Sunday, May 14, 2017
Mark sent me this video the other day knowing how much I would appreciate it! I cannot deny that I love it! I cannot deny that it brings me joy!! Grateful for a husband who gets me. Grateful for my family who loves me for me. Happy Mother's Day!!! And to all you mothers out there, keep on truckin'!
Friday, February 10, 2017
Liam's feeding tube journey began years ago when he was a wee baby. His height and weight was hardly ever on the charts, but he always followed his own, steady growth curve. We (us and his pediatrician) weren't concerned about his size. He ate fine as an infant, getting enough calories to sustain him. We just assumed that he was going to be itty bitty. Although saying that, his pediatrician said from the beginning "Maybe he has a syndrome that we just don't know about." (He had several other anomalies that made her think so.) It wasn't until he had two surgeries in September of 2011 when he stopped being interested in food. At first we excused it by saying "He must not feel well after having surgery." You know what it's like if you have had a surgery, sometimes you just don't feel like eating. But for Liam days turned into weeks and eventually mealtimes became a nightmare. He would scream and cry even as we would approach the high chair. I found myself squeezing his cheeks together, trying to shovel in the creamiest, full of fat yogurt I could. I offered him anything and everything but he still wouldn't eat more than one or two bites. I didn't understand how or why he didn't want to eat and it was frustrating. He would drink enough pediasure with added DuoCal to satisfy his hunger and stay hydrated, but it wasn't enough to help him grow. Soon, our pediatrician referred us to a gastroenterologist who said that Liam was a perfect candidate for a fedding tube. His height and weight were maintaining but his head had stopped growing. It was time. It was time to help Liam gain and thrive.
|I took these shirtless pics just a couple days before surgery to document his tummy pre feeding tube. I remember feeling sad because I knew he'd always have a scar. His perfect body would now have 2 belly buttons.|
|Night Before Surgery|
On March 9, 2012 Liam had a PEG (Percutaneous Endoscopic Gastrostomy) tube placed. (PEG involves placement of a tube through the abdominal wall and into the stomach through which nutritional liquids can be infused.) Even up until the minute they took him back to the operating room I was hesitant to do it. I wanted to grab my baby and run. I knew it was a good option but I wasn't sure it was the best option. I didn't want my baby to have a feeding tube. In many ways I felt like a failure as a parent. I felt like maybe I didn't try hard enough. Maybe I needed try different approaches and give feeding therapy more time. I just didn't want an easy fix, I wanted to be the one to "fix" the problem. But after we said goodbye and as the anesthesiologist carried him down the hall, a huge weight was lifted off my shoulders. It was the BEST option for him and finally he was going to get the nutrition he needed. I no longer had to feel guilty that I wasn't doing enough or that he wasn't eating enough. He was going to get every calorie, every gram of fat, protein, carbohydrate, every nutrient and vitamin he needed through his feeding tube. And as an added bonus, I could give him all of his meds through his tube too.
|All of the pics above are post PEG placement. Surprisingly he never tugged or seemed to be bothered by this foreign object. He must have known that our new normal was going to be ok.|
A few months later on June 12, 2012 Liam had his PEG replaced with a MIC-KEY tube or what we call Liam's "button". Instead of having a tube hanging from his stomach, he had this low profile G tube placed which is a bit more discreet and lays flatter. It allows Liam to be active without worrying about it hanging or getting caught on something. It gives him more freedom to do every day activities and live a "normal" life while giving us access to still hook him up to his feeding pump. When his first PEG was placed his doctors felt that he would only need a feeding tube for a year. Their theory was if we can get him in the 3rd percentile for height and weight, then hopefully something will click in his brain and he will want to eat. They felt that maybe his body was in anorexic mode but once his body grew and his brain developed, he would naturally want more and he would "outgrow" his feeding issues. But here we are today. Almost 5 years later he still needs and uses his feeding tube. Most of Liam's nutrition comes from the formula that gets pumped into his body during the night time. Night feeds has been the best option for our busy family lifestyle. We hook him up at bedtime and the pump continuously, at a slow rate pumps formula into his stomach. Around 5 am, the pump beeps to let us know the bag is empty, we unhook it from his button, and he continues to sleep for another couple hours.
