Angel Wings

This past weekend, I went to Snyder to have a garage sale at my Mom and Step-Dad's house. I had so many friends donate items for us to sale; it was to raise money for our upcoming trip to Baylor. Once I got to Snyder, I started checking my Facebook. I was seeing so many posts from my Lubbock friends, asking for prayers for a little boy named Andrew. Andrew saw the same pediatric Cardiologist that Eli sees. One post in particular read, "Please pray for a fellow heart mom. Her son Andrew is in kidney failure and desperately needs a miracle!". After this one, I saw many more posts from many more people, asking for prayers for Andrew. I caught myself several times throughout Friday thinking of Andrew; and I would stop and pray. Later in the day, there was a new post from another friend; "Labs have about doubled...not looking good. We are home and plan on staying here. Please pray for me and our family and that I find the strength to get through. This is the most painful thing ever. Dr. R is saying maybe 6-12 hours maybe 24. Please pray.". I read this and, again, stopped to pray.

Friday night, I was exhausted. We had lots of prep work for the garage sale and I was just worn out. Since Adam stayed in Lubbock, Eli and I shared a bed Friday night. As tired as I was, I just couldn't sleep. Eli snored all night and took up most of the bed. But this is not what kept me up; I laid in bed, next to my own snoring little miracle, and thought to myself, "What would I ever do if I was told he only had 'maybe 6-12 hours maybe 24'? How would I handle this? And how would I spend those last precious few hours?". I thought about Andrew and his family all night. What were they doing at that very moment? Laying in bed with their little boy, holding him, crying, telling stories and just talking? And of course.... praying with every breath.

Through Eli's snoring, grinding teeth and tossing and turning, I held Eli. I shed a few tears. I prayed for Andrew and his family. I thanked God for every precious moment I had with Eli. Finally, I think I dozed off around 4:30 am, only to wake up again at 6:00 am. I said another prayer for Andrew and rolled out of bed. It was time to get up and get ready for the garage sale. We opened at 8:00 am. But by 6:30, cars were already driving by and by 7:00, we were hit by a flood of people. It was a crazy morning, going non-stop for the next 6 hours or so. But, at one point during the morning, I finally had a chance to check Facebook. The first post I saw dropped my heart and brought tears to my eyes: "Andrew earned his wings around 6:08am. He is w/ our Lord and no longer in pain!"

I think I was probably in shock for several minutes. This little boy, that I didn't even know, had me in tears and thanking God for Eli. It is nice to remember some times that things could be much worse; but to be reminded of this due to the loss of life of a precious little child.... It just didn't seem fair.

I called Adam later that afternoon and gave him the latest update on Andrew. And then I told him how lucky we were that Eli was still as healthy as he is. Adam agreed, as crappy as things have been, we're blessed.

I want to encourage everyone to take a look at your life. Thank God for your blessings. And pray for those who may be struggling and hurting; whether you know them or not. No matter how bad things may be, someone else may be hurting far worse. And please, say a prayer for comfort for Andrew's family.

All Hooked Up

Last weekend, one of our friends, Nikole, was over at the house. She was there early enough that Eli was still asleep and hooked up to his feeding tube. As Eli woke up and Adam began to un-hook him from his pump, Nikole walked into the bedroom where Eli was. She watched Adam un-hook Eli, then she came to me, somewhat in shock, and said she had no idea that that is what we meant by saying Eli was "hooked up". She suggested that I write a blog with pictures about what "hooked up" really means. In thinking about it, I realized, "Well, before Eli, I didn't know what any of this looked like, so how would anyone else know?" So.... here is what is involved in getting Eli hooked up at night and ready for bed!

This is the formula and medication that goes into Eli's tube every night. The PediaSure 1.5 has 350 calories per can. The white packet is a laxative. Since Eli's diet is about 90% dairy, it really does a number on his stomach; the laxative makes it a bit easier on him. The bottle and syringe is an antibiotic. Eli's not always on this, but he's on some sort of antibiotic more often than not. For now, he's on a 14-day round, 3 times a day, of this antibiotic. Unless it is red, Eli won't usually even try to take medicine orally. So we usually just put it through his tube.

