The talk on the street is that we can go home tomorrow! I can’t believe how well Ella has recovered.

As I drank coffee and stared at the view this morning, I can’t believe that it will be 61 degrees on Sunday and then snow on Monday. Crazy!

Once the java took effect, I came up with a feeding plan to get Ella to her minimum “maintenance fluid” requirements:

8am (125ml)
10am (125ml +25ml pedialyte)
11:30am (100ml pedialyte)
1pm (135ml + 20ml pedialyte)
2:30pm (100ml pedialyte)
4pm (145ml +15ml pedialyte)
7:30pm (145ml + 20ml pedialyte)
11pm (145ml + 20ml pedialyte)

We left her IV on a very slow drip of 5ml/hour, just to keep it viable. But I’ll be excited to remove it tomorrow. Once again, another shock: that her IV lasted over a week. That is so rare. Plus, that we only needed to stick her once for a set of labs.

This morning, she had not yet gone to the bathroom, so we gave a 1/2 capful of Miralax. Then during rounds, we talked about the fact that she still had not gone to the bathroom yet. I expressed concern with delivering suppositories at home – she fights so hard. It does take 2 adults to put it in her and she is so strong at resisting and fighting back. You can’t blame her, but I was having trouble seeing how I would do this lovely job solo. So, the pharmacist recommended continuing to give Miralax (stool softener), but also using Senna (stool stimulant, from a herb called Sennoside). Since these are both administered via her g-tube, they take longer to take effect. By 4pm, still no poop so we gave another 1/2 capful of Miralax. It is now 11pm and still no poop. My thinking was to only give the suppository if she complains. I have waited for her to refuse a feed, be too distended and not tolerate a feed. But since she took all the feeds like a champ, we reached our goal feeds.

Besides increasing feeds slowly (which she has done incredibly well with them), I’m sure it is going to be challenging with her bowels. They need to wake up!!! I’m a bit worried about working this out at home, especially since the Miralax and Senna do not seem to be doing much, but I think we’ll get a dose of suppositories/magic bullets just in case. If I need another person, I can always wait until Josh gets home from work. It is just a good option since they take effect within an hour.

UPDATE since I started this post: It is midnight and Ella just pooped. You know it’s bad when you get excited over poop! The only challenge now: poop is loose! I have changed 3 diapers in the past 15 minutes. Ahh…the art of all of this with the intestines!

Since Josh will be at work tomorrow, Grandpa offered to come and help us leave the hospital. It will be nice to be back home in our own beds and get some feline and canine love too!

Also, please continue to keep Elijah in your prayers. He is headed to the OR at 11am CST, for his surgery to close him up from his diaphragm repair surgery over a week ago.

Thank you for the support shown in-person and virtually this past week.

Psalm 91:2
This I declare of the LORD: He alone is my refuge, my place of safety; he is my God, and I am trusting him.

Yes, it’s true! Ella was released from the hospital on Friday afternoon!. That was only 10 days in the hospital for a pretty big surgery! I know I’m saying ONLY 10 days, but Ella’s pretty keen on hanging around hospitals for a month+ at a time. This was a real surprise and we’re incredibly happy to be home.

Grandpa George drove Tina and Ella home from the hospital on Friday. You can see that he was in charge of pulling along the precious cargo.

During the first 24 hours back from the hospital, Ella had done pretty good. We’re still having challenges around her bowels moving things along, so we continue the dance with Miralax, Senna, and Magic Bullets. She had pretty huge blowout last night, but she still hasn’t been stooling consistently.

Late Saturday afternoon, Ella starting showing signs of discomfort and her belly was looking a bit more distended. It looked like things were backing up again. We don’t want to push her body too hard with the stool softeners and stimulants, but we also need to keep things moving along.

After a round of Senna and still no evacuation, we opted for her second suppository for the day. This was during the time we we’re trying to put her down for the night and she just wouldn’t settle and she was obviously uncomfortable. Finally, about 45 minutes later, the brownies were baked and came out of the oven. With Ella experiencing that relief, she was content to sit next to me and the pooches until I put her down at midnight. As I type this it’s 12:40am on Sunday and she’s finally asleep.

