It was nice and warm in Denver today. I had two doctor appointments, so the Bun joined me.

Ella behaved herself for the morning appointment. She stayed in her stroller and entertained herself. That was good since I was getting 4 moles shaved at the dermatologist. The litocaine shot hurt like nobody’s business, but I had the babbling of the Bun in the background to remind me to suck it up. Ella has been through so much that anytime I think that something hurts or is painful, I am reminded that she has been through way worse. I’m praying that the biopsy comes back with no abnormal cells, but time will tell.

We had a short time between doctor appointments and I needed a few items at Target. It was in the same area, so it seemed like a good idea. First, we spent some time in the parking lot. I changed her diaper and fed her while she watched a video. Then, we decided to go inside. We were in Target when she started to get fussy. It seemed like she had gas. That was confirmed when I heard lots of tooting followed by a blowout. The meltdown continued even once she was changed; she was not letting down. When she works herself up, she also starts to retch a lot. I tried investing a few minutes to see if I could calm her down, but that wasn’t working. She seemed tired and cranky. So, I quickly tried to get the few items I needed and ran towards the check out line. All of this occurred over 20 minutes, so she was getting exhausted from crying so much. Even on 2 liters of oxygen, her color did not look great and she was wet with sweat. I felt the weight of people staring at me and it was uncomfortable; I felt like they did not understand. Once we got to the car, I had about 15 minutes before my next doctor appointment so I held her in the air conditioned car and she fell asleep.

When we had to start driving again, she melted down once more. This time though, she calmed down within a few minutes and seemed like she wanted to rest more. It was not a normal nap time, but considering that we were on a field trip, I was not about to stop her. She rested in her stroller during the next doctor appointment and a few minutes of shut-eye seemed to help a tremendous amount.

Thankfully, we did not have any more dangerous diapers on our errands. However, she made up for it this evening with 2 more and one that included changing clothes and the crib. Yikes! But at least we are at home, so it makes the episodes a bit easier to manage.

On another note, her oxygen has been higher since we returned home. We assume that her body is still acclimating back to Denver, but time will tell. She is currently on 1 liter when awake and around 650ccs at night when asleep. Another adjustment: the humidity in California seemed to give her a reprieve as we noted that her retching was less frequent each day. Sure enough, as soon as we arrived in a dry zone again on the drive back (St, George, Utah), the retching came back full force. I would have never guessed that humidity played a part.

We’re hoping for a restful weekend and plan to try and get out with the Bun to enjoy the sun.

It was a mellow day with the Bun. We went on a walk again this morning to soak up the sun and take a glance around the neighborhood. Ella enjoyed the stroll as she kicked her legs with excitement.

I had a rough morning. Like I’ve mentioned before, sometimes the weight and gravity of Ella’s condition and everything surrounding it can get the best of me. I continue to strive forward but certain days are tougher than others.

The OT session was productive today. We discussed a completely different strategy for Ella’s feeding goals. Right now, we have been using a method of therapy that works on the tactile stimulation along with exposure to foods. Moving forward, we discussed only focusing on the tactile skills and leaving the foods for the future.

Apparently, tactile stimulation is connected closely with feeding skills (she needs those skills before she will really eat). The focus is to desensitize her hands, feet, mouth and lips using various exercises. Currently, we are using dry objects: pinto beans, rice, feathers, beads, etc. We need her to enjoy having things in her hands and around her mouth. Once those go well, we will move to having her play with foods: cooked pasta, whipped cream, jello, baby food, etc. Ideally she would then take the foods she is playing with and explore putting them in her mouth. This way, putting the food in her mouth is on her terms.

This new plan is good for Ella because the feeding sessions are mostly meltdown sessions. She gets so upset with us trying to “force” her to eat foods. With tactile stimulation, it is more like play time with her toys so the stress level is not nearly as high plus it still moves us towards our goal of feeding. It is a good plan for me because the feeding therapy sessions are stressful for me. It is hard enough having to give her a bath and brush teeth much less trying to put food on her lips and in her mouth. I don’t enjoy doing things that make Ella melt down, cry hard and require more oxygen as she is turning blue. Emotionally, these types of instances wear me out during the day. Finally, it is a good move for the occupational therapist too. She wants to be more hands on with Ella but has had limited opportunities. Initially, Ella didn’t know her well enough or trust her. Focusing on the tactile stimulation exercises will give the OT a chance to progress with her relationship with Ella. For once, they will do something together that is fun! This trust will help us to progress to the next steps.