This is the bag that the formula and laxative or poured into. The tube from the bag is then run through the pump. We prime the formula through the tube so no air is in it, then set it to run. At the time, Eli receives 43 CCs an hour for 10 hours for a total of 430 CCs a night.

This is the connector that plugs into Eli's port. You have to apply a little bit of pressure, but it snaps into Eli's button, then twists to lock.

These are two pictures of Eli's button: one with it closed and one with it open, ready to be connected.



This is the tube hooked into Eli's button.

Then, we put the antibiotic in through the side-port on Eli's tube.

Then, Eli's all hooked up and ready to go to bed. The pump will run for 10 continuous hours throughout the night. We have to be sure to put another round of antibiotics in the tube before it is done so it will have plenty of time to run through. This is a picture of him about to fall asleep, all hooked up, and snuggling with his special Tubie Friend.

And finally, this is how we give him meds mid-day. Since his antibiotic that he is currently on needs to be taken 3 times a day, we give it at night, in the morning, then half way through the day. We hook Eli up to a shorter tube, prime it with purified water, put a syringe of water on top and put the medicine syringe through the side port. We push in the antibiotic, then let the water run through to flush all the medicine in. The worst part of doing this is that you often risk Eli coughing. If he coughs while the tube is hooked up, then everything in his stomach (formula, medicine, milk, yogurt, juice, or whatever it may be) comes back up, through the tube, and into the big syringe. No only is this disgusting, but it is also not healthy because it can lead to infection or the tube being clogged. So you cross your fingers, hoping this doesn't happen, but it has already happened to me 3 time in the past week.

So, there it is: The process of getting Eli all hooked up at night! It's a long process, but it's what keeps him healthy!

Wow.... I just don't know what else to say.

http://gma.yahoo.com/k-e-diet-brides-using-feeding-tubes-rapidly-080053646--abc-news-health.html

The above link is to a story on Yahoo News concerning women (particularly brides-to-be) getting NG-tubes inserted into their noses as a form of weight loss in preparation for their upcoming wedding. There was also a segment with Kathy Lee Gifford and Hoda. I am absolutely shocked and appalled at the total lack of disregard for those who use a feeding tube to save their lives. As a parent of a child with a feeding tube, I have defending my son and my parenting numerous times. I can't tell you how many people think it is simply for convenience or out of laziness and bad parenting. I can't describe the looks we get from people or how it makes us feel to see them point and stare as they whisper. If it wasn't for Eli's feeding tube, I can't imagine what his quality of life would be like right now... or if he would even be alive without it.

To see these stories about women doing this because of their own vanity.... I just can't even find the words. It's like many other mothers have said, "Thanks for making it even more difficult to justify our children having feeding tubes." This is NOT a weight loss tactic. This is not for convenience. This is to SAVE OUR CHILDREN'S LIVES! This is how they get nourishment and medication.

To joke about a bride having to carry around a bag with formula pr worry about getting it pulled out during their sleep; these are real concerns! Every time Eli whimpers in his sleep or cries out in pain, we rush in to make sure that his tube hasn't been jerked out or it's not wrapped around his neck (which is often the case). You worry about getting the phone call from day care that his button was ripped out while playing. You worry about the constant threat of infection due to basically an open port into his stomach. How dare these brides make this life-saving choice for our children into something that truly is about laziness and convenience. They should be ashamed of themselves.

This is a picture of Eli the day he received his Tubie Friend. It is a bear, made just for him, with a matching feeding tube. Eli saw it and said, "Oh! His belly is just like me!"

Preparing for Baylor....

Since getting the news several weeks ago that Eli WILL be getting into Our Children's House at Baylor, there has been so much going on! We've still had some back-and-forth.... When we were told a couple of months ago that Baylor would not accept Eli's insurance, they shredded the referral/prescription from Eli's pediatrician. So when Baylor and CHIP came to an agreement, Baylor said our pediatrician would need to re-do the referral. So... our pediatrician called Baylor again to do the prescription. Once she finished the automated referral portion and was able to speak to someone, they told her, "Sorry. We don't take his insurance." OH, THE CONFUSION!!! Luckily, it was all a HUGE misunderstanding and they ARE still taking his insurance and we ARE still going to Baylor. The evaluation is scheduled for May 18. They have told us that all the slots for June are full, so we will probably be July before Eli actually gets into the program.