It’s been a month since we’ve been home from the hospital and it has been busy!

Ella had a rough few weeks at home getting her body adjusted back to everything. The first week, we continued the Compleat Pediatric diet regimen as we had tried at the hospital post-surgery. In hind sight, this food did not work great the few days prior to surgery so I’m not sure why we thought it would be that different after surgery. As expected, the Compleat Pediatric diet caused all kinds of issues: tummy distention, gas, etc. After a feed immediately and for several hours, she looked like she was 9 months pregnant with twins! And we would vent or decompress between feeds and we were not getting a bunch out of her g-tube. This meant that the food was draining from her tummy fine, but I think it was making her GI tract very unhappy, thus the distention. She was not going #2 on her own and when we would use stimulants such as Senna or suppositories, we would get watery diarrhea. We were doing lots and lots of laundry. It was a frustrating time knowing that Ella just felt miserable.

After the first horrendous week, Josh suggested we switch back to the homemade blenderized diet. Her tummy did not seem quite as distended, but she was still uncomfortable and fussy after feeds. I tried smaller amounts, several times per day and it did not seem to be making much difference in her comfort. Simultaneously, we switched back to using Miralax, because our thought was to see if we could get her back to what was working the best prior to surgery. At the same time, we decided that it was time to start therapies again so we called all of her therapists, so we could get back on their calendars.

At the 2 week timeframe, we went to visit the surgeon as a follow-up. Her scar has been healing well. He also gave us photos from the operating room. It was amazing to see just how large the opening was in her diaphragm.

The same day, we also went to the GI doctor to discuss our feeding and GI challenges. When Ella was weighed: she came back at 12.3 kilos (27.06 pounds) which is the low point she was at right after surgery. In other words, she had lost more weight since being home from the hospital. So, we came up with a plan to try and see if we could make some improvement:

1. Continue increasing Miralax to a point where Ella is going several times per day, with the right consistency that is not causing her to strain in any way
2. To help with weight gain, add one more packet of MCT Procal to her food (3 packets daily) along with 12 scoops per day of DuoCal, another calorie enhancing powder
3. Substitue items in the blenderized diet to reduce the volume we need to give Ella to 1000ml per day, so we can get the biggest impact (e.g. instead of 8 oz of fruit juice, substitute a jar of baby fruit)
4. Call in an order to Apria for a new food pump that can be worn in a backpack – try using food pump to see if slower drip will make her more comfortable

So, I found a backpack in the basement that was given to us by a children’s foundation on one of our various hospital stays and put just a tiny bit of weight in it. I wanted to see if Ella would tolerate wearing the backpack. We switched out the food pump with Apria and started to try the drip feeds. Once again, Ella proved to do worse with drip feeds. I’m not really sure why, but she seemed even more miserable. One again, we determined that Ella does not follow the rules. She tends to do better with a larger volume given all at once and longer breaks in-between feeds. The only part that was great: seeing my little girl walk around with a backpack on – she looked so cute. It seemed like she was going to run and stand outside waiting for the school bus.

Oh, another thing we tried and it didn’t work great, but we just had to try: we found ourselves out in the RV and forgot her stroller. So when we went into a restaurant, we carried her O2 tank and accepted the offer of a high chair – that was a first. Did I mention that putting the O2 tank on the back side of the booth and running your over-sized touché into it on more than one occasion does not feel good? Once again, it only lasted moments (I ended up having to hold her) but she looked like such a big girl!

One positive outcome right away since surgery: she is passing out way less frequently. The only times now seem to be when she is in some type of really bad pain, like gas. I only know because at the height of the pass out spell, she relieves a bunch of gas. And I think all of us know what painful gas can feel like – I guess she just doesn’t have the reserve in that moment to take another breath. But the episodes are much less frequent. Also since the cath lab procedure and being home, we’ve been able to reduce her oxygen requirement to 3/4 liter versus 1 liter. In the past, we’ve had these reduced oxygen periods after a cath lab procedure – everything is nice and wide open. This time, we’d like to think that she is getting stronger, but only time will tell.