|Post MIC-KEY button. No more dangling tube.|
Every night at bedtime he also has a "chocolate bobble". He wakes up with a full belly so rarely will he eat anything in the morning. For school, I was packing his lunch with 6 various things that I mentioned above, but almost everyday he would come home with a full lunch box. His granola bar would maybe have a bite or two taken out of it, but even his Kit Kat most days would be unopened. He has started to get school lunch and even though his aid tells me he eats, I know he's not. He will tell me "I got a sandwich today but I threw it away. But I did take a bite of a carrot." First of all he doesn't even like sandwiches and secondly I know he takes bites out of carrots and broccoli but he won't swallow them. I allow him to get school lunch though because not only is it free but it gives him independence too. He also likes to feel like one of the guys (all of his friends eat school lunch). When he was taking home lunch he was supposed to leave everything in his box so I could see what he was eating. But on occasion he would come home and it would be empty. When I would ask him about it he would say "I just threw it away like my friends did." Bless his heart. He would see his friends dump their lunch trays and wanted to do the same. So now that he gets school lunch, he gets to dump his tray like his friends do. Bless!
So the big question is why? Why does Liam not eat enough orally to sustain him? What condition or disease does he have that contributes to his feeding issues? His pediatrician was spot on when she said "He probably has a syndrome that we just don't know about." In June of 2015, after a long battle with the insurance companies, we found out through a chromosome test that he does indeed have a syndrome. Liam was diagnosed with 16p13.11 micro-deletion. He is missing part of his 16th chromosome. Although this syndrome is somewhat uncommon and doesn't have much research to back it, we do know that feeding difficulties are part of it. Liam was also recently diagnosed with SPD (Sensory Processing Disorder) and ASD (Autism Spectrum Disorder). These two diagnoses go hand in hand with his deletion so they come as no surprise but there are times when I wish we could just say he has a chromosome deletion. I really don't want to add more labels to his repertoire but these labels will provide us with more services and help. They also provide more answers as to why he does or doesn't do what he does or doesn't do. So for now we know that Liam doesn't eat because something in his brain doesn't like the idea of trying new things, it doesn't like the textures or smells of certain foods, and the switch just hasn't turned on to make him want to eat. He may have his tube until he is 18. He may get it taken out next year. We really don't know. But what we do know is that no matter what diagnosis he has, now matter if he does or doesn't reach the 3rd percentile, or if he eats or doesn't eat, his feeding tube is keeping him alive.
What used to be a scary and daunting option is such a blessing and relief. Managing a feeding tube is easy peasy. It's just part of our daily lives. Our oldest three know how to fill the bag, prep the pump, hook him up, etc. The feeding tube is part of Liam. In fact whenever we talk about getting it removed if he starts eating he says no, holds it tight, and gives it a little squeeze. It's been a part of him for so long that I don't think he likes the idea of it ever going away. So for now it's here to stay and he will continue to eat ice cream for breakfast, lunch and dinner, and a Kit Kat for dessert if he wants. And my *Fun Size little man will continue to be fed by his feeding tube because his feeding tube is fueling his life!!
*Somebody asked me the other day why I use the hashtag #liamisfunsize. When I met his current GI doctor, who I absolutely love and adore by the way, she said "Liam is just fun size." I loved it and continue to use it because my Fun Size Liam brings me joy in a big way!!
|Liam today. All hooked up and ready to be fueled!|
Friday, July 15, 2016
Be warned!! This is a lengthy post! Typical Jodi fashion! But it's a post that has been brewing for a long time. It is a post that was sparked by these photos I saw posted a few months ago. Photos that will forever haunt me.
