Posted (Tina) in All Posts on May-21-2009

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.

Posted (jooosh) in All Posts on May-20-2009

Ella sure does enjoy her computer time. I think it’s a genetic thing.

Today was spent visiting with some friends we hadn’t seen in years. Emmit, who I worked with way back in 1994, and his wife Jackie drove up from San Diego for a visit. We had a great time catching up. When they were on their way out, they invited us to see my manager from the same company. So we packed the car and went down the street for a quick visit at Starbucks. Such a trip seeing faces you’ve not seen in over 15 years!

Afterward, we headed out for an early dinner. Then we drove around an took in the views around Laguna Niguel. Love the hills out here.

After returning to “base camp”, some other friends (Paul and Heidi) that we knew from church came over for a visit. Such a good time seeing friends from years past.

Heading back to the great grandparents tomorrow, more time with Grandma West tomorrow night, Ella’s aunt and uncle on Friday, and then making our way towards Colorado on Saturday.

Just trying to soak it all in before the long drive home.

Posted (Tina) in All Posts on May-19-2009

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.

Posted (jooosh) in All Posts on May-18-2009

We all had a good day seeing friends and family…and we have the pictures to prove it.

Waking up with Bun

Lunch with our friend Ani

Visiting with the Lazio’s

Visiting uncle Cliff, but only through the car windows because aunt Diane is sick.

Driving around Huntington, Newport, and Irvine

And leaving you with this photo of the Huntington Beach Pier

Posted (jooosh) in All Posts on May-17-2009

We all had a great day hanging out with the Snyder family. There were 10 people over for dinner at Aunt Ginny’s and it was a good time for all. Ella mostly behaved herself while being around everyone. She had a couple moments where her stranger anxiety got the best of her, but otherwise she did very well.

We also had some time outside for lunch. We’re trying to hit the restaurants that we’ve really missed since being in Colorado.

Around 8:39pm we experienced a 4.7 magnitude earthquake for about 15 seconds. We grew up out here, so it’s not a totally foreign experience for us, but that magnitude is more on the medium scale. It was a pretty solid roller though and I felt it real good because I happened to be “in the library” at the time of occurance (that was a first for me). It was certainly Ella’s first earthquake!

Looking forward to relaxing with the Bun and catching up with more family and friends this week.

Posted (jooosh) in All Posts on May-16-2009

We made it! Once again Ella did great, but we are all just wiped out. The Bun is already sleeping and we’re not far behind her. Looking forward to some rest…

Posted (jooosh) in All Posts on May-15-2009

For as long of a drive we had to St. George (12 hours total with stops) the real saint was Ella. She did awesome. Very few fussy moments and did great the entire trip. Shortly after we arrived in our hotel room, she went right to sleep.

First leg down, next leg tomorrow…So Cal here we come!

Enjoy the pics of our journey below. Man…God’s creation is incredible, especially our precious child =).

Posted (Tina) in All Posts on May-14-2009

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!

Posted (Tina) in All Posts on May-13-2009

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.

Posted (Tina) in All Posts on May-12-2009

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