Ella is getting more used to playing on the iPad, specifically with an app called “ABC Wildlife”. When I turn it on for her, I can see her getting more interested and engaged. She’s even started to try and tap the screen herself. My favorite thing: the iPad will be turned off, she will see it, walk over and start tapping on the dark screen. No words necessary – I think I know what that means!!!

Another big project this past month: changing insurance. Our COBRA coverage ended on 1/31/2011, so we finally made the switch to a new insurance plan. Plus Ella was approved for Medicaid last fall, but we had already reached all the out-of-pocket maximums for the year, so we really did not end up using Medicaid for doctor visits or medicines. With the new year, it meant getting everything lined up with Medicaid too. Many of Ella’s medications require prior authorization from the primary insurance as well as Medicaid, in order for them to be covered. We even had to go through and switch her most expensive medicine: sildenafil. Even though it is thousands of dollars more, the primary insurance as well as Medicaid would not cover this medicine for pulmonary hypertension. Why? Because it is the same main ingredient found in Viagra. So, we had to change her prescription to Revatio. This is the brand name of the drug whereas sildenafil is the generic name for the drug. The difference in cost is thousands. Silly that they will not see her medical case and simply make an exception for sildenafil because it would cost the insurance company and Medicaid way less money. Another frustration: Medicaid is supposed to cover the costs that our primary insurance will not. But the system is tricky – if the pharmacy makes a medicine starting from a powder versus crushing tablets, can be the difference of whether or not Medicaid pays the difference. So this month, we were able to resolve all but two of the compounds. Hopefully, next month we’ll be able to figure out all of them so that we do not have to pay any put-of-pocket costs for meds (which previously has been hundreds of dollars).

We had 3 visitors since our last post:
A quick drop-by from a CA friend that we have known for years

Grandma West for 9 days

Cousin Pete for the weekend

Grandma West did start her huge project of hand painting Ella’s table and chairs, but only got 1/3 way through, so we don’t have any unveiling yet. Here is an unfinished chair – I think you get the idea – it’s going to be very fancy and princess-like.

It was definitely snowy and cold while Grandma West was visiting!

It has felt like a baking extravaganza this past month. When Grandma West was here, we made a couple batches of cookies and a carrot cake for my Bunco group. Then for Valentine’s Day dinner when Cousin Pete was in-town, I made a layered red velvet cake (that was a first) and chocolate covered strawberries.


Finally, Josh’s work had a company meeting and asked everyone to bring something homemade. I opted to make another carrot cake and when I had leftover frosting, my creative juices got flowing and I put their logo on the cake. I must admit, it was fun!

We went to the pediatrician this week, just for a follow-up since our big procedure. I let Ella out of the stroller to walk around and strut her stuff. The doctor was so pleased with how she looked and her increased exploration and interactive skills. The last time he saw her was late October when we were first trying the blenderized diet – she was still retching a lot, uncomfortable, feeding/pooping challenges, she was not walking, etc. He was really happy with her progress. Also, the scale looked favorable. According to his equipment, Ella has gained 2 pounds. We’ll see if that is the real weight gain when we see the GI doctor late this upcoming week. The reality is: I’m hopeful that we have weight gain that is not fluid-related.

Josh had a chance to go snow boarding with friends from work! I was jealous…

One bit of heavy news: we also learned that Grandma Eusey has endometrial cancer and needs surgery in mid-March. We’re hoping and praying that is all she needs to eliminate the cancer completely. Please pray for Ella’s grandma!

For those of you that were praying for Elijah, I wanted to report that he was sent home from the hospital on February 7th, so just under two weeks ago. Pictures are worth a thousand words, so I think all I need to do is post this picture:

Hey there Ella fans. It’s been awhile since I posted. Tina’s been doing the lion’s share of keeping you all updated, but I felt prompted to give an update.