On top of making sure that the whole insurance issue is straightened out and completing all our paperwork (all 30 pages of it), we've been doing a lot of talking and praying about how exactly to handle the actual treatment part of Our Children's House. As a woman, my first thought was, "How in the world do I pack myself AND a 3 year old for a 2-month stay away from home?!" I still don't know how to manage the packing part, but it didn't take long for more pressing matters to take over my mind. Soon, the questions that were filling our minds included, "How do we manage the financial side of me not working, having financial responsibility here at home that my income usually covers, unexpected financial costs while living away from home for 2 months, PLUS getting Adam to Baylor as much as possible on the weekends?" It was pretty daunting, honestly.

As I said, we've been doing a LOT of praying. I told Adam the other day that I think the last time I spent this much time in prayer was the morning my Dad passed away. We did a lot of praying then, but I think we may have surpassed it by now. With all the praying we've been doing, God has been responding! We have been blessed with many ideas for fundraising, as well as many people, from family to friends, acquaintances and total strangers. A good friend of ours, Dee, told us that at some times, you just need to swallow your pride and ask for help. Dee made a good point. You see, Dee is a Shriner. He told us, "I don't drive around in my little go-cart for either of y'all." Then he pointed to Eli and said, "I do it for these kids." So, as hard as it may be, Adam and I are swallowing our pride and putting our hearts out there for everyone to see.

All of you have been reading my blog and we couldn't be more appreciative of all the kind words and prayers that have been passed our way. First off, we want to thank you for all of that and ask that you please continue to lift us, especially Eli up in prayer.

As I said earlier, our wheels have been turning, trying to find ideas of how to make it through the financial burden of Baylor. So here is what we have come up with....
     1. A Raffle - We are hoping to start selling raffle tickets soon. As I said, we've been blessed with so many people stepping forward to offer help and support. We have had gift cards and several items donated to raffle off, including a custom made twin-on-twin solid wood bunk bed, a Scentsy gift basket, gift cards to several restaurants, gift cards for massages, and a tool set. Once we finalize things with this and have all items "in hand", we will begin selling those raffle tickets.
     2. A Benefit Dinner - We are in the works of planning a benefit dinner. We're thinking brisket and all the fixin's. We'll sell tickets ahead of time for this and do the drawing for the raffles at the dinner. We will also have a banner, recognizing all those who donated to the raffle and helped us through this process. We will also have a "Donor Table" set up under the banner. Because we so greatly appreciate all the donations and support, this will be an area for those who donated to put business cards, fliers, or any other information. They have helped us tremendously and we want to help and support them. If this table can help in any way to get their names/businesses out there, we're more than happy to do that for them!
     3. A Charity Golf Tournament - Our good friend, Brent, is part owner of Melt here in Lubbock. Melt started a charity golf scramble last year with all proceeds benefiting a charity of their choice. This year, they have chosen Eli as their charity! We will have more details to follow on this as far as teams, date, cost, etc.
     4. Account - Lastly, we have opened an account at City Bank titled "Eli's Baylor Fund". This account is available for Adam and I to put money from raffle ticket and dinner sales for me to use specifically when we are in Dallas to take care of expenses. This account is also available for deposits from anyone wishing to donate. You can remain anonymous, but we do ask that you send us a message if you choose to donate. We want to recognize and thank all those who donate, even if it's just by sending a small thank you note.

So, there it is..... Again, we want to thank everyone who has prayed for us and sent kind words our way. We appreciate all of you, more than you know! We will be posting more information soon about raffles, benefit dinner and Golf scramble. If anyone is interested in buying raffle tickets, dinner tickets or playing in the scramble, we'll make sure you have all the information you need. Again, we can't say it enough.... Thank you, thank you, thank you for all your love and support. The planning for getting Eli to Baylor has been stressful, especially the unknown. But we have SO much hope that this will be the answer to our prayers and we will come home with a little boy, healthy and eating real food!

We're going to Baylor!