I’m excited to try this new strategy. We came to this plan in the middle of the session today and promptly walked upstairs and started in with the new routine. So far, it was working. Ella was having a good time with her therapist while doing the exercises. Bummer that I did not have the camera present!

I did have the camera present for the PT session, as usual. It did not go as well as yesterday’s session, but was still productive. Ella worked hard!

This afternoon, I had cabin fever so I took Ella on an errand this afternoon. She loved it – got very happy and smiley. It is a lot of work to take her places with all her various pieces of equipment, especially solo, but her excitement makes it all worth it!

I love how Ella grabs her hands and puts them together. Often times, she just sits and stares at them. When we were visiting a close friend last week, she pondered, “I wonder what little Ella is going to do with those hands”. It certainly does make you wonder as she sits and looks at them grasped together. One thing is for sure, it will be fun to see how that part of her story unfolds.

It has been a rough adjustment back into the routine of life, as Ella tried to take several naps yesterday. I resisted the temptation even though she was cranky most of the time. But, it paid off. She slept solid last night from 9:30pm – 9:30am. Thank goodness!

I weighed her this morning and she came in at 11.05 kilos (24.31 pounds). So, she has not really gained weight for the past couple of weeks. Our next appointment with her pulmonologist is June 9th. We are going to try and sit tight without adjustment to the food until that date. We want to get an update on her SVC and discuss the possibility of reducing or eliminating her diuretics. If we increase the volume of her food, that may introduce a new variable. She had such great weight gain for March, April and the first part of May, so I’m not too concerned about sitting tight for another week or so.

It was sunny and 65 degrees this morning, so we went for a walk around the neighborhood. Ella was still trying to wake up and face the day.

When we returned, it was time for the OT session. We tried the typical peaches, but then also tried whipped cream. (For those that were tuned in last week, we tried whipped cream on a stop to Starbucks during our road trip to California). Even this morning, it seemed like she tolerated the whipped cream more. The OT thinks that it is likely the airy texture, so we may branch out and try some other types of food besides baby food (e.g yogurt, chocolate mousse, chocolate pudding, etc.). Ella definitely let us know when she was done with today’s session. She started to get fussy, and it seemed like she was really tired.

Once Ella took a nap and woke up, we had a successful physical therapy session. The Bun was in a great mood and did not fuss one time. You can tell that she is getting stronger and tolerating more and more exercises. The PT is able to push her to do more each time.

After exploring her tongue and making faces (see the series of pictures at the bottom of this post), she spent a good amount of time on her belly. We switched to her belly because Ella rolled from her back to her tummy on her own! She is starting to do this a lot on her own. We noticed it last week on vacation when we would place her on her blanket to play and when we would place her in the crib. Now, she just has to learn how to roll back onto her back…she is still mastering that technique!

Last week, we also noted her pivoting and turning around in a circle while on her back. Well today, we tried it on her tummy by using her laptop computer as a motivating factor. Sure enough, we would place it just out of her reach and she would bear weight on her elbows, twist and turn herself just enough so that she could push one of the buttons on the laptop computer to initiate the music and lights on the screen. We went around in a circle a couple of times. She worked really hard, but didn’t know it because she was having such a good time.

Aside from therapy appointments, it was a quiet day with just the Bun and Mom. We missed hanging out with Daddy and are already looking forward to this weekend.

Psalm 40:11 (NIV)
Do not withhold your mercy from me, O LORD;
may your love and your truth always protect me.

Well, we had one more day to recuperate from our trip and unpack which was good. Ella’s schedule was light and Josh decided to take one more vacation day.

Through the state approved Early Intervention Program, we are required to have annual assessments. This is where the the case manager and therapists all come together to discuss goals and strategies for the upcoming months. In addition to the physical and occupational therapists joining this morning, we also had a speech therapist present.

We are going to shoot for a goal of 1x/week for speech therapy. We’re interested to see how Ella responds since it will be new for her. I’m expecting a response between physical therapy which Ella enjoys and occupational therapy which Ella greatly dislikes. She probably won’t love it since it requires her hands and mouth, two areas of heightened sensitivity for her. But, it does not involve eating or drinking which has to be the most challenging of all tasks for Ella.

Other than that, we are just soaking up the last few minutes of the evening as a family. We’re back into our normal routine tomorrow!

The drive from St. George, Utah to Palisade, Colorado (just past Grand Junction, Colorado) today was mostly uneventful. Last night, we decided to break up the drive home since we feel wiped out. That was a good call and tonight we are enjoying a glass of wine and resting before the last part of our drive home.

