Lemonade for Ava

Nadia Soufi may be just a child, but she was determined to do her part in raising money for Ava's KidWalk system. She proudly set up a lemonade stand at the Rogers Ranch pool grossing $200.00 towards this great cause. A big thank you to Nadia, her friends and all those that contributed to making this a huge success.

YOU can help!

Kerri Thompson has done a fantastic job setting up the website with the donation link. It is really nice... complete with music and pictures.

The description for the KidWalk is in the right tool bar. The link to paypal for donation is at the bottom of the description.

http://avalopez.blogspot.com/

Thank you again for everything that you have provided to the Lopez family... hope.

I will not be writing again for a few days. Thank you all for being so wonderful.

Ava... the party waits for you.

fw.

Ava's need for a Kidwalk system

Yesterday I had said, “What’s left?” regarding Ava’s recovery. One of the big hurdles remaining is ambulation (walking, running). Currently Ava’s core body strength cannot support her to even sit up, but she does have some strength in her legs. Probably not enough to support her body, but enough to kick, and this should be enough to get things going. But how do we translate this into ambulating and exercising her muscles to increase strength so that she can eventually walk on her own?

Christa Santa Rosa Hospital has borrowed a medical device named “KidWalk,” which was developed in part by Stanford University. The device is very much like a wheel chair, but instead of having a chair-like seat, it is more like a forward facing bicycle seat. The seat is set low, at about the level of the wheelchair axles so that a small child’s feet can touch the ground. There is a back-brace/harness system that supports the child’s torso so that they can sit in the chair while their feet are on the ground, without having to support the weight of their body. Their legs can move and they can walk where they want to walk without requiring the strength or coordination that is required to walk without assistance. (I have included a link below so that you can see it in action).

Amazingly, I have been told that there is only one such device in all of south Texas for rehabilitation of children. The one that Ava has used at Christa Santa Rosa was brought as a temporary loaner from the device representative. It is shared between other hospitals in South Texas, and is not always available for Ava.

Psst… This is where the favor comes in…

We are wanting to buy one for Ava’s use during her rehabilitation. The cost? Base unit… about $3000. With all the bells and whistles… about $4000, or so. Detailed information, with pictures and a video demonstration of how this works/looks can be found at http://www.primeengineering.com/pages/products/kidWalk.html.

Once you see the video demonstration, then it does not take much to understand, “yes, this is what I would want for my own child if they were unable to walk on their own.”

The hope and expectation is that our prayer warriors will continue to deliver on Ava’s healing, and she will graduate from needing such a device. The Lopez’s will be donating the KidWalk to Christa Santa Rosa for use with other rehabilitating children, without concern for needing to rely on the instrument companies charity to bring it to the hospital and allow them to use it. This would be good not only for Ava, but many other children and families that are much less fortunate than us.

Kerri Thompson is setting up a separate blog (secondary to obstacles with donating directly from the Caringbridge website) with a link to a PayPal account for Ava. We have explored many options with how to handle this and keep coming up with certain roadblocks. Firstly, establishing a non-profit organization so that your donations could be tax deductible takes time, which takes away from the usable time for Ava’s rehabilitation. Secondly, directing the donations through Christa Santa Rosa also requires time and limits our ability to control the use of the funds for the intended purpose. Thirdly, directing the donations through some other organization may stand in opposition to some of the beliefs of others and again may limit the control of the funds for the intended purpose… getting Ava a KidWalk to assist in her rehabilitation. We should have a link to the blog posted tomorrow.

How much is needed? Only modest amounts, but we don’t want anyone donating money who is not in position to donate money. You all are great people and your interest in Ava’s story and offering prayers and words of encouragement to the Lopez’s is valued beyond measure. These are financially hard times for a lot of people right now. If you are tight for cash, then don’t even consider it… you are loved just the same. If you have a little money to spare, then contributing some of it to this cause will not only help Ava, but it will also help other children just like her in the near future.

What will you do if you come up short? Ava will have her chair (period).

What if there is an excess? Every dime donated will go to better the facilities that have been instrumental in Ava’s recovery. There is no plan to spend money that we don’t have, but suffice it to say that all of the money will be spent so that it will serve the betterment of many other children and families, not just the Lopez Family.

Is the donation tax-deductible? No. Unfortunately, time is important to us and has limited our ability to set up such an organization in a timely enough fashion that would allow the donation to be tax deductible.

Your prayers, acts of kindness, and encouragement have continued to sustain the Lopez family. Thank you again for continuing to be there for this most deserving family and for spreading the word “far and wide.” Keep passing the message along. Ava’s story continues to work in the most amazing ways and in the most unsuspected lives.

Ava, the party waits for you.

fw.

Preliminary ophthalmology results

The past few days were really good for Ava and the Lopez family. I had not mentioned everything over the past few days so let’s catch-up a little.

We have discussed Ava’s eyes and not being sure whether or not she is focusing on/tracking objects that are in her field of view. Given her occipital injury (the posterior part of the brain that is responsible for vision) this was a big question mark. That her eyes didn’t seem to be fixing on anything made it an even bigger question mark.

Ava had an ophthalmology exam last week (by the way, one of the questions on my ophthalmology rotation exam in medical school was “How do you spell Ophthalmology?” I'm telling you, med school was tough! It is O…P…H…T…H… In case you were interested). So at any rate the result of the exam was that she had no retinal or optic nerve atrophy. This was very reassuring because it gives her a good opportunity to rewire areas of her brain that may not be able to see. Everyone has a small blind spot on each retina. We never see it because the brain fills in the area with what our brain thinks should be there, the background pattern. The thought with Ava right now is that she has some blind spots and she is changing her direction of focus to try to see around the visual deficits that she currently has. As you can imagine this can be quite difficult. Your central area of vision is responsible for almost all of your visual acuity. Try looking at this “X” but read the words just two or three lines away from it. It is nearly impossible. Your central vision is critical, especially in a child that has all of her education ahead of her. Fortunately, she is young and her brain has a chance rewire and fix itself, better than ours would.

All in all, the ophthalmology appointment was reassuring. Ava still has a good chance of recovering what visual deficits that she has now. Weeks 4-6 after the injury tend to be the critical times for such recovery/injury. Last week was week 4. She will have another Ophthalmology exam this week and again next. This will give us more information.One of the more incredible developments has been the rapid improvement in muscle control of her head and neck. One week ago she had essentially no muscular neck tone. Today she went through a one hour long Physical Therapy session without needing any head or neck support. This is great for her and those caring for her and is one more box to check on her road to recovery.
Another box to check on our list is “eating.” Ava passed her swallow study earlier today. Yeah!!! Manny tells me that she went to town chowing on some pears, applesauce, mashed potatoes, peas and green beans earlier today. You would think that this girl hasn’t eaten in a month, the way she munched on those pears. Like Manny’s nose wouldn’t be enough to hold over the hungriest of babies. All kidding aside, I can only imagine how succulent pears would taste after not having eaten in a month.

She still has the feeding tube (which was switched to her left nostril to try to encourage her to grasp at it with her left hand) which will stay in place for the next several days to ensure that she will continue to tolerate solid foods well. She still has some difficulty swallowing thin liquids but this should improve as her tone increases.

So what is left?

Ava still has very little body tone and cannot sit up on her own, but 4 weeks ago she couldn’t breathe on her own. Three weeks ago she couldn’t move. Two weeks ago she couldn’t speak. One week ago she couldn’t hold her head up. Just imagine what amazing things she will be doing a month from now.

Please keep up the prayers and the Lopez encouragement. You all are doing a phenomenal job of helping this little girl recover.

Beatrice, your baby misses you… and so does Ava.

Ava, the party waits for you.fw.Tomorrow, I have a special favor to ask.

Pretrial hearing tomorrow

Housekeeping: Pretrial hearing tomorrow. 226th District Court in the Bexar County Court House at 300 Dolorosa. The court room is on the 2nd floor. If you are lost, then call District Court information at 335-2311/2011 (opens at 8am). Judge Sid Harley is presiding. The arraignment should occur between 8:30 and 9:00 am. It is intended for discovery of prosecutorial evidence. The accused may or may not be present. You are all welcomed and encouraged to come and show support and interest in this very important case. Bear in mind, this will not be like the drama of Law and Order. This is not the trial. This will likely be a quick proceeding and you may even miss it if you are not paying close attention. I mention this not to dissuade you from attending, but don’t want you to have too high of an expectation of what will be occurring tomorrow.

Beatrice's Devotion

Housekeeping: Kerri Thompson has opened up the June meal calendar for the Lopez family. Here is the necessary information: www.carecalendar.org

Calendar ID: 15804
Security Code: 9927

A quick Ava update: She continues to make small gains everyday and continues to gain slightly greater muscle control than days before. Most notably she is having more neck muscle control as is evidenced by how often she thrashes her head from side-to-side while lying down. As of yet she still does not have enough neck strength to hold her head upright, but this will come and we’ll be here to let you know when that happens.