Eli started working with several therapists with ECI in late 2010. He had an occupational therapist, speech therapist/feeding therapist and service coordinator. He also had a nutritionist for a very short time. In late 2011, his speech/feeding therapist told me about another family she was working with. The mother had told her about a feeding therapy program at Baylor. Since ECI had been working with Eli for almost a year and a half with very little progress (despite their very hard work), I began looking into this program at Baylor.

I started with a short phone call to ask about the program. The details they gave me: Come for an evaluation, then be scheduled to begin treatment. Eli would be in-patient due to his feeding tube. The program is 6-8 weeks and, without insurance, runs $45-65,000 dollars. Because of all of Eli's health problems, traditional insurance is out of the questions, so he is currently on CHIP. At the time I made this phone call, Baylor did not accept CHIP. So, the phone call ended and I was, obviously, very disappointed. I basically gave up hope of ever getting Eli into the program at Baylor.

Then, about a month ago, I received a phone call from Jackie, Eli's new case manager for CHIP. She introduced herself and talked about her role of making sure Eli was receiving the appropriate health care. She then asked if there was anything she could do for me. This was the perfect opportunity! So I told her about the program at Baylor, and Jackie went to work! It was a few days later that Jackie called me back and said that she had spoken with Baylor and they would take Eli's insurance! We were so excited, but this didn't last long. A few days later, I received an email from Jackie saying that now Baylor was saying they were no longer accepting managed care Medicaid or CHIP. Jackie reassured me though that they were working on a compromise.

At this point, we began asking everyone we knew to start praying. Something just had to work out! On March 23, the one year anniversary of Eli receiving his feeding tube, I was driving out to Adam's job-site to pick up his paycheck. On my drive, I received another phone call from Jackie. As I answered, Jackie told me that she had some very good news for me.... They had finally made a deal with Baylor and they were signing a contract with CHIP..... ELI WAS IN!!!!! I was so excited and shocked that I missed my turn by about 3 miles!! Jackie told me to be expecting a phone call from someone at Baylor to set up an appointment for Eli's evaluation.

Once I finally had my bearings, I turned around and found my way to where Adam was working. I still had tears streaming down my face when Adam walked up to the car and I was finally able to tell him the amazing news. I don't think it took long for everyone we knew to know! We were almost immediately on the phone calling family and friends.

Then, the following Tuesday, I received a phone call from Baylor telling us that our appointment for Eli's evaluation is May 18. It will take 4-5 hours. We will stay in one room and everyone will come to us. There will be an occupational therapist, speech language pathologist, behavioral psychologist and dietitian/nutritionist who will all come to observe Eli and ask questions. From there, we will find out when we return to Baylor for treatment. I've had people tell me that they went for the evaluation and were told to go home and pack their bags then come back in two days. I've also been told by others that they went for the evaluation, then had 2 months before they had to return for treatment.

So, there is still a lot of unknown and a lot of planning. What we do know: Adam, Eli and I will all go to Baylor for the evaluation on May 18. Once we find out when Eli will be admitted for treatment, I will quit my job. (Thankfully, this is all after graduation, so I won't have that to worry about!) Adam will stay in Lubbock to work and Eli and I will pack our bags and move to Baylor for 6-8 weeks. Adam will come to see us on the weekends as much as possible. My mom has also said she will be coming to visit and help when she can.

We have been truly blessed. This news of Eli being accepted to Baylor has given us so much hope! We've been dreaming of how amazing it will be to come home after those 2 months and Eli say, "I want chicken nuggets" and he actually eats them! I can already tell you, I'm going to be bawling like a baby the first time Eli eats real food! So, we want to say thank you to all our family and friends, and the friends of friends and people we don't even know, who have been praying for this! God is good and he does answer prayers! I will definitely be keeping up with this blog while we are at Baylor so I can keep everyone updated with Eli's progress. I know it is going to be tough, but it will definitely be worth it!!!

http://www.baylorhealth.com/PhysiciansLocations/OCH/Pages/Default.aspx
This is the website for Our Children's House at Baylor. I invite all of you to check it out and read about the amazing work they are doing with children!

What do you mean CPS is at our house?!

This post is one that has been weighing on my heart and mind very heavily. I wanted to write it to share our story, but I was also afraid of "what will people think?". After talking to Adam about it, he agreed that it needed to be done; not only to be honest about our experience, but because it was such a major event in our lives that we both agreed it was important to just put it out there. So, here it goes..... And there is A LOT to tell, so bear with me as this may get a bit long-winded....