So besides the serene scenery, we did hit a bad storm. As the rain started to fall, we noted a car flipped over and another had run into the median. Within a few minutes, the rain picked up. The rain drops were so large and so loud. It was a fierce storm. Shortly thereafter, we hit hail. Luckily, it remained pea-size to nickel-size, but it was blasting the car. It was so loud inside the car and we were not sure if the car was sustaining damage or not. Then, in the middle of the storm, Ella got a build-up of secretions in her airway. It was scary enough that we had to pull over quickly, lean over the seat into the back, increase her oxygen to 2 liters, undo her car seat straps and pull her into the front seat area. From there, we leaned her over (with her mouth toward the ground) so that the secretions could fall easily out of her mouth as she was crying. There was such a build-up of secretions that she could not manage and they were starting to block her airway. She was having trouble breathing without inhaling the secretions. It was a close call and all of it happened while the hail and rain was beating the car. It was an intense moment.

We praise and thank Him for taking care of us as we make the journey back home. We’ve had such a great time hanging out as a family. Looking forward to rest tonight and a beautiful drive through the Colorado mountains on Memorial Day.

Ella had another amazing day. We think that she simply likes the idea of vacation – she gets to spend lots of time with Mom and Dad, go for rides in the car and look at amazing scenery, visit with people and not be sitting at home!

We had a great day back at the great grandparent’s house down on the Balboa Peninsula. After lunch, it was so gorgeous outside that we had to take a walk to show Ella the water.

When we settled back into the house, Grandma West could not resist any longer. She was good about giving Ella her personal space and letting her warm up to her. Finally, she crawled on the carpet and got real close to the Bun.

We wanted to make sure that Great Grandma had a chance to connect personally with Ella. After all, she was one of the main reasons we made the long drive out to California.













As you can see, Ella had a great day filled with lots of time with family. We have even more family to visit, although tomorrow is our last day to soak up the beautiful scenery and amazing weather. We’re going to do our best to enjoy our last day in southern California.

Drive to Newport Beach

The highlight today was Ella meeting her great grandparents. This is the entire reason we came to California for this trip: we wanted to make sure that they had the opportunity to meet their miracle great granddaughter.

Arriving at the Great Grandparents

We had a great time hanging out for lunch. And Ella was showing off with her laptop computer again. Great Grandma was observing closely with loving eyes.

Ella and her great grandmother

From Newport Beach, we traveled back down PCH to Dana Point to visit with a dear friend. We were at her house until 11:15pm, so we’re looking forward to going to sleep!

Tomorrow is a day of sleeping in and visiting with more friends. We’re also trying to soak in the perfect California weather and the beautiful views of the coast.

Ella had a rough night. She was up a handful of times, so she needed more rest this morning. Our OT session was canceled and that may not have been a bad thing. I didn’t get the sense that she would have tolerated the session. This gave Ella more time to wake up, relax and decide that she wanted to work this afternoon for PT. Once again, she did really well and the pictures are evidence of her starting to tolerate the weight-bearing exercises more often.

We’ve increased Ella’s bolus feeds during the day to try and eliminate the nightly feed via the food pump. We haven’t quite reached our goal, however, we decided to try and bolus 6 times per day instead of 5 times. It has been tough to get the last feed in late at night before she goes to sleep, but we have managed to try it a few times this week with success. As she continues to grow, it is easier to see how getting rid of the food pump at night might start to become a reality. That reality is exciting!

Ella has ceased gaining weight over the past week to ten days, so it might be time to increase her volume of food. We will not get a weight on her for about 10 days while we are on vacation, so if she has not increased her weight by the time we return, I will need to place a call to her doctor to see if we can increase the volume. Since she is so fluid sensitive and we do not have any conclusive results from the post-op SVC procedure, he may decide that weight gain is not a priority.

We’ve had a few good bath times over the past week. Not all of them, but we’ve had more than a sporadic occurrence. It is so much more enjoyable to give a bath without a child screaming and not breathing!

We’re excited to wake up and start our drive tomorrow. It will be interesting to see how Ella does since the first shift of driving is long. Although we will stop for breaks to feed her, change diapers, etc., I’m very interested to see how she does over the long haul. The only time we’ve done a long drive is on our way back from Florida. We limited each day to 4-5 hours of solid driving with breaks. Our first day tomorrow will be nearly twice that amount. She is older and enjoys the car more, but that is still asking a lot of the Bun! And we will be in remote areas where nothing exists, so please pray for our safe travels and for Ella to be in a good mood!