Now, a much deserved, “thank you…”

A recurrent theme during this chronicle has been the heartache that a parent feels for their hurting child and at what lengths they would go to relieve them of that suffering. How easy it is to rationalize our own pain, but not the pain of our children. How easy it is to set aside your own interests for those of your children. How painful it is when you are unable to do it. How you ache internally with the realization that you must let them go, to travel their course alone.
There has been one person that has been hardly mentioned during the accounts that I have put on Caringbridge, that deserves special recognition for her efforts. She has been with Manny, Traci, Jack, Isa, and Ava every minute of every day since arriving in San Antonio in the early hours of 24Apr09… Manny’s mom, Beatrice.

Think of how difficult it would be in your own life if, without any advance warning, someone were to call you right now and say, “You need to be at the airport in one hour and you will be gone for the next month.” I know that in our own house it takes three days of preparation for a two day trip. Beatrice put her own life and work on hold in the few seconds that it took for her to be told of the trajedy that took place in her son’s family’s life. And I am certain that there was absolutely no hesitation in doing so.

Beatrice has been an unsung hero through much of this, burdening her own pain in silence. Many people who do not even know the Lopez family have been brought to tears by Ava’s story, and it is so easy for this to happen if all you do is think about a child that you love very dearly. Now imagine the pain if it really were that child. This is how it must be for her, yet she is often overlooked because her pain is “minimized” by the pain of Ava’s parents.

Beatrice has been there to help in whatever capacity she can… feeding, baths, bedtime routines, overnight stays in the hospital,… whatever… wherever… whenever.

There have been many contributors from both the Lopez and Southerington families, but tomorrow Beatrice returns to Los Angeles and leaving her son and his family. Tomorrow will likely bring a similar pain that she felt when first learning of this tragedy… an emptiness.
For those who are here in San Antonio please acknowledge her and let her know how much you care and appreciate her… and for those who will receive her again in Los Angeles… please acknowledge her and let her know how much you care and appreciate her. She deserves it more than any of the rest of us who are trying to lend support to this most deserving family.

Ava, the party waits for you.

fw

Scars from April 23rd

I would like to start this entry with an apology of sorts. Obviously, I am not with the Lopez’s every minute of every day and will miss some of the most touching moments that occur during Ava’s recovery, for that I apologize. Also, the writing works best for me if I just pick an emotion that I am having and go with it. This is what tonight’s entry is, and this is why I am apologizing. I wish that I could tell you that “She walked today!” but that hasn’t happened yet and I don’t have any further news of her recovery other than “SHE SPEAKS!” which should be enough to sustain us for awhile yet. You may even want to fire me after tonight’s entry because it may appear a bit melancholy. If you aren’t in the mood for it then you may want to wait for another entry.

Well, let’s get on with it.

A simple thing stood-out to me when we were visiting with Ava and Traci the other night, and my mind just wouldn’t let it go for some reason.

Last night I spoke of Traci getting out of the rocking chair so that Jennifer and Lilliana could hold Ava. Traci stood to the right of the head of Ava’s crib, while we stood and talked about a variety of things. Traci was wearing a form-fitting gray cotton pull-over shirt with half sleeves that came to the elbow. While we spoke, she would occasionally cross her arms and adjust the sleeve ever so slightly so that it would expose her elbows. Standing directly across from her it is nearly impossible not to notice her elbows… they are scraped and scarred from being thrown across her yard and into the fence or even concrete. They are a bright pink, like the color of red grapefruit. The linear streaks across her elbows are pitted on the right and remind me of the blood that dripped from it on the evening of the 23rd of April. There is a small divot that remains in the center of the skin on her right elbow that was a hole the size of a pencil eraser on the night of her injury. The “abrasion” was bad enough to bleed, but not so bad as to require cosmetic or functional repair. On the evening of the 23rd of April, this is one of the injuries that your eyes would have been drawn to, given the persistent slow bleed while she lay on the ER gurney. Maybe this is one of the reasons why my mind would not let it go the other night… I am reminded of it. But this is why I am talking about it.

The scars on her elbows are a reminder to Traci, and to those who know, of the way things are and the ways things could have been. The scars are a reminder to us of this healing process. They represent so many things. They represent the injury of the 23rd of April to the Lopez family and so many others. The fresh redness of them reminds us that while healing, the wounds (emotionally and physically) are still fresh and are occasionally tender. The scar represents to us that it is continuing to heal and that it is not yet finished. The scar will continue to remodel and strengthen the tissues that were once injured. The bright redness of it will slowly fade with time. The skin will not be so tender forever. It will soften and smooth as it heals itself. Eventually, she will even forget that they are there for brief moments of time, then longer and longer.

But unfortunately, or fortunately, being a scar… it will never fully go away. From my perspective this is fortunate. May it continue to serve as a reminder to Traci and to all those who glance upon it, of the preciousness and fragility of life. May we see them and give thanks, privately or publicly, that Ava is alive and for the treasures that you have been able to maintain in your own life.

I think of these scars on Traci’s elbows and think how proud she should be to bear them. While the rest of us require an intentional act to put on our Ava gear to show the world our support of her/them, Traci alone bears the physical scars. It is her mark. It is a symbol of strength, devotion, dedication,… and healing. May it be a reminder to all of us, and may she be proud of them.

Ava, the party waits for you.

fw.

Challenges

Tonight, let us talk Ava logistics.

As before, when you enter Ava’s room, there is a small entry way with a sink and vanity on your right. It is similar to a small hotel room in that you have to take a few steps in before it opens up into the rest of the room, only smaller. In Ava’s room, it opens to your right. There is a wooden rocking chair with a high back that is always hidden immediately behind the vanity (from the entrance) in the right corner of the room and right next to Ava’s hospital crib.

When we first entered the room on Tuesday evening, Traci was sitting in the rocking chair with Ava (at the end of this you will see some pictures on Lilliana’s slide show link of this very moment). Ava looks so big now, and it is further accentuated by Traci’s small frame. Logistically it can be sometimes difficult to transition from one position to another given Ava’s size and her very low/absent muscle tone and control of her head and extremities. As we have discussed before, in many respects she continues to function as if she is a newborn baby, requiring total care. It is often challenging enough to navigate tasks and positional changes with a newborn, but fortunately they are usually relatively light weight (10-15lbs, even aged a little) and small enough to cradle with one arm. As you will see with the slide show pictures, there is no way that you could cradle Ava with one arm, not to mention her weighing 25lbs.

When we (wiedenhoefers and Lilliana Story) were there the other night, Traci was wanting to get up from the rocking chair. It was obvious that it was not so logistically easy to do, which is only worsened by recovery from her own injuries. She was getting up so that Jennifer and Lilliana could sit and hold Ava. In helping with the transition to her bed a short while later, I could see how challenging this could be. It is one thing to watch someone do something… you know… “oh, I could do that.” Then you have to do it, and you think, “wow! That is a little more difficult than it looks!” This is how it is with moving Ava.

Firstly, you have to support her head/neck. Any person who has ever seen a baby knows this. Then the rest of the body… torso, arms, legs. Simple enough… when the baby is 20 inches long and weighs only 7 lbs! It is a whole different matter entirely when she is Ava’s size.

The thought process is something like this…“Okay, one hand behind the head.” Head goes forward. “Okay, maybe behind the neck.” Head goes back. “Okay, maybe somewhere in between.” Better. “Now, support her body… wow this kid is long…one hand behind her back…too low… too high… better… oh crap… what about her legs?... oh, my… there goes her arm… help!” Not that it is impossible, but this is no newborn, and I have held a lot of them. Fortunately she isn’t slippery, covered with amniotic fluid, vernix (that white cheesy stuff on a baby when it is born), and blood. Then it would be extremely difficult.

This is how things are. And this is how things are much of the day… baths, diaper changes, changing clothes, physical therapy, holding… a lot of holding.

I mention these things just to remind people of the little tasks of daily living that continue to go on and continue to present small challenges to this most wonderful family. It is not a plea for sympathy, as I know that the Lopez family is greatful to be where they are right now, but rather a reminder of how their life is different… at least for a while.

Here is the link to some great pictures that Lilliana took that evening…
www.liliannastoryslideshow.com/visitwithava
Ava, the party waits for you.
fw.

