella has not shown signs of sickness. We can only continue to hope and pray that she does not get sick! It is so tough with her – she cannot vomit and it usually means a trip to the hospital. So we’re hopeful that we can possibly avoid it, but we should be able to tell over the next few days.

To all the moms out there, Happy Mother’s Day. And for all those with children of special needs, here’s a tribute to us:

Special Needs Moms, a look inside
by April Vernon

You may think us “special moms” have it pretty rough.
We have no choice.
We just manage life when things get really tough.
We’ve made it through the days
We thought we’d never make it through.
We’ve even impressed our own selves with all that we can do.
We’ve gained patience beyond measure,
Love we never dreamed of giving.
We worry about the future
But know this “special” life’s worth living.
We have bad days and hurt sometimes,
But we hold our heads up high.
We feel joy and pride and thankfulness more often than we cry.
For our kids, we aren’t just supermoms.
No, we do so much more.
We are cheerleaders, nurses and therapists
Who don’t walk out the door.
We handle rude remarks and unkind stares
With dignity and grace.
Even though the pain they bring cannot be erased.
Therapies and treatment routes are a lot for us to digest.
We don’t know what the future holds but give our kids our best.
None of us can be replaced,
So we don’t get many breaks.
It wears us out, but to help our kids,
We’ll do whatever it takes.
We are selfless, not by choice, you see.
Our kids just have more needs.
We’re not out to change the world,
But want to plant some seeds.
We want our kids accepted.
That really is our aim.
When we look at them we just see kids.
We hope you’ll do the same.

It’s a new year! And can you believe that it has been a year since Ella came home from the hospital last? This has been the longest stretch of staying away from the hospital. On that note, Ella has been feeling well since June 2011 – going on 7 months. It is so nice to have a reprieve from the constant medical issues – everything seems to be cruising along.

We’ve been blessed by our nanny that watches Ella each day as well as her two babysitters that have been faithful in providing respite visits. As a matter of fact, Josh and I have an opportunity to go on a short vacation together in February. So between the nanny during the day and a babysitter providing overnight care, we’re going to see if we can make it work! It’s a little nerve-wracking. We’ve never left Ella with anyone except for a handful of hours at a time. It will be hard for all three of us, but we feel blessed that the Lord has put individuals in our life that have an interest in watching Ella, to give us the opportunity. So we are going to try and see if we can make it work! Pray that all the details come together and that the days are event-free!

Again, Ella has been doing great medically speaking. The only issue right now: Ella has been losing weight. Last fall, she weighed 32 pounds so the dietitian asked us to back down on some of the calorie-fillers. We did and at our check-up in November she was down to 30 pounds, but based on everything else, it was still in a healthy range. But now she just weighed in at 28 pounds, so she has been steadily losing weight since her peak weight at the end of last summer. And 4 pounds is a lot for her little frame. I wish I could report that she has gotten taller but that is not the case either. We’ve been sitting at 37″ high for a while now.

First, we tried giving her a slight amount of volume increase – 10ml to each feed. It made her sick and return to her old ways – retching and GI issues. Amazing that her system is still so sensitive. It took a full week for her to feel like herself and not have any side effects. Next, we added back more DuoCal back into her food (1/2 cup extra to each batch of food). Just from an appearance stand point, we could tell that she gained a little weight, but it is still not enough. Ideally, they would like her to weigh 34 pounds by her 5th birthday!

So, now we are going to add even more DuoCal into her food (an additional 1/2 cup to each batch of food, for a total of 1.5 cups per batch of food) and we hope that does the trick. It sure seemed to last year when we needed her to gain weight. This is a recent change as of this blog post, so pray that Ella tolerates this change and starts to put on the pounds!

We have a few chances over the coming weeks to use a professional scale and see if the food change is making the needed difference: an appointment next week with the pediatrician and another appointment later in the month at Children’s Hospital. But the true weigh-in will be in mid-February when we meet with the dietitian.

Since our last post, the holidays came and went: Halloween, Thanksgiving, Christmas and the New Year. All events were low key for the West Family. Unfortunately, Ella doesn’t recognize or understand that one day is different from another so with our busy work schedules, we left everything mellow and simple this past year. We kicked it up a notch for Thanksgiving by inviting some friends and putting on a Turkey Extravaganza complete with all the homemade fixins and 8 pies! Yes, I went a little crazy in the kitchen. For Christmas, we did manage to make a cute holiday card featuring the Bun!

A few days ago, Ella had her first appointment with the Child Development Unit at Children’s Hospital. Based on all their testing, she tested at 6 months developmentally…this hasn’t really changed from last year when she was tested by the neurologist. Once again, they gave a diagnosis of “intellectual disability” which is a more current term than the former term of “mental retardation” that was common decades ago in our culture. I admit, I’ve already heard this news. This is not new information for me or anyone that interacts with Ella on a regular basis. Yet when you hear professionals look you in the eye and tell you that about your sweet little girl, it’s really hard to hear.

And these are the types of days when it brings a cloud of gloom over you. Most days, Ella is happy and you’ve accommodated your life to a “new normal” and for survival purposes, you don’t think about it much. But when you are around other children, it’s the holidays, or at times when you are told this type of diagnosis, it’s hard not to lose hope.

Fortunately, God knows just what we need. So the next morning, I opened my email and received this daily devotional, targeted to put my mind, heart and soul back to where the truth resides.

A Hopeful Future
by Samantha Reed

“Then Job replied to the LORD: ‘I know that you can do all things; no plan of yours can be thwarted.’ …My ears had heard of you but now my eyes have seen you.” Job 42:12, 5 (NIV 1984)

Sometimes I don’t fully trust God has prepared good things. For me, for family, for friends, for others.

This past year was riddled with home foreclosures, loss of businesses, empty cupboards and gas tanks for those I love. They’ve faced suicide attempts, drug overdoses, passing of loved ones. Family and friends alike have endured marital affairs, children sentenced to jail, a second year of unemployment, cars breaking down, churches falling apart and the list goes on.

I’m not sure He can redeem the pain, recover what’s lost, heal all that’s broken. Can He truly fit the pieces of this past year into a hopeful future?

Right now, circumstances suggest otherwise. And if I rely on what circumstances currently imply, I’m apt to believe the answer is no, the Lord is not able.

But circumstances tell tales that are prone to change in a moment.

And the truth of the matter is: God never changes. His power to give a future and hope never change. His Word never changes. So when life weaves stories of doubt and hopelessness in God’s authority over circumstances, I reread accounts of His faithfulness and redemption. I refer back to the Truth…

All the while Job’s family, home, crops and health demolished…God was preparing to give him double of what was killed, stolen, lost and damaged.

The time Joseph was a slave and prisoner…God was planning for him to be second in command over Egypt.

When Ruth was a homeless, barren widow…God was creating a home in Boaz’s heart for her to be a wife, and mother, and great, great, great-grandmother to His Son.

As Lazarus was bound in grave clothes…God was forming the breath that’d give him new life.

The moment David laid down in adultery…God was laying the groundwork for him to rise up in repentance.

Every time Saul crucified Christians…God saw Paul preaching the crucified Christ.

With each strike that Sarai beat Hagar with…God saw Sarah beating her jealousy, pride and doubt with the birth of Isaac.

When Esther was an orphaned girl shaking in fear for her life…God made a way for His daughter to shake a kingdom and save His people.