Eli went in to surgery for his first feeding tube March 23, 2011. We all thought this was going to be a major blessing, even though it was a very scary thing to think about; our 2 year old little baby was having surgery, but we knew it was for something that could potentially save his life. The surgery went well and Eli was released from the hospital the next day, March 24. This was mine and Adam's 5th wedding anniversary and having our little boy home with us was the best gift we could have ever asked for. The next day was Friday, March 25. Adam stayed home from work, but I went ahead with my scheduled clients. I was also helping with a project at a local middle school talking to the female students about sexual abuse. I had finished with my morning clients and was on my way to the middle school. On my drive, I called Adam to check in and see how things were going. I almost had a wreck when his response was "CPS is at our house..." My heart dropped. On top of doing my internship as a Therapist Intern for the Children's Advocacy Center, I was also the Lubbock Regional manager for Safe Harbor, an agency that supervised family visits for CPS. So, I calmly asked Adam to put me on the phone with the caseworker. He did and the next thing I heard was, "Hi Rachel. This is _____ and I'm here following up on a report of medical abuse that has been filed against you and your husband." The next few minutes were followed by questions I knew she couldn't answer... Who, what, why.... She then put Adam back on the phone and I told him to not say anything else until I got there. So I frantically drove across town to my house while calling everyone I could think of.... My boss at Safe Harbor, the Executive Director at CAC as well as my Clinical Supervisor, and my Mom. When I finally arrived at my house, I was sickened to see this caseworker, someone who I had know since 2007 and I had supervised many of her family visits at CPS, sitting in Adam's recliner, observing us, watching everything we did, walking around our house and taking notes about everything we said. It took every bit of strength I had to not tell her to get the hell out of my house.

But I remained as calm as I possibly could. She again explained that there had been a report filed against us for medical abuse. (Remember in my earlier post, talking about the local neurologist who said there was nothing wrong with Eli, but everything that was wrong with him was my fault and I wasn't doing enough to help him? Well, we have the suspicion it was him, but this is something we will never know. You see, anyone can file a CPS report. They remain anonymous.) Anyway, she finished touring the house and asked me several questions before packing her things to leave. She assured me that, because of my position with Safe Harbor, this investigation would be handled with extreme confidentiality. That left me with the impression that the investigation would be dismissed and we could go on about our lives.

The following days and weeks were spent sending emails and making phone calls to CPS. Any news? Any updates? Is this over yet? Always with the same response.... we're still investigating. They had to get copies of all of Eli's medical records. Because he had seen so many doctors, there were a lot of records to get and review. Finally, several weeks later, we were told we needed to come for a meeting at CPS with the investigator and her supervisor. My boss from Safe Harbor as well as our dear friend and attorney went with us.We were told during this meeting that the nurse reviewing Eli's records saw many "red flags". Basically, they were not happy that we had been to so many doctor's appointments, but did not have an official diagnosis. Well, guess what!! So were we! (This all happened before the diagnoses of Klinefelter's Syndrome and PDD.) They also had the nerve to say that they did not believe that Eli's feeding tube was medically necessary. So did we just FORCE our doctor to do this surgery? And being 10 pounds under weight and not eating for 7-8 days in a row not fall under the case of being medically necessary?! I guess they know more that the doctors! (I don't know if you can sense my anger or not, but I still get furious over all of this...)

We were then told by the investigator that they were ruling this UTD, Unable To Determine, basically saying that they didn't have enough evidence to rule it out or to confirm medical abuse. With this ruling, it would basically be on Eli's record until he turned 18. If Adam or I (especially me, considering my line of work) ever had a CPS background check run on us, this investigation would come up. This would knock out many job possibilities for me, as well as the chances of Adam and I ever adopting or fostering through CPS. Not to mention the simple fact that this investigation was even happening! Here's the real kicker.... When we asked them what we needed to do to fix all of this, the investigator actually had the nerve to tell us, "Well, I call this an IDK case.... I Don't Know" (This response was then followed by a little giggle.) As if this investigation was not demeaning enough, the investigator, the person who is supposed to give us answers, just responded with a "text message" answer, as Adam calls it. We were furious!