Ava spoke

I wrote the following last night and decided to wait to put it in until today…

It has been more than three weeks since Ava, Traci, and Isa were hit in their side yard. Ava is recovering slowly and with an unknown endpoint. I only mention it in such a fashion (with a pessimistic tone) because of the duration of time that it has been and the natural tendency to have emotional fluctuations and even a point of emotional exhaustion and frustration… but this is not what I have seen. Whenever you see Manny or Traci they are positive, upbeat, friendly, welcoming, encouraging, embracing, conversant, thankful, appreciative, and loving. You come to visit Ava and the atmosphere is similar to one that I have seen many times on the postpartum ward… a stream of revelers and well-wishers have come to join in the celebration. I am certainly not trying to imply that anyone is glad that this has happened, as much as it is that I am trying to convey the atmosphere in Ava’s hospital room. Whenever I have been over there, regardless of whom else is there visiting, the room has been filled with smiles, hugs, laughter, and pleasant conversation. And the more that I think about it, the more wonderful I think that it is. This is not a wake. We are not attending a funeral. Ava is alive and she improves with each passing day… this is and should be a celebration of life. And I think of Ava lying there, gradually registering her environment… gradually picking up and relearning the complicated social texture of the interactions and emotions around her… maybe not understanding the words but certainly understanding the tone of the emotions. Compassion… friendship… concern… love… laughter. If you were a fly-on-the-wall, then this is what you would see. If you were Ava, wouldn’t this be how you wanted the environment of your room to be? How could this positive energy be anything but helpful to her… to them… to all of us. As I write these words it makes me proud of all of you and makes me want to tell everyone else… “look at the great things that these people (you) are doing for this family!” You should be very proud because this loving environment has certainly served to prop up the Lopez family and allow them to continue to feed the positive energy that is felt when you enter that beautiful little girl’s room. I think how easy it would be to feel alone and losing hope without such support… but then there is you… writing, calling, visiting, sharing, hoping… spreading the word… praying…

While I do not feel so comfortable as to assume the emotions of Manny and Traci during such a difficult time, there is one thing that I truly feel that they would be in complete agreement with… that is… I know that if I were them, then I would say… “If I have done great things, then it is only because I have been lifted-up on the shoulders of giants… you.” Thank you for continuing to lift them up. You should be very proud of what you are doing for this very deserving family.

Ava… the party waits for you.

fw.

Then there was today…

Something occurred that I did not expect to happen for some time yet…

Manny was at the hospital by himself this morning, holding Ava. Part of Ava’s physical therapy is the equivalent to teasing. Give her a taste of her pacifier, then take it away from her. Leave it just out of her reach enough to have to try and get it… maybe just leaving it against her lips but not in her mouth… close enough that she knows that it is there but just centimeters away. Manny was doing a little “physical therapy” not letting her have her pacifier. She started to whine and whimper, even cry, then the unexpected… “Mama.” Then the “physical therapy” really started. “Say it again!... Say ‘Daddy.’”… “Dada.” AMAZING!!! There is just no better way to put it… AMAZING! AMAZING! AMAZING! And no one was there to witness it! Don’t worry it didn’t end there. Traci, Tina Frazier, Kym Pharris, Jeff Larkin and Manny were having lunch at the hospital together. Jeff was saying his goodbyes and had yet to hear her speak. Traci went to Ava and coached Ava, “Say bye-bye to Larkin.” Then… weakly…and slowly…“bye-bye.” AMAZING! AMAZING! AMAZING!

Ava continued to be coached, reiterating a variety of things… “Isa, Jack, Cali, peas (that’s please in baby speak).” AMAZING! AMAZING! AMAZING!

Jennifer called me crying this afternoon… “Ava spoke.” The visitor flood gates are sure to open now. I described a celebratory atmosphere in her room even before she spoke… it is gonna be Fiesta, Cinco de Mayo, the Chinese New Year, St Patrick’s Day, (and any other festive holiday that you want to include) all rolled-up into one. This is truly a day worth celebrating!!
We previously spoke of Traci’s heart melting when she got to hold Ava for the first time since her injury. I am sure that hearing Ava speak for the first time in more than three weeks made her heart fill with so much joy that she just wanted to erupt and yell down the hallway… “SHE SPOKE!!!”

Traci described this as “the best day of my life.”

AMAZING! AMAZING! AMAZING!

Ava, the party still waits for you, and thanks to today it is seeming a little closer now. Today we celebrate… tomorrow we forge ahead.

fw.

Ava's story continues to touch us all

I have continued to be impressed by the grace and indomitable spirit that the Lopez Family has continued to show through this strife. While there are many examples of this, one occurred during a conversation with Manny this evening.

We were talking of a friend of his and his wife that had come to visit with them earlier today. His friend had relayed information regarding Ava to another person who did not know the Lopez’s personally. He almost apologetically asked if that was okay, not knowing whether or not the Lopez family preferred for this to remain more private. Of course Manny’s reply was to spread the word… far and wide, but the message is not exactly what you would expect at first blush. It is deeper and more humanistic than “punishment for the offenders and preservation of life.” While these are certainly important messages to send, there is a deeper hope and desire that comes from Ava’s story…

Most of you probably do not even drink that often or that much. Most of you would probably never drive a vehicle if you were intoxicated or even had only one drink. So you are not where a life would be saved. This story doesn’t prevent you from doing anything that would result in the demise of another human being. This story is merely preaching to the choir… or is it?
Ava’s story has touched all of us. We have been more thoughtful and considerate of others. We have paused to take note of the precious lives that surround us, whether it is with our family, friends, neighbors, or even complete strangers. We have looked at our own children and thought how devastated our own lives would be if such a tragedy befell them and have tried to make them feel more loved as a result. We have come together as communities (including the on-line community) and have said, “we are here for you.” So maybe Ava’s story is saving lives in ways other than the mortality count… and passing her story along makes us all more humane and interconnected. Maybe Ava’s story will serve no purpose other than to make someone’s life better, if even just for a day. But isn’t that a worthwhile thing, too. Manny understands this. This is his hope… that Ava’s story touches the lives of others… and makes them better… however that may be.

Ava… the party waits for you.

fw.

Hungry for Daddy's nose

Ava has continued to shed some of the vestiges of her injury this week. Two major medical support devices remained. She has continued to wear a cervical spine collar, which given its small size looked downright adorable, but those of you who know Ava also know that Traci could dress her up in a potato sack, and she would still look adorable. The cervical collar was also pathetic, in that it reminds us of the tragedy that occurred on the evening of the 23rd of April, 2009, that should never have occurred. The cervical collar was placed two weeks ago to provide extra support to Ava’s neck due to a concern on the MRI that some of her neck ligaments were injured. She had further imaging studies done this week that allowed the doctors to feel comfortable in removing the C-collar.

A secondary benefit that the C-collar provided was supporting Ava’s head. (“Psst… Fred… I think that you just said that this is why she was wearing it in the first place.”) Let me explain… If you were in a car wreck, then you may have to wear a C-collar to prevent you from moving your head/neck in a way that could result in your paralysis; however, the muscles that control your head/neck still work fine. In Ava’s case she needed the C-collar to prevent injury to her spine; however, her neck muscles are not working so well and her head is floppy… like a newborn. The C-collar has provided support to her head, keeping it from being floppy when she is held. Not having this support may actually help with her rehabilitation some, given that she will now have to start using those muscles more.

The last major support medical device that she has is the nasogastric tube. The tube is about the diameter of the charging cord for your i-pod. Come-on. I know that you all have one and that it is probably right in front of you. It is even more similar to your charging cord given that it is almost a milky color, actually tan, given the tube feeds that are in it. The tube enters her right nostril and courses down into her stomach. The remainder of the tube is taped closely to her right cheek with a piece of very thin, clear tape. The tape is so thin that you cannot even tell that it is there unless you look very closely. It makes it appear as if the tubing is just stuck to the side of her face. The remainder of the tubing is often draped over her right ear and pillow and is connected to a bag hanging from an IV pole to the right of Ava’s bed. The bag is clear and contains a liquid that looks like a cappuccino.

When I was visiting with Ava yesterday, she would reach around the right side of her face with her right arm and catch the tubing, pulling it forward. Speaking from experience, it can be quite annoying having such a thing sticking out of your face and down your throat. Have you ever had a scratch in your throat? It is always there, irritating you, but you can do nothing about it. You swallow, hoping that it will rinse away, but it doesn’t. The swallow does nothing but make it ache more. Ugh!! The futility.

This device remains in order to feed Ava and keep her nourished. It will come out once she regains enough control of her pharynx (that area of your throat that is behind the uvula – the dangly thing in the back of your mouth). The pharynx is very important. Without ever having to think about it your pharynx/epiglottis is a very important sorting mechanism. It separates solids/liquids (sending them down the esophagus) from air. Sometimes people lose control of this function and their body doesn’t know when to close the airway and shunt solids/liquids down the esophagus. As you can imagine, this could be a very bad situation if your body is diverting food into your lungs, even just a little bit. Earlier this week Ava underwent a swallowing study to see how well her swallowing mechanism was working.

The swallowing study involves taking her to Radiology where a fluoroscopy study is done. This is a real-time x-ray where the doctors/speech pathologist will have her swallow liquids, crackers, etc that are coated with barium to see if they are going down the right way. They watch it real-time on a television screen right next to her. Ava did very well during the study, with everything going the right way, but at the end of the study a small amount went into her trachea and she didn’t cough. The fact that she didn’t cough is slightly problematic because if the feeding tube were discontinued and she aspirated her feeds, then possibly they wouldn’t know, because… she didn’t cough. They keep feeding, she keeps aspirating, no one knows… problem. As a result the feeding tube remained in place. Overall, the study was reassuring and will likely be repeated later this coming week. Given the strides that she is making, I hope and expect that the next time will be “normal” and the nasogastric tube will be out.

This is a necessary thing to get the feeding tube out for a variety of reasons, but also means that a new task will result… feeding. This task I am sure that Manny and Traci will be thankful to have, because it will be one more indicator of recovery. I also know that they have no shortage of people that would just love to sit with Ava and feed her. I am not quite so sure why mothers seem to love this task so much, but they do. I think that feeding is a continuation of nurturing/nourishing that is so endearing to mothers. Maybe the solitude and comfort of being with your child when they are so focused on you as their provider.