As Rahab welcomed men into the shelter of her bed…God saw her sheltering the spies on her roof.

When Peter lost faith and denied Christ…God saw him bringing many to faith as he proclaimed Christ.

As Moses killed an Egyptian with his hands…God saw him chiseling the Ten Commandments with those same hands.

At the time Mary saw Jesus die…God saw Jesus resurrected and seated on His heavenly throne!

No matter what the dire, dreary circumstances, God turned each into a hopeful future.

Our key verse assures us, none of His plans can be thwarted. Despite what is happening in life, these stories of redemption and hope speak the truth. God can and will reverse, restore, revive and renew. He sees beyond the present troubles and is sparking a fire to light up the future with hope.

As we begin this New Year, let’s be on the lookout for His plans to come to pass. And trust Him that He can take any circumstance and use it for our good and His glory.

Dear Lord, I’m so grateful You not only see my future, but You’ve planned it. Thank You for Your faithfulness last year. And for recording these stories of lives You turned dreary pasts into hopeful futures. I ask that You do the same for my circumstances this New Year please. In Jesus’ Name, Amen.

As usual, a lot has happened since Ella turned 4 years old.

Jobs started for both of us and have kept us busy. We’ve both had to travel, so it has required coordinating with each other to make sure one of us is home with Ella in the evenings.

What about during the days? Well, Ella helped us interview nannies and therefore, she truly made the final decision. Ella’s new companion is Kimmie. They’ve been having a great time together. And Kimmie kept a record of their first few weeks together on her own blog. Of course now that the college semester started in full swing, the updates slowed down. Gee, I think I can relate to that part! In any case, even if you only see the first few entries, it will give you a taste of their relationship; they’ve taken quite well to each other. Have I mentioned what a blessing it is to have found someone that we trust with our miracle daughter?

The past several weeks, Ella has continued to do wonderful. We did experience one week where her health began to deteriorate – she was struggling with taking feeds (lots of retching). Fortunately, an increase in her daily dose of Miralax along with an extra dose of water each day did the trick. We’re thankful that it was a quick fix and nothing major. At the same time, we recognize that having to increase her daily dose of Miralax is not necessarily a good sign and may mean future GI issues in the future. Even this week, we’ve seen signs of increased fussiness at times. We’re still trying to determine if it is purely behavioral or if there is anything physical that we need to explore. For now, still holding onto hope that she’ll continue to do well and that it is not the start of a bad streak.

Her weight gain has been steady – up to nearly 32 pounds! Therefore, the dietician asked us to back off some of the calorie-fillers we were using in her blended diet. We reduced the DuoCal from ½ cup per day to ¼ cup per day. Instead, she was still concerned that Ella might need more protein in her diet to make up for the fact that we are not using milk as a base for her blended diet. So, we’ve added an additional 4-6 ounces of protein. It will be interesting to see how her weight tracks over the next several months. We’re scheduled to see the GI doctor and nutritionist in November.

The neuropsychology department received our paperwork early in the year, but they have a huge waiting list. They finally called and are booking appointments 3 months out! Apparently, you go for quite a long day starting at 8am on a Wed and have to go back exactly one week later at the same time. Since 3 months out was the holidays, I asked them if we could take a pass and they could call us back for to book January appointments. It just seems like the holidays are crazy enough without this curve ball. At that point, it will be interesting to see where Ella is at developmentally and get some insight from this specialty group. They not only look at her developmental progress and behaviors, but also take into account her brain injuries and give guidance on the best ways for Ella to learn.

We did go visit Ella’s pediatrician for her 4 year checkup. She received 2 vaccinations plus her annual flu shot. Boy, she sure screamed loud when I held her down while all three nurses poked her simultaneously. For a child that could not even muster a cry at birth, you’d be shocked to hear the amount of volume that can come from our little Bun! The pediatrician was so happy to see her progress – her weight gain and overall healthy appearance, but more than that, she was walking around the exam room and interacting with him socially more than she ever has before! He noted with a proud sentiment that this is the best he’s ever seen Ella. We still see the pediatrician 3-4 times per year, but this time we were told that pending any obstacles, we could wait until January!

Finally, another health care visit in August: the dentist. This was a first time for Ella. And because of her medical history and likely requiring sedation, I opted to make things a bit more simple and go with the Dental Clinic at The Children’s Hospital. Although when I arrived, I was informed that the systems were not truly connected. This meant that I still had to complete pages and pages of medical history, current medications, doctors she sees, etc. That was disappointing.

In the past, I’ve tried to call the Dental Clinic and have them proactively come over when Ella has been scheduled for a procedure, so they could take a look while she was under anesthesia. We’ve learned all too well to opt in for clustering our care for the Bun. Unfortunately, they would always tell me that this was not possible since Ella was not an established dental patient. With her developmental delays and oral aversion, I went to this appointment knowing that they would not make much forward progress, but the goal for me was clear: just get in the system. This way, I can call in the future to try and cluster Ella’s care.

This is why I chuckled when the dental assistant came to greet us and began rattling off her list of things that would be accomplished at the appointment. Little does she know! She has not met the Bun – the Bun is in charge here and will not stand for this monkey business for one second. Even when it came to getting a height and weight, Ella started to melt down and exert her authority in the matter. Finally between me telling her and her unsuccessful attempts to explain to Ella what would be happening (I tried to inform her that Ella does not understand), I requested that I speak to the dentist before we tried to accomplish any of the items on her list!

Fortunately, the dentist picked up on the situation right away. She asked me to hold Ella on my lap, facing me with her legs wrapped around my waist. Then the dentist came close to me so our knees were touching. Once the dentist was equipped with her gloves, mask and tools, I leaned Ella back and the high pitched screaming and fighting ensued. The dental assistant and I worked on holding her down; I had her arms and legs while the dental assistant tried to hold her face in place.

The dentist glanced around her mouth briefly, brushed her teeth and swiped some fluoride on her teeth in an expedited manner. When that was done, she reached for her card and asked that I give her a call to schedule xrays, exam and cleaning for the next time that Ella has a planned procedure! And there you go…our goal was accomplished. We are in the system and there are notes on her record that maybe going this direction is a better move!

The good news: most of the kids that are 100% g-tube fed don’t have any cavities. She said Ella’s teeth looked good, but would love to clean them and get a set of initial xrays so we have a baseline for the future. Also, she told us to use fluoride toothpaste at home: it would take Ella swallowing 3 tubes of toothpaste before there is any harm from ingesting the fluoride. Moreover, to use the toothbrush when it is dry with a swipe of the toothpaste (wetting it creates more bubbles/foaming and is less effective for Ella’s fast brushing we do each day). Finally, we brush Ella’s teeth in the morning. She simply recommended that we switch to night time, if Ella ever starts eating by mouth. Overall, it was a good visit and I’m just glad that the dentist picked up on the situation quickly and didn’t try to push Ella any more than we already did with this first-time experience.

With summer coming to an end, the school year officially started. Ella’s doctors still want her to be home-bound and not exposed to other children for health reasons. So the school district came to our house to complete Ella’s IEP. The best news: it was an easy meeting because the same ECSE (Early Childhood School Educator) from last year is back! Ella loves her; they have a great relationship. Since Ella is still in preschool with the same ECSE, not much had to change from last year to this year. This made it an easy step. Unfortunately next year, we have to switch schools and staff with entering Kindegarden. This will likely mean bringing the ARC advocate back out to fight for what is right for the Bun!