Ella was in a real honeymoon period right before our last post. It felt like we had things dialed pretty good and overall she was doing well. I think it’s always my hope that, after a big surgery, that we’ll get a good long break between any issues. It’s also a pretty typical trend of Ella’s to not let this be. We’ve had some decent stretches over the last 3+ years that were relatively uneventful, but nothing that really gave us a chance to escape into what one would think as “normalcy”.

I share this to say that this stretch only lasted a week, and right after our previous post, Ella starting to show new signs of trouble. All day last Sunday (2/20) she was grunting throughout the day, almost like she was constipated. The weird thing is that she wasn’t. She was also showing signs of discomfort after feeds, which caused her to pass out. There were symptoms of what we thought was reflux as well. Ella would often start coughing after a feed, as if something was in the back of her throat. All these symptoms were a bit disconcerting.

This trend continued to intensify throughout the next day (Monday) which really started to cause concern. Ella passed out a total of 4 times on this day. I was feeling anxious enough to request that we head off to the ER to get some tests done, but Tina didn’t feel she was in a real emergent situation, plus we did have multiple checkup visits already scheduled that week. I trust Tina’s gut in these situations and know that she had a good feel for Ella’s state. We agreed to see how Ella behaved the next day. Tuesday came and unfortunately it was the same as Monday: grunting, coughing, and, once again, passing out 4 times.

The one thing that did give us some solace was that there were moments where Ella was behaving normally. She was consolable, but there was no denying that something was going on inside her and it was causing severe discomfort.

On Wednesday Ella had a followup appointment with a neurologist. She had an MRI of her brain when she was in the hospital in January. This was the appointment to discuss details around the results. I was at work that day but Tina emailed me a list of questions that she was going to ask the doctor. Just consuming the reality of the questions we were going to ask was overwhelming. To give you a taste, here’s the list we came up with:

• How does Ella’s brain compare to a “normal” brain her age?
• Is the global cerebral atrophy the same or different than the NICU scan?
• When the atrophy shows that the brain is smaller than it is supposed to be, does it stay the same or can the rate of growth change? In other words, is she a certain percentage smaller, like 40% smaller and we can expect that to remain constant or can it change? Can it get better or worse?
• Are there any environmental factors that impact global cerebral atrophy?
• I know you cannot predict and Ella can always surprise us, but I’m trying to get a realistic perspective of what I can and cannot expect my daughter to accomplish as she gets older. What do other children look like with this diagnosis, as they age? What types of things are they able to do or not do? Can you share some examples of different outcomes you’ve seen.
• The best plan of action: continue OT, PT and Speech Therapy and try to make the connections for simple tasks?
• Do we IQ test at school age, like 6-7 years old?
• Is this the type of diagnosis that goes along with Mental Retardation?
• Do we ever need another MRI? or only if we see further neurological symptoms? What are symptoms that I should be aware of to indicate that further testing is needed?
• What are the next steps for Ella (what is her health care plan neurologically)?

I highlighted the the item above because it’s the question that, in my opinion, stood out more than any other. We knew since being in the NICU with Ella that she sustained some brain damage. We also knew that it was pretty bad, but it’s never been clarified how bad. With this latest MRI though, we were hoping to get more insight.