Ella woke up a bit earlier than normal. This ended up not being a good thing when it was time for occupational therapy. We tried to replicate our great session from yesterday, but Ella was not cooperating. She seemed tired and cranky. So, the session ended after trying for 30 minutes. Ella melted down pretty much the entire time and it was hard for her to collect herself. Again, I was convinced that she was just overly tired.

Sure enough, an afternoon nap seemed to cure the cranky princess. That is when I decided that it was time for the camera, thus all the smiles. She was definitely in the mood for physical therapy and had another great session.

It was great because Ella was even more tolerant than yesterday when it came to her weight bearing exercises. She was allowing the PT to maniuplate her arms and legs, forcing her to bear weight. I didn’t post any of these pictures but the PT even brought along a small ball and tricked Ella into weight bearing through her arms on the ball. It was great – Ella had no idea that she was even exercising.

About three times today, Ella retched so hard. Her airway was getting blocked with all her secretions and she gets so upset, it just makes the situation worse. After consoling and increasing oxygen, we did not have any bad mishaps. But it seems like the near passing out moments are all too frequent. I’m not really sure why or what the difference has been except that when she gets upset, she desaturates very quickly these days. And anyone who has spent time around Ella knows that her favorite trick when she is upset is to hold her breath.

So, I had a near pass put moment last night after bath time and 2 different times today. I have to crank up the O2 and even blow in her face gently to get her to breathe. I’m just praying that this is not a sign of something else going on because these episodes seem to have increased since her SVC procedure.

I have several sources for devotional readings. Isn’t it great when the one you choose just speaks to your heart and spirit?

The Source of Hope

Hope can be defined as the desire for something good and the expectation of receiving it. Jesus Christ is the only genuine source of hope, because He alone knows what is best and has the sovereignty and power to secure its fulfillment. All other hopes are grounded on the shifting sands of circumstances beyond our control.

Each of us has expectations for the future, but these often pertain only to this earthly life. Christ promises us the “living hope” of an imperishable inheritance in heaven. Everyday desires will all fade away, but our home in heaven is eternal. This is our ultimate security and anchor when the storms of life are severe.

But how do we endure times of trial right now? Heaven can seem so far away when pain is present and there’s no relief in sight. Hope anticipates a change of circumstances for the better.

And what about times when our situation is not improving—then, what is God doing that is “better”? Peter tells us He is refining our faith, which will result in praise and glory when Jesus returns. This is more valuable to us than gold or even relief from our distress. What a paradox! The difficulties which cause us to lose hope are the tools the Lord uses to increase our faith and hope in Him.

Christ promises us hope not only for eternity, but also for this life. Those times that God does not deliver us from difficulty, we can be sure He is doing a greater work within us. When we finally reach our eternal home, we’ll recognize the immeasurable value of the faith He produced in us as we kept our hope in Him.

1 Peter 1:3-9 (New Living Translation)
All praise to God, the Father of our Lord Jesus Christ. It is by his great mercy that we have been born again, because God raised Jesus Christ from the dead. Now we live with great expectation, and we have a priceless inheritance—an inheritance that is kept in heaven for you, pure and undefiled, beyond the reach of change and decay. And through your faith, God is protecting you by his power until you receive this salvation, which is ready to be revealed on the last day for all to see.

So be truly glad. There is wonderful joy ahead, even though you have to endure many trials for a little while. These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.

You love him even though you have never seen him. Though you do not see him now, you trust him; and you rejoice with a glorious, inexpressible joy. The reward for trusting him will be the salvation of your souls.

Ella had an amazing day.

She did really well with feeding therapy. Our current tactic is for me to hold her on my lap, dip my finger into the food, and swipe across her lips, sometimes getting it into her mouth. The first bite is when she retches, but the rest of the time it is minimal, which is a big deal for her. The biggest accomplishment today: no crying or tears. We went through an entire session and she tolerated everything. It is so nice to not feel like you are torturing her all the time. Don’t get me wrong – the feeding session was not something she enjoyed, but she did not cry or meltdown once. She tolerated me swiping the peaches across her lips and ever so slyly putting some into her mouth on occasion. Tomorrow, we are going to start trying again with the spoon. I hope that she tolerates that change too.

Also, I discussed with the OT that Ella does not drink at all. She completely refuses the bottle. Over the months, she would drink here and there, even throughout the night, because she was so thirsty. She would retch nearly every time and it used to amaze me that she still even had a desire to drink. But the instinct of thirst was so strong, that she couldn’t help but drink.