This reminds me... A few days ago Ava gave everyone a very good indicator of how ready she is to get rid of the nasogastric tube and have a Happy Meal. When I went to see the Lopez’s at the hospital yesterday, I noticed that Manny had a tiny red dot at the tip of his nose that looked very much like a pimple. As it turns out, he was holding Ava on Wednesday and was gently rubbing his cheek against hers, touching nose to nose, feeling the softness of her skin and lips with the tip of his nose… then CHOMP!!! Ava clamped down on the tip of his nose. The first solid food that she had had in weeks! While she may temporarily have many features similar to a newborn, she still has the teeth of an 18 month-old. One more indicator of recovery, and something that Manny is not soon to forget.

Ava has continued to make small gains everyday that are almost imperceptible to those that are closest to her, but are so very prominent to those who only see her occasionally. In our last entry regarding Ava’s recovery, we had discussed that she was kicking her legs, but was not very active with her arms. This has changed a lot during the past few days, now with seemingly purposeful movements. While she is not doing fine motor movements with her hands, such as picking up an object, she is using her arm to brush things away from her face and even used the back of her right hand to push her pacifier back into her mouth last night. These achievements may seem little but are very significant. It is like your newborn child making small coordinated movements. Each few days or so they are able to do some small task that they weren’t able to do before. This is thrilling as a parent for an otherwise healthy child that is expected to meet these milestones anyway. The “thrill” that the Lopez’s must feel with each fragment of a task that Ava re-accomplishes must be 10-fold greater… as it should be. These skills were taken from her… from them. Each one regained is a victory.

Fortunately for the Lopez’s, Ava’s recovery has been meteoric up to this point, but now we are in a rehabilitation phase. No one knows exactly what to expect, including the providers that are caring for Ava. There is no time frame for expectation of meeting certain milestones. This is indeed frustrating for everyone involved. It reminds me of being a child and the agonizing wait for those things that you so very much desired… Christmas, spring break, summer vacation, a party, etc. They seemed so far away. I knew exactly what they were like and couldn’t wait for them to come. I could picture the joy that I would feel when they finally arrived. But no amount of “wanting” would make it happen any sooner. This is how it is with Ava’s recovery, with one very unfortunate twist… no one knows the date that she will be considered “fully recovered.” The waiting would be so much more tolerable if we at least knew how long we had to wait. But not to worry, it will happen… and we will still be here. Ava… the party waits for you.

fw.

Lopez' heartfelt thank you

Dear Ava's Angels,

Over the past 3 weeks Ava has shown a miraculous ability to survive the horrific trauma that threatened to take her life. Our focus during this time has been solely placed on Ava, yet we realize that the reason that she has been doing so well is because of the prayers that all of you have been saying for her and our family. We have felt that we have been under water for the past 3 weeks and just now have come up for air. As I sit here next to a medically stable Ava late at night we have so many people to thank. There are so many that have been there for us that we prefer not to name anyone for fear of leaving someone out. Please understand that our family is eternally grateful to all of you that have supported us and prayed for Ava. The people include family, old friends, recent friends, and people who have never met us. Thank you to all of you that read this website on a daily basis and have provided such wonderful heartfelt comments.

Why a tragedy like this has to occur may never make sense to any of us, but it is our responsibility that some good come from this. Three weeks ago there was “a good chance” that Ava would not survive. Today she is well on her way to a hopefully full recovery. We know the recovery process will be long, but at least she is here to go through the process. There are many families that have been less fortunate. The story of Ava has touched thousands of people all over the country. Let’s use that power to support MADD and strengthen the consequences of reckless acts of drinking and driving. Locally we can contact our District Attorneys office as well as State Senators Wentworth and Van De Putte to let them know that this senseless act will not go unpunished and that we will not rest until justice is served. God and our family will eventually forgive the person that nearly killed three members of our family, but in a free society there are consequences for reckless acts.

On a lighter note, one person that must be named for their efforts is the primary author of this Caringbridge journal, Fred. For those that don’t know Fred, I’m sure you would like to know a bit about him. Fred and I met about 15 years ago in medical school. Fred was president of our class all 4 years which was no small accomplishment considering the strong personalities within a medical school class. Fred like Ava is a survivor. Fred was diagnosed with an advanced colon cancer almost 6 years ago. He underwent extensive therapy which he documented on his own Caringbridge site back then which I followed daily being moved by his ease of the written word as he described his struggles with the therapy. Fred, as you can imagine has an amazing family and incredible friends that supported him during his fight against cancer, just as Ava is supported by all of you. To give you an idea of Fred’s dedication to his family, Fred became an Ob/Gyn after medical school. Five years after completing his residency, Fred realized that his job was keeping him away from his family (wife Jennifer, two daughters Abbie and Sadie, and two sons Nathaniel and Evan). Instead of just saying oh well, Fred took the brave action to apply for a radiology residency here in San Antonio. So 10 years after graduating medical school, Fred is now a 2nd year resident in Radiology with 3 more years to go after this one. So keep in mind as you read his updates that he is writing them as he is being an amazing dad and enduring the daily grind of being a resident. Thank you Fred for being an incredible friend!


Lastly, this Friday May15th Col Joe Brennan is starting his 6-7 month deployment to Afghanistan to be the Head and Neck surgeon at Baghram Air Base. Please pray for Joe’s beautiful family as the deployments are always harder on those back at home, and pray that Joe has a safe return home.

God bless you all for all that you have done.

The Lopez family.In case you haven't had a chance to see the amazing slideshow that Lilianna Story put together, please take a look at the following link:

www.liliannastoryslideshow.com/avarally

Also, be sure to check the previous post for t-shirt and the MADD walk info.

"All for Ava" t-shirts

Hello dear friends,

MADD has graciously agreed to handle the "All for Ava" shirt orders from this point forward. Please e-mail Jessica Cullitan at jessica.cullitan@madd.org for shirts. She will need your name, address, phone number, e-mail address and the size/quantity of shirts you're interested in. Shirts come in Youth - Small, Medium, Large, as well as Adult - S, M, L, XL, XXL. Payment needs to be received by MADD before order is placed. Also, MADD will place the order when they reach approx 150-200 shirt orders. Please send payments to the local San Antonio MADD office at 110 Broadway, Ste. 442 San Antonio, TX 78205. If you live locally in San Antonio, we ask that you please pick up your shirt(s) from the address listed above once you have heard from MADD that they are in. MADD can be reached at 210-349-0200. If you live outside of San Antonio, MADD will make arrangements to get shirts mailed to you, but there may be an additional charge for shipping. If you placed an order through Jennifer Smith over the past couple of days, please check your e-mail to see how to proceed with your order. A picture of the shirt has been added to the Photos tab within Caring Bridge.

We can't thank you enough for your continued prayers and support. Continue to proudly wear your pink shirts and Ava buttons. Everytime someone asks what the shirt or button is for, keep sharing Ava's story. It could save someone's life. This is the least we can do for the Lopez family. Next time you sit down to pray for Ava and her recovery, please say a special prayer of strength and patience for Ava's family.

Don't forget that it is not too late to register for the Walk Like MADD event this coming Saturday, May 16th at Brackenridge Park. For more information, please see the previous journal entry. If you don't live in the San Antonio area, check out the website below to see when the MADD walk will take place in your area.

http://support.madd.org/site/PageServer?pagename=wp1_cities

I know we will all be anxiously awaiting Fred's return to hear more about Ava's baby steps towards recovery.

Take Care

Contact your elected officials

Housekeeping:

1. Please remember to contact the following elected officials to tell them that you are interested in the Ava Lopez hit and run case and that you feel that San Antonio needs to be sending a stronger message regarding this crime to serve as a deterent to others.

a. The District Attorney is Susan Reed, but the contact person for the DA’s office is Amanda Strickland at 210 335-2311.

b. Northside State Senators for San Antonio are Senator Jeff Wentworth (District 25 – Northcentral San Antonio at 210 826-7800), Senator Leticia Van De Putt (District 26 - Northwest San Antonio at 210 733-6604).

c. If you are in San Antonio and are not sure who is your state senator, then you can find your district at the Bexar County Elections Department website. A complete list of the elected officials for Bexar County can be found at http://www.bexar.org/elections/Electeds/electeds.html, complete with addresses and contact numbers.

2. There is much interest in the “All for Ava” t-shirts and Ava buttons. We are currently looking into a more efficient way of handling the ordering and distribution of these items. As you can imagine, Jennifer Smith is going to get crushed if she takes this on for herself (the receipt of checks, getting the shirts/buttons, and mailing them to people who are out-of-town, etc). For those of you who are local, contact Jennifer Smith, as mentioned in the previous journal entry for today. For those of you who are out-of-town and want t-shirts or buttons, please give us a few days to see what we can do before we annihilate Jennifer with this task. All the proceeds will be going to MADD under Ava’s name.

3. Many people have been wanting to send cards, etc to the Lopez family. We ask that if you desire to send something, that you mail it to The Lopez Family, c/o Kerri & Chad Thompson at 18414 Rogers Place, San Antonio, TX 78258.