We did get a new stroller/wheelchair that accommodates Ella’s oxygen tank and will continue to suit her better as she gets bigger. Only a few bummers: no shade for covering her noodle as we’re walking around (she doesn’t tolerate hats or sunglasses), no tray across the front (use it to prop a video player for her and/or when we’re feeding), and no cup holder for Mom’s diet coke. Oh well, so far it seems that she likes it.

We organized Ella’s play area – – seems like we need to modify it to better suit her needs every 6 mos or so. Here’s the latest setup!

Some of the fun things that Ella loves to do these days: go on walks around the cul-de-sac with Dad and/or her physical therapist, hang out and walk around on the deck with the dogs, learning to walk up/down stairs (still holds our hand or the railing), learning to run (getting fast), learning to jump.

One huge thing: her star stacker is one of her favorite toys: she first learned to place the stars on it (which was huge), but absolutely loved when it would play songs. One way to do that: hit the top button with your finger. She loved it so much that she would grab anyone’s hand that was nearby and prompt you to push the button for her. Now, she learned how to isolate her finger enough to do it herself! She’s also tolerated more tactile stimulation – so although she doesn’t love to touch new things her therapist puts in front of her, she’ll touch it to move it away or throw it off the tray (we’ll take it for now!)!

One major highlight in August: Grandma Eusey came to visit. She had a great time hanging out with Ella and relaxing. We also went to Copper Mountain for a getaway as well as went to the zoo!

Also, Josh recently celebrated his 39th birthday…the last year of his thirties. Make it count! We went to a nice dinner with Grandpa @ Capital Grille, Josh’s favorite restaurant.

On another note, I have to share that although I do not post nearly as often as I used to in the past, God still continues to use Ella’s story in a powerful way. Over this summer, I have had countless parents contact me via the blog and share about the hope that Ella’s smile brings to them while they are in the midst of a risky pregnancy or watching their baby fight for life in the NICU. I was even fortunate enough to talk on the phone with one expectant mom: her baby was diagnosed with CDH and she was trying to explore the best options, but was told that her baby would likely not live and she was filled with worry. Now, she is planning to go to Florida to deliver her baby with Dr. Kays and is filled with hope. Just amazing…

Speaking of hope, I mentioned that I’d been traveling a bit for work. This one story in the Spirit Magazine on a recent Southwest flight caught my attention and had me choked up. I will type out the article below for those of you that are interested in reading it, but even if you don’t read it, the last paragraph was a great summary:

“Often people will ask Evie’s family about what kind of life she will have and how much she will be able to do. The answer is that no one has a clue. Evie, they say, is just going to be Evie, the little girl that taught them all to slow down and enjoy people, to put their trust in God and to appreciate each and every moment.”

I’m pretty confident that we could replace Evie’s name with Ella’s above and the sentiment would be just the same.

Holding Onto Hope (Sara Burnett, writer for the Denver Post)
There are some things for which no pregnancy book can prepare a mother and father. Seven months after their unborn child received a lethal diagnosis, John and Lindsey Elsaesser welcomed Evie into their lives. Two years later, she’s still fighting.

On an overcast Sunday afternoon last September, Evie Jayne Elsaesser sat in a booster seat atop the kitchen counter. In front of her was a polka-dotted birthday cake with a “1” etched in pink frosting.

Lindsey and John Elsaesser, Evie’s mom and dad, had hurried home from church that morning to fill a few hundred balloons using the helium tank they’d rented. The goal was to have 365 of them tied up throughout their 1,400 square-foot Omaha, Nebraska, house, but the balloons kept exploding and they’d run out of time. Despite the shortfall, bouquets of nearly 50 balloons each floated about the living room, kitchen and garage. More were tied to the banister inside the front door, which stood open for arriving guests.

At the peak of the party, Lindsey led the gathering of 150 or so well-wishers in a round of “Happy Birthday”. As voices rose, Lindsey scanned the room, locking eyes for just a moment with her mother, Micki, who stood to the side, sobbing.

This was no typical first birthday party, and there was cause for the hoopla and swelling hearts: Evie, a resilient one-year old with a quick smile, was not supposed to have lives to see this day. Evie’s mom was a junior at the University of Nebraska when she met John in 2003. She was 20 and tired of dating: he was 24 and eager to settle down. “His stability was what I liked most about him,” Lindsey recalls. “He was out of college, he wasn’t dating around. And my family loved him. That was a big thing.”

They were married about 15 months later and, in May 2007, had their first child, Lyla. Not quite two years after that, Lindsey discovered that she was pregnant again. “We wanted our second child to be born within three years of Lyla, so they would be close,” she says.

Throughout her pregnancy, Lindsey pictured her two daughters growing up as best friends. It took just one phone call to transform the young mother’s dreamy vision into a parent’s worst nightmare. “John was with my mom, helping her with some landscaping,” Lindsey says, recalling the events of May 22, 2009, while sitting on a stool in her kitchen this past May. “That morning I’d called the doctor’s office to find out if they’d heard anything yet about my ultrasound.”

Dr. Robert Bonebrake, a specialist in high-risk pregnancies, returned her call just before noon as Lyla, who had turned 2 three days earlier, sat in the living room watching cartoons. Leaning over the kitchen counter with pen in hand, Lindsey listened carefully to the M.D.’s diagnosis before asking him to slowly spell it out: osteogenesis imperfecta. As he detailed the rare, genetic bone disorder, she scribbled her notes through a cascade of tears.

When John got home, he found Lindsey still sitting on the same kitchen stool. As Lyla played nearby, oblivious to her parents’ heartbreak, Lindsey repeated the words Bonebrake had uttered, words for which no parenting book can prepare a mother and father: “It’s a lethal diagnosis”.

“We just hugged and cried,” remembers John. Lindsey eventually read him her notes. “After that,” she recalls, “there wasn’t much more to say.”

“These following weeks are going to be hard. The closer I get to giving birth, the closer I am to having to let Evie go. I don’t know how I will do that.” – From Lindsey’s first blog post on Evie, on June 9, 2009.

For such an uncommon disorder, osteogenesis imperfecta – often referred to us as “brittle bone disease”, because its most well known characteristic – is familiar to almost any consumer of popular culture. Most memorably, it afflicted the villainous Mr. Glass (played by Samuel L. Jackson) in M. Night Shymalan’s hit 2000 thriller Unbreakable.

Nearly two months before Evie was diagnosed with OI, Lindsey at 12 weeks pregnant, had a routine ultrasound. But as she lay in the exam room that day, it was clear that something wasn’t right. “When I was pregnant with Lyla, the ultrasound tech talked the whole time, pointing out Lyla’s head and feet on the screen,” Lindsey recalls. “This time she was quiet.” When the tech left the room midway through the exam, Lindsey called John, who was finishing up a nursing-school clinical rotation at an adjacent hospital. He arrived just before the obstetrician Lindsey was seeing that day came in the room to report his findings: Evie’s hands, feet and nasal bone were undetectable in the ultrasound. They needed to see a specialist immediately.

The next day John and Lindsey met for the first time with the distinctly named Dr. Bonebrake. He confirmed that their unborn child had skeletal dysplasia, a term that encompasses several bone disorders. “Don’t Google it”, he warned. “There are too many types and variables.”