Meet Kyle and Ksenia. They are two children who will never know the touch or a kiss of a mom. Beautiful souls who will never be read a bedtime story or tucked into bed by a dad. Perfect beings who will never walk hand in hand with a brother or sister. Two precious children who were worthy of love but just didn't get it in time. A love that could have saved their lives but instead they died alone, never knowing what that love even felt like. The photos on the left are ones that were on their "waiting child" photolisting. The ones on the right were taken after they were transferred to an adult mental institution. You read that right, an adult mental institution. At the age of 4 or 5 special needs, waiting children who do not have families committed to them are transferred from an orphanage to an institution. Here they are left to endure many years of pain. Most don't even make it past a year because they are picked on, beaten, starved, neglected, tied to a bed, have health issues that are never addressed, cause self inflicted harm, and are left to die. Their bodies and spirits have endured so much, even before their transfer and they just can't hold on any longer. You can see why these photos are haunting, but is it enough to spring others into action? Do you look at these photos and want to help? Or are they easy to ignore because it's not your problem? (I mean that in the harshest/nicest way.)
It is no surprise that foster care and adoption light my fire. But I am always surprised that more people aren't feeling the heat. Why aren't more followers of Christ, more Christians talking about the orphan crisis? Why does or did the church offer assistance for those wanting to adopt "healthy" babies domestically? But there isn't or wasn't a program to help those in greater need, children who are left abandoned in other countries because they are deemed unworthy? Or children who are truly orphans, because their parents have died from HIV or Ebola? I wonder why it's not taught from the pulpit often that we are responsible to care for the fatherless and needy. Are we fully living our religion found in Matthew 25 and could we do more?
"Then shall the righteous answer him, saying, Lord, when saw we thee an hungred, and fed thee? or thirsty, and gave thee drink?"
“When saw we thee a stranger, and took thee in? or naked, and clothed thee?"
"Or when saw we thee sick, or in prison, and came unto thee?"
I cannot explain why others don't feel the same as I do. I do not understand why it's not on everyone's heart. I know there are many more issues that our world is facing and perhaps the orphan crisis is not top on the list. Maybe we don't even look at these scriptures and think of it in terms of orphans. But then I wonder too if it's because many just aren't aware of the need. My heart was only pricked 7 years ago. Adoption was a discussion prior to 7 years ago, but it was never an option until I recognized it was my responsibility to help. It wasn't until I saw 3 girls who were separated from their parents and other 7 siblings because of neglect that I became aware. I went home after meeting them, told my husband we needed to do something and the rest is history. We got licensed to foster, waited a year until our first placement, adopted Liam, then adopted Sara. My heart was changed then and it has never been the same since. I know without a doubt that those little girls prepared my heart for Liam. And Liam prepared my heart for Sara. When I was made aware of children who were neglected in other countries because of their special needs I was ready. Liam taught me that "special needs" wasn't so scary so when I felt the tug to adopt Sara, I knew it was something we could, should, and would do. I do not condemn those who don't feel the same way. But I have to wonder why? Especially those who are able and available? I know the cost scares a lot of people. But it's not the only reason that holds people back and if it is aren't we taught to have the faith of a mustard seed? He will provide. I will say money is the easiest excuse and an easy first response to reply "I don't have $25-$50K." Who does? But I feel there's more to it. People tell me all of the time, "I just couldn't do what you do." Or "You are so amazing?" Let me just respond to both, yes you too can do it and no I am not amazing. I was led by His love, that's it!