Ever since her SVC procedure at the end of February, she has refused the bottle. This is also the same time that her fluid issues were reduced and we were not having to administer the high amount of diuretics. So, I actually think that the diuretics were making her insanely thirsty. However, now that she has not been on the huge amount of diuretics, the thirst is not there and so she will not take anything to drink. This isn’t great for her either, so the OT is going to think of some exercises that we can implement to help Ella.

The Bun did not take her nap at her normal time today, so I was not sure how well the physical therapy session would turn out. Well, she surprised me there too! For whatever reason, she was very tolerant of the exercises and worked hard. About 30 minutes sitting up and reaching for toys. Then, we switched to tummy time. That usually lasts for 5-10 minutes. Instead, she spent the other 30 minutes on her belly – it was amazing. She would lift her head, weight bearing on her arms and elbows, get tired and rest her head down again. Then, the PT guided her by tucking her knees up and under her tummy, so she was placing weight on her knees when she would lift up. A simple demonstration is all it took and Ella kept trying to replicate the position on her own. The Bun was just in a great mood.

We are still working on speech therapy and have an appointment set for May 26th for Ella’s evaluation. It will be interesting to see what the speech therapist recommends for treatment. At this point, we would love verbal communication from Ella, but realize that simply forming some type of communication (signing or using picture books) would be a step in the right direction.

On a more serious note, I think that sometimes it is hard to step back and realize how different our journey is than most with lots of OT, PT and soon-to-be speech therapy. On top of that, Ella is considered medically-fragile. This just means that she does not have the immune system or resources to fight off common illnesses (we need to be especially conscientious while she is on oxygen therapy). In light of that truth, it means that we need to be careful who she is exposed to, and try to stay clear of public places as much as possible.

We are getting ready to go on vacation this week and have so many people that we want to see and yet, Ella cannot be exposed to children and most of our friends have kids (children inherently carry lots of germs). We are hopeful that some friends may be able to get babysitters, but realize that many will not and we will just have to skip seeing them this time. Ella has 4 cousins that I would love for her to meet and yet, it is not possible this trip.

I have been on the phone with the durable medical equipment company this week, arguing for them to send her monthly order of special formula and supplies early so we can make it through our vacation. Also, trying to scheduling an echocardiogram, researching up on a question regarding one of her medicines, coordinating the speech therapy evaluation, making sure we have oxygen tank refills and a place to exchange them upon arrival at our destination, etc, etc.

So every so often, it hits me that we have a special needs child that is medically-fragile. I realize that this is not a news flash, but it just hits me sometimes…and some days, it is harder than others. It is difficult to watch your dearest child not able to do things that “healthy” children are able to do. It is heart-wrenching to not see her able to drink from a bottle or eat or drink or crawl or walk or talk when most kids her age are able to do these things. Heck, she even needs oxygen therapy to breathe!

I know that we have been blessed with a little miracle. And this is not about complaining or venting, but I’m trying to express that the emotional impact of these realities can sometimes get lost in the mundane activity of life…and yet out of nowhere, it can just hit you. Today was one of those days for me.

A dear friend sent me a good read last mother’s day. She has a special needs child along with healthy children and is an amazing woman of God. I had to retrieve it in my email and read it again to try my best to get a different perspective.

Mothers of Children with Disabilities Worthy of Praise

Expectant mothers waiting for a newborn’s arrival say they don’t care what sex the baby is. They just want it to have 10 fingers and 10 toes.

Mothers lie.

Every mother wants so much more. She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you’re one who got a baby with a condition you couldn’t pronounce, a spine that didn’t fuse, a missing chromosome or a palate that didn’t close.

The doctor’s words took your breath away. It was just like the time at recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled her for a well check, and crashed headfirst into a brick wall as you bore the brunt of devastating news.

It didn’t seem possible. That didn’t run in your family. Could this really be happening in your lifetime?

I watch the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing, it’s a wondrous thing. They appear as specimens without flaw — muscles, strength and coordination all working in perfect harmony. Then an athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

There’s no such thing as a perfect body. Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them.

Frankly, I don’t know how you do it. Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair 20 times a day. How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the cliches and the platitudes, the well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike. I even wonder how you endure schmaltzy columns like this one — saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this, you didn’t jump up and down in the motherhood line yelling, ”Choose me, God. Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in perspective, so let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a woman I pass at church and my sister-in-law. You’re a wonder.

~Lori Borgman