Bonebrake sent Evie’s ultrasound images to the International Skeletal Dysplasia Registry, at Cedars Sinai in Los Angeles, where experts determined that she had type II osteogenesis imperfecta, the most severe form of the disease. Most babies diagnosed in utero with Type II OI die during childbirth or shortly thereafter. If Evie lived, the Elsaessers were told, it would likely only be for minutes.

When Lindsey was 20 weeks pregnant, Dr. Bonebrake broached the subject of terminating the pregnancy. “I don’t do terminations,” he said, “but…” Before he could finish, Lindsey stopped him. “We don’t want one,” she said. By then, she and John had learned that the baby she was carrying was a girl. They’d even named her Evie, meaning life. “I wanted time with her, even if it was just while I was pregnant, “ says Lindsey. “I thought, If her life in my womb is all I’m going to have, I’m going to love that time.”

“I have heard that it is in the hard times when you experience the love of God the most intensely. In my deepest pain, I know that God is holding me together and his heart breaks along with mine.” – From Lindsey’s blog, June 11, 2009.

For all they have been through, life at the Elsaesser house is surprisingly normal. The lawn in the front of their home in an upper middle class neighborhood is perfectly manicured – a testament to Lindsey’s landscaping skills. John, who will soon earn his bachelor’s degree in nursing and is an RN at the Nebraska Medical Center, has the weekend off work, freeing them for Lyla’s soccer game and a family birthday party at a local pizza buffet to celebrate Lyla’s fourth.

Always tech savvy, Lindsey had become a fan of social media outlets like Facebook, and in the weeks after receiving Evie’s diagnosis she began reading the blogs of moms who had been through a similar experience.

As word of Evie’s prognosis spread throughout the Elsaesser’s circle of friends, church members and extended families, Lindsey was inspired to create a blog of her own – to share updates. “It was a way of letting people know how Evie was doing, and how we were doing,” Lindsey says. “In those last few months, because I was showing, we struggled with the question of who to tell about her prognosis. I figured if it was just someone at the gas station who I’d never see again, I didn’t say anything. But we told our neighbors, because I didn’t want them bringing us baby presents.” The blog also gave Lindsey a means to explain the situation accurately and in detail, but without having to worry about breaking down as she talked about it. “We could go to church and it would be fine,” she says. “Everyone already knew, so nobody asked.”

Unexpectedly, hundreds then thousands of people were soon regularly reading the blog, people Lindsey went to high school and college with but hadn’t spoken to in years, patients from her father’s dental practice, even strangers from around the world. Emails began arriving from folks in similar situations – a pregnant woman in California also coping with a lethal diagnosis for her child, a mom in Hong Kong whose daughter had skeletal dyplasia.

As the weeks passed, Lindsey’s writing routine got into a groove. After Lyla had fallen asleep and John had gone to bed, she’s retired to a desk in the upstairs room that would later become Evie’s bedroom, where she’d post updates and respond to emails. In a way she could not have imagined, this ritual sharing helped to center her, providing, as it grew in complexity and reach and emphasis on her deep religious faith, the solace and catharsis of a confessional.

Outside of the uniquely modern intimacy of the blog, it has been difficult for Lindsey to let down her guard. Still, recently, she sat on her sofa and wept as she recalled some of her greatest worries from those months before Evie’s due date. What would be worse, she asked herself, if she dies while I’m pregnant or if she dies in my arms? “The thing I lost sleep over the most was what would happen after she died,” Lindsey remembers. Like, in what outfit would they bury Evie? “I wanted to be the one to dress her and put her into the casket. I’m her mom. That should be something I do.”

On September 18, 2009, John and Lindsey checked into a corner room in Mehtodist Hospital’s high-risk ward, which is referred to as the “Princess Diana Suite”, for its size and above-the-bar amenities. A yellow butterfly hung from a wire on the door, an unspoken signal to nurses that this soon-to-be-born baby was terminal. As Lindsey went into labor, her family waited outside in the hallway. Every now and then her 21-year-old sister Kelsey would hold a stethoscope to the door, hoping for a telltale and miraculous, “Waaaaaaah”. Finally, little Evie obliged.

Her legs were bowed, her skin was pale, and her body felt limp, but she was bigger than John and Lindsey had expected – 6 pounds, 11 ounces, and 16.5 inches long – and she was alive. “At that point, we still thought there could only be moments,” Lindsey recalls. “So we just stared at her and told her we loved her.”

By the following morning, Evie’s skin had turned peachy in color and her breathing grew less labored – very encouraging signs, according to Dr. Brakebone and Evie’s pediatrician, Dr. Pat Steinauer, both of whom made visits. Later that afternoon, Steinauer called Lindsey’s cell phone with stunning news: He didn’t know precisely what form of skeletal dyplasia Evie was battling, but based on X-rays and tests, it didn’t look like OI, and, at least for the moment, didn’t appear life-threatening. Evie would be able to go home after-all.

The next day, Lindsey pulled out her laptop and shared the good news: The title of her brief post said it all: “Welcome Evie!”

“Lyla had to ‘check Evie’ every time she came to the hospital. She usually followed this by saying, “I think she’s working!” – From Lindsey’s blog, October 17, 2009.

Although they had to be extremely gentle with their precious new bundle, the nervousness and apprehension John and Lindsey experienced with Lyla, their firstborn, had all but disappeared. They took Evie to church and to the zoo, to the pumpkin patch and the park. Lyla said to anyone who would listen, “Evie’s my baby,” and she appointed herself assistant diaper-changer.

But they were far from unfetered. Dr. Richard Lutz, a pediatric geneticist at the University of Nebraska Medical Center, was working hard to figure out what was going on inside Evie’s little body. He shared X-rays and photos with experts across the country and entered Evie’s physical abnormalities – called “handles” – into a massive database of symptoms in the hopes of finding a match.

A break in the case didn’t happen until several weeks had passed. John and Lindsey were home with Evie when she was gripped by a seizure. They rushed her to the emergency room, where doctors drew blood and performed a series of diagnostic tests. There, buried in the results, was the smoking gun Lutz had been looking for: Evie’s blood lacked the enzyme that brings calcium and phosphorous together to form bone – a clear indication that she suffered from hypophosphatasia, a different and also rare disorder that softens bones and teeth.

Lutz was acquainted with the disease, but none of the babies he’d monitored lived long enough to experience seizures. He went back to his computer, certain he recalled about a form of the disorder that triggers seizures. Sure enough, he found an article written nearly 30 years earlier by a German physician. The seizures confirmed that Evie’s hypophosphatasia was the severest kind. Without treatment, about half of those affected by it die within a year of diagnosis. Lutz estimated that Evie had five or six months to live.

“As we were driving down Center Street tears started streaming down my face. I hadn’t driven down that part of Center Street since I was pregnant with Evie and we had visited the cemetery to get familiar with where we’d lay her to rest.” – From Lindsey’s blog, November 15, 2009.

It was Lutz who informed the Elsaessers of a clinical drug trial that had begun about one year earlier. By the time John and Lindsey learned of it, fewer than a dozen children were participating. They all were doing well, with no reports of substantial side effects. But none of the children had seizures like Evie did. If she were accepted into the trial, they’d be in uncharted territory.

John and Lindsey spent several days poring over pharmaceutical fine print, going back and forth with Evie’s doctors about the pros and cons of putting her on the medication. When it was clear that there were no options, they told Lutz they were in. Treatments began about a month later.