After taking advice from our attorney, Adam and I elected to keep the investigation open. This would give us the opportunity to offer more information and evidence to rule it out and have it expunged. However, keep in mind that this meant the case was STILL OPEN. So we went to work, getting documentation and statements from doctors and therapists... something CPS had failed to do. We scheduled another meeting and handed over letters from Eli's therapists at ECI. The supervisor actually said, "Ya, I noticed these things were missing from his file. Thanks for doing our job!" (Her comment was also followed by a little giggle.) So, here we are.... 6 months later and sitting back in this office at CPS. Thankfully, we were then informed that CPS was closing the case as Ruled Out. It will still take 18 months to have this expunged from the record, where it will not show up on any background checks or anything. When we received the final paperwork, it had me listed as the Perpetrator for Medical Neglect or Abuse, which was defined as failing to provide my child with food, clothing, or shelter. I still get so angry when I think about this; that anyone in their right mind would think that Adam or I would ever hurt or not provide for our child. I tell people, it would have been different if Eli had been sick like he was and we DIDN'T take him to the doctor. Had we not taken him to the doctors and specialists, I honestly don't know if he would be here or as healthy as he is today.

I still worry every time he gets sick and we have to go to the doctor, or take a trip to the emergency room or go for more chest X-rays. Is CPS going to show up at our house again? Are we going to have to go through this hell and this fight again? I even walk into restaurants or stores and scan the room for the investigator and supervisor. I just don't know if I could handle myself or control my reaction if I ever saw them in public. For 7-8 months, they ruined our lives. I have worked along side CPS since October 2007 when I began working for Safe Harbor. Now, as a therapist intern for the Children's Advocacy Center, I am still in contact with them on an almost daily basis. Not all of them are bad. I see them do good so much with the children that I counsel. But in our case, I have to say I am severely saddened and disgusted by the lack of professionalism and tact that I saw from them.

And Adam and I still apologize to friends and even family for not telling them when this first happened. Honestly, CPS had SO much information about us and Eli, we were terrified to tell anyone or trust anyone. We looked at everyone we knew and wondered, "Was it them? Did they report us? Who would think that we are not good parents?" And we will never really know who reported us. I understand the protocol on that; I really do. But the investigation, in it's entirety, just makes it so hard to understand "why?".

So, Adam and I just wanted to share this part of our story. We wanted people to know what our experience has been. Maybe it will help some of our friends and family understand why we are so guarded. And if this is your first time hearing about this experience and you're wondering "Why didn't they tell me?", I'm sorry. As I said, Adam and I were scared to tell anyone because of the questions and comments we were afraid of getting. Now, I think we are to a point where we want people to know. We're finally comfortable sharing this very difficult, very painful part of our lives.

We're not alone!

So much of the time, when you're child is going through all these crazy medical things, you catch yourself thinking, "Wow! Am I the only one...?" And so much of the time, it really feels like you are. Adam and I have had several talks about, "I wonder if anyone else really knows or understands how we feel or what we're going through." Well, several weeks ago, my Mom saw this video on Facebook and reposted it. I was so glad she did that! After watching this video (and crying through most of it) I realized that other parents out there are dealing with the same thing!

It's funny what kind of reactions we get when we tell people about Eli's eating. "So, he won't eat hamburgers or chicken nuggets or mashed potatoes? Not even ice cream?" People don't seem to understand that he really doesn't eat anything, except Go-Gurt. Or the reaction of, "Oh, I know EXACTLY how you feel! My kids won't eat vegetables or turkey." Not to be rude, but NO, you don't know how we feel; constantly having the fear of what if Eli never eats anything else. Or what if there is something wrong with one of the Go-gurts that we give him, and he stops eating the ONLY thing that he currently eats.

Well, back to the video. I hope that this video will help others understand what our lives are like, trying to make sure that Eli at least eats his Go-gurt. Everything else goes through the tube. I hope each of you take the time to watch this video and I truly hope that it will help you to understand what it's like for us.

If I could meet the mother in this video and give her a hug and tell her, "I understand".....

http://www.youtube.com/watch?v=FAczWiKfk6I