Besides being unaware, here are my feelings as to why we don't take the adoption leap of faith. Either we're too young or too old or we're always waiting. Waiting until we have more money. Waiting until we are in a bigger house or until the remodel is completed. Waiting until we drive a bigger and better car. Waiting until the kids are a little bit older. Waiting until the kids grow out of their tantrums or until their "issues" are manageable. Waiting until we are healthier and skinnier. Waiting until our job situation changes or when we get a raise. Waiting until we get new furniture or appliances. Waiting until we finish school. Waiting until a lightning bolt strikes us from the heavens and says "Now is the time!" Basically we're waiting for the "perfect" time when really there is no such thing as the "perfect" time. Money will always be an issue no matter how much or little you make. A bigger house just means more expense. Better or bigger car may be necessary, and having older kids is convenient. Kids will always have "issues" and being skinnier would be awesome. Getting a raise would be nice and acquiring new furnishings for the home is ideal. Waiting to finish school would alleviate stress, I get it. I am not discounting that some of these points are valid, important, and necessary, but they are not required to commit and say yes to a child. I personally feel (let me emphasize this is my personal opinion) that many of these things are excuses to fool us into thinking that we can't do it. Children in need don't care how old you are, what you drive, what you do, how much money you make, how many kids you have, how much you weigh, where you live, how fancy or posh your home is, or what you wear. They just need a family who cares and who is willing to take a leap of faith and plant that mustard seed. Again, He will provide.
I am not amazing! I am just an ordinary gal who had the desire to do His will. My heart was pricked and it led me to action. I had many doubts and questioned whether my thoughts were my own or from a greater power. There were times when I wished the heavens would have opened or a lightening bolt struck to give me direct answers, but my desire to help started small and grew into something big. I realized that all of the thoughts that came to my mind, sermons I heard, songs that played, scriptures or books I read, or people I came across were my personal lightening bolts and had everything to do with my decision to know that we had to take that leap. I am not amazing! I am humbled that God felt like I could do it. I am grateful that I listened even though it would have been easier to ignore. I guess what I am saying is that you don't have to be amazing to adopt, because it's not the adopter who is amazing, it is the greater power, God who is amazing. If your heart has ever, ever been stirred, stop. If you have thought for a minute that maybe you could open your heart and home to a child in need, listen. Stop and listen because God may be speaking to you and is ready to lead you. I know that adoption isn't for everyone. I know there are circumstances that surpass the material things that I have written about. I am talking to those who are able. Sometimes it's easier to ignore or pretend that we're not the "type" or could never do it. But I want you to look at these faces and try to ignore what you see. These children were worthy of a family but now it's too late because they have left this earthly home without one. Sadly the next photos I've shared below include three boys who died this past month. Cristoff and Judah did have families coming for them and Cameron who just passed away a few days ago had no family comitted. These sweet babies had endured too much and just couldn't wait any longer. My heart breaks for their families who never had a chance to whisper, "You are cherished, chosen and loved." My heart breaks for the others like Cameron who never had anyone fighting for them. Unlike foster care, no one is calling registered/licensed, home study ready families asking to take these children in. No one, not even their parents who abandoned them are visiting them at the orphanages. Their basic needs may be met but nothing can ever replace the love of a family. Days, months, years of neglect win and these children suffer and eventually die, alone. They are buried alone. No fancy casket, no service, no celebration of life, no obituary listing their accomplishments or loved ones, no elegant engraved headstone. They have no one to place flowers on their grave. They have no one to keep their memory alive! Nothing or no one!
Last year, less than 30,000 children were placed for international adoption worldwide. With 150,000,000 orphans around the world, 30,000 didn't even make a small dent. Sure it's better than nothing but we still have a lot of work to do. Christians and non Christians alike, people who have a love and concern for mankind can and should do more. Even if you can't adopt there are still ways to provide help to these children who so desperately need it. Gather needed supplies or diapers for orphanages and send them abroad. Organize a fundraiser to support a care package drive or a monetary donation. Travel abroad to take part of a mission trip, one that visits orphanages and helps meet their needs. Find out if the company you work for offers a matching donation program which can double your donation. If you own a company consider donating to an organization like Reece's Rainbow for a tax credit. Advocate, share, donate to a family in the process. Donate to a waiting child so the financial part isn't a burden for their family when they are found. I know that my work isn't done and I hope that this has helped you see that your's isn't either. If you weren't aware before, you are now. Consider this your Awareness PSA (Public Service Announcement). Please take a moment to ask yourself, "Can I do more?" Please take a moment to listen and see if God is sending you personal lightning bolts. He works in mysterious ways!