4. Least importantly, I will be unavailable for a few days and likely won’t post another entry until Friday evening. Please keep offering up support to the Lopez’s via the guestbook. It has been hugely uplifting to their spirits.

Incrementally Ava continues to improve and the Lopez family continues to heal. As I entered Ava’s room this evening, Manny and his mom, Beatrice, were “relaxing” (if such a thing is possible when your baby is the patient) in the vinyl love seat that is positioned against the left wall of the room. Traci was standing over the foot of the crib taking pictures of her three children. Isa and Jack were standing on stools on opposite sides of Ava’s bed. Jack was on Ava’s left and Isa on her right. They were leaning on the sides of the bed next to Ava offering their best smiles for mom. A new “normal” develops.

As I walked into the room Manny saw my reflection through the mirror on the wall and offered up a “Freddd!” that was very reminiscent of “Norm!” on the sitcom Cheers. It was comforting to me and served as a barometer for what was happening in the Lopez’s world today. How natural it is seeming for all of them now. It is now possible to come and carry on relatively normal conversation, complete with laughter, without fear of upsetting the delicate balance of life and death. How fragile those times were and how far away they are starting to seem… thankfully.
Ava continues to increase her neurologic control every day. They are little gains, but gains nonetheless. Her eyes continue to be wide open and seemingly search around the room. She does not track yet, but has on a few occasions seemed to look at something that comes near her. Whether or not this is coincidence is uncertain. She has seemed to gain more control of her legs in recent days. She lays there just kicking away. Her legs were active nearly the entire time that I was there this evening. She seemed to be intentionally kicking at the stuffed animals at her feet. Her arms are another matter. She has been moving her arms some, but not nearly as much as her legs, especially her right arm. Manny and I spoke about this openly tonight. It is as if she is starting over again with these almost fetal-like movements. It appears to be the neurologic equivalent of a system reboot. It is; however, a little peculiar to me that she would regain leg control prior to arm control, but it all depends on which neurologic tracts were most injured. Maybe next time we will discuss DAI (Diffuse Axonal Injury), which Ava suffered as a result of the head impact (I chose this word combination intentionally as to not lessen the severity of the negligence that resulted in her being here).

But to me the most notable gain was that of a whimper. Ava has been completely silent since her initial injury without any vocalization of any kind. She is now starting to vocalize with little whimpers. They are not quite cries and are a long way from verbal communication, but this is where it starts… with a whimper. We believe in you Ava and know that you are coming back… 100%.

See you in a few days.

fw.

Join us in the "Walk Like MADD"

Hi all,

Due to the overwhelming response we had to the "All for Ava" t-shirts that were sold at the rally, we are going to put another order in for those who are interested. Ava's Uncle Tony was the mastermind behind the shirt design. I'm going to try to attach a photo of the shirts so you can appreciate how precious they are. The shirts are $10 with all proceeds going to MADD. If interested, please e-mail Jennifer Smith at jensmith@satx.rr.com with the size and quantity you're interested in. She will respond to you with further instructions on where to send the check. The deadline for ordering t-shirts will be end of day Friday, May 15th. Thanks for your support.

If you live in San Antonio, we'd like to encourage you to come out to Brackenridge Park this coming Saturday, May 16th at 9:00am to participate in the Walk like MADD event. Let's support Mothers Against Drunk Driving since they will be by the Lopez family's side for life. The "All for Ava" team has been formed so please join this team and look for the army of pink shirts when you arrive.

To join the team, please click on the following link or paste this link into your internet browser:

http://support.madd.org/site/PageServer?pagename=wp1_san_antonio

Click "Participate" --> "Join An Existing Team" --> Select the city "San Antonio" -->Type in "All for Ava" in the Team Name field and click "Search for a Team" --> Search results will appear and once you click on the All for Ava team, just follow the registration instructions.

We look forward to seeing you there!

Jack's day

Today was Jack’s day.

His dad returned to coaching the pitch & Tee baseball team today, and Jack played really well.
He learned how to ride a bike for the first time, and he was beaming… and so was his father.
Both of his parents got to give him good night kisses and good night hugs tonight. This was the first time that this has happened in more than two weeks. And tomorrow will be the first time that he and Isa will awake in the morning to have both of their parents in the house to give them good morning kisses and good morning hugs (Beatrice has hospital duty tonight).
I am glad that you had a good day Jack. You deserve it.

Happy Mother’s Day everyone. Happy Mother’s Day Traci. I am sure that this one will be very special.

Please leave this day to them and take this day for your own families.

fw.

Longing to hear your sweet voice, Ava...

Thank you to everyone who was at the rally last night, in person or in spirit. It was such a great event. Jennifer, Jennifer, Kerri, Marty and others… we are all very appreciative of your efforts. It was a great thing for Traci. It was a great thing for the Lopez family. It was great for all of us. Please remember to put pressure on your local politicians regarding this case. If by our efforts only one life is changed, then it is worth it.

Housekeeping: This Sunday is mother’s day. The Lopez’s would like for you to focus on your families this day and not concern yourselves with them. They are going to take the day for themselves as well. Code break: Let’s give them a day without phone calls or visitors. Don’t worry… food arrangements been taken care of by a neighbor of theirs. You can restart supportive efforts anew on Monday morning, because they are still needed. Great job everybody!!!

I am sure that many of you have heard in the news that it has been one year since the devastating earthquakes in China’s Sichuan province, where many thousands of people were killed and a region devastated. I was listening to a piece on NPR this evening on my way from my work hospital to Ava’s hospital. It was a radio segment of an artist who was recording the sounds of the rebuilding and putting it to music by incorporating the voices of some of the displaced children.

I am sure that many of you are now thinking… “where is he going with this, and what does it have to do with Ava or the rest of the Lopez’s?”

Well many, many children have been displaced from their homes (and from their parents) to be placed in “relocation schools.” Many of these children come from rural areas of the country and do not have ready access to regular communication with their parents. The recording artists came across a boy who sang to them a Chinese sonnet a cappella. The story of the sonnet is that of a child who is displaced from his mother, and he is unable to speak to her. So he sings to the moon and asks the moon (because he knows that his mother can also see the moon) to tell his mother that he loves her, because he is unable to do it himself. The artists took the recording and found his mother and played it for her. She broke down in tears at hearing it and replied, “I will always support you.”

I am sure that she cried for many reasons. She cried for the longing to see her son again. She cried knowing that he was alive and well. Previously, her pain was likely held back by the emotional restraint that we all exhibit much of the time. Hearing her son’s voice caused her emotions to flood (joy, sadness, desire, hope) and the tears became a sort of emotional spillway for her.

It struck me (listening to this piece) how similar Ava and Traci’s story is to this (and Manny, too). Here is this boy, who loves his mother dearly but is unable to communicate it to her and asks a medium (the moon) to convey his love because he is unable. He knows that they still share the moon, despite the distance that separates them. And then there is the tearful (for many reasons) mother who says, “I will always support you.” This statement implies so much… coming from a parent. It says, “I will freely, and without hesitation, give whatever I have, for you.”

Here is Ava, lying in a hospital bed, physically two feet from her mother and yet at the same time she is a thousand miles away and unable to give even the slightest gesture indicating that she is aware that Traci is with her. But Ava is there… and we all know it. And she is asking the moon, “please tell my mommy that I love her, because right now I am not able.” And there is Traci saying, “I will always support you.”


Arriving in Ava’s hospital room this evening was such a great way to end the week. She was wide awake and appeared to be just looking around the room. She still does not track objects, but her eyes are aligned. What does this mean? It is unclear what Ava is registering from her environment. She does not respond to visual stimuli. If you were lying still with your eyes open and something came into our field of view then your eyes would turn in its direction to focus on it and see what it is. Ava does not do that… yet, and consequently I am not sure what she registers or if she can even see. But there is the alignment. You know how when you are talking to someone and they totally glaze over (or maybe that is just when they are listening to me when I get a case of verbal diarrhea) you can see it in their eyes. They get kind of a “thousand yard stare,” like their two eyes are not even focusing on the same thing. People who are blind will often appear to be looking in opposite directions completely. They lose the visual cues that allow them to align their eyes so that they don’t have double vision. Prior to tonight, this is how Ava appeared to me… but tonight, her eyes were aligned. She looked like she was looking around the room. She still did not track on objects that were put in her line of sight, but this was better than two days ago, when I saw her last. And two days from now she will look even better… and two days more… and two days more… until, “do you remember when Ava was in the hospital and we were praying for her recovery? Wow, look at her now!”

Tonight I felt, “she is going to make a full recovery… 100%” And inside I smiled… and outside, too.

Ava's Road to Recovery begins at Christus Santa Rosa

Today was Ava’s first full day at Christa Santa Rosa Hospital, and she apparently had a full schedule… OT (Occupational Therapy), PT (Physical Therapy), Speech Therapy, and her favorite today… a bath. Manny told me that she had a good day and continues to do well. Thanks to those who included links in their guestbook entries to the news clips so that people could see her, as well as Manny and Traci.

The “All for Ava” Rally this evening was very powerful in so many ways…

Seeing so many people wearing pink, in support of Ava.