The images below show the structural part of a normal brain and the part of Ella’s brain where her injuries occured, likely due to lack of oxygen. But the MRI does not tell you how the brain functions. The neurologist compared it to opening up the hood of a car and looking at the engine and its various parts. Doing that is not going to tell you how the car is going to run, but in can give you some insight. More importantly, they use developmental scales in various areas to test children and see how their brain is developing. Here are some other tidbits we learned:

(this is a normal MRI image, grabbed from Medscape.com as an example)

(this is Ella’s recent MRI, frontal view, reversed right to left)

• You can see the part of her brain that died off due to a stroke in the upper left side of her brain (seen on the right here).
• Ella’s brain is about 20-30% smaller than it should be for a child her age due to global cerebral atrophy. The white matter should be tight like cauliflower, pressed all the way to the edges of the skull. See all the extra fluid and how it is open and flowery? That is the global cerebral atrophy that makes her brain smaller.
• Ella’s head circumference is on the growth chart; this means that her brain has grown as she has aged. The doctor thinks that it will continue to grow, based on the NICU MRI and the recent one. This means that unless we see neurological symptoms that are alarming, we do not need another MRI and her brain is expected to grow and maintain a 20-30% deficiency as she ages.
• The corpus callosum is the main transverse tract of fibers that connects the two cerebral hemispheres. It is made of more than 200 million nerve fibers. The primary function of the corpus callosum is to integrate motor, sensory, and cognitive activity between the left and right hemispheres. Ella’s corpus callosum was the area most impacted by lack of oxygen. It has thickened since birth, but it is not the thickness that you normally see for a child her age, so she basically doesn’t have the amount of nerve fibers that would be ideal for learning and growing developmentally. This means she will be able to learn certain associations (like she has with walking), but learning simple tasks and associations takes lots of repetition, therapy, etc. and there is no guarantee which types of tasks she will be able to grasp.
• Since the MRI only shows the structural part of the brain, the neurologist pulled out the Denver Scale (a test for screening cognitive and behavioral problems in preschool children). The scale reflects what percentage of a certain age group is able to perform a certain task. Tasks are grouped into four categories (social contact, fine motor skill, language, and gross motor skill) and include items such as smiles spontaneously (performed by 90% of three-month-olds), knocks two building blocks against each other (90% of 13-month-olds), speaks three words other than “mom” and “dad” (90% of 21-month-olds), or hops on one leg (90% of 5-year-olds). Ella scored between 12-15 months old in gross motor skills and 6-9 months old in the social contact, fine motor skill and language areas.

Tina received assurance from the neurologist that she expects Ella to continue to move forward and make progress, albeit slow, just like she has over the past few years. The doctor also noted that society no longer uses “mental retardation” for classification these days, but instead would use the term “developmentally delayed”. However, the neurologist also made a point to state that the professional community does not use this terminology any longer either because it gives the impression that Ella is simply delayed and that she will inevitably gain these skills, which she very well may not. So, the doctor labeled her as “intellectually and developmentally disabled”.

Knowing that Ella will continue to move forward, but not at a rate allowing her to catch up with other kids, Tina pressed the doc for a more specific answer even though it would probably be tough to swallow. After talking back and forth Tina pinned the doctor down by asking this question: “So when my daughter is 16 years old, will she probably only function at the level of, let’s say a 5 year old?” The doctor nodded and responded, “That is a reasonable assumption. Put it this way, Ella will not be 16 years old and functioning like a 14 year old”.

Ugggghghhh….the reality of this was like a punch in the gut. I knew this punch was coming, but I just didn’t know how bad the punch was going to hurt until now.

OK…so before you go off and start thinking about telling us how doctors don’t know exactly the outcome, and that she could surprise us, and that we never know where she’ll end up, and it’s in God’s hands, and it’ll be ok, and that she’s amazing…well, your right…all that is right…and we know this truth. BUT the reality of the moment is that we have an amazingly sweet precious little girl with a brain injury that will affect HER and US for the rest of our lives. We don’t know what the future holds, but the impact of this revelation provided by these details is deep.

Seeing Ella deal with her physical issues along with this news just really wrecked me. It’s been real heavy for Tina and I to process and I thank God that we can at least cling to each other through it.

On top of this, Ella continued to have her spells after the feeds so I ended up taking Thursday off work to help out. It can be so absolutely exhausting taking care of Ella, and I’m only doing it part time! I can’t believe the Superwoman Wife that I’m married to that does this full time and also maintains any sense of sanity!