In the meantime, doctors determined that Evie’s lungs weren’t keeping up with her growing body and sent the Elsaessers home with oxygen gear – a tube that attached to Evie’s nose, wrapped around her ears, and snaked to a machine they placed in the bathroom. Because Evie had to be on oxygen 24/7, the tube was long enough to stretch to almost every room in their split-level home.

Evie’s condition demanded that one of her parents always be with her. When John and Lindsey went out with friends, she came along, secured in a sling against Lindsey’s body, with John nearby shouldering a portable oxygen tank. In March 2010, 5-month old Evie joined the couple when they celebrated their fifth wedding anniversary. “We went to a movie, but they weren’t going to let Evie in because it was R-rated,” Lindsey remembers, laughing.

Despite a house littered with medical equipment and a calendar filled with doctor’s appointments, the couple persisted in giving Evie and Lyla a worry-free childhood. They worked just as deliberately to sustain their marriage. John and Lindsey knew the stress of caring for a terminally ill child, coupled with financial worries and battles with insurance companies, could cause a couple to drift apart. But for them, it engendered the opposite effect. At night, they spend time talking alone about their days, about how Evie and Lyla were doing, and asking each other, “How are you feeling?” and “Are you OK?”

They made it a point, too, to lavish special attention on Lyla. For months, she didn’t seem to notice that there was anything different about her sister, not even when other kids would ask Lindsey about Evie’s oxygen tube or wonder aloud why they had to be so gentle around her. Still, Lindsey spent hours rehearsing in her head what she’d say when Lyla finally felt the need to know.

Then one morning, Lyla asked her mother to remove the tube from Evie’s nose. Lindsey said she couldn’t. “Why?” Lyla asked. Nervously, Lindsey took her oldest child’s hand in hers, and together, they touched each other’s arms, knees, fingers, and elbows. “These are bones,” she explained, “and God made you and me with strong, hard bones. He made Evie with soft ones, so that’s why we give her shots – to help her bones get strong.” “Oh,” a disinterested Lyla responded. “Can I watch ‘toons now?”

“She is still on oxygen, and has been eating and sleeping much better since that started. I can definitely tell she has grown, so hopefully she will start gaining weight also. I celebrated the end of the week with an apple fritter and en enormous Diet Coke on the way home…It was heavenly. Oh, the little things.” – From Lindey’s blog, January 3, 2010.

Lindsey sits on the couch one late afternoon in late spring, a yellow spiral-bound journal in her lap. John has taken Lyla to the grocery store, and Evie is playing on the floor of the living room with a doll whom Lyla has affectionately named “Little Baby”. At 20 months, Evie is so accustomed to her oxygen tube that when it falls out – from wrestling with Harry, the Elsaessers’ new puppy – she guides it back in, herself.

Lindsey bought the book she’s paging through to diarize Evie’s birth. “Since those could have been her only days, I wanted to remember everything,” she says. The book has since become a “health journal”, the place where Lindsey wrote down every doctor’s appointment, the name of every nurse, every medication. “I was really neurotic about it for a long time,” Lindsey says, turning the pages and reflecting on the ups and downs of that first year. “I guess it was just that element of being new to the world of the medically fragile; I didn’t know where things were going.”

One of those tormenting twists came in 2010. The journal entry starts with a simple: “Feb 5 – RSV”.

Evie was nearly 5 months old when she was diagnosed with the quite commonplace respiratory syncytial virus, which, though easily treated in healthy children, poses extreme danger to babies like Evie, with complex health issues. In a matter of days, Evie’s breathing became so strained her doctors out her on a ventilator in the pediatric ICU.

Five months later, the Elsaesser’s were at Children’s Hospital and Medical Center in Omaha, this time for major surgery. As a result of her hypophosphatasia, the plates in Evie’s skull has fused together too quickly, putting pressure on her brain and causing her head to take on a cone shape. In a three hour procedure, surgeons disengaged the plates, lodged separators between them, and stitched her back up, leaving a scar skin to a seam of a baseball encircling her shaved head. In recovery, Evie’s face swelled so dramatically that she couldn’t open her eyes.

“It was awful. Her nose looked teeny weeny on this enormous head. I would take a cold, wet rag and put it on her face to try and get the swelling down,” remembers Lindsey. “When the pain came, she would lie in her crib and cry, ‘Mamamamamama’. She couldn’t see me, but when she heard my voice she would reach up and move her arms around until she was touching me.”

“Hi Friends, where do the weeks go in the summer? I tucked the girls into bed tonight to the smell of chlorine hair and sweaty kid. Must have been a good day.” – From Lindsey’s blog, June 27, 2011.

Early this summer, John and Lindsey uncluttered the house so they could put it up for sale. It’s time, they think, for a ranch-style home, one that Evie can better get around in. Still hanging in the kitchen is the yellow butterfly that once adorned the hospital door, as a symbol of Evie’s delicate mortality. Today, it’s a constant, sunny reminder of how far they’ve come.

Without treatment, no child with Evie’s diagnosis has lived longer than 18 months. This month, she will turn 2. Lindsey and John have yet to decide how they’ll mark Evie’s birthday, but they like to joke that the reason they’re selling the house is the need to accommodate a bigger party.

And there is much to celebrate. X-rays show Evie’s bones are growing stronger. And her seizures seem to be under control. A recent surgery was performed to help straighten her feet. Finally, the Google calendar Lindsey uses to keep track of all Evie’s doctor appointments is showing weeks where there are none at all.

In this household, every new stride has significance. When, for the first time, Evie hit the growth chart – a formal indicator that she is no longer below the 0 percentile for children her age – Lindsey texted everyone in the family and posted the breakthrough on the blog. Though she is behind other kids her age in talking, her favorite word is Lyla, which she pronounces in one excited burst as “LylaLylaLylaLylaLylaLyla.” Earlier this summer, doctors said she no longer needed oxygen, and Evie took her first steps. When the family sits down to a meal and holds hands to give thanks, Evie reaches out her hands, too.

Dr. Lutz calls her case among the most satisfying he has ever been involved in. “There’s nothing more pleasurable than seeing your patient get better,” he says. The maker of Evie’s drug treatment has promised that no matter the results of the trial, each of the children in it will be allowed to continue receiving treatment as long as they live. How long that will be, no one knows. All you can do is look at the trend line, Lutz says, and Evie’s looks good. “What I see is that she is catching up. Not just progressing,” he says, “but catching up. To me that is a sign that she is innately OK.”

Often, people will ask Evie’s family about what kind of life she will have and how much she will be able to do. The answer is that no one has a clue. Evie, they say, is just going to be Evie, the little girl who taught them all to slow down and enjoy people, to put their trust in God and to appreciate each and every moment. “Every day, no matter what happens,” Lindsey says, “it’s awesome.”

I can’t believe that it is Ella’s 4th birthday. Today is always a day of celebration, but it also brings back lots of memories surrounding Ella’s birth and her first four years of life. The hard and stretching parts. But then she smiles at you, and all of that seems to disappear. You can’t help but get overwhelmed at realizing just how much she has overcome. She is an amazing, happy little girl with the sweetest spirit. We love our little girl and praise God for the amazing blessing of Ella Renae.

For all of you Ella fans, it’s been over two months since a post. Sinful on our part. Let me see if I can catch you up on the highlights.

First and foremost, I’m happy to let you know that all your recent prayers for Ella have been answered. We continued to have retching challenges and overall feeding discomfort until mid-June. It seems like we have tried every possible idea to help improve her situation and overall comfort, but nothing seemed to do the trick. It wasn’t until we combined several ideas simultaneously that the magic took place. Since that time, Ella has been doing fantastic!