Seeing all of the children running around, reminding us of why this is so important.

Seeing the number of people that came from other communities to show support.

Seeing the kids with posters from their schools.

Seeing people who had come sharing, talking, hugging, crying… together.

Seeing the generosity of others, wanting to contribute to this cause.

Seeing the news media’s interest in this story.

Seeing the number of people who came together to make the rally happen.

But the most powerful things at the rally…Manny’s mom, Beatrice… Jack… Isa… and Traci.

Jennifer, Jennifer, Kerri, and Marty did a great job getting this together with the help of many, while I have been assigned only the most envious jobs. Tonight I had the pleasure of picking up Traci and escorting her to the rally. When we got into the car to go to the rally, she was quite apprehensive about going, about seeing Ava’s pictures, about seeing everyone, and about the media coverage and about them wanting to talk to her. I joked that she should just consider me her body guard, but “God help us if we actually need one.”

On the way to the clubhouse we discussed how to handle the media if they start asking about controversial things and had agreed upon a signal for us to intervene, if things started to get overwhelming. Fortunately, the signal was never needed.

As we walked up to the Roger’s Ranch clubhouse the blown-up pictures of Ava prior to, and after her injury were unavoidable. Traci started to cry and said that she wasn’t sure if she was ready for this, but after a minute or two, she reiterated what I have heard her say many times over the past weeks, “I can do this. I have to be strong for Ava,” and she was.

The environment was almost carnival like with the news crews and reporters. MADD getting petition signatures. The shirts, the buttons, the ribbons, the balloons, the music, the posters, the signs, the people… It was awe inspiring to watch you all talk and mingle and be a part of a community of concerned people.

Prior to the planned speeches, Traci spent some time with Melissa Montgomery (Manager of Victim Services for MADD). Melissa was very sympathetic and gave Traci a long hug upon their introduction to one another inside the clubhouse. I was struck by the discussion regarding impaired driving in San Antonio and the discussions that they have already had with candidates for high ranking office in San Antonio and the mounting pressure to be more strict with our current laws and development of new legislation, as a result of Ava’s case. Melissa, reiterated… “Ava will be a poster child for MADD. It is hard for a story to be any more compelling than an 18 month-old girl, her sister and her mother being hit by a drunk driver in their own yard.” AGREED!!! She told Traci, we are here for you and for Ava “for life.”

Jennifer (my wife) spoke saying some very kind words regarding her love for the Lopez family and the honor it is to her to be their friend. Jennifer also recognized Manny’s brother, Tony, for designing the shirt logo and for printing the CaringBridge entries every day and taking them to Manny and Traci to read. “Keep your support coming.”

A prayer was said by a Deacon from a local church and a passage was read.

Kerri Thompson gave me a very nice introduction and allowed me the opportunity to share my thoughts with you. The following is pretty close to what I said…

“Thank you: State senator Wentworth, District Attorney: Susan Reed, Melissa Montgomery: MADD, doctors and nurses of University Hospital, especially the Pediatric Intensive Care Unit, and the Rogers Ranch Community and all of you for coming to support the All of Ava rally.
Jack, Isa, Manny’s mother, Beatrice, and Traci Lopez.

Two weeks ago to the day, on the 23rd of April, a Hit-and-run drunk driver carelessly and irresponsibly left the roadway, jumping a sidewalk and hitting Traci Lopez, Isa Lopez, and 18 month-old Ava Lopez while they were in their side yard, enjoying time with each other. The psychological effects struck deep to the Lopez’s, the Rogers Ranch Community, and concerned parents across the United States.

The tragedy of this incident is apparent to all. On the evening of the 23rd of April my heart broke as I watched my friend of 15 years and neighbor try to breathe his own life into his 18 month-old daughter as he gave her mouth to mouth resuscitation. Consider the emotional agony.

My heart broke as I watched Traci Lopez weep uncontrollably for her daughter, despite her own injuries. My heart broke as I watched Isa and Jack Lopez watch in confusion as their sister was taken away and their parents were in a state that they have never seen before.

Ava Lopez was air-lifted to University Hospital were her injuries included a severe head trauma with a skull fracture and large amount of bleeding into her head. She also had multiple rib fractures, a pulmonary contusion, and an adrenal hemorrhage. Ava’s prognosis upon arrival to University Hospital was very poor and it was thought that she would not survive. Miraculously Ava has survived, and her body is healing well. Unfortunately Ava’s mental state remains in question. She does not respond to her environment or her parents. It is unclear whether Ava will ever progress beyond where she is right now, which is the equivalent of a newborn infant. However, our faith remains strong. And we have gathered here tonight to say that we believe in you Ava.

I have spoken at length with the Manny and Traci Lopez about this evening and the message that need to convey. Manny and Traci know that Ava represents all of our children. If this can happen while standing in your side yard, then it could have happened anywhere and to any of our children, any of our families. While we gather tonight to pray for Ava’s recovery and for the Lopez family, we also gather as a community from different communities because symbolically Ava is our child, and had this happened to any other child in any other community it would have been just as tragic. While it is emotionally painful to gather for this reason, just imagine if there had been a funeral instead.

This rally is to increase awareness of the safety of our children within our communities. Our families should be able to feel safe in our own yards and neighborhoods.

This rally is to bring attention not only to drunken driving or driving under the influence of other drugs. This rally is to call attention to the carelessness regarding driving that surrounds us in our own neighborhoods… speeding, running stop signs, failure to yield to school buses, driving while using the cell phone and any number of other driver distractions.

The communities in which we live are extensions of our homes. Our children, nor us, should live in fear of a driver, carelessly operating a 4000lbs vehicle. Operating a motor vehicle is a responsibility that we cannot take lightly. We all know who is going to pay the price when a 4000lbs vehicle going 30-40 miles per hour collides with a 25 lbs child, and her picture is right here.

Ava is a real child with real parents and they live in this very community… but it could have just as easily been your child. While the driver that hit Ava was intoxicated, it could have just as easily been texting on a cell phone, running a stop sign, etc.

This rally is to call attention to the numerous children who are injured or killed every year in such tragedies. If by our efforts, we only prevent one injury or save one life, then it will have been worth it. For that one life may be your own child.

May this rally serve as a reminder to all of us to be especially mindful of the responsibility that we bear as drivers.

Let this rally serve as a call to action within our own communities to be more aware of our children and their surroundings.

Let this be a call to action to push for stricter traffic control and enforcement n our communities.
Let this rally be used as an impetus to support MADD and similar organizations in their push for stricter drunk driving laws and enforcement to serve as a deterrent to others in an attempt to protect our families.

We are here tonight to let the Lopez family know that we are here for them and that we believe in Ava. We are here tonight to spread awareness of this issue and to make people think about their actions when deciding whether or not they are okay to drive and what they are doing while they drive. Please continue to wear your Ava buttons and t-shirts and spread the word about Ava’s story to bring awareness to this issue.”


At the beginning of the evening there was no expectation that Traci would speak tonight, but it was so moving that she did. It was inspiring to see her strength in the face of emotional adversity. What more powerful message than to hear Ava’s mother speak on behalf of her daughter? It was so great to see Traci address all of us because it told everyone that she was emotionally strong and gave us reassurance and comfort to see her strong and well. It allowed everyone an opportunity to share with her, to be with her, to be a part of her and her pain. I looked out into the audience while she was speaking and saw so many teary-eyed faces. I know that their hearts pained at the thought of having to live the hell that the Lopez’s have been through these past two weeks. It is so very important for us to feel that we are a part of this, and it is very important for you to realize that you are.

Afterward, I could see the relief in her face and the peace that being with all of you tonight brought her. She said afterward that she was really glad that she was there. While we did not have much opportunity to talk of it later, I am sure that it was emotionally cleansing to have an opportunity to thank you all personally and to be with so many people that love them and are praying and pulling for Ava every day.

I was glad for her tonight and proud of all of you for filling her with so much love and encouragement. After the speeches were finished, Traci had a “receiving line” that continued for the next hour and a half. She left exhausted, but was renewed. Thank you all for coming tonight and showing your support for the Lopez family.

Special thanks to Jennifer, Jennifer, Kerri, Marty, and others for organizing such a wonderful event for all of us. I am only sorry that it was for this reason. I am honored to be associated with you all.

“All for Ava”

fw.

"Two steps forward" day

Today was really a great day for Ava and the Lopez family! This was definitely a “two steps forward” day.

Ava did well last night and was transferred to an in-patient rehabilitation program at Christa Santa Rosa Hospital, in downtown San Antonio. She was transferred in the morning, with much of the day being devoted to “settling-in.” Afterall, this will be there home for the next 5-6 WEEKS!!! This is the duration of time that they were told to anticipate Ava being a patient there.

Despite the length of time, the two of them were on cloud nine today… well, floor nine (room 9212)… same difference. They were very relieved that Ava was well enough to leave the PICU and is beginning this long process called, “rehab.” Many of the medical issues that have been plaguing them over the past 1-2 weeks are behind them now (intracranial pressures, breathing issues, infection, elevated white count, seizures, muscular spasticity, vomiting, tube feed difficulties, low sodium levels, etc). The uncertainty of her fragile medical condition is now not so uncertain. Ava will survive. This has brought much relief to the Lopez family. Manny said this evening that today he felt his shoulders relax knowing that they are moving on to the next phase of her recovery.