Ella had a GI appointment scheduled for Friday morning but after consulting with the docs earlier that week, they requested that we see the surgery team as well. The GI docs were concerned about the possibility of issues related to the procedure in January which is what prompted them to have us consult with surgery. In addition, they had Ella take a chest xray prior to Friday, just to make sure her diaphragm was still intact.

While driving to work on Friday morning, I talked to Tina as she drove Ella to the hospital. Our conversation was thick with emotion around our daughter’s current situation. I was less than a mile from work when I was consumed by my wife’s mood and my own despair. My current state of mind convinced me to call off going to work that day and instead head to the hospital to be there with my family.

Upon arriving I hugged on my little girl while the GI doc talked through her symptoms and some possible ideas hoping figure out the cause of her issues. Her chest xray looked good – diaphragm still in place. There was no clear direction on what Ella was dealing with, and, as usual, she kinda stumped the doc on what path we should take. On top of that, we had already tried a variety of things to help Ella out and the majority of his solutions covered those same actions. Reviewing Ella’s condition with the surgeon also yielded the same results.

They did agree that Ella should come back in for an upper GI and small bowel series with contrast to determine if there are any obvious reasons for her issues. Tina will be taking Ella in tomorrow (Monday 2/28) for this test that will literally take all day.

Even through all this we decided to take a break on Saturday and escaped in the RV with some friends. We went up into the Evergreen area and had lunch at BeauJo’s. It was nice to get away and Ella did pretty good with minimal episodes.

As of today, it seems that Ella’s symptoms have subsided a bit (Thank God!), although she did pass out once this evening. We’ll see how the test goes on Monday. Hoping they don’t find anything that would require another surgery.

A couple items to share on the lighter side:

• Ella walked over to the cat and pet her on the back for the first time. It was so awesome to see Ella do this on her own and with such intent.
• While Tina was sitting on the couch, Ella decided to pull herself up onto Tina’s lap with minimal assistance. Once again…very cool.
• Ella is now able to climb onto her bounce and spin zebra on her own!

It is the moments like these that are so incredibly cherished.

Heavenly Father: Thank you for your sovereignty and for being the creator of the universe! We know you have a plan for Ella Renae, and it is not to harm her, but your plans are to give us hope and a future. Lord, instill in us that hope so that we may trust in you daily. We praise you Lord for our sweet child. Bless her and heal her Lord. We pray that your Kingdom will be greatly impacted by her life. We pray these things in Jesus name…Amen

I’ll leave you all with something that God put on my heart a few weeks ago during my own personal spiritual wrestling: The verse isn’t “Be still and FEEL that I am God”, it is “Be still and KNOW that I am God”.

Today is March 31st, so we think that you should mark your calendar today and every future year, in honor of Ella and all her comrades.

This is Congenital Diaphragmatic Hernia (CDH) Awareness Day.

If you see someone wearing turquoise today or sporting a turquoise ribbon, you’ll know why!

Babies born with CDH have about a 50% chance of survival, depending on how big the hole is in the diaphragm, how many organs moved into the chest, and how small the lungs are at birth. For many parents, this is a sad day as they are reminded of their angels that did not make it.

We weren’t sure if Ella would survive either. But after lots of surgeries and six months in the NICU, she beat all the odds.

Ella continues to battle CDH as it impacts her health and development each day of her life. Please continue to pray for her as she is still having complications since her most recent surgery in January.

We praise God for the blessing of Ella Renae and how He has already used this little one to impact so many. We look forward to seeing how His vision continues to be carried out.

Please take a moment to pray for all the CDH babies out there, for the families where their CDH babies didn’t make it. Praise God for the CDH miracles that are here with us today and pray for the families impacted. Lastly, please lift up all the CDH babies that are in their mommy’s bellies or in the NICU fighting the battle right now for their very lives.

Above all else, we know God is sovereign and has a plan for each of these CDH babies:

Psalm 139:13-16 (NIV)
For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.

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
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

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.

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.”

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.

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.