We met with her pulmonologist in late May. Although Ella had tried a “blast” of steroids over 5 days, the improvement in retching was temporary (lasting only 1-2 days). Since there was improvement, it led her pulmonologist to suggest a continuous, low-dose of steroids. Apparently, taking a low dose every other day provides all the benefits of steroids yet reduces the long term side effects. Plus, many kids with chronic lung disease experience some type of improvement with taking steroids (since it reduces inflammation). The doctor was not convinced it would work, but felt confident that it wouldn’t hurt her and it was worth giving it a try. After months of trying different things and not having success, we decided to give it a go. Although we did not want Ella to take more meds, we felt out of choices.

We added the steroids and noted that her breathing seemed less labored. She was requiring 50% less oxygen. This was not expected but a nice surprise. Since she started taking them, her overall oxygen requirement went from 1 liter to .5 liter. Her color seems better and if she gets disconnected from the oxygen, it takes a lot longer for her to desaturate.

The steroid on its own didn’t solve the retching, but it was benefitting her so we continued taking it. Along with it, I decided to eliminate dairy from her blenderized diet. In place, the nutritionist suggested a calcium supplement (we had already tried soy and almond milk, neither had great results). It was hard to know if the dairy was causing a problem, but I felt it was safer to eliminate it as a variable and just give the calcium supplement. So the base ingredient of her blenderized diet is just water. Finally, we tried a feeding schedule with less volume per feed, but increased the amount of feeds per day. We also noticed that she could not have any food within the first hour after she woke up. So during the rest of the waking hours, we have 6-7 bolus feeds, 160ml each. I kept trying different amounts and different schedules. On their own, nothing worked before – not even a continuous drip feed. But with the steroids in her system, we found something that worked! The retching is 90% eliminated. Most of the time if we stick to the schedule, she feels good and her discomfort is minimized. If she does have retching, it passes quickly.

Right after her visit with the pulmonologist, we met with the GI doctor. We discussed discontinuing sulfasalazine, a medicine that she’d been taking for the past year. When she was hospitalized last summer and diagnosed with eosinophillic colitis, she started taking this medicine. We were cautiously optimistic that enough time had passed and maybe she could tolerate being off of it. Rather than make any sudden moves, we made all the changes with the steroid and feeding changes, waited till she seemed stable, and then started a very slow wean of the med (about a 4 week weaning schedule). She’s been doing great without the medicine. Along with that change, we were able to reduce the amount of Miralax she requires each day from 1.5 capfuls to 3/4 capful per day. It seems like her GI system has finally stabilized from her GI surgery in April 2010 (can you believe it took 14 months?).

We can always tell when Ella is feeling good. Besides the constant smiles, she makes the most improvements with her developmental milestones. Probably the biggest change is in the area of communication. Earlier this year, she started grabbing the therapist’s hand to initiate a toy or hit a button on a toy. Of course, the therapist would then try to get her to initiate the button on the toy. But somehow this simply translated for Ella. If she grabs someone’s hand, she can direct them to what she wants. About 6 weeks ago, she came over and grabbed my hand and took me from the family room to her play room and placed my hand on a clear box that contained toys. She was trying to tell me that she wanted one of the toys in the box. Sure enough, I opened the box and she grabbed the toy in excitement. That is HUGE for her. Fortunately, she was able to make this association and now it has translated to other things too:

• When she wants to watch a movie on her iPad, she grabs your hand and places it on the screen. If the video stops playing or she wants a different video to play, she grabs your hand and guides you to the screen.
• She’ll grab your hand and guide you where she wants to go. The other day, she grabbed Josh’s hand and took him to the front door. She wanted to go explore outside, so they went for a little stroll. Or she’ll grab your hand and start climbing the stairs and then place your hand on the child safety gate. This is her way of telling you that she wants you to take it down, so she can climb the rest of the stairs and go explore upstairs.




• She’ll go up to any door and close it for you. It might be her bedroom door, the front door, the dog crate, etc. She likes to shut doors!
• One of her toys has a button on the top that activates lights and music, but you need to use the tip of your finger to push it. She hasn’t quite got the coordination for that yet, but she knows what happens if you push the button, so she will grab your hand for you to push the button.
• She’s figuring out light switches. We’re starting to see lights turn on and off around the house!

All of this is so exciting – – for her to show some leaning of communication. Although no words are exchanged, we are beginning to figure out what she wants. This may be a great foundation for her speech therapist to use in the coming weeks/months. Speaking of speech therapist, we ended up switching since our last post. The therapist we have has only come about 4-5 times and she is amazing with Ella. Again, we’re already seeing some progress. For example, Ella loves to clap right now. She’s been doing it just because she’s realized that she can make noise with her hands, but the therapist has also been able to get Ella to clap on demand for “more” (close to the sign language equivalent). Anyway, good stuff on the communication front.

We were bummed about losing our respite care provider for date nights. As we shared before, our provider needed to have leg surgery and would not be able to walk anytime soon, much less take care of Ella. Her last visit was June 1st. The blessing in all of it: she has a friend with similar respite care background that is getting married and moving to Denver. She asked her on our behalf if she had interest in watching Ella for us. We interviewed her and she is going to become Ella’s new respite provider! We’re so excited. This means that once she is trained, date nights can resume for us likely in August sometime.

In the meantime, we’ve had a loyal Ella fan that lives locally that has been visiting Ella this summer. She makes a long drive (about 45 minutes to an hour) and simply comes with no strings attached to play with Ella. It has given me time to complete contract work and do other duties around the house, knowing that she has someone watching and playing with her. More than that, Ella has made a new friend (so has Lucy). Very sweet.

Besides the amazing improvements for Ella, we’ve been busy doing lots of maintenance on the RV. First, we started by getting all the necessary repairs completed (generator, brakes, exhaust manifold, toilet, new sleeping area/oversized mattress in back, gate for Ella, etc.). Then, we replaced the carpet which made it almost seem new inside. We wanted to get it ready so we could use it over the summer. Once it was ready, we had an itch to go camping. So we took it over Memorial Day to Moab, Utah to enjoy the views of the red rocks in Archer National Park. It was a last-minute trip but provided a great change of scenery and let us “test” out the RV to make sure all the kinks were worked out. This was also the first time that we tried “dry camping” or “boondocking” (camping in the wilderness without hookups or other facilities; just preserving water and using what you have on board the motorhome). It is free and often times, you can find great spots with amazing views. This experience opened our eyes to a new style of camping that we really like!!! Fortunately, there are tons of natural outdoor spaces in Colorado to explore in the summer. So we ended up finding one in Moab with great views of the backside of Archer National Park and then found a free spot in Colorado on the way back home.

We also used the RV for another “dry camping” experience in the Twin Lakes area of Colorado, just south of Aspen, when a long time friend came to visit us for a week. We took her around tons of scenic and noteworthy places in Denver and Boulder, but then wanted to make sure that she experienced the splendor of the Rocky Mountains. On the way to Twin Lakes, we stopped by Copper Mountain for a break. We used the pool to give Ella her first pool experience. She loved it!

After camping overnight with a view of the Twin Lakes, we drove on a scenic byway up to Aspen and hiked the Maroon Bells. Crazy beautiful scenery!