As you get off of the elevator on the ninth floor, there is a panel of windows immediately to your right that look out the front of the hospital. The floor is brightly colored and the sunlight coming in through the window makes it seem that much brighter on the ward. The nurses station is to your left and is positioned in the center of the ward. Ava’s room is straight down a short hallway to the left of, and behind, the nurses station. Her room is about the second or third door on the right. When arriving in Ava’s new hospital home this evening, I felt like I was in a child’s bedroom, with a few small hospital type devices on the wall. As you come into the room there is a sink, counter and mirror to your right and an armoir against the left wall. The room is fairly small but big enough for Ava’s crib/hospital bed, a small vinyl love seat, a rocking chair, and a folded-up roll-away bed like you would get at a hotel. The opposite wall has a small ledge at about waist height that is loaded with stuffed animals and cards. On the right half of the opposite wall is a window that looks out, into the surrounding buildings. The walls are covered with posters supporting Ava with many, many signatures and words of support. Taped to the wall, near the ceiling there are childrens drawings taped side by side nearly circling the room. Soft, classical music plays on an i-pod in the opposite corner of the room.

As you come into her room you approach the foot of her bed from her left side. Ava’s hospital bed is like a tall crib with side rails that lower all the way to the bed level. 10-15 stuffed animals are at the foot of the bed. Two rosaries are pinned to Ava’s pillow. A silver one with crystal beads is pinned to her left and a plastic one with pink beads is pinned to her right. A photograph of Jack and Isa is taped facing Ava, above the stuffed animals at the foot of the bed. A single fluorescent ceiling light is above the bed. The brightness of the flourescent light is slightly muted by a light covering which shows the underside of three hot-air balloons in the sky. But the highlight of the room is Ava, of course.

When I walked in tonight she was “all dolled-up.” Her hair was up in pig tails. She was wearing a pink Disney princess pajama gown featuring Cinderella. Her eyes were wide open! They would occasionally start to drift downward and her eyelids would start to close, then she would force them open again, to start the process all over, like a small child that is fighting sleep. It is still unclear what she is registering, and she is still not tracking objects or people, but she looked great! Consequently, Manny and Traci also looked great. Manny and Traci gave an interview today with Karen Grace that aired on the local 10pm news. Rather… I should say Traci gave an interview tonight. They showed several clips of Ava, as described above. Search for it on the internet. If anyone finds it, then please post an entry into the guestbook for everyone else to check it out. She looks so cute!! I mean it!! Sorry, but it is just after midnight now and I have to get up in less than 6 hours so if someone could find the link, then we would all be greatful. Assuming that there is one, of course.

Jennifer Wiedenhoefer, Jennifer Smith, Kerri Thompson, and Marty Harkleroad (with the help of many others) have worked very diligently to organize an “All for Ava” Rally for today, Thursday, May 07, 2009 at about 6:30pm at the Rogers Ranch Clubhouse. Please come and show your support for Ava and concern for children everywhere that continued to be injured by drunk drivers and other carelessly driving people.

As always, Manny and Traci, and their families are so very, very, very appreciative of the support that you have given them. They have said many times that they have been overcome by your love and generosity and have been brought to tears because of it. Please keep them and Ava in your prayers. She continues to have a long way to go and your prayers and support will help get her there.

fw.

Tough road to rehab ahead

Ava’s body continues to heal, thanks to your prayers and support for her. She was taken off of the oxygen entirely today and was breathing only room air with a little “blow-by” oxygen (This is just where they let oxygen blow into the air near her face). She tolerated this very well. Her white blood cell count has continued to come down. It isn’t quite normal yet, but has improved a lot and should continue to do so. Her biggest problem over the past day or two was her intestines not working too well. Today she continued to poop, which is good. She was also taken back up to full tube feeds. If she does well tonight, then she should be ready for transfer from the Pediatric Intensive Care unit tomorrow to an inpatient rehabilitation program at Christa Santa Rosa Hospital. AMAZING!!!! Thank you for your prayers.

Now… we have briefly discussed this before… 1. “72 hour window”. Check. 2. Extubation/Off the ventilator. Check. 3. Discharge from the PICU. Check. Ava will have met all discharge criterion to get out of the PICU. It is possible for her to breathe, be nourished (through a feeding tube through her nose), and get rid of waste products (pee and poop). Check… However, the road to recovery will be long and rehabilitation will not be easy. Today she should be transferred to an in-patient program focusing on her rehabilitation. She will likely be there for a few weeks, maybe longer, before being able to come home.

It remains unclear what Ava is registering from her environment. While the broken parts of her body have continued to heal, Ava’s personality is yet to be revealed to us. It is very important that we remember to keep the Lopez family in our prayers and continue to offer aid where we can. When she finally does come home, caring for Ava in the hospital will be different than caring for Ava out of the hospital. The hospital environment, especially the PICU, is geared for support. No one knows what the pace of her recovery will be, and it may be slower than her meteoric physical recovery from 23Apr09. If this happens to be the case, then things have the possibility of becoming emotionally difficult for the Lopez’s. Without our continued support it would be even more difficult. Care for Ava could potentially be like caring for a 25 pound newborn. What were once “simple” tasks with an 18 month-old (e.g. bathing, feeding, changing clothes, etc) will become much more challenging. This may be compounded by the fact that there are still two other young children at home.

I suspect that one of the reasons that so many are following Ava’s progress is because they have an “Ava” in their life, somewhere. They know that if the Lopez family was disrupted while picking up grass clippings in their side yard (about the safest place that they could be), then we are all at risk of having our own lives “disrupted.” The news reports could have just as easily been about any child you know, and it would have been equally tragic.

Please know that I am not trying to be a pessimist, but I am very concerned that many of the people who are following this journal will see “Ava was discharged from the PICU!!” and think, “all is well, time to return to our normal lives.” While a degree of normalcy must return for everyone, including the Lopez family, we must remember that “normal” for them will not be “normal,” at least not for a while. These people are our friends, and they will need us. The process of grieving and adjusting to this horrifying incident has not yet run its course. I suspect that while the Lopez’s are elated that they have come so far, there will be times that they reflect on what has been taken from them. Those days will not be so joyous, and someone needs to be there to walk with them.

It reminds me of a religious story… A man dies. He has the opportunity to look at his course in life as footprints on the beach. One set were his, another set belonged to Jesus. The man noticed that during the most difficult times in his life there was only one set of footprints on the beach. He inquired… “why would you leave me during such difficult times?” The reply, “I would never leave you. It was during those times that I carried you.” I do not want to come across as being overly mellow-dramatic, but I think of the Lopez’s and can’t help but to interject my own life into their circumstances and think of the loneliness and sorrow that I would feel from time to time… will feel… from time to time.

I have seen the most amazing good spring up from you. People from far and wide have identified with the Lopez family tragedy and have offered the most incredible love and support. I have been inspired and my life enriched because of your generosity and goodness. Let us remember that their need for support does not end tomorrow.
We must not forget. We cannot forget.

fw.

Join us for the All for Ava Rally

All for Ava Rally

Thursday, May 7th 2009

6:30pm

Rogers Ranch Crosstimber Clubhouse (Adjacent to the pool)

*** Come support Ava's fight for life ***

Sweet Ava t-shirts and buttons will be available for purchase. A donation on Ava's behalf will be made to the M.A.D.D. organization

Due to limited parking, we encourage residents of Rogers Ranch to walk or car pool to this event. The Lopez family can't thank you enough for your continued love and support.

Manny goes home

Today’s entry will be short.

Ava continues to make small gains regarding her breathing and overall recovery. Her tube feeds were stopped for a little while but restarted again after she had two bowel movements today. Yeah, Ava! Who would have thought that such a basic bodily function would be such a triumph? Well, it is today! The plan is to get her to an in-patient rehabilitation facility later this week.
Traci is spending the night with Ava at the hospital, and Manny is spending his first night at home since Ava was injured on 23Apr09.

Go Lopez’s!!!!

fw.

Ava's distended belly...needs some relief

What a difference a day makes. Seeing Ava this evening was great! She looked great!
Today didn’t start great, but it ended well. Manny told me that her belly was looking distended this morning, and she looked uncomfortable. Her pulse and blood pressure were also elevated, and her belly was tympanic. Tympany is the hollow reverberation that a drum has when you hit it, but duller, kind of like thumping a watermelon. When the abdomen (stomach/intestines) fill with air to the point that the abdominal wall is tense, then tympany results. You tap on the belly and it makes a kind of hollow sound. This can be worrisome because it usually means that the patient has a bowel obstruction or an ileus.

What is the difference? A bowel obstruction is usually mechanical, meaning that something is blocking it. It may be twisted (volvulus), stuffed inside of itself (intussusception), pushed through an area that it isn’t supposed to go through (hernia), or be pinched from the outside (scar tissue or adhesions). There are some other causes also, but less likely. As it is, she doesn’t have any good reason for having a mechanical obstruction. An ileus; however, is just where the intestines aren’t working very well for a little while. It is like they are asleep and are having a hard time waking up. The intestines need to be awake for anything to get through; otherwise, it just keeps building up until it comes back up the direction that it came in. That is what happened early this morning when Ava threw-up on Manny. It looked like used “coffee-grounds.”