I know there are many willing hearts and lots of people who do take action in whatever capacity they can. I know there are many unsung heroes who silently make a difference. I appreciate their efforts and appreciate the efforts of advocacy that Reece's Rainbow and other organizations provide for waiting children. I admire families who have adopted domestically or internationally or both and who foster children. I know that I personally cannot change the world or have by adopting myself but I am grateful that I have changed the world for two children. And I am grateful that at least 30,000 others stepped forward to change the lives and world of 30,000 orphans no more. But, there's always a but, there are still many who are in prison (or an orphanage in this case), poor, naked, hungry, thirsty, sick, and alone. There are many "strangers" who need someone like you to take them in and who believe that it is your duty to impart of your substance. Regardless of what you impart, you will be blessed.
There is a child who lies in a crib waiting to be held. A child who is hungry. A child who doesn't even cry because they have learned that it doesn't make a difference, no one will come.
There is a child who longs to hold anyone's hand but especially their daddy or mommy's hand. A child who just hopes for a gentle touch or even eye contact when they are being fed.
There is a child who is wishing for freedom. Freedom from their lonely existence. Freedom from their prison.
There is a child who deserves the gift of a family, the gift of love.
There is a child who waits for the day when they are welcomed home. An earthly home where they have a sense of belonging. A place where they can experience Heaven on Earth.
|More sweet babies who are in the arms of the angel in their eternal home.|
There is a child who deserves life and love and you can help. Be an angel. Be the answer.
“And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.”
Thursday, June 9, 2016
Birthday shout out to Reece's Rainbow!
Reece's Rainbow Celebrates 10 years today!!
In one decade, Reece's Rainbow has helped find families for 1,585 orphans no more.
But their work is not done!
"As long as there are children with disabilities being abandoned, left in orphanages, we will be working to find families for them."
For the first 10 months of her life Sara had no one or nothing to call her own, not even this crib because before she occupied it another child did and after she abandoned it, another child moved in. At 7 days old, she entered an orphanage. All because she was born with something extra, something different. On May 7, 2012 we relied on our faith and committed to adopt this bright ray of sunshine! We knew we could make a difference and that our work wasn't done. And lucky for us we discovered that her something extra was something wonderful! On October 10, 2012 she became an orphan no more! And today she is cherished and loved and enjoys the blessing of a family!!
Olen is an orphan who also deserves the blessing of a family! Sadly his "home" for the past 3 years is still a metal crib. Maybe he is the one who filled Sara's. Please don't let his diagnosis, his difference scare you. He is worthy of love and should be sleeping in a home not an orphanage. Please see him! Please consider adoption. Maybe your work isn't done either. It won't be an easy road but it will be worth it! I promise!
|Click here to read more about Olen. Share his story, pray for him, and blow kisses to him in the wind tonight. Hang tight little fella, your mama and papa will see you. You will soon know what it feels like to be "home"!!|
We found our pot of gold at the end of our Reece's Rainbow! We are blessed beyond measure for our found treasure! Thank you Reece's Rainbow. Happy Birthday and here's to another 10 years of raising awareness and finding families for more children!!
Sunday, May 1, 2016
Sunday, March 20, 2016
3 2 1! Rock your socks!
Tomorrow, March 21st is World Down Syndrome Day! 3/21 represents the triple copy of the 21st chromosome that occurs in Down syndrome. It is day of recognition and acceptance for those who have a little extra. We sure love everything about Sara, especially her extra sweetness! Please join us and wear mis-matched or crazy socks and when anyone asks "Why the crazy socks?" you can reply "Because I am crazy in love with someone who has Down syndrome!"
|She's so sweet she's oozing with chocolate!!|