Speaking of hikes, I also wanted my friend to see Red Rocks Amphitheater too. On a side note, I recently purchased a child carrier from someone on Craigslist. Our friend is a triathlete and just adored Ella, so she offered to try out the child carrier and carry Ella around the Red Rocks Park. As the pictures demonstrate, Ella had a great time on her first hike!

Once our friend returned home, the last week of June was quickly approaching. Since Ella was doing so well and work had finally slowed down for me (very busy in May and June), I decided that it was time to head to CA to see my mom. She had already gone through one round of chemo and I was nervous that I might not have a chance to see her (I hadn’t seen her in over a year). Since Josh couldn’t afford a long stretch off from work, he got in the car and drove me and Ella to California over a weekend. We drove 10 hours and stopped in St. George, Utah. Then, we woke up and drive the remaining 6.5 hours to Orange County. There was about 1.5 hours until Josh’s flight back to Denver, so we snuck down to Balboa to see his grandparents! This whole trip was a last minute idea, but fortunately my aunt was nice enough to open her guest room up. So while Josh went back to Denver, Ella and I started the family visits.

Most days, we hung out with Ella’s aunt, uncle, cousins and Grandma Eusey. It was fun to watch Ella and her other family members interact together. I loved it when she started grabbing their hands to activate a toy or change her video on the iPad. We got to spend a good amount of time with Grandma, even keeping her company on another round of chemo. There was lots of baking that week (I couldn’t avoid the itch to bake and cook with family members) and of course, enjoy the sweets that came from our efforts! Once my mom had another round of chemo, she felt ill and needed rest. So then, we switched gears and hung out a lot with Grandma West. In between, we caught up with some of the Snyder gang in Laguna Niguel. All in all, a great visit focused on family.

After a week and a half of family time, Josh took the week of 4th of July off from work and flew out to CA to meet up with us. From So Cal, we started our drive back but stopped in Vegas for 4 nights to enjoy some family time for just the three of us.

Lucy and Lola were at a doggie daycare facility and Macy had free reign of the house while a neighbor checked in on her. We got an amazing upgrade to a suite in a new Vegas hotel with the best views of the Bellagio fountains at night off our own private terrace!

We took Ella to the pool and enjoyed some true relaxation.

When we left Vegas, we drove 10 hours to Beaver Creek, an upscale Colorado resort and stayed overnight before making a short drive home the next day. We finally arrived home on Mon, July 11th.

Since that time, lots has happened. Ella’s Grandpa went in for a cath lab procedure and had a stent placed in his carotid artery, to help prevent reoccurrence of stroke. We watched his dachshunds for him and it was a crazy house with all 4 dogs for a couple of days! Also, I unexpectedly received a call with a potential full time job offer. As you know, I’ve been doing contract work for a year and a half which has worked well while watching Ella full time. But this sounded like a great opportunity for a job working from home with limited travel, so I flew to San Francisco to check it out and interview. Let’s just say that I have an offer letter in hand. Simultaneously, Josh was willing to quit his gig and give me a chance to explore my career opportunity; he’s appreciated me staying home with Ella but knows that I’ve missed working and was willing to watch Ella for a time. And although he had talked to a few companies over the past weeks, he was not really expecting anything to happen right away. Yet once Josh gave notice expecting to take care of Ella for awhile, he unexpectedly received a job offer for a new company too! Josh will start with his new company on August 1st (they wanted him to start right away) and mine wants me to start ASAP as well, but I need to find the right caregiver for Ella.

Amongst the craziness, I hit a deer going 45-50mph down the street from our house on a major road and crashed the front of our Jetta. It is in the body shop getting repaired (the car that is), but it was very scary. Praise God for his angels that were watching over me! It could have been so much worse, but I only got one minor bruise from it all.

And the interview process for nannies has started. Please join us in praying that we can find the right caregiver for our sweet, miracle child. We were burned the last time we went down this path and are hopeful that we can find someone that wants to become part of our family, someone who wants to love on our beautiful daughter, someone we can trust. The better part this time: I will be working from home most of the time in a nearby room. If I’m going to have a full time job, this is an optimal situation and we feel abundantly blessed for our new opportunities.

Also in the weeks ahead, we have Grandma Eusey coming to stay with us for 2 weeks, with a short trip to Copper planned. Ella has a visit with her pediatrician scheduled and for the first time, we have to take Ella to the dentist! That should be interesting. All of this, plus starting 2 new jobs and finding the perfect nanny for Ella.

Dear Lord,
We thank you for our beautiful daughter you’ve blessed us with. The mountains and valleys over the past four years have been incredibly trying and have stretched us beyond what we thought we could handle and yet, it has only shown us that when it all comes down to it, we have to rely on you for strength to get through the days. Thank you for blessing Ella Renae with her health right now. We pray that continues and that she can make great strides developmentally as she works with her various therapists. Also, we pray for you to bring us the right caregiver for Ella. We are confident that since you orchestrated all of these life changes, that you will also bring us the person that you want us to invite into our home each day to oversee our amazing little girl. We praise you for the blessings of our new jobs and ask for your wisdom and guidance in the coming days.

So much has been going on since we last posted.

Unfortunately, Ella has continued to have problems. Mostly, she is experiencing nausea and lots of retching. We’ve had this problem for years. Feeding has always been a challenge. We got a respite from it for Nov and Dec last year. It was the same time we switched to the blenderized diet, so we thought it was the answer. Unfortunately after her surgery, all the symptoms came back. The latest theory: Ella’s colon is situated differently than our bodies – hers is mostly up high near her stomach. When we fill her stomach, it creates pressure on her colon. If she needs to empty her colon at all, gas or otherwise, it creates pain and discomfort. This leads to nausea and retching. Looking back, last Nov and Dec was also when she re-herniated her diaphragm and her colon moved into her chest. This created more room and less pressure on her gut. That is the only time that she has not retched. As soon as they put everything back in place, the symptoms returned. Without the surgery, she was obviously uncomfortable for other reasons, but it was the first time that Ella was not retching constantly.

When we’ve gone to the GI doctor and pulmonologist, we’ve also described the excess of mucus and phlegm that she is producing. It seems like more than normal. We’re not really sure why her body seems to be producing a lot of it. So when she retches, we get lots and lots of clear, egg-white mucus coming up. It is worse in the morning after she has been laying down all night and seems to improve throughout the day. When she wakes up, you can hear her coughing to try and clear her airways. The good news: her nissen is working – she is not retching up food. But the other part: her nissen closes off or tightens when her stomach gets filled to prevent reflux. But at the same time, this thick mucus can’t drain into her tummy either. So it collects in her throat and she tries to manage it, but eventually it comes up.

The GI doctor doesn’t really have any good solutions. As in the past, he suggests a GJ tube to completely bypass the stomach (it has to be placed surgically, plus you have to use a slow drip food pump and be attached nearly all hours of the day). Ella has never done well with a food pump. Plus, there is no guarantee that this would actually fix the problem. Otherwise, the GI doc talked about how her esophagus (structurally) is pooling her secretions and this could be the reason for the increased retching. Maybe with the constant coughing and retching, it is creating more mucus. The only fix for that is potentially open up her nissen to hopefully allow more drainage for the mucus into her tummy. There are two main issues with that approach: distending or extending the nissen does not change the anatomy of her esophagus and it may not even fix the issue PLUS then we have increased risk of aspiration of food into her lungs which is a HUGE issue for Ella. So, compromising the integrity of the nissen doesn’t seem like a good option when it is doing its job (keep in mind she’s already had 2 nissen surgeries).