When medical people hear “coffee-ground emesis (vomiting)” it means one thing… blood is in the stomach and the stomach acid is making it look like coffee grounds. This is most likely because of her ICU hospitalization. It is common for patients to get a gastritis (gastro – stomach; itis – inflammation) or inflammation of the stomach with resultant bleeding. She was started on medicines today to minimize this problem, and they generally work well.

Despite her vomiting, her abdomen was still distended and her pulse and blood pressure remained high. A tube was put down her throat and into her stomach to suction things out. They removed a lot of air and fluid and immediately her distention went down and her vital signs improved… Oh… and Manny felt a lot better, too! This happened one other time in the day, with the same treatment and same result… and Manny felt a lot better.

The extra air is likely related to the oxygen that she is still getting by nasal canula. Invariably some of that air will be swallow and build up in her stomach, especially with an ileus.

Now all of this does have an unwanted side-effect. Her discharge from the hospital may be delayed. Because of the ileus, she can’t take full tube feeds and intravenous fluids needed to be restarted. She won’t be discharged from the hospital if she still needs IV fluids and won’t be discharged from the hospital if she can’t be fed properly (via the nasogastric tube).

Her breathing is better. She still drops her oxygen saturations some, but not as deep and not as long. She still needs oxygen but not as much. These are all good things.

One other problem arose today… her white blood cell count (which is an indicator of infection) was pretty high today, over 26,000. That is pretty high. It is usually between about 4,000 and 10,000. They removed the big IV in her groin/leg today because that could be a source of infection causing her high white count. She doesn’t look infected otherwise, and doesn’t have a fever, so hopefully this will help get her white count back down. Unfortunately, they still needed an IV to give her medicine and fluids and had a difficult time getting IV access. They eventually ended up putting on in her foot. It is working and that is what matters.

As for her neurologic status, she is looking much better. The spasticity that I have described in prior entries is improving. Her arms and legs are much more relaxed. Tonight she looked like a sleeping child, complete with an occasional yawn! It was great seeing her look so good.
Manny and Traci are also looking good. You can see their tensions start to fade. It is a wonderful thing!

I was again instructed to pass along how indebted they feel to all of you for your support, compassion, and love. They truly believe that Ava would not be doing so well if it was not for your prayers and love. They have been reading your guestbook entries which have continued to rejuvenate their spirit and determination. They feeled blessed to be able to call you “friend.” Much appreciation and affection.

Please continue your prayers and efforts. Ava is not running down the sidewalk yet.

fw.

Recovering from the pneumonia

I mentioned yesterday that last night was an important test for Ava, given that this was her first night without the ventilator. That she remains off of the ventilator is certainly a good sign, but last night was not wholly uneventful. Manny sleeps in her room with her in a heavily vinyled hospital chair that converts into a single person bed. It is positioned directly to her right with only enough room between vinyl bed and her hospital bed to put his feet down and stand up to help her.

While she is no longer on the ventilator, she is still recovering from the pneumonia and the pulmonary contusion (big lung bruise), not to mention several broken ribs. These things have caused her to have some thick lung secretions. While she was on the ventilator she required frequent suctioning. Frankly it was a little easier then. The endotracheal tube goes directly to her lungs. The tubing connected to the ET (endotracheal) tube has a long, thin tube attached to the end of it. In a way it is like a retractable antenna. Most of the time it is fully withdrawn from the ET tube. When Ava needs suctioning then they just attach the suction to it and push it forward and into the endotracheal tube, and hence, into the lungs, where the secretions are. It will clear some of the secretions out and allow her to breathe a little easier for a while.

Eventhough the ET tube has been removed, the pulmonary problems have not completely resolved and consequently she still needs frequent suctioning. This is compounded by the fact that Ava does not have cough mechanism to clear the secretions (I don’t fully understand why). If you or I had some gunk in our lung we would give a good cough and hack it up. Ava is unable to do this currently.

Through the night last night, Manny described hearing her breathe with a deep, coarse, raspy sound that he could hear from any location in the room. Her oxygen saturation should be in the high 90% range, essentially all of the time, but last night was dropping into the low 80% range fairly frequently, and that was with oxygen supplementation with a nasal canula (small tube that blow oxygen into your nostrils). Not that it is extremely harmful to drop in the low 90s or 80s for a short period of time (minutes), but it isn’t “normal.” And she needs to be “normal” before she will be released from the hospital. The concern for Manny last night was that if she continued to drop her oxygen saturations, then she would need to be put back on the ventilator, which would require reintubation. Remember… “the only thing worse than being intubated once is being intubated twice.” This was Manny’s concern. Fortunately it wasn’t required.
Without the endotracheal tube in place, you take a long segment of suction tubing (which for her is about the diameter of a stir straw) and push it through one nostril and into the back of the nasal cavity. You keep pushing until you have put enough in to reach into the lungs. You don’t really know if you are in the lungs until you apply suction and see what you get. Of course when you apply suction it is like trying to breathe with a vacuum over your mouth, because the suction is pulling all of the air out, too. This process is repeated over and over until you feel that you have satisfactorily removed enough gunk to allow them to breathe better.

The suction canister for the secretions is mounted to a wall suction device. The canister is clear with markings on the side to allow for measurement and generally holds about one liter. Manny described to me that her early morning secretions were very thick and looked like old blood (brownish). Her later secretions were thinner but still… (Manny searched for the word to describe it, glancing around the room a little bit as if he was going to find the word that he was looking for written on the wall) “…here,” as he pointed to the suction canister mounted to the wall. My reply…”dude, that is gross. It looks like dip spit.” It even had the little frothy layer on the top and the chunky stuff on the bottom. Manny was a little concerned that the women reading this wouldn’t know what that looked like, but I said, “Manny, most of these women are from Texas. They know what dip spit looks like.” Needless to say, if they were suctioning that out of her lungs, no wonder she wasn’t oxygenating well.

Most of her day was actually quite peaceful. She was oxygenating well with intermittent suctioning and only small oxygen requirement by the nasal canula. He described to me how peaceful she was when Traci was lying in the hospital bed with her today. She seemed to settle herself much better when Traci was lying beside her. I am sure there was the familiarity of Traci’s scent, the melody of her voice, the warmth of her body. So interesting how soothing these things must be to her. I was told that the only time during the afternoon that Ava seemed to have more difficulty was when Traci got out of the bed to leave.

At the hospital this evening, the thing that struck me was how natural and routine “this life” is becoming to them. Their anxiety about the survival of their daughter has been replaced with the routine of her care. Positioning her, suctioning her, stretching her arms/legs, changing her diapers, tube feeds, etc. This is becoming their new life. Manny talked with the nurse (calling her by her first name) about suctioning and the raspiness of her breathing like it was just the routine of the day. They were colleagues caring for Ava. It struck me that this is their new life and could possibly be this way for some time to come, and while I am hopeful and expecting that she will continue along her recovery, it is at least possible that she could grow into an adult child, still requiring the same level of care.

I mentioned the ease at which he addresses these issues and cares for Ava now. He replied that this is Ava now and it feels natural, almost like this is how it has always been. “I almost don’t even recognize that Ava anymore,” pointing to a photograph taped to the wall of an active and lively 18 month-old girl with brown hair and big eyes.

We spoke of the lifetime that has been lived in the past nine days. If ten days ago, you would have told them what “their new life” was going to be on 02May09, the reply would have been a laugh… “No way! You’re crazy.” I spoke at a cancer event this evening (Relay for Life) and related that “right now, somewhere in America there is a person driving down the road and thinking about their distant future life… Where they will be, what they will have, what they will be doing, et cetera… and 10 seconds from now a driver is going to vere into their lane, and in a fraction of a second their life is totally different than the 20 or 30 years that they were mentally planning out just seconds before.” I have recounted such an example to other people, for other circumstances… I just never truly thought that one of my dear friends would be the example.
Now don’t fire me just yet. I am very optimistic regarding Ava’s recovery, and I fully expect to watch her grow up like every other kid in the neighborhood, but for a while their life will be different than what it was just 10 days ago.

“Their life will be different.”

“Their life” will be different.

“Their life.” As Jennifer and I were driving Traci back to her house tonight we spoke of “their life.” Jack and Isa. Manny and Traci both mentioned how they are seeing definite signs that Jack, in particular, is having some difficulties with this transition to a “new life.” He is too young to be able to even think about the verbal construct required to explain his emotions. I am sure that without his conscious awareness of it, his thoughts must be “what happened to my sister? What happened to my parents? What happened to my life?”

We candidly discussed that no degree of community involvement can replace the normalcy of having his family unit intact. I am sorry for you, Jack and Isa. You hurt too, and you probably don’t even know that that is what it is… hurt.

I know that things will either restore themselves to the way they were, or they too will acclimate to their “new life,” but it doesn’t make it fair… It doesn’t make it right.

Please keep them in your prayers.

fw.