Since I don’t like the aggressive nature of the suggestions from the docs, we’ve tried everything we can think of to see if we can reduce the amount of mucus: elevating her bed, humidifier, using the food pump with a slow drip of food, changing bolus feeds to increase the number of times she is fed, temporarily feeding just water/pedialyte versus any food, changing the blenderized diet (no dairy, no MCT Procal or DuoCal, thickness of food, types of ingredients), Claritin (maybe mucus was from allergies), etc, etc, etc. We consulted the pulmonologist via phone: he prescribed a 5 day burst of Prendisolone (a steroid) to see if the mucus production was due to any inflammation. Boy, that was NOT fun. The steroids have such horrible side effects: fussy, hyper-activity (which presents strange in a child with no speech), interrupted sleep patterns, etc. The first few days was HORRIBLE – it actually seemed like she created even more mucus – was that possible? Then by Day 5 of the steroids, it seemed less. She would still retch and cough to clear her throat and manage, but it sounded dry. So not 100% resolved, but much more tolerable. That lasted for about 3 days and then everything returned. When we visited the pulmonologist in-person, he actually commended us on the creativity of all the variables we have tried. Finally, he said that he really wasn’t sure but that we could try a low dose of steroids (small dose every other day) to see if we felt like that helped. This way, we don’t get any of the harmful, long term side effects of steroids but all the benefit. I explained that we are desperate for reprieve from this horrible, daily regimen.

Throughout the 2 week trial of steroids, we’ve once again had mixed results. First, it seemed worse again. Based on the last experience, that didn’t surprise too much. Then, it seemed better for a couple of days and then (BAM!), it would return with more force than ever. So we’ve come to believe that this will not go away 100% and that a combination of different approaches used can make it more tolerable. Here are some of the tips/tricks we’re using right now: taking low dose steroids every other day, not feeding any food for the first 3-4 hours upon her awakening each day and only giving water, making blenderized diet without any dairy, reduced the volume of food intake each day, used more calorie enhanced powders to make up for the lack of volume intake, once feeds start for the day, giving less volume via bolus several times per day (once every 2 hours until she goes to bed). Once again, I always feel like we are tweaking here and there every other day to try things to see what works best. Heck, we’ve only been implementing these exact tips for about 3-4 days. When we deviate (like I gave her a feed with blenderized diet about 1 hour after she was awake), and we had a major episode. She felt really sick, had nausea, sweating and retching for 1.5-2 hours. We still pray for healing for her little body.

For those of you are are blessed to not endure this type of thing, it is like having your kid have the flu or dry heaving every single day, multiple times per day. The nausea and pure discomfort that you see your child experience is torture. And yet, there is nothing you can do to fix it. And at the same time, you have to feed your kid. In all honesty, it is one of the worst things that I have ever dealt with regarding Ella. It is heart breaking and makes you feel completely helpless as a parent.

In between the feeds, you would never know that she experiences anything like I’ve described. Like when I take her picture and post it here, you would think she is doing fantastic. And if I did not have to feed her, she would be 100% fantastic. When she is physically feeling good, she is the happiest little girl you’ve ever seen. She smiles so much and so often. My heart is so warmed by it; I’m convinced it’s God’s gift to me during this journey of motherhood.

Along with that smile, she is making great strides with her therapists that visit nearly every day, multiple times per day. Unless she is feeling sick, she is usually in a great mood. They are pushing her to try new and different things and I think that she is getting to be more and more tolerant. Also, they bring in new items to play with and she seems to adapt better. The independence of walking around and exploring on her own terms is making her more open to new things. It’s just so good to see. And I know that her therapists that have worked with her for 2+ years can see the HUGE strides she has made. Remember, this is the same infant that could only lay on her side or back, not even sit upright on her own or hold her head up, and would hold her arms close to her side and not want to touch or experience anything new or different. It’s just amazing the little things that she is doing. Including this little stunt on a frequent basis (the video is blurry but you get the idea):

On a fun note, we have been busy getting the RV prepared for the warm season. We don’t have any trips planned right now, but had extensive engine work completed. In addition, the generator was not working so we had to get that fixed too. Then, we also decided to make a cosmetic improvement: new carpet. Josh is still in the process of removing the old carpet and getting it prepped for the new to be installed in the next couple of weeks (the carpet has to be original which would make it 22 years old)! Needless to say, we are looking forward to using our house on wheels this summer for short getaways!

Another work in progress: trying to get our house put back together. We had leaking in our house last summer on the Fourth of July. The builder honored their warranty and has been working to repair the leak in our home since last summer, which included having scaffolding on the back of the house for months on end! The scaffolding recently came down and the interior and exterior repairs have commenced. We’re looking forward to having our outdoor space back!

One bit of bummer news: our respite care provider is quitting. She has been nice enough to watch Ella for us 1-2 times per month since last November. She is having surgery on her leg and will not be able to walk for several months. We’re really bummed that we’re going to lose her. There is one other person we found that might be interested in helping us out. We’re praying that it all works out.

I’ve been really enjoying baking this spring season…cupcakes, cheesecakes, cookies! Not good for the waist line, but yummy!

Continuing on the health front, I mentioned in a prior post that Grandma Eusey was diagnosed with cancer in late January. She had surgery on March 16th and subsequently found out that it was Stage III (had gone into her lymph nodes), so she is getting ready for chemo & radiation in the coming days. Also, Ella’s Grandpa Snyder had a stroke on Easter Sunday. He was at the hospital briefly and then stayed with us for a week (along with his two mini dachshunds) to get on his feet again. But he got a pretty strong wake up call: a stroke, learned his carotid artery is 90% blocked on one side, high blood pressure, early stage of congestive heart failure, a urinary tract infection and diabetes. He had not been to the doctor in about 11 years and got hit all at once. Although he had numbing on the left side of his body that is slowly getting better, he is very fortunate that the incident was not worse. Now, he is focused on his health! Please lift up Ella’s grandparents in prayer as they walk down their respective paths of recovery.

Besides my parents, it just feels like health issues are everywhere. A lady from the neighborhood recently lost her husband to illness while another neighbor found out that she has cancer in both lungs that is not curable. One of Ella’s therapists came to a session and then subsequently came to another wearing a wig (she was recently diagnosed with cancer too). It has felt overwhelming. And just like the past four years with Ella have taught me, there is nothing you can do…except humble yourself, lift up in prayer and learn to accept what the Lord has planned for your life. Saying that sounds easy, but when it is you or someone you love, accepting illness is a tough thing to swallow.

Psalm 105:4 (NLT)
Search for the Lord and for his strength; continually seek him.

A Christian artist released a song she wrote recently after her and her husband have struggled with his health issues. She explains (definite paraphrasing on my part) that she always grew up thinking that blessings had to do with health or prosperity. Her and her husband were praying for healing and God wasn’t answering their prayers the way that they would have wanted. So they had to ask, was He still blessing them? She wrote a song all about redefining blessings and investigating this idea: could God possibly be blessing us by NOT giving us what we are praying for? Either way, the artist explains that there is one thing she is confident about: There is a blessedness that comes through waiting on the Lord. There is an intimacy in our walk with the Lord that comes from walking through that valley. There is a reliance on His Word that we only know when everything else in life fades away.

Below is her song that has really touched my heart….especially when I reflect on the valleys in my own life.

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we’d have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise