Goodness, it's been some time since I've blogged! Life has been beyond crazy so here's an update for our family, friends and followers!
In March Riley was diagnosed with PDD by one of our top hospitals in the nation, National Jewish. PDD is an autism spectrum disorder, meaning that in all major milestones and development, she is significantly behind (by about a year to 15 months) and often digresses.
In May, Riley had her G-tube put in. However, after several issues with the tube and tube malfunctions, we had a G-tube replacement surgery done in June. We also received Riley's trisomy X syndrome (the presence of an extra female chromosome in her genetics) diagnosis with genetic testing being done. We also learned of a seizure focus (a seizure spot on the brain) that is associated with her genetic disorder.
We started PT, OT and speech therapies in addition to the feeding therapy we had already been doing weekly.
In September, Riley was diagnosed with SID which is Sensory Integration Disorder. Basically, her brain is unable to relay to her body the appropriate times in which her senses should work. For example, Riley is unable to break a fall because her brain doesn't tell her she's falling. Her body awareness (what's going on around her, a sense of fear or danger, falling ect) is nearly non existent. She continues to pinch, hit, bite ect partly because she doesn't have a sense of touch as most of us do. In order for her to feel sensation, she needs to be aggressive to do it. We are currently using ankle weights at 3/4 lbs for 20 min intervals twice a day and are starting with a benik vest ( a weighted vest to wear). For kids with SID, and for Riley in particular, weight is a huge comfort when done correctly. Weight for kids like Riley provides comfort by making them feel compression and hugs without having to hug a person or sit with a person, something that is often times very very uncomfortable and unsettling for Riley. Weight brings her down from a rage, a tantrum or being very spacy and unable to settle and is a great alternative to medication.
Port was brought home from our 3rd deployment due to Riley's health and put on as XO for Rear D in September. The job change has been an adjustment but I really feel like we are thriving on Rear D because of our amazing command staff. We work alongside people that truly care about Riley and Port is at all appts with me, helping and covering down when I need him most.
In October we began hippotherapy in Black Forest. The natural movement of a horse has been shown time and time again to greatly benefit people with brain and neuro dysfunctions. I have seen Riley catch a ball, sign and do things that she is unable to do on land at this point. It is not covered by any insurance along with her ankle weights and vest but God keeps providing as the expenses pile up.
In November we saw the #1 doctor in the nation for trisomy x syndrome. She has been a huge support and a great encourager. She is our first official genetics doctor and has been very aggressive in Riley's treatment plan. While there is no known cure for any of what Riley struggles with, I am learning ways in which to improve her care, be her voice and give her more of a chance in this world. We are currently undergoing additional genetic testing to try and explain other symptoms and issues that Riley is having upon advice of her genetics doctor.
We also began with an in home nurse for Riley in November. What an unreal blessing it has been. Our services are provided by our insurance and we pay a portion each month to keep our nurse on board. It's been a bit rocky in the start of it all, a huge adjustment for me and very emotional but it's worth it and I know God is still molding me to be the mom He has designed for me to be.
Now amidst, ultrasounds for her organ check ups, clinics at Denver and daily therapies, God is working. It's all been made possible by Him!
I have my good days and my bad. I have my days where I don't need to question God, I'm ok with where Riley is, this crazy life is mine and we're making it. I also have my days where I can't stop the tears from coming, I'm mad at God, I question Him on everything, I fight those I love most, I am angry, so so angry. I keep my circle of friends close and tight. They along with Port, are the ones who see what goes on behind closed doors, who take my meltdowns, my episodes, who pick me up when I just can't take another step. They get Riley for who she is and love her as their own. I am so so very blessed by these friends. You know who you are.
I am so thankful that I am still a work. That in my grieving for our girl, my heartache, God gets it and in it all, I am still more blessed than I could have ever imagined:)
Tuesday, December 13, 2011
Saturday, September 3, 2011
Faith Enough
There was once a time I stood very guarded. I was a social butterfly, playing nice with everyone but keeping my heart under tight wraps. Very few knew the real me and those that did I kept very close.
Life happens and the Lord brought my family to circumstances that forced me to reach out, to ask for help, to allow others in. Those that once protected me, that made up my inner circle were gone. It was time to reach out, to try, to let others in.
Over time it seems the darkness has shoved more and more of the light out until there is very little left. Maybe just enough for the step I'm on. I have cried to the Lord with all that is in me. I have begged, gotten angry, pleaded with and fallen into the one and only who can carry such pain. The enemy has no cares you see. There isn't a part of your life he won't touch and try to bring to ruins.
Looking back over my childhood, he hardened me to physical pain. I don't believe that it is coincidence that today I live every single day with gut wrenching pain. I am totally dependent on medications to allow me to move my legs, to bend without crying out. Words however are a different subject. They cut right to my heart, rip open my soul and leave me with pain that outweighs what I feel physically every day.
Today I write with such a heavy heart. I feel sorrow that threatens to overtake me. There is but a glimmer of light left in this very dark room that I call my heart. Words have been used to cut and cut deep. Some from those who seek to destroy me. Some that show me his pain, his anguish, desperation and frustrations. Words that fill me with the weight of what he too carries.
So we are at a crossroads. We can walk away or push thru.
But we have Jesus.
That's where it all becomes bearable. We have Jesus. We have a Redeemer, a Counselor, a Mighty King who has given His life to save us. He has paid the ultimate price that we may live. He has promised to never leave or forsake us. We has Christians, as believers don't have the option to walk away. We don't have to choice to call it quits. When our circumstances make us sink, we have to look up.
This morning, on my knees, praying and crying out I felt the Lord say to me, "Love, your faith has to be enough. It has to be enough for you both. He can't go on. The next step is too much. You must carry him as I have carried you by your faith."
"How Lord? How can my faith be enough when it seems so little just to me? It seems we recover from one report only to get hit hard with another. Those I have trusted have done what baffles me. It has been one punch in the gut after another and I can't breathe. Those I have called on and confided in have let me down. My heart is in my hands, my soul bare for the world to see. Lord it feels my faith is so weak itself. But I will obey. Lord, I will love him enough to let it be enough. I will keep fighting when he can't anymore. I will stand firm with my armor on, my heart protected so that I may take the brunt for my family if need be."
Let the insults come. Let the speculation rise. Let the rumors stir. Let the conversations flow. You are my Defender, my Rock, my Strength and Refuge. Brace us for the storm Lord. Lift him to higher ground. He is yours Lord. May my faith be enough for us both.
Nichole
Thursday, August 11, 2011
Life:)
"Life is hard
sometimes-
crazy, mixed-up,
messed up.
And there you are,
in the middle of it all,
just doing your thing...
being strong and
brave and
beautiful
like it's
no big deal.
But let me tell you, girl,
it is
Not everyone can do
what you do.
Not everyone can handle
things the way you can.
While you wonder sometimes
if you're doing ok...
the rest of us are just
watching in
WONDER.
I received this card a few weeks ago from a very special and dear cousin. I've had it hanging in my kitchen since then. I cried and cried when I read it. What a treasure it is to me now. I'm sure she wanted to bless me, to encourage me....I wonder if she knows just how much she did;)
sometimes-
crazy, mixed-up,
messed up.
And there you are,
in the middle of it all,
just doing your thing...
being strong and
brave and
beautiful
like it's
no big deal.
But let me tell you, girl,
it is
Not everyone can do
what you do.
Not everyone can handle
things the way you can.
While you wonder sometimes
if you're doing ok...
the rest of us are just
watching in
WONDER.
I received this card a few weeks ago from a very special and dear cousin. I've had it hanging in my kitchen since then. I cried and cried when I read it. What a treasure it is to me now. I'm sure she wanted to bless me, to encourage me....I wonder if she knows just how much she did;)
Saturday, August 6, 2011
Random Yumminess
There was a time I thought I knew something, I had it all figured out. Life will change that!
I wish for beautiful green grass instead of the "trees" growing in our yard.
In 3 months we have said goodbye to our 3 best friends and daddy.
My life feels like a top secret story at times, constantly guarding what I say and to whom I say it too. Thank you dear army;)
I'm more for caution than for throwing caution to the wind.
I think more of discernment and discreetness than for my life going on FB in constant status updates.
I used to work with special needs kiddos in middle school. I was drawn to them. Never did I imagine that we would have one of those precious angels ourselves.
Riley is in a "booooo" stage in her life. Everything she eats must be blue. Oh joy.
I can't believe I'm almost 30.
Homeschooling sucks right now. I think it's safe to say we're in a valley of sorts with it.
I have read 5 novels (300 pgs +) since the deployment began. I sit up all nights some nights reading.
My pet peeve: when parents bring themselves or the kids out and to church sick. Someone's cold is someone elses' nightmare, a trigger for worse to come.
I am terrified of cops...as in can't talk, the words won't come. I'm such a dork.
I'm totally ok with being removed from someone's FB friends list and even more ok with being blocked. I do not suffer a broken heart here.
That being said, I don't deal well with people quoting scriptures or putting a status up instead of just saying what you need to say to that someone. Grow up.
I am so in love with my husband:)
My best friend is someone whom I thank God for every...single...day.
I won't ever buy the book, "A Fish Out of Water" by Dr. Suess. Carson sits with me every single time we visit the train table and insists I read it to him. I adore this this time with him. If I buy it, he may not sit with me, asking me to read.
I operate by visions and dreams. This is how the Lord speaks to me most clearly.
I miss my life at the ocean but wouldn't trade my mountains for it all:)
I wish for beautiful green grass instead of the "trees" growing in our yard.
In 3 months we have said goodbye to our 3 best friends and daddy.
My life feels like a top secret story at times, constantly guarding what I say and to whom I say it too. Thank you dear army;)
I'm more for caution than for throwing caution to the wind.
I think more of discernment and discreetness than for my life going on FB in constant status updates.
I used to work with special needs kiddos in middle school. I was drawn to them. Never did I imagine that we would have one of those precious angels ourselves.
Riley is in a "booooo" stage in her life. Everything she eats must be blue. Oh joy.
I can't believe I'm almost 30.
Homeschooling sucks right now. I think it's safe to say we're in a valley of sorts with it.
I have read 5 novels (300 pgs +) since the deployment began. I sit up all nights some nights reading.
My pet peeve: when parents bring themselves or the kids out and to church sick. Someone's cold is someone elses' nightmare, a trigger for worse to come.
I am terrified of cops...as in can't talk, the words won't come. I'm such a dork.
I'm totally ok with being removed from someone's FB friends list and even more ok with being blocked. I do not suffer a broken heart here.
That being said, I don't deal well with people quoting scriptures or putting a status up instead of just saying what you need to say to that someone. Grow up.
I am so in love with my husband:)
My best friend is someone whom I thank God for every...single...day.
I won't ever buy the book, "A Fish Out of Water" by Dr. Suess. Carson sits with me every single time we visit the train table and insists I read it to him. I adore this this time with him. If I buy it, he may not sit with me, asking me to read.
I operate by visions and dreams. This is how the Lord speaks to me most clearly.
I miss my life at the ocean but wouldn't trade my mountains for it all:)
Thursday, July 28, 2011
My Prayer
How great is our God that we can go to Him with all things? We have the freedom, the approach, the time and ability. We can take it all to Him, we can be as raw as we need to be, we can lay it all out with boldness, confidence and mercy. (Hebrews 4:15-16).
With every passing day I am learning more and more that this world is not my home. The Lord is coming back someday for His children and every knee will bow, every tongue will confess that He is Lord. (Romans 14:11)
Port and I have never needed a diagnosis of any sort to know that there were things going on with Riley. When I was around 17 wks pregnant with Riley and on bed rest for complete placenta privia, the Lord spoke so clearly to me. He told me then that Riley would be different, that she wouldn't be normal according to the standards of the world but not to fear for she is fearfully and wonderfully made, just as Psalm 139 tells me. He told me that she would teach us and show us things we had never known before, that she will lead others to Him by what she endures. We knew then, that whatever lay ahead was God's will for our lives and what a roller coaster it's been since then.
Funny how once the Lord Almighty confirms something to you, leads you to a divine moment with Him (and I've had many of these since Riley's birth) the enemy will come in to tear you down, causing doubt. I have struggled for months, more so now, that I have given Port a sick baby, a baby who is not normal or well, one that I cannot make well for there is no cure. I carried her for 9 months, she grew in my body. I did something wrong.
Since then, maybe I didn't fight hard enough. I've learned that with some doctors, not all, but some you must fight and fight hard. I fight like hell for Riley with each doctor that comes our way. I treat them with respect and try hard to show them that Christ dwells within me, but I fight.
After an entire week of no news on her brain MRI, I threatened to go to the neuro's office until he would see me. This approach is one I've used several times in the past with other doctors who don't feel Riley deserves their time. Still with no help I waited one more day. I left 9 messages over the course of a week. I then called back and said I would be at the office in the morning to take Riley's records and results, that JAG would escort me if I asked them to do so.
In the meantime I called Riley's Ped, knowing she has access to test results ect. I asked her to read them to me and explained that the neuro was too busy, unwilling to help. She read to me what maybe we expected but hurt beyond what words can express. There is an abnormality on Riley's brain that represents seizures. We do not know that Riley has or hasn't had seizures because they come in so many different types and forms. But there is a spot there. It looks as though it has been there since birth. My heart hit the floor.
"How will I tell my husband Lord? Am I to prepare for seizures, has she been having them without me knowing? Lord, has she suffered with this and now 27 months later we know about it? Why do the reports keep coming, why after Port is away? Why didn't the doctor call?" While many say to be thankful for answers, we are weary of them in ways.
"Lord you made her but nothing appears right; her lungs, her feet, her legs, her throat, her stomach, hear ears. She has tubes Lord, in her ears and stomach. She has braces on her feet Lord. She is in more therapies a week than I can make possible. Her brain. Her genetics. What else???? Forgive me Lord for questioning you. Forgive me for looking at your work as "not right." Forgive me for making it about me...how I feel as a failure in carrying her, how I could be doing so much better with my husband away. It's not at all about me but all about you Lord."
I don't understand this fallen world. I don't understand why doctors play around with the brain of a human being. I don't understand that lack of compassion as the neuro finally calls back to say, "we have something to discuss with you but it's no emergency. Can you come in to talk in 2 weeks?"
"Bring my husband home Lord, I need him. Bring him now. Take us to doctors that are filled with you. Bless those who pray constantly for us, who help us faithfully by serving and getting out of their boat. You make all things beautiful in your time and Riley is beautiful. She was made by the Creator, knit together in the secret place. Strengthen your people, that those who do not know you will. Forgive us. May we praise you and show thanksgiving in all things, may we bless your Holy Name in the midst of unbearable heartache. It's ok if you don't heal her, it's ok if you choose not too....but please give us the strength and courage to take the next step, whatever that may be."
Jesus, Jesus, Jesus, Jesus, Jesus, Jesus, Jesus.
With every passing day I am learning more and more that this world is not my home. The Lord is coming back someday for His children and every knee will bow, every tongue will confess that He is Lord. (Romans 14:11)
Port and I have never needed a diagnosis of any sort to know that there were things going on with Riley. When I was around 17 wks pregnant with Riley and on bed rest for complete placenta privia, the Lord spoke so clearly to me. He told me then that Riley would be different, that she wouldn't be normal according to the standards of the world but not to fear for she is fearfully and wonderfully made, just as Psalm 139 tells me. He told me that she would teach us and show us things we had never known before, that she will lead others to Him by what she endures. We knew then, that whatever lay ahead was God's will for our lives and what a roller coaster it's been since then.
Funny how once the Lord Almighty confirms something to you, leads you to a divine moment with Him (and I've had many of these since Riley's birth) the enemy will come in to tear you down, causing doubt. I have struggled for months, more so now, that I have given Port a sick baby, a baby who is not normal or well, one that I cannot make well for there is no cure. I carried her for 9 months, she grew in my body. I did something wrong.
Since then, maybe I didn't fight hard enough. I've learned that with some doctors, not all, but some you must fight and fight hard. I fight like hell for Riley with each doctor that comes our way. I treat them with respect and try hard to show them that Christ dwells within me, but I fight.
After an entire week of no news on her brain MRI, I threatened to go to the neuro's office until he would see me. This approach is one I've used several times in the past with other doctors who don't feel Riley deserves their time. Still with no help I waited one more day. I left 9 messages over the course of a week. I then called back and said I would be at the office in the morning to take Riley's records and results, that JAG would escort me if I asked them to do so.
In the meantime I called Riley's Ped, knowing she has access to test results ect. I asked her to read them to me and explained that the neuro was too busy, unwilling to help. She read to me what maybe we expected but hurt beyond what words can express. There is an abnormality on Riley's brain that represents seizures. We do not know that Riley has or hasn't had seizures because they come in so many different types and forms. But there is a spot there. It looks as though it has been there since birth. My heart hit the floor.
"How will I tell my husband Lord? Am I to prepare for seizures, has she been having them without me knowing? Lord, has she suffered with this and now 27 months later we know about it? Why do the reports keep coming, why after Port is away? Why didn't the doctor call?" While many say to be thankful for answers, we are weary of them in ways.
"Lord you made her but nothing appears right; her lungs, her feet, her legs, her throat, her stomach, hear ears. She has tubes Lord, in her ears and stomach. She has braces on her feet Lord. She is in more therapies a week than I can make possible. Her brain. Her genetics. What else???? Forgive me Lord for questioning you. Forgive me for looking at your work as "not right." Forgive me for making it about me...how I feel as a failure in carrying her, how I could be doing so much better with my husband away. It's not at all about me but all about you Lord."
I don't understand this fallen world. I don't understand why doctors play around with the brain of a human being. I don't understand that lack of compassion as the neuro finally calls back to say, "we have something to discuss with you but it's no emergency. Can you come in to talk in 2 weeks?"
"Bring my husband home Lord, I need him. Bring him now. Take us to doctors that are filled with you. Bless those who pray constantly for us, who help us faithfully by serving and getting out of their boat. You make all things beautiful in your time and Riley is beautiful. She was made by the Creator, knit together in the secret place. Strengthen your people, that those who do not know you will. Forgive us. May we praise you and show thanksgiving in all things, may we bless your Holy Name in the midst of unbearable heartache. It's ok if you don't heal her, it's ok if you choose not too....but please give us the strength and courage to take the next step, whatever that may be."
Jesus, Jesus, Jesus, Jesus, Jesus, Jesus, Jesus.
Wednesday, July 6, 2011
I'm Just Sayin'
God is good! Amen? Amen! He is still in the business of miracles, healings, providing and moving mountains!
Port and I prayed healing and recovery for our finances and we got a deployment. Deployments though, mean extra income aka "deployment pay."
I expressed a need for leotards for Riley and 3, yes 3 were purchased from others as a gift to her!
I asked the word be put out that we need a crib. Riley was in such need of a safe place to sleep with enough room to accomodate her height and medical supplies that have to be in the bed with her. We were gifted a brand new crib this week. Yep, brand new! Not only that, but my awesome friends spent the entire afternoon here today putting it together and rearranging furniture so that all the bedrooms are open and fully funtional.
Two weeks ago we were sent a monetary gift from a precious family member, making it possible to stock up on groceries, put the big kids in a sport and buy bandages/gauze/tape that our insurance doesn't cover for Riley.
At that same time we were gifted with numerous gift cards from a sweet sweet family, making it possible to make purchases like fans (we don't have AC and it's in the mid 90's), onesies for Riley, summer clothes for the big kids along with numerous purchases to allow for more storage of Riley's medical supplies, toys ect.
Family and friends have been outpouring their time, money and resources to my husband. He's been receiving mail and boxes regularly. It's so important to keep moral up but also lifts some of the burden off of me when others send what he's needing.
My father in law, my dad, was here for an entire week. Though the visit wasn't exactly what we had planned, he was here to celebrate Carson turning 5. He was here to spend time with us, give us a few fun outings and share in all it takes to get thru the day around here.
Recently my 3 best friends in CO have moved. One is actually in the process of PCS'ing now. My entire close knit inner circle is leaving, my husband is already gone. I have prayed for a new friend. I now have quite a few... Alicia, you will never know this side of heaven what you do for the rest of us military wives. You are ALWAYS there, ready to pitch in and get your hands dirty with me. You are constantly showing us just how Jesus loves by your acceptance and your servants heart. Tesia, you have filled such a hole in my heart with your love and friendship to me and my family. There are no words to thank Nick and you for standing in the gap, for doing what my own husband would if he were here. I have laughed more with you than I have in so very long. I love you both so very much, more than you know.
We have answers for our sweet girl. It's not what we wanted but we are trusting in God's plan for us. We know His plans are better, His ways are more than ours.
A few girls from my church have gathered to help me with childcare for my big kids during Riley's appointments and therapies. What a relief and blessing it is for us all! Tiff, thank you for taking every single week faithfull for me:)
I could go on and on...I just may in my journal. It's so important to remember that in the midst of life, we have to count our blessings. We have to recall what the Lord has done for each of us every single day. This life can throw what it wants my way. It's ok really, I know how it all ends and victory is the Lord's.
God is so good, I'm just sayin'
Port and I prayed healing and recovery for our finances and we got a deployment. Deployments though, mean extra income aka "deployment pay."
I expressed a need for leotards for Riley and 3, yes 3 were purchased from others as a gift to her!
I asked the word be put out that we need a crib. Riley was in such need of a safe place to sleep with enough room to accomodate her height and medical supplies that have to be in the bed with her. We were gifted a brand new crib this week. Yep, brand new! Not only that, but my awesome friends spent the entire afternoon here today putting it together and rearranging furniture so that all the bedrooms are open and fully funtional.
Two weeks ago we were sent a monetary gift from a precious family member, making it possible to stock up on groceries, put the big kids in a sport and buy bandages/gauze/tape that our insurance doesn't cover for Riley.
At that same time we were gifted with numerous gift cards from a sweet sweet family, making it possible to make purchases like fans (we don't have AC and it's in the mid 90's), onesies for Riley, summer clothes for the big kids along with numerous purchases to allow for more storage of Riley's medical supplies, toys ect.
Family and friends have been outpouring their time, money and resources to my husband. He's been receiving mail and boxes regularly. It's so important to keep moral up but also lifts some of the burden off of me when others send what he's needing.
My father in law, my dad, was here for an entire week. Though the visit wasn't exactly what we had planned, he was here to celebrate Carson turning 5. He was here to spend time with us, give us a few fun outings and share in all it takes to get thru the day around here.
Recently my 3 best friends in CO have moved. One is actually in the process of PCS'ing now. My entire close knit inner circle is leaving, my husband is already gone. I have prayed for a new friend. I now have quite a few... Alicia, you will never know this side of heaven what you do for the rest of us military wives. You are ALWAYS there, ready to pitch in and get your hands dirty with me. You are constantly showing us just how Jesus loves by your acceptance and your servants heart. Tesia, you have filled such a hole in my heart with your love and friendship to me and my family. There are no words to thank Nick and you for standing in the gap, for doing what my own husband would if he were here. I have laughed more with you than I have in so very long. I love you both so very much, more than you know.
We have answers for our sweet girl. It's not what we wanted but we are trusting in God's plan for us. We know His plans are better, His ways are more than ours.
A few girls from my church have gathered to help me with childcare for my big kids during Riley's appointments and therapies. What a relief and blessing it is for us all! Tiff, thank you for taking every single week faithfull for me:)
I could go on and on...I just may in my journal. It's so important to remember that in the midst of life, we have to count our blessings. We have to recall what the Lord has done for each of us every single day. This life can throw what it wants my way. It's ok really, I know how it all ends and victory is the Lord's.
God is so good, I'm just sayin'
Friday, July 1, 2011
Riley's Road: Who She Is
This post is about our Riley girl and who she is.
Last Thursday I received a call from our Nero doc to bring Riley in first thing in the morning that next day. I knew something big was about to happen. Worried, anxious and full of dread, I hit my knees and prayed that Port would be calling soon. When he didn't, I wrote him to let him know I was taking Riley in and why.
After sitting in the Nero waiting room for 20 min a nurse came to tell me our doctor was running an hour late due to some emergencies at the hospital he was dealing with. I asked her why we were here, explained the call I had gotten and one look said it all. "Come with me dear, let's get you in a room for some privacy." She handed me form after form with Riley's name and birth date but I could understand none of them. They were full top to bottom with medical terms, one after another, doctor lingo. I cried from fear which seemed to be taking over quickly and then pulled it together to go back to the waiting area so Riley could play while we waited for the doctor.
I don't know how much time passed before our doctor came into the waiting room, gave me the same look the nurse did and escorted me into another room. Sitting there, in a cold and sterile room, without my husband, holding these forms was one of the hardest things I've ever had to do. For nearly 26 months Port and I have prayed without ceasing for answers for our girl, that someone could make sense of what she deals with. Finally it was coming to that but I was terrified.
I felt like I was in a fog, I could understand nothing, I could hear nothing. Until suddenly it came together and began to make sense. I asked the doctor to repeat to me what he was saying numerous times. I was mad, I was so very mad. Why Lord? Why our girl? Why after so long of fighting do we find this out just after our 3rd deployment has started?
"A long road ahead of her, time will tell, there is more testing to be done, more therapies, I can no longer treat her, you will get thru this, I can't give false hope, I don't want to alarm you, we're going to fight for her." All things he said to me. I only wanted to know if I did it. Did something happen in the pregnancy I should have seen or noticed? Did I miss something once she was born? Did I not fight other doctors hard enough when I told them all something was wrong? I know that "it" isn't my fault but haven't totally understood it either.
We don't want Riley known for a diagnosis, for her struggles, therefor, we will continue to give and respect her privacy as best we can. Those closest to us know what needs to be known.
Riley isn't going to just get better. There is no therapy, no surgery, no specialist that can take this or even ease it. Perhaps that's the hardest part of it all. I took the best organic prenatal vitamins we could afford during my pregnancy, I was on bed rest for much of it. She is fully vaccinated as are all of our kids, she's never been to childcare outside of her church class and a very few trusted friends/family. She was breastfed exclusively for 13 months and has taken an organic liquid vitamin for infants and other supplements to help her tiny body since she was far younger than she is now. I am extremely cautious about who is allowed around her, who she plays with and the kids in her classroom and have no problems removing her from situations and others when I don't feel she is safe or that she is at any risk. She gets sick like any other child but we take extreme caution in keeping her well as best we can. She has seen all of the best doctors in CO, she has been in the 2 top hospitals in the nation. She wears the best diapers, eats the best groceries and the best medical care money can buy. That being said, it doesn't matter much when your child isn't healthy. It's hard to know that very little to nothing you do can or would change anything you deal with now.
We've taken the last week to grieve and praise at the same time. We've let it sink in though some days it doesn't seem real. While we are so heartbroken at what can't be fixed, that all we've done hasn't helped, we praise our Father in heaven for His answers. For such a time as this, He has chosen to allow us to know. We have answers and I'm sure many more are to come but we have some answers. We have a diagnosis and we have the attention of the military and some doctors.
Riley is fearfully and wonderfully made just as Psalm 139 tells me. The God that I love, I live for and serve doesn't mess up. He made Riley just as she is for a divine reason. She is perfect in His image and quite perfect in mine as well. While she has had to endure much more than any 26 month should have too, I know that it could still be so much worse. It isn't terminal or life threatening, we just have to fight different. It doesn't change who Riley is and who we are. She belongs to the Lord and she is a precious gift to me, one that I don't deserve. Our faith doesn't waver but strengthens as we see that we are equipped for this. Our love for her and each other doesn't shrivel up but takes over and pushes us to fight harder.
It would be so easy to feel abandoned in this. It would be so easy to blame God, to blame doctors for what has been missed until now. I could even blame the lab results that came back, changing our lives with the same proof over and over. I can blame the symptoms, people, you name it. But there is no peace there for me.
We are so blessed to have Riley just as she is. We are so unbelievably blessed that God has chosen us to be her parents. It's hard at times, but on the hard days I try hard to remember this. Raising a special needs child is hard. It's no cake walk. People don't get it and some don't care. They don't take the same precautions you do and they lack at times in consideration for our child. But that's ok because in the midst of this storm I can see Him. I know that my God has a tight grip on my hand and He is leading me every single day in Riley's care, in parenting our big kids and in every other aspect of my life. He is gracious to me to give us wisdom, He is blessing us so much in meeting our every need and granting us peace when we want to panic.
She's Riley and God is doing great things thru her:)
Last Thursday I received a call from our Nero doc to bring Riley in first thing in the morning that next day. I knew something big was about to happen. Worried, anxious and full of dread, I hit my knees and prayed that Port would be calling soon. When he didn't, I wrote him to let him know I was taking Riley in and why.
After sitting in the Nero waiting room for 20 min a nurse came to tell me our doctor was running an hour late due to some emergencies at the hospital he was dealing with. I asked her why we were here, explained the call I had gotten and one look said it all. "Come with me dear, let's get you in a room for some privacy." She handed me form after form with Riley's name and birth date but I could understand none of them. They were full top to bottom with medical terms, one after another, doctor lingo. I cried from fear which seemed to be taking over quickly and then pulled it together to go back to the waiting area so Riley could play while we waited for the doctor.
I don't know how much time passed before our doctor came into the waiting room, gave me the same look the nurse did and escorted me into another room. Sitting there, in a cold and sterile room, without my husband, holding these forms was one of the hardest things I've ever had to do. For nearly 26 months Port and I have prayed without ceasing for answers for our girl, that someone could make sense of what she deals with. Finally it was coming to that but I was terrified.
I felt like I was in a fog, I could understand nothing, I could hear nothing. Until suddenly it came together and began to make sense. I asked the doctor to repeat to me what he was saying numerous times. I was mad, I was so very mad. Why Lord? Why our girl? Why after so long of fighting do we find this out just after our 3rd deployment has started?
"A long road ahead of her, time will tell, there is more testing to be done, more therapies, I can no longer treat her, you will get thru this, I can't give false hope, I don't want to alarm you, we're going to fight for her." All things he said to me. I only wanted to know if I did it. Did something happen in the pregnancy I should have seen or noticed? Did I miss something once she was born? Did I not fight other doctors hard enough when I told them all something was wrong? I know that "it" isn't my fault but haven't totally understood it either.
We don't want Riley known for a diagnosis, for her struggles, therefor, we will continue to give and respect her privacy as best we can. Those closest to us know what needs to be known.
Riley isn't going to just get better. There is no therapy, no surgery, no specialist that can take this or even ease it. Perhaps that's the hardest part of it all. I took the best organic prenatal vitamins we could afford during my pregnancy, I was on bed rest for much of it. She is fully vaccinated as are all of our kids, she's never been to childcare outside of her church class and a very few trusted friends/family. She was breastfed exclusively for 13 months and has taken an organic liquid vitamin for infants and other supplements to help her tiny body since she was far younger than she is now. I am extremely cautious about who is allowed around her, who she plays with and the kids in her classroom and have no problems removing her from situations and others when I don't feel she is safe or that she is at any risk. She gets sick like any other child but we take extreme caution in keeping her well as best we can. She has seen all of the best doctors in CO, she has been in the 2 top hospitals in the nation. She wears the best diapers, eats the best groceries and the best medical care money can buy. That being said, it doesn't matter much when your child isn't healthy. It's hard to know that very little to nothing you do can or would change anything you deal with now.
We've taken the last week to grieve and praise at the same time. We've let it sink in though some days it doesn't seem real. While we are so heartbroken at what can't be fixed, that all we've done hasn't helped, we praise our Father in heaven for His answers. For such a time as this, He has chosen to allow us to know. We have answers and I'm sure many more are to come but we have some answers. We have a diagnosis and we have the attention of the military and some doctors.
Riley is fearfully and wonderfully made just as Psalm 139 tells me. The God that I love, I live for and serve doesn't mess up. He made Riley just as she is for a divine reason. She is perfect in His image and quite perfect in mine as well. While she has had to endure much more than any 26 month should have too, I know that it could still be so much worse. It isn't terminal or life threatening, we just have to fight different. It doesn't change who Riley is and who we are. She belongs to the Lord and she is a precious gift to me, one that I don't deserve. Our faith doesn't waver but strengthens as we see that we are equipped for this. Our love for her and each other doesn't shrivel up but takes over and pushes us to fight harder.
It would be so easy to feel abandoned in this. It would be so easy to blame God, to blame doctors for what has been missed until now. I could even blame the lab results that came back, changing our lives with the same proof over and over. I can blame the symptoms, people, you name it. But there is no peace there for me.
We are so blessed to have Riley just as she is. We are so unbelievably blessed that God has chosen us to be her parents. It's hard at times, but on the hard days I try hard to remember this. Raising a special needs child is hard. It's no cake walk. People don't get it and some don't care. They don't take the same precautions you do and they lack at times in consideration for our child. But that's ok because in the midst of this storm I can see Him. I know that my God has a tight grip on my hand and He is leading me every single day in Riley's care, in parenting our big kids and in every other aspect of my life. He is gracious to me to give us wisdom, He is blessing us so much in meeting our every need and granting us peace when we want to panic.
She's Riley and God is doing great things thru her:)
Friday, June 10, 2011
A tightrope of Sorts
The last 10 days have felt like a tightrope walking exercise of sorts. Someone lurking around the house, seeing I was 1,500 over for an oil change, the internet going out, the fence nearly falling on one side, Riley's tube coming out TWICE, finances in the toilet (a deployment in the beginning stages will really do it). My doctor insists I'm depressed, Leea was up throwing up last night, every single night without fail Riley's pump malfunctions and I'm up with it, 7 appointments for Riley last week...and the list goes on.
I've told God I can't do it so many times over these last 10 days. I've told Port this can't be what God has for us, I'm done with deployment and it's hardly begun.
I try really hard to remain in a CONSTANT state of thankfulness, no matter how bad it seems at the time, no matter how hard it is to do. Truthfully, I have more blessings than I can even count. It blesses me that our kids see it too. When they pray before a meal and before bed, their prayers are forever long and getting longer. Each line starts with a "thank you Jesus for...".
It's God sense of humor I guess...what I've told Him I can't possibly do, is exactly what He's had me do. I had to put Riley's tube back in myself at 3 in the morning a few days ago. I cried and cried, doing it by flashlight, begging God to direct my hands and speak peace into me. I've burned tissue off her G-tube sight myself, praying that I didn't overdo it. I've taken cues from my husband when he's called that are hard to take, so hard to absorb. We speak in code and I must be careful to listen to every little detail so that I know what's happening with him.
After putting Rileys' tube back in myself I cried out to the Lord in anger. I was so mad that I had to do it, so mad that it's been one thing after another. So mad over a lot of things. He met me as He so faithfully does and reminded me to keep my focus. I literally looked up the the heavens and felt His peace. The events of a day are never what I think they might be, I am in a constant struggle not to be emotional and offended in my flesh but to see things from the persepective of Christ.
It's a tightrope really. I don't have time for the drama of life, to explain where I am today. I hardly have time to shower and can't remember what appointment is when despite my huge purse calender the size of a notebook. The Lord gives me peace as I need it and tells me to keep my focus. I walk the tightrope, keeping my head up, my eyes lifted to His face, keeping my balance and trying hard not to let the things of the world, the tactics of the enemy cause me to lose my balance, to wobble too much. As soon as my eyes are off of Him, I nearly fall. I can't fall because 3 sets of eyes, hearts and smiles depend on me. I am so careful of my time, making sure that what I do doesn't take my eyes off Him, that I'm not caught up in what I shouldn't be. I have to keep my focus.
I encourage you today, as the storms of life rage on, as the world pulls at us from every direction, to stay the course on your tightrope. Hold your arms out on both sides, let Him lead you. Keep your head up as not to look around at the distractions. Keep your eyes on Him and only Him. One step at a time, one wobble at a time, my eyes are lifted up and nothing else matters.
I've told God I can't do it so many times over these last 10 days. I've told Port this can't be what God has for us, I'm done with deployment and it's hardly begun.
I try really hard to remain in a CONSTANT state of thankfulness, no matter how bad it seems at the time, no matter how hard it is to do. Truthfully, I have more blessings than I can even count. It blesses me that our kids see it too. When they pray before a meal and before bed, their prayers are forever long and getting longer. Each line starts with a "thank you Jesus for...".
It's God sense of humor I guess...what I've told Him I can't possibly do, is exactly what He's had me do. I had to put Riley's tube back in myself at 3 in the morning a few days ago. I cried and cried, doing it by flashlight, begging God to direct my hands and speak peace into me. I've burned tissue off her G-tube sight myself, praying that I didn't overdo it. I've taken cues from my husband when he's called that are hard to take, so hard to absorb. We speak in code and I must be careful to listen to every little detail so that I know what's happening with him.
After putting Rileys' tube back in myself I cried out to the Lord in anger. I was so mad that I had to do it, so mad that it's been one thing after another. So mad over a lot of things. He met me as He so faithfully does and reminded me to keep my focus. I literally looked up the the heavens and felt His peace. The events of a day are never what I think they might be, I am in a constant struggle not to be emotional and offended in my flesh but to see things from the persepective of Christ.
It's a tightrope really. I don't have time for the drama of life, to explain where I am today. I hardly have time to shower and can't remember what appointment is when despite my huge purse calender the size of a notebook. The Lord gives me peace as I need it and tells me to keep my focus. I walk the tightrope, keeping my head up, my eyes lifted to His face, keeping my balance and trying hard not to let the things of the world, the tactics of the enemy cause me to lose my balance, to wobble too much. As soon as my eyes are off of Him, I nearly fall. I can't fall because 3 sets of eyes, hearts and smiles depend on me. I am so careful of my time, making sure that what I do doesn't take my eyes off Him, that I'm not caught up in what I shouldn't be. I have to keep my focus.
I encourage you today, as the storms of life rage on, as the world pulls at us from every direction, to stay the course on your tightrope. Hold your arms out on both sides, let Him lead you. Keep your head up as not to look around at the distractions. Keep your eyes on Him and only Him. One step at a time, one wobble at a time, my eyes are lifted up and nothing else matters.
Tuesday, May 24, 2011
His Great Name
"My God, how can this be what you have for me?" I've asked that very question so many times over the last few months. I've pondered, tried to figure, understand, wrestled, panicked and fought it all.
I debated on sharing but I feel the Lord has led me to do so. Just 2 nights ago I woke from a sound sleep in total panic. I couldn't breath, speak, think or even pray. I stayed this way for near 2 hours while my husband prayed for me, loved me, walked with me, let me cry on his shoulder and tried to talk it all out with me. I know that panic does not come from the Lord, such anxiety that I can't move is not from him. He is a God of order, peace, strength.
In a matter of days, the reality of the wars going on overseas will hit all to close to home for my family yet again. "My God, how can this be what you have for us?"
Riley's tube feedings have now been increased to day feedings, longer night feedings and followed by the finding of a severe dairy allergy. 10 days on antibiotics have done nothing to control the raging infection at her G-tube site. For 2 weeks straight, we have managed 4 appointments a week. We have 3 all in one day, tomorrow, they come on the heels of 2 prior appointments this week. "My God, how can this be what you have for our girl? Will it ever get better? Can't you see I'm already stretched so far? How much more must our hearts break? What are you doing?"
My grandparents who disowned me long ago, still refuse to see their grandchildren, haven't seen them in nearly 5 yrs and have never seen Riley or have any contact with me at all, even in the midst of an incurable cancer that has struck their lives in such a tragic way, I still have no idea what I did. "My God, how can this be what you have for me? What did I do?"
Pain I thought I would never feel, a conversation I never thought I would have to have, happened indeed and has left a huge hole in my heart. "My God, how can this be what you have for me?"
Then I realized, it's all at the sound of His name. I don't have to resort to panic or anxiety. I don't have to understand or figure it out. I just have to call on His name. I just have to look up towards Him. I just have to choose to keep praising Him in the midst of this never ending heartache, this nightmare I am stuck in. I just have to choose to point others to Him as best as I can.
God has such funny ways at times. A box comes from a dear and very loved friend at the most perfect time. Yet another message on our FB telling us what an inspiration we are, how much we reflect Christ, how we said something or shared a verse and personal experience that made such an impact on someone else's life, how hearing Riley's story has given them a stronger walk, more to be thankful for. He so mercifully chooses to give me such amazing people who love us, to get us, who in such obedience to Him, show us how much we are cared and prayed for.
Just practice saying His name for yourself a few times....right now. Jesus, Jesus, Jesus, Jesus, Jesus. You are high and lifted up. Every fear has no place at the sound of your name.
He is it friends. He is all there is and all that we need. Lost are saved, find their way at the sound of your great name. All condemned feel so shame at the sound of your great name. The enemy, he has to leave at the sound of your great name.
Listen the words of this awesome song and sing of His name for yourself:)
I debated on sharing but I feel the Lord has led me to do so. Just 2 nights ago I woke from a sound sleep in total panic. I couldn't breath, speak, think or even pray. I stayed this way for near 2 hours while my husband prayed for me, loved me, walked with me, let me cry on his shoulder and tried to talk it all out with me. I know that panic does not come from the Lord, such anxiety that I can't move is not from him. He is a God of order, peace, strength.
In a matter of days, the reality of the wars going on overseas will hit all to close to home for my family yet again. "My God, how can this be what you have for us?"
Riley's tube feedings have now been increased to day feedings, longer night feedings and followed by the finding of a severe dairy allergy. 10 days on antibiotics have done nothing to control the raging infection at her G-tube site. For 2 weeks straight, we have managed 4 appointments a week. We have 3 all in one day, tomorrow, they come on the heels of 2 prior appointments this week. "My God, how can this be what you have for our girl? Will it ever get better? Can't you see I'm already stretched so far? How much more must our hearts break? What are you doing?"
My grandparents who disowned me long ago, still refuse to see their grandchildren, haven't seen them in nearly 5 yrs and have never seen Riley or have any contact with me at all, even in the midst of an incurable cancer that has struck their lives in such a tragic way, I still have no idea what I did. "My God, how can this be what you have for me? What did I do?"
Pain I thought I would never feel, a conversation I never thought I would have to have, happened indeed and has left a huge hole in my heart. "My God, how can this be what you have for me?"
Then I realized, it's all at the sound of His name. I don't have to resort to panic or anxiety. I don't have to understand or figure it out. I just have to call on His name. I just have to look up towards Him. I just have to choose to keep praising Him in the midst of this never ending heartache, this nightmare I am stuck in. I just have to choose to point others to Him as best as I can.
God has such funny ways at times. A box comes from a dear and very loved friend at the most perfect time. Yet another message on our FB telling us what an inspiration we are, how much we reflect Christ, how we said something or shared a verse and personal experience that made such an impact on someone else's life, how hearing Riley's story has given them a stronger walk, more to be thankful for. He so mercifully chooses to give me such amazing people who love us, to get us, who in such obedience to Him, show us how much we are cared and prayed for.
Just practice saying His name for yourself a few times....right now. Jesus, Jesus, Jesus, Jesus, Jesus. You are high and lifted up. Every fear has no place at the sound of your name.
He is it friends. He is all there is and all that we need. Lost are saved, find their way at the sound of your great name. All condemned feel so shame at the sound of your great name. The enemy, he has to leave at the sound of your great name.
Listen the words of this awesome song and sing of His name for yourself:)
Saturday, May 14, 2011
Q&A and Riley pics
So in the last week we've had tons and tons of questions about Riley, her care, how she is, what has to be done for her now ect. So, I decided to try and answer them all on our family blog! In searching the internet for pic's of feeding tubes ect., I found it really hard to find them....so we've decided also, to include some pic's of what goes on here....to inform others and give you an idea of what goes on in Riley's life now.
(this is the pump used for Riley's feedings on a stand. The formula bag is attached at the top of the pole, the tube comes from the bag, to the pump, to Riley's stomach. The pump runs all night from 9-5, giving Riley an all night feeding of 80z. 1 ounce runs per hour.)
(The bandages you see cover her 3 incisions made during surgery, marking where different tools were used to perform her surgery. The port you see, poking out of her stomach is the actual G-tube. Because surgery was only a week ago, she still has redness and a lot of tenderness. The G-tube opens with a small lid feature, allowing me to insert the feeding tube. The formula goes directly into her stomach thru this port.)
Riley can have whatever she will eat by mouth during the day. This is done to keep her from being dependent on the feeding tube, to encourage her oral eating and to help her poor mouth motor skills. If she gains some weight, eats enough calories during the day, we will only have to do night feedings. If she continues not to gain weight and thrive, we will have to incorporate day feedings as well.
Riley no longer sleeps in a bed, but a pack n' play now. This is done so that she is unable to get up in the night and move from her bed to ours. If she were to try this with the G-tube in, she could seriously hurt herself, detaching her stomach or worse. This way, she can't get out of bed while getting a feeding and ensuring her safety.
We have a special back pack that can be used for feedings on the go. It's great for her because she can be up playing or at an outing while still staying on her very strict feeding schedule.
I have to log every single food she eats, keeping a calorie count, making sure that she's getting the calories she needs and being sure that her formula dose she gets is exactly what her body needs.
She is tolerating the formula perfectly.
Leea and Carson pay little attention to the actual G-tube but understand well why Riley has it and what it does for her. We spent a lot of time talking to them before the surgery, reassuring them and educating them on what was happening. They are very careful with her but don't worry or get upset about the tube at all.
Riley will likely have the G-tube for 2 yrs.
I can cover the G-tube site with gauze when we go out to ensure her safety and to keep the site clean and protected from others.
She is not able to do things on her stomach because she could really harm herself here too, causing damage to the site.
She will see the surgeon in 2 weeks to have the stitches removed. Her recovery time is 6-8 weeks.
We are doing well, learning of this new life, of what Riley needs and how to do it. Port has been nothing short of amazing, helping and stepping in. We've been a real team with her. I'm slowly coming to terms with the G-tube, seeing the good it does and will continue to do for Riley. It's a very emotional journey.
The hardest part for me, has been to see and understand that some people aren't comfortable with Riley,that she will be treated differently by some, that people we love don't understand and clearly don't want to understand, so they stay away and are afraid to visit or be around her.This reality became just that during our hospital time with her. It is beyond difficult to accept that normal isn't what God has for our family or for Riley anymore. I'm slowly allowing Him to remove the desire for normal, and accepting with joy what He does have for us. After all, we're all works and I truly do love these days. I will take and love Riley for who she is, regardless of what tubes, procedures, therapies ect she has to endure. She is our miracle, our perfect gift from God to show us how much He loves us:)
(this is the pump used for Riley's feedings on a stand. The formula bag is attached at the top of the pole, the tube comes from the bag, to the pump, to Riley's stomach. The pump runs all night from 9-5, giving Riley an all night feeding of 80z. 1 ounce runs per hour.)
(The bandages you see cover her 3 incisions made during surgery, marking where different tools were used to perform her surgery. The port you see, poking out of her stomach is the actual G-tube. Because surgery was only a week ago, she still has redness and a lot of tenderness. The G-tube opens with a small lid feature, allowing me to insert the feeding tube. The formula goes directly into her stomach thru this port.)
Riley can have whatever she will eat by mouth during the day. This is done to keep her from being dependent on the feeding tube, to encourage her oral eating and to help her poor mouth motor skills. If she gains some weight, eats enough calories during the day, we will only have to do night feedings. If she continues not to gain weight and thrive, we will have to incorporate day feedings as well.
Riley no longer sleeps in a bed, but a pack n' play now. This is done so that she is unable to get up in the night and move from her bed to ours. If she were to try this with the G-tube in, she could seriously hurt herself, detaching her stomach or worse. This way, she can't get out of bed while getting a feeding and ensuring her safety.
We have a special back pack that can be used for feedings on the go. It's great for her because she can be up playing or at an outing while still staying on her very strict feeding schedule.
I have to log every single food she eats, keeping a calorie count, making sure that she's getting the calories she needs and being sure that her formula dose she gets is exactly what her body needs.
She is tolerating the formula perfectly.
Leea and Carson pay little attention to the actual G-tube but understand well why Riley has it and what it does for her. We spent a lot of time talking to them before the surgery, reassuring them and educating them on what was happening. They are very careful with her but don't worry or get upset about the tube at all.
Riley will likely have the G-tube for 2 yrs.
I can cover the G-tube site with gauze when we go out to ensure her safety and to keep the site clean and protected from others.
She is not able to do things on her stomach because she could really harm herself here too, causing damage to the site.
She will see the surgeon in 2 weeks to have the stitches removed. Her recovery time is 6-8 weeks.
We are doing well, learning of this new life, of what Riley needs and how to do it. Port has been nothing short of amazing, helping and stepping in. We've been a real team with her. I'm slowly coming to terms with the G-tube, seeing the good it does and will continue to do for Riley. It's a very emotional journey.
The hardest part for me, has been to see and understand that some people aren't comfortable with Riley,that she will be treated differently by some, that people we love don't understand and clearly don't want to understand, so they stay away and are afraid to visit or be around her.This reality became just that during our hospital time with her. It is beyond difficult to accept that normal isn't what God has for our family or for Riley anymore. I'm slowly allowing Him to remove the desire for normal, and accepting with joy what He does have for us. After all, we're all works and I truly do love these days. I will take and love Riley for who she is, regardless of what tubes, procedures, therapies ect she has to endure. She is our miracle, our perfect gift from God to show us how much He loves us:)
Sunday, May 8, 2011
48ish hours after surgery
I'm sitting in the hospital room unable to sleep and thinking that just maybe my thoughts are gathered enough to type them out.
We are 48ish hours out of the surgeries we have been waiting for, for a long time. Let me start from the day of: Surgery was at 8:30 because the doctor decided to take Riley back a bit early. Though Riley has had a few surgeries before, I never get used to handing my baby over for an operation of any degree. The surgeon, whom we met 2 wks prior looked at me and said, "It's ok. I will take care of her as though she was my own." I cried and handed Riley to Port, who would be with her in the operating room until she feel asleep from the anesthesia. The next 2 1/2 hours were a blur of text messages, phone calls, tears, fears, hand holding and desperate prayers. I wondered if we had made the right choice by fighting for these surgeries for so long. I was haunted and still am, that there is no turning back.
The nurse came to get us and take us to Riley after the surgery was over. Just as they woke Riley, she yanked the tube going to her lungs out and nearly got her IV out of her hand as well. We met another nurse who handed me Riley and ushered Port and I to 2 chairs in the PICU unit. I cried and tried my best to comfort Riley. She has always had such a hard time coming out of anesthesia and is so afraid when she wakes. Nurses were everywhere, untangling cords, taking down numbers, hooking her to oxygen, taking her temp ect. I asked to see her stomach. Port looked at me as to make sure and I nodded yes. The nurse lifted Riley's gown and showed me what there was to see. I fell apart and cried as I never had before. I begged for the surgeon to come out, take her back to the OR and remove the tube. I begged Port to have it taken out. I cried more and pleaded with Riley that one day she would understand the choice we had to make, that one day we would see the benefit from the G-tube but even I wasn't so sure. For now, it's a scary monster that has invaded the tummy of my beautiful baby.
In the 2 wks that we had to prepare for the surgery I looked all over the internet for pictures of a baby with a G-tube. I thought maybe if I knew what to expect, I could deal better, encourage Riley more and generally educate myself. While I didn't do much reading on feeding tubes, I knew a little but never was able to find pictures.
The surgeon came out, I kept my cool as best as I could and listened to his orders for Riley for the next 24 hrs. He assured us that the procedures had gone text book, she looked excellent and even told us of her bright recovery. He told me we would need to of course continue her asthma meds but that she no longer needed the reflux meds. "She's not refluxing anymore", he said. I have dreamed of hearing those words. For Riley, it's so much more than reflux. It's killing her lungs, bringing constant pain to her ears, preventing her from eating, literally torturing her tiny body. I knew it was a step in the right direction and that our fighting had been blessed with favor from the Lord.
The next 24+ hours were a blur. Many texts, calls, FB messages,dear friends, doctors and nurses filled our tiny hospital room. Lots of checking her sites, monitoring pain, morphine, trying to get her to respond to our voices and more desperation. I was desperate from a sign from God that we had made the right choice, though I knew we had. I watched her every moment, never leaving her bed side, waiting for her to wake, to show me a sign of pain or comfort. Being clueless in all of it left me feeling pretty anxious for anything and nothing that she would show.
She slept well the first night, heavily medicated. We opted for every dose of everything they would give her to keep her comfortable. We held her hands and cried over her as she slept. I would look to Port's eyes for reassurance and comfort. I begged God to send His peace.
The next afternoon we began to stretch out the morphine doses from every 2 hours to every 3. We sat her up in the bed when she would wake and supported her on pillows when she slept. I held her for hours in my arms taking comfort in every next breath, every squeeze of my finger she gave. She would look at me, look at those talking to her but remained expressionless. There was no emotion on her face at all, no hint of her comprehending even our voices for the first 2 days. It was the most heartbreaking ordeal I have ever been thru as a mother. A dear sister in Christ came to see us, and I knew it was safe to break down with her. We spent much time crying at Riley's bedside for what our child must endure, trying to find God's plan and purpose in it all.
I still don't understand it and I may never. Though many go through so much worse, seeing a tube coming from my child's stomach is the harshest thing to me. I don't understand why she hasn't been well, why it must be so hard for her. Her ordeals don't seem morally ok to me, they don't seem to fit for our beautiful girl. I hear others talk at times about not wanting to vaccinate their kids bc of shots, of allergy testing being so invasive, how anesthesia can be the worst, and I wish it were that simple for our girl. I guess it's been somewhat of a grieving time for Port and I. We've had a lot of time together that I'm so grateful for. We've had privacy but the love from others who have come to visit at the same time. I've asked God why many, many times. How is it that the world we live in is in constant war and babies have tubes coming from their bodies to perform what they own body can't, to sustain them? How can that be?
Most recently Riley began to sit on her own. She has stood twice for several minutes with our help. With this surgery, the internal organs go numb and so the recovery is long and slow...6-8 wks actually. She's smiling and saying mama and dada. She reaches for our hands each time a nurse or doctor enters the room. She has become alert enough at times to watch Elmo or watch the bubbles we blow float around her bed. She is happy to see Leea and Carson when they are here to visit and likes to look out her window. We've done slow wagon rides around the Peds ward, visited the playroom briefly, blown bubbles, played with a pinwheel, done puzzles and sang songs. I've seen tiny glimpses of our girl come back. She shows others her stomach when they enter the room as if to say, "Hey, look at me now. It's going to be ok, see what I've come thru and how strong I am."
Nichole
We are 48ish hours out of the surgeries we have been waiting for, for a long time. Let me start from the day of: Surgery was at 8:30 because the doctor decided to take Riley back a bit early. Though Riley has had a few surgeries before, I never get used to handing my baby over for an operation of any degree. The surgeon, whom we met 2 wks prior looked at me and said, "It's ok. I will take care of her as though she was my own." I cried and handed Riley to Port, who would be with her in the operating room until she feel asleep from the anesthesia. The next 2 1/2 hours were a blur of text messages, phone calls, tears, fears, hand holding and desperate prayers. I wondered if we had made the right choice by fighting for these surgeries for so long. I was haunted and still am, that there is no turning back.
The nurse came to get us and take us to Riley after the surgery was over. Just as they woke Riley, she yanked the tube going to her lungs out and nearly got her IV out of her hand as well. We met another nurse who handed me Riley and ushered Port and I to 2 chairs in the PICU unit. I cried and tried my best to comfort Riley. She has always had such a hard time coming out of anesthesia and is so afraid when she wakes. Nurses were everywhere, untangling cords, taking down numbers, hooking her to oxygen, taking her temp ect. I asked to see her stomach. Port looked at me as to make sure and I nodded yes. The nurse lifted Riley's gown and showed me what there was to see. I fell apart and cried as I never had before. I begged for the surgeon to come out, take her back to the OR and remove the tube. I begged Port to have it taken out. I cried more and pleaded with Riley that one day she would understand the choice we had to make, that one day we would see the benefit from the G-tube but even I wasn't so sure. For now, it's a scary monster that has invaded the tummy of my beautiful baby.
In the 2 wks that we had to prepare for the surgery I looked all over the internet for pictures of a baby with a G-tube. I thought maybe if I knew what to expect, I could deal better, encourage Riley more and generally educate myself. While I didn't do much reading on feeding tubes, I knew a little but never was able to find pictures.
The surgeon came out, I kept my cool as best as I could and listened to his orders for Riley for the next 24 hrs. He assured us that the procedures had gone text book, she looked excellent and even told us of her bright recovery. He told me we would need to of course continue her asthma meds but that she no longer needed the reflux meds. "She's not refluxing anymore", he said. I have dreamed of hearing those words. For Riley, it's so much more than reflux. It's killing her lungs, bringing constant pain to her ears, preventing her from eating, literally torturing her tiny body. I knew it was a step in the right direction and that our fighting had been blessed with favor from the Lord.
The next 24+ hours were a blur. Many texts, calls, FB messages,dear friends, doctors and nurses filled our tiny hospital room. Lots of checking her sites, monitoring pain, morphine, trying to get her to respond to our voices and more desperation. I was desperate from a sign from God that we had made the right choice, though I knew we had. I watched her every moment, never leaving her bed side, waiting for her to wake, to show me a sign of pain or comfort. Being clueless in all of it left me feeling pretty anxious for anything and nothing that she would show.
She slept well the first night, heavily medicated. We opted for every dose of everything they would give her to keep her comfortable. We held her hands and cried over her as she slept. I would look to Port's eyes for reassurance and comfort. I begged God to send His peace.
The next afternoon we began to stretch out the morphine doses from every 2 hours to every 3. We sat her up in the bed when she would wake and supported her on pillows when she slept. I held her for hours in my arms taking comfort in every next breath, every squeeze of my finger she gave. She would look at me, look at those talking to her but remained expressionless. There was no emotion on her face at all, no hint of her comprehending even our voices for the first 2 days. It was the most heartbreaking ordeal I have ever been thru as a mother. A dear sister in Christ came to see us, and I knew it was safe to break down with her. We spent much time crying at Riley's bedside for what our child must endure, trying to find God's plan and purpose in it all.
I still don't understand it and I may never. Though many go through so much worse, seeing a tube coming from my child's stomach is the harshest thing to me. I don't understand why she hasn't been well, why it must be so hard for her. Her ordeals don't seem morally ok to me, they don't seem to fit for our beautiful girl. I hear others talk at times about not wanting to vaccinate their kids bc of shots, of allergy testing being so invasive, how anesthesia can be the worst, and I wish it were that simple for our girl. I guess it's been somewhat of a grieving time for Port and I. We've had a lot of time together that I'm so grateful for. We've had privacy but the love from others who have come to visit at the same time. I've asked God why many, many times. How is it that the world we live in is in constant war and babies have tubes coming from their bodies to perform what they own body can't, to sustain them? How can that be?
Most recently Riley began to sit on her own. She has stood twice for several minutes with our help. With this surgery, the internal organs go numb and so the recovery is long and slow...6-8 wks actually. She's smiling and saying mama and dada. She reaches for our hands each time a nurse or doctor enters the room. She has become alert enough at times to watch Elmo or watch the bubbles we blow float around her bed. She is happy to see Leea and Carson when they are here to visit and likes to look out her window. We've done slow wagon rides around the Peds ward, visited the playroom briefly, blown bubbles, played with a pinwheel, done puzzles and sang songs. I've seen tiny glimpses of our girl come back. She shows others her stomach when they enter the room as if to say, "Hey, look at me now. It's going to be ok, see what I've come thru and how strong I am."
Nichole
Thursday, April 21, 2011
Riley's Road: g-tube and reflux surgeries
Lately, I can't remember what I've blogged about and what I haven't. I'm tired to put it mildly and life is about to get much more hectic for us.
2 weeks ago we saw a feeding therapist, who is amazing, compassionate, can finish my sentences, and seems to get it better than any other doctor/therapist thus far. After an hour and a half of meeting with her and 3 of her other respected colleges, she shared with me that Riley must have a feeding tube. She feels Riley is a huge red flag for a severe dairy allergy. Dairy, because on most days, it's the only food group Riley actually consumes anything of. Riley has very poor mouth function, meaning that she is not able to properly chew and swallow her food. The severe reflux (that most doctors haven't felt is severe enough) has eaten some enamel off of Riley's back teeth. If that isn't severe, I don't know what is. 55 acidic reflux episodes in 24 hrs seems pretty severe to me. Wait to grow out of it? You want me to WAIT??? I'm not the most patient of people to begin with, but what these "doctors" have failed to see is that in the process of waiting to see if she will grow out of the reflux, Riley is the one who suffers. She is the one who pays by constantly having reflux, aspirating to her lungs and ears.In the meantime, as we wait, doctors tell me it will take at least 6 months to get her lungs fully clean, strong and functioning after the reflux is gone. Thanks, but at this point, I decided to keep pushing for a doctor with warm blood running thru their veins, who could care a bit.
Because of the severity of the reflux, the severity of Riley's lung issues, she needs a g-tube, otherwise known as a feeding tube. We need to bypass her lungs, get nutrition into her tiny body and take her off dairy totally.
Several people who see Riley often have offered me their advice that they don't think a g-tube is the answer, it's too soon, she needs more time to grow, it's so drastic, there's no going back ect. Well in one respect, they are right. She isn't growing and that's the problem. Riley has gained less than 1 whole pound since January. What she is consuming is going up and down her poor throat a million times a day, coming all the way to the top of her throat and staying for as long as 3 minutes at a time, going into her lungs and to her ears. I have to find a way to get nutrition into her body, bypassing her lungs. I've got to find a way to help her grow, to feel better. I'm convinced that Riley doesn't know what it's like to feel good, to be full. She eats random bits of food, usually 2 bites 3-4 times a day. It's not enough to ward off the hunger pains she feels.
Truthfully though, it sucks. I can't believe we are having these talks with therapists...and why are the therapists the ones moving on her behalf and not the doctors???? I am so very saddened that there is no other way than to put a tube thru her abdomen, that I will have to tube feed her. On May 6th, there will be a tube used to feed my daughter. A tube. A tube.
During the same operation, the surgeon will perform the reflux surgery, attempting to correct the reflux issue. I'm told he can take up to half of her stomach to use for this operation. Half??!!
I wish I didn't know words like MRSA, g-tube, reflux surgery, PICC line, in home care nurses, leg braces, ear tubes, staff, therapies, mental disorders, high developmental delays, chronic....
I'm terrified of the the surgery. Terrified to put it mildly, again. I know it's what is needed. I know because the Lord spoke it to me months and months ago. I knew it was coming and have had a peace...until it has actually started to happen.
What if Riley hates me? What if I've done the surgeries and therapies and all else to her? What if I've caused her pain and being uncomfortable? What if I can't care for her properly? What if I can't keep homeschooling? What if I drown once my husband deploys AGAIN? What if people treat her harshly because she's different? What if people don't get us and our life? What if no one helps? There are a million what if's that I just keep trying to fight.
Please pray for me, for my focus, for my peace. Please continue your prayers for my family. We leave this weekend for 10 days to the East Coast to visit family. Traveling is so SO hard with Riley. Please pray for my husband. It hurts his heart in ways that hurt mine, that his baby girl must go thru so much. Please pray for our marriage, that is becomes stronger in what tears most. Please pray for our big kids. They try hard to understand and show love and compassion but I fear they are drowning in appointments, in Riley's care and I don't want to miss them, to overlook them. Please pray for our Riley girl. There is so much she doesn't understand and I know she's tired of appointments and testing. Please pray she knows how loved she is, how perfect in Him that she is, how it's going to be ok...one way or another.
Nichole
2 weeks ago we saw a feeding therapist, who is amazing, compassionate, can finish my sentences, and seems to get it better than any other doctor/therapist thus far. After an hour and a half of meeting with her and 3 of her other respected colleges, she shared with me that Riley must have a feeding tube. She feels Riley is a huge red flag for a severe dairy allergy. Dairy, because on most days, it's the only food group Riley actually consumes anything of. Riley has very poor mouth function, meaning that she is not able to properly chew and swallow her food. The severe reflux (that most doctors haven't felt is severe enough) has eaten some enamel off of Riley's back teeth. If that isn't severe, I don't know what is. 55 acidic reflux episodes in 24 hrs seems pretty severe to me. Wait to grow out of it? You want me to WAIT??? I'm not the most patient of people to begin with, but what these "doctors" have failed to see is that in the process of waiting to see if she will grow out of the reflux, Riley is the one who suffers. She is the one who pays by constantly having reflux, aspirating to her lungs and ears.In the meantime, as we wait, doctors tell me it will take at least 6 months to get her lungs fully clean, strong and functioning after the reflux is gone. Thanks, but at this point, I decided to keep pushing for a doctor with warm blood running thru their veins, who could care a bit.
Because of the severity of the reflux, the severity of Riley's lung issues, she needs a g-tube, otherwise known as a feeding tube. We need to bypass her lungs, get nutrition into her tiny body and take her off dairy totally.
Several people who see Riley often have offered me their advice that they don't think a g-tube is the answer, it's too soon, she needs more time to grow, it's so drastic, there's no going back ect. Well in one respect, they are right. She isn't growing and that's the problem. Riley has gained less than 1 whole pound since January. What she is consuming is going up and down her poor throat a million times a day, coming all the way to the top of her throat and staying for as long as 3 minutes at a time, going into her lungs and to her ears. I have to find a way to get nutrition into her body, bypassing her lungs. I've got to find a way to help her grow, to feel better. I'm convinced that Riley doesn't know what it's like to feel good, to be full. She eats random bits of food, usually 2 bites 3-4 times a day. It's not enough to ward off the hunger pains she feels.
Truthfully though, it sucks. I can't believe we are having these talks with therapists...and why are the therapists the ones moving on her behalf and not the doctors???? I am so very saddened that there is no other way than to put a tube thru her abdomen, that I will have to tube feed her. On May 6th, there will be a tube used to feed my daughter. A tube. A tube.
During the same operation, the surgeon will perform the reflux surgery, attempting to correct the reflux issue. I'm told he can take up to half of her stomach to use for this operation. Half??!!
I wish I didn't know words like MRSA, g-tube, reflux surgery, PICC line, in home care nurses, leg braces, ear tubes, staff, therapies, mental disorders, high developmental delays, chronic....
I'm terrified of the the surgery. Terrified to put it mildly, again. I know it's what is needed. I know because the Lord spoke it to me months and months ago. I knew it was coming and have had a peace...until it has actually started to happen.
What if Riley hates me? What if I've done the surgeries and therapies and all else to her? What if I've caused her pain and being uncomfortable? What if I can't care for her properly? What if I can't keep homeschooling? What if I drown once my husband deploys AGAIN? What if people treat her harshly because she's different? What if people don't get us and our life? What if no one helps? There are a million what if's that I just keep trying to fight.
Please pray for me, for my focus, for my peace. Please continue your prayers for my family. We leave this weekend for 10 days to the East Coast to visit family. Traveling is so SO hard with Riley. Please pray for my husband. It hurts his heart in ways that hurt mine, that his baby girl must go thru so much. Please pray for our marriage, that is becomes stronger in what tears most. Please pray for our big kids. They try hard to understand and show love and compassion but I fear they are drowning in appointments, in Riley's care and I don't want to miss them, to overlook them. Please pray for our Riley girl. There is so much she doesn't understand and I know she's tired of appointments and testing. Please pray she knows how loved she is, how perfect in Him that she is, how it's going to be ok...one way or another.
Nichole
Tuesday, April 19, 2011
Faith Choices
Bitter, angry, disgusted....my feelings for doctors. They have come along side of me so many times, offering to help, promising solutions only to let me down, drop our case, and just disappear.
I cry. I cry while driving, while in the shower, while folding laundry, while cooking dinner, while lying in bed waiting for the next day to come. I am angry, I am so mad and I cry. I cry for our girl. It doesn't seem fair that she would go thru so much, that her road be so long.
I stress. I stress over each appointment. I stress over the latest report, over the deployment that will be taking my husband far from home when I need him so badly. I stress over surgeries, over many ?'s from loved ones, I stress over every aspect of life for our life isn't what I thought it would be....it's no where near it.
My doctor says I'm depressed and handed me a bottle of anti-depressants faster than I could say, "no thanks doc." I don't agree.
I say that I have the freedom to approach the throne of Christ Jesus with ALL things (Hebrews 4:16). That means, all my emotions, all my fears, all my worries and what if's. That means I can ask Him questions I don't have the answers too, I can talk to Him of the most intricate details involving Riley's care. I can bring it ALL to Him. His shoulders can bear the load far better than mine. He's not worried of the latest report, of the surgeries coming, of the deployment. Nothing shocks Him off the throne so why do I then carry it on MY shoulders instead of allowing Jesus to take it on HIS?
I'm reading this amazing book called Faith In The Night Seasons, by Nancy Missler. The book challenges and encourages you in the midst of your "night season" to see Jesus at real work in your life, to learn how to handle the hard stuff we deal with in life while being able to truly praise and glorify the Father. Nancy Missler, reminds you that everything in life comes from the Father, including the pain and hardships as our lives are God- filtered. Every time I pick it up, I'm so thankful to my dear friend who suggested I read it as she placed it in my hands:)
I'm reading now about "faith choices" and "emotional choices" and how I have a choice in which I will choose to act upon. Faith choices mean that in the midst of the yuck, in my tears and fears, I'm choosing to trust Christ and His plan for my life (Jeremiah 29:11). I recognize that Riley is His and that He has gifted her to me, trusting me with her care. He has a mighty plan for Riley's life and has planned for every event thus far. I can trust Him, I can choose to turn my eyes to Him, I can put my faith and confidence in Him, rather than in doctors. I can choose to do my best with her care, giving my all to glorify Him by serving my family.
Emotional choices are what we feel as human and any action that involves our flesh. When I stress, freak out, melt down, fall apart, throw my hands in the air....it's all emotional choices. None of these glorify the Father, none show my faith in Him to others but rather allow me a pity party.
I encourage you today not to be ashamed of the emotions you feel but to really ask yourself in the moment what kind of a choice you are making. Are you looking to the Father, making a faith choice? Are you choosing to give Him glory, thankful that He is in control(James 1:1-2) Are you praising Him, looking for the positive in it all? Or....are you lashing out and giving up? Are you giving way to fear and allowing the enemy a foothold? Are you choosing to be idle, not serving, not giving of your time and resources to help others? Are you shaken by your circumstances and unable to see clearly (Psalms 16:8)?
We have a choice...one moment at a time, one day at a time to make a faith choice. We can choose not to give in, but to persevere in running the good race (Hebrews 12:1, James 1:3). I encourage you today to make every choice you make, a faith choice:)
I cry. I cry while driving, while in the shower, while folding laundry, while cooking dinner, while lying in bed waiting for the next day to come. I am angry, I am so mad and I cry. I cry for our girl. It doesn't seem fair that she would go thru so much, that her road be so long.
I stress. I stress over each appointment. I stress over the latest report, over the deployment that will be taking my husband far from home when I need him so badly. I stress over surgeries, over many ?'s from loved ones, I stress over every aspect of life for our life isn't what I thought it would be....it's no where near it.
My doctor says I'm depressed and handed me a bottle of anti-depressants faster than I could say, "no thanks doc." I don't agree.
I say that I have the freedom to approach the throne of Christ Jesus with ALL things (Hebrews 4:16). That means, all my emotions, all my fears, all my worries and what if's. That means I can ask Him questions I don't have the answers too, I can talk to Him of the most intricate details involving Riley's care. I can bring it ALL to Him. His shoulders can bear the load far better than mine. He's not worried of the latest report, of the surgeries coming, of the deployment. Nothing shocks Him off the throne so why do I then carry it on MY shoulders instead of allowing Jesus to take it on HIS?
I'm reading this amazing book called Faith In The Night Seasons, by Nancy Missler. The book challenges and encourages you in the midst of your "night season" to see Jesus at real work in your life, to learn how to handle the hard stuff we deal with in life while being able to truly praise and glorify the Father. Nancy Missler, reminds you that everything in life comes from the Father, including the pain and hardships as our lives are God- filtered. Every time I pick it up, I'm so thankful to my dear friend who suggested I read it as she placed it in my hands:)
I'm reading now about "faith choices" and "emotional choices" and how I have a choice in which I will choose to act upon. Faith choices mean that in the midst of the yuck, in my tears and fears, I'm choosing to trust Christ and His plan for my life (Jeremiah 29:11). I recognize that Riley is His and that He has gifted her to me, trusting me with her care. He has a mighty plan for Riley's life and has planned for every event thus far. I can trust Him, I can choose to turn my eyes to Him, I can put my faith and confidence in Him, rather than in doctors. I can choose to do my best with her care, giving my all to glorify Him by serving my family.
Emotional choices are what we feel as human and any action that involves our flesh. When I stress, freak out, melt down, fall apart, throw my hands in the air....it's all emotional choices. None of these glorify the Father, none show my faith in Him to others but rather allow me a pity party.
I encourage you today not to be ashamed of the emotions you feel but to really ask yourself in the moment what kind of a choice you are making. Are you looking to the Father, making a faith choice? Are you choosing to give Him glory, thankful that He is in control(James 1:1-2) Are you praising Him, looking for the positive in it all? Or....are you lashing out and giving up? Are you giving way to fear and allowing the enemy a foothold? Are you choosing to be idle, not serving, not giving of your time and resources to help others? Are you shaken by your circumstances and unable to see clearly (Psalms 16:8)?
We have a choice...one moment at a time, one day at a time to make a faith choice. We can choose not to give in, but to persevere in running the good race (Hebrews 12:1, James 1:3). I encourage you today to make every choice you make, a faith choice:)
Wednesday, April 6, 2011
Riley's Road: The Unspoken
I will first ask your forgiveness and understanding for what I write today. In a great attempt to protect the privacy of our Riley girl, I will refrain from being awfully specific on certain things. I pray you can understand and continue to just love her, just love her.
For the first time ever, we gathered enough sweat in the suctions yesterday to perform the CF test. I think it was daddy's touch....he held her and loved her for the entire very long process and it worked:) Thankfully, he was able to come to this appointment. We will know on Friday what the results are. I'm praying that lab techs and doctors at Denver Children's and National Jewish will have clear results and be firm in whatever the outcome is.
Riley has a feeding eval very early next week and speech, OT and PT evals the following week. After all evals are completed we will know what types of therapies (the intensity of them) and how often she will need them. As of now we are looking at 6 different therapies at least twice a week. I have no idea how it will work and am even more unclear as to how it will work once the deployment has begun. I truly believe her doc's are working hard to help. We are still waiting on her genetics appointment as well as her neurological appointments and the reflux/voice box surgery to be scheduled.
We are dealing with some neurological issues, heavy ones. The behavioral health therapists really heard us yesterday, she understood better than any doctor thus far, she really put some pieces together for us. Sadly, her news makes such sense to us. Our hearts are broken, so broken today. Why did I pray for answers? Would I be better not knowing? It seems I do ok for a few days and then something more awful comes about. The appointment with the behavioral health therapist was one I debated on canceling for a week but really felt the Lord speaking to me to keep it, that there would be connections made, and there was. There are no true tests, but rather watching Riley and knowing her, being an expert in this field, a fellow believer and we finally have some answers....yet there are many more we need.
Our girl is so much more than an opinion, a diagnosis, an appointment. She is a child, a very loved child, a child who has been thru so much in her 2 yrs of life. A child of strength who radiates the love of Christ. She is a picture of perseverance, of determination.
Please continue your prayers for her, for us. As I usually say, we need them more than ever.
Monday, March 21, 2011
They had a ball!
As most of you know, this weekend was the Father/Daughter dance at the Crown Plaza this weekend. Last year Port and Leea weren't able to attend because Riley was in the hospital. But THIS year they were able to go!!!! I've posted a few of my fav pics:)
we started off the day getting Leea's hair done by a fellow army wife friend
daddy gives her a beautiful corsage
a true daddy/daughter team
our beautiful girl
hand in hand
:)
we started off the day getting Leea's hair done by a fellow army wife friend
daddy gives her a beautiful corsage
a true daddy/daughter team
our beautiful girl
hand in hand
:)
Friday, March 18, 2011
Riley's Road: It's back?!
I've learned a valuable lesson once again this week in terms of our Riley girl's health. While doctors and nurses make mistakes as we all do, nothing they do for a patient is 100% guaranteed...I still place trust in what they tell me, I value their opinion's even if I don't agree or they are hard to hear.
Several weeks ago we were told by a nurse that Riley's CF results were negative only to be told later that day, that the nurse had made a human error and read us someone else's results. It rocked me in a big way. I was angry but trying hard to forgive.
Last week we were told by one of Riley's doctors that her CF results had come back and are indeed negative. We were told the CF could finally be put to rest and never have to deal with it again. Until yesterday.
I always struggle with Riley's doc appointments bc it seems they just get worse. The news, the ups and downs of it all. Yesterday, while at one of the top hospitals in the nations for year after year, I was told that once again Riley's test results for CF had been misread to us. Struggling to control my fury, I listened to what was being said.
1) "We are not out of the woods" as her doctor shared with me. The Delta F508 gene had been detected after all. This particular gene is the most common gene found in those who have CF. The test was done 3 times to confirm that the gene is in fact present. As of now Riley is a carrier for the gene (she can potentially have CF children someday as a carrier of the gene.) She must have a high powered sweat test done next week (never mind the 6 sweat test she has had in the past with no valid result) to get either another positive to confirm she has CF or a negative to combat the gene found, making it so that she doesn't have CF.
2)Our ENT did in fact send his notes to her docs at National Jewish but failed to mention any of the news about the cleft in her voice box he found. He states she needs the reflux surgery ASAP and then we can work more on her ears. Her doc's at National Jewish feel he didn't mention such vital information bc the only way to detect something of this magnitude for sure is to take a camera probe down her throat. Since he didn't do that during her appt, he simply didn't mention it.
3)Riley's pediatrician has apparently turned down the need for the reflux surgery that all of her other doc's say needs so badly to happen. Without the pediatrician's go ahead, it can't happen. We are baffled as to why she would turn something down that we've been told Riley needs so badly, something that seems to be making the rest of her body so sick.
The doctor's God has placed on our path can't seem to agree, to make a move on Riley's behalf. In the 5 weeks since her last appointment we have not received one phone call of a series we have been waiting for (frm genetics, therapists ect). Unfortunately, with active duty military insurance, once you have been referred to a specialists, you can't call and make the appointment yourself. You must wait for that doctor to call you, once referrals have been processed and the doctor is ready to see you.
I'm reminded once again that I must be oh so careful for the amount of trust I put in these doctors. Our hearts seem to stay in a constant ache for our girl. It's so hard to be the parent here, feeling like you aren't doing enough, feeling like you've messed up somewhere along the way.
I ask God why CF has come back again, for the 3rd time. While the doctors clock out and go to take care of their own families, Port and I wrestle with the what if's, the room for human error, the heartache. I have felt fury like I have never felt before. I feel the closest to giving up that I ever have. So what if my giving up results in us not knowing? I have questioned the amount of sanity or sound mind I really have.
I am haunted at Riley's pediatrician's view on the CF issue. She has felt Riley shows CF symptoms since she was 10 months old.
Once again, a turn we didn't see coming on Riley's road. God promises He will never leave. We cling to that today with what is left.
Wednesday, March 16, 2011
Simple Mom
Simple Mom is all the rage on blogs right now and now I know why! I checked out her blog yesterday and it is AMAZING! She has oodles of tips on keeping your homeschooling organized, your home in order, you name it and she has a solution! Right now she's hosting a 5 week challenge to totally organize your home by giving you one assignment a week. It's great and I encourage you to check her out! Let's put things back in order, get our homes and schooling organized just in time for spring:)
Nichole
Tuesday, March 15, 2011
Riley's Road: Say what?!
I believe in the power of prayer. I believe in the encouragement we feel each and every day because of the so many people praying for us, the many that have been praying for a long time.
As I posted on our FB earlier this week, Riley had an ENT appointment in Denver. The goal of the appointment (aside from it being #17 on her treatment plan) was to determine if her ear tubes are in fact out and what her ears look like, as well as how her hearing is. We saw the same ENT doc her did her last surgery, of her 2nd set of ear tubes and removing her adenoids while she was at Denver Childrens Hospital.
Riley's ear tube in her right ear has in fact come out and is no longer in the ear drum. She has a lot of fluid built up behind her right ear. Her hearing test went well but she was obviously hindered on her right side due to the fluid build up. I was really expecting the doctor to tell us she would be getting a 3rd set of tubes because of the already building fluid and her history of ear infections along with MRSA. He however feels her ears are the least of our concerns for 2 reasons:
1) He is much more concerned for her lungs that are filling with liquid from her reflux.
2) He feels he has found a cleft in her voice box.
WHAT?!?! How random I thought! I'm super concerned for her ears! He wants to go into her throat to examine the cleft to see how bad it is ect. A surgery will be done to correct the issue, or attempt to correct but cannot be done until her reflux surgery takes place. According to the doc, the reflux has caused the cleft so anything he does to help this particular issue, will just be undone by more reflux.
Her lungs are in a pretty awful state. So much that he says her lungs must be our focus. He is to call her team of doc's at National Jewish to do all he can to push the reflux surgery for asap. During the reflux surgery, he will go in and look at her voice box (so he doesn't have to put her under anesthesia twice)to determine the next step. The next step will likely mean a modified swallow test, showing much more of her voice box than her air ways (from her swallow test in January). He will be able to gather what results he needs from this test to perform the correct surgery. He feels this cleft in her voice box is the reason for her not talking, the reason she has stayed at the same 5 words for the last year.
Sometimes I wonder how in the world we were told we were bringing home a healthy baby from the hospital when she was born. We had no idea. As I usually do, I left this appointment with tears burning my eyes. I'm pretty good at holding my own during the appointments but after I don't do as well. The poor staff at both hospitals see me all too often walking out quickly before they see me crying.
Thankfully, Port was with me for this one. The good news? Riley has gained 14 oz since Feb 10th (her last appointment at National Jewish). We head back to Denver on Thursday of this week to meet with her team of doctors at National Jewish to discuss what progress has been made, what still needs to be done, a check up ect. Port won't be at this one with me and I'm pretty nervous.
Sometimes I wonder if people ever get so sick of us asking them for our prayers. I hesitate these days for I don't want to sound like a broken record. I often don't have good reports. It just gets worse to me and I fear others will give up. Please don't. With an upcoming deployment for our family, a special needs baby having most of her 7 if not all of her surgeries with Port gone, with life in general for us which is no where near normal, please don't give up. Your prayers for our girl are moving mountains and keeping us going in the midst of our night season.
As I took her to the alter once again this past Sunday, as I always am, I was surrounded with those who love us more than we can know. Those who haven't given up but are pressing harder in their prayers for our girl. To say we are thankful is an understatement.
This isn't about Riley being well. I no longer pray for her to be well for it may not be the will of God. He may have a different plan. I pray for His will instead, her comfort and happiness in all she deals with. I pray for her quality of life, for her knowing how loved she is, I pray for strength for us all. I pray that God so richly blesses those interceding on our behalf. As we take another piece of the puzzle, we continue down Riley's road.
Wednesday, March 2, 2011
She's 7!
Our Leea turned 7 last week! She woke to a giant homemade cookie cake, a panda necklace (she's obsessed and always has been with pandas), a huge stack of mini chocolate chip pancakes and a message on her ipod from daddy.
After the morning festivities, our family baby sitter was here to keep Carson and Riley so Leea and I could go have girl time. It was pedicures, lunch and shopping at her favorite store, Justice.
She was so excited to spend the day with me but really I was the one so blessed...a day with my girl.
Leea, you can't possibly know how much you are loved, what strength and character you show at your young age. You inspire and encourage me. We are so proud of you. It is our prayer that your life continues to be so blessed, that you continue to take the hard and find God working as He so faithfully does. May you stay ever close to Him. We love you Biscuit!
daddy, momma, bubba and sister
After the morning festivities, our family baby sitter was here to keep Carson and Riley so Leea and I could go have girl time. It was pedicures, lunch and shopping at her favorite store, Justice.
She was so excited to spend the day with me but really I was the one so blessed...a day with my girl.
Leea, you can't possibly know how much you are loved, what strength and character you show at your young age. You inspire and encourage me. We are so proud of you. It is our prayer that your life continues to be so blessed, that you continue to take the hard and find God working as He so faithfully does. May you stay ever close to Him. We love you Biscuit!
daddy, momma, bubba and sister
Monday, February 21, 2011
It ain't about the dishes!
Latley I've been feeling as though I need to defend my walk, my relationship with the Lord, why we do as we do in our family, why we've consented to various testing and treatments for Riley.
It's brutal if I say so myself. In an effort to show that my walk is strong, that my faith is just as strong, that I'm still capable to do what needs doing in daily tasks, to show that we're ok...I've worn myself out and nearly made myself crazy! It's exhausting to care what others think all the time, to take input you didn't ask for with a lovingly attitude. Port and I fully understand that when we put our lives in the blog, on a prayer chain or in the status of our FB, we are in essence opening up the gates...but it's still tough at times. I've cleaned like a maniac, made sure that I excel at whatever...doesn't matter what, just something. I've made insanely long to do lists, worried over every aspect of my life and have come dangerously close to just not talking anymore to just keep it all out.
Then my sweet sister, my dear cousin, my close friend Bridget called today. We don't get much time to talk so we have to make it work when the other calls;) Without my even knowing, I was talking a million miles a minute. It was all coming out. I needed to justify it all...why we chose this route, why we think this, how we feel on this,what someone said about this,what we will do about that, and all with good reasons. I listed off all my chores done, schooling positives for the week, errands run. And then she said something to me that I don't think I will ever forget.
"Nichole, honey, it ain't about the dishes.
It ain't about the floors being clean or the kids being washed, the bills being paid. It's about His grace. Don't you see His grace would still be there if you had done nothing? If the dishes piled to the floor, the floors a nasty mess, dirty babies and unpaid bills...it wouldn't matter. He loves you and would be there right beside you regardless. You don't have to prove to anyone. We don't live according to what others think of us or by how much grace they give us, but rather by how He feels about us, His grace for us."
She's so right. It ain't about the dishes.I'm so thankful for that. I'm so thankful that I can stop working to prove why we will do what we must for our baby, why we consent to this test and that, why we will continue schooling, why we will fight for her but accept His perfect will at the same time.
I've longed to ask some, "Wouldn't you do the same? If the doctors talked to you of horrible diagnosis, tough procedures, if they looked at you and gave you their personal theories that are so hard to hear, if doctor after doctor looked at you and said they couldn't treat her, if a doctor called you before even seeing your child and said not to bother with the appt as there was no way he would know how to help....and then you finally are put in a place with a team of doctors who want to help, who aren't giving up, who are believers, who want to explore every alley that could possibly tell us something based on symptoms shown...wouldn't you do it or would you not because you know better than a doctor?
Tonight I see that it ain't about the dishes. Those who love us, who get us, who want us in their lives will stand by us and love us thru it all. I don't have to prove anymore. The peace I feel in my heart, that peace that passes all understanding is all I need to know that I'm on the right track.
It's brutal if I say so myself. In an effort to show that my walk is strong, that my faith is just as strong, that I'm still capable to do what needs doing in daily tasks, to show that we're ok...I've worn myself out and nearly made myself crazy! It's exhausting to care what others think all the time, to take input you didn't ask for with a lovingly attitude. Port and I fully understand that when we put our lives in the blog, on a prayer chain or in the status of our FB, we are in essence opening up the gates...but it's still tough at times. I've cleaned like a maniac, made sure that I excel at whatever...doesn't matter what, just something. I've made insanely long to do lists, worried over every aspect of my life and have come dangerously close to just not talking anymore to just keep it all out.
Then my sweet sister, my dear cousin, my close friend Bridget called today. We don't get much time to talk so we have to make it work when the other calls;) Without my even knowing, I was talking a million miles a minute. It was all coming out. I needed to justify it all...why we chose this route, why we think this, how we feel on this,what someone said about this,what we will do about that, and all with good reasons. I listed off all my chores done, schooling positives for the week, errands run. And then she said something to me that I don't think I will ever forget.
"Nichole, honey, it ain't about the dishes.
It ain't about the floors being clean or the kids being washed, the bills being paid. It's about His grace. Don't you see His grace would still be there if you had done nothing? If the dishes piled to the floor, the floors a nasty mess, dirty babies and unpaid bills...it wouldn't matter. He loves you and would be there right beside you regardless. You don't have to prove to anyone. We don't live according to what others think of us or by how much grace they give us, but rather by how He feels about us, His grace for us."
She's so right. It ain't about the dishes.I'm so thankful for that. I'm so thankful that I can stop working to prove why we will do what we must for our baby, why we consent to this test and that, why we will continue schooling, why we will fight for her but accept His perfect will at the same time.
I've longed to ask some, "Wouldn't you do the same? If the doctors talked to you of horrible diagnosis, tough procedures, if they looked at you and gave you their personal theories that are so hard to hear, if doctor after doctor looked at you and said they couldn't treat her, if a doctor called you before even seeing your child and said not to bother with the appt as there was no way he would know how to help....and then you finally are put in a place with a team of doctors who want to help, who aren't giving up, who are believers, who want to explore every alley that could possibly tell us something based on symptoms shown...wouldn't you do it or would you not because you know better than a doctor?
Tonight I see that it ain't about the dishes. Those who love us, who get us, who want us in their lives will stand by us and love us thru it all. I don't have to prove anymore. The peace I feel in my heart, that peace that passes all understanding is all I need to know that I'm on the right track.
Friday, February 18, 2011
a fog and a path
I am in awe at times. That I can still function and to the level that I do. My fog is still very much here. My heart is still broken but certainly not beyond repair to Him. Babies are washed, laundry kept up, 2-3 hot meals prepared daily, floors clean, time spent with kids, schooling daily,checkbook balanced, errands completed, devotionals completed....this my friends is the evidence that I am more than ever in His presence. When not, these things don't happen. I celebrate every tiny accomplishment by giving Him glory, giving Him praise. God is a god that you can see thru your fog, you can see His hand reaching out for you, you can hear His voice as He instructs you as to what your next step is. It's a choice really. I must choose to walk in Him, to trust in Him, to hear Him, to see Him, to obey Him. I know and I tell Him often that Riley is His. He made her. He gifted her to me but she is His. He will do as He pleases for it is His will, not mine.
With very little, and I mean little, talk time with Port over the last week, since he's been gone really, I've prayed more than ever for direction. What is my next step Lord? What will you have me do? How can I honor you still, feeling as I do? Grant me peace, I pray, so that I may complete my tasks at hand, give my children peace and love.
On Sunday, I was refreshed. I spent the morning at church. I worshiped, prayed, cried, listened...I left feeling much better than when I had gone in. After church, I was blessed with an entire 30 min to talk to my husband! I was able to ask him questions, learn of his feelings, his reasoning....it was truly wonderful. It almost felt that he had been here, for a quick visit.
We decided on Sunday to continue homeschooling our children. Leea is finishing up 1st grade, starting some 2nd grade work and Carson is doing pre-k work. We decided to keep going. It was one of my first questions to my husband. Do we keep going? Do we reevaluate? Do we change plans all together? What do we do? Those that know have been very concerned, including Riley's doctors. While on some days it's ok, bc we have so many that love and support us. We open ourselves up to others thoughts when we put it on our blog and FB updates, prayer chains ect. Other days, it's a bit harder to have something you so believe in, something you've prayed for so long on, worked so hard for, something that is such a part of your life...kinda comes under fire, is questioned.
Truth is, our big kids have spent most of their lives for the last 2 yrs in doctor offices with Riley. They have endured physical separations from us and sacrificed family time when hospital times roll around. Leea can work anywhere from the car, to the dentist, out running errands, in the doctor office, the hospital lobby, a waiting room...you name it. It's not always that way, but some days it is. Most of the time I'm the only one here to get the errands done, to make the appts, to get things done. I have to be creative with her schooling so that we can school while still taking care of business. School is so much more than academics! Let's hope and plan that our kids learn mercy and compassion for the sick, Godliness and flexibility for what the day holds, perseverance during the hard times, responsibility in making good choices for themselves, being humble in all things...and that's just some of what we hope for, some of what we teach. In between the math, phonics, copy work, science projects, world history, there are devotions, scripture memorization and real life happening. Real life. Our life is no where near the norm anymore. Rarely do I have time to talk on the phone, meet for coffee, attend a playdate, catch up with a dear friend. Rarely, and that's ok, it's our life.
Riley's health problems, as never ending as they seem, are teaching me, they are teaching our family of the Christ we have in our hearts, in our lives. Leea asks me often "mommy, why won't Jesus make Riley well? He's the only one who can so why won't He?" Carson's biggest fear for Riley is that she will get more shots. I have to explain to them and to myself that it's up to Jesus to make Riley well. It's really not even about Riley being well. It's about Jesus being glorified. Our Bibles tell us that life isn't about being in good health, wealthy, comfortable. It isn't about us at all. It's about Him, how He is glorified, how He is shown to others! If a doctor who doesn't know Jesus starts to care for Riley, and learns of Jesus from Riley, from our family, then it's worth Riley's health not being good. If we can be a light to someone else in a waiting room who has no hope, perhaps their situation is far worse than ours, then it's worth it all. If we can strengthen someone's faith by pressing on, staying with it, giving Him all praise, honor and glory, than it's worth it. Leea and Carson understand bits and pieces and I pray the rest will come in His perfect time.
I filed our fist letter on intent this week, making Leea a legal homeschooled student here in CO. Now at the age 7, it must be done to continue. We have felt called still not only to continue homeschool but to kick it up a notch. I have met with others who know Leea best and homeschool themselves to discuss it, I have done tons of research and prayed for just the right curriculum for our family, I have learned of ways to school for families who have kids with special needs, I have learned of methods to schooling for the days you must be on the go. I have felt peace, such peace.
Port and I told Him that we would continue if that's what He has for us. He has blessed our schooling by answering prayers I've been praying for 2 yrs, before we even started. He's honored what He put into our hearts to homeschool and continues to give me the time to do it and the drive to give it my all. He has made the homeschooling path more clear that it has ever been before. I have seen my prayers answered right before my eyes this week!
I am so thankful to Him:)
With very little, and I mean little, talk time with Port over the last week, since he's been gone really, I've prayed more than ever for direction. What is my next step Lord? What will you have me do? How can I honor you still, feeling as I do? Grant me peace, I pray, so that I may complete my tasks at hand, give my children peace and love.
On Sunday, I was refreshed. I spent the morning at church. I worshiped, prayed, cried, listened...I left feeling much better than when I had gone in. After church, I was blessed with an entire 30 min to talk to my husband! I was able to ask him questions, learn of his feelings, his reasoning....it was truly wonderful. It almost felt that he had been here, for a quick visit.
We decided on Sunday to continue homeschooling our children. Leea is finishing up 1st grade, starting some 2nd grade work and Carson is doing pre-k work. We decided to keep going. It was one of my first questions to my husband. Do we keep going? Do we reevaluate? Do we change plans all together? What do we do? Those that know have been very concerned, including Riley's doctors. While on some days it's ok, bc we have so many that love and support us. We open ourselves up to others thoughts when we put it on our blog and FB updates, prayer chains ect. Other days, it's a bit harder to have something you so believe in, something you've prayed for so long on, worked so hard for, something that is such a part of your life...kinda comes under fire, is questioned.
Truth is, our big kids have spent most of their lives for the last 2 yrs in doctor offices with Riley. They have endured physical separations from us and sacrificed family time when hospital times roll around. Leea can work anywhere from the car, to the dentist, out running errands, in the doctor office, the hospital lobby, a waiting room...you name it. It's not always that way, but some days it is. Most of the time I'm the only one here to get the errands done, to make the appts, to get things done. I have to be creative with her schooling so that we can school while still taking care of business. School is so much more than academics! Let's hope and plan that our kids learn mercy and compassion for the sick, Godliness and flexibility for what the day holds, perseverance during the hard times, responsibility in making good choices for themselves, being humble in all things...and that's just some of what we hope for, some of what we teach. In between the math, phonics, copy work, science projects, world history, there are devotions, scripture memorization and real life happening. Real life. Our life is no where near the norm anymore. Rarely do I have time to talk on the phone, meet for coffee, attend a playdate, catch up with a dear friend. Rarely, and that's ok, it's our life.
Riley's health problems, as never ending as they seem, are teaching me, they are teaching our family of the Christ we have in our hearts, in our lives. Leea asks me often "mommy, why won't Jesus make Riley well? He's the only one who can so why won't He?" Carson's biggest fear for Riley is that she will get more shots. I have to explain to them and to myself that it's up to Jesus to make Riley well. It's really not even about Riley being well. It's about Jesus being glorified. Our Bibles tell us that life isn't about being in good health, wealthy, comfortable. It isn't about us at all. It's about Him, how He is glorified, how He is shown to others! If a doctor who doesn't know Jesus starts to care for Riley, and learns of Jesus from Riley, from our family, then it's worth Riley's health not being good. If we can be a light to someone else in a waiting room who has no hope, perhaps their situation is far worse than ours, then it's worth it all. If we can strengthen someone's faith by pressing on, staying with it, giving Him all praise, honor and glory, than it's worth it. Leea and Carson understand bits and pieces and I pray the rest will come in His perfect time.
I filed our fist letter on intent this week, making Leea a legal homeschooled student here in CO. Now at the age 7, it must be done to continue. We have felt called still not only to continue homeschool but to kick it up a notch. I have met with others who know Leea best and homeschool themselves to discuss it, I have done tons of research and prayed for just the right curriculum for our family, I have learned of ways to school for families who have kids with special needs, I have learned of methods to schooling for the days you must be on the go. I have felt peace, such peace.
Port and I told Him that we would continue if that's what He has for us. He has blessed our schooling by answering prayers I've been praying for 2 yrs, before we even started. He's honored what He put into our hearts to homeschool and continues to give me the time to do it and the drive to give it my all. He has made the homeschooling path more clear that it has ever been before. I have seen my prayers answered right before my eyes this week!
I am so thankful to Him:)
Sunday, February 13, 2011
Riley's Road
So many people over the last 2 yrs of Riley's life have invested so much into our family by way or prayers, encouragement, love and much more. For that reason, Port and I have decided to update everyone on the biggest upcoming steps in Riley's life. It is now, more than ever that we need prayers.
Thursday I took Riley to Denver for what was to be a check up appt. At the end of the day I was able to spend an entire 2 hours with the doctor. I couldn't believe we would get that much time with her but I would soon find out.
Over the last few weeks Riley has digressed greatly to the way she was before she went into the hospital...not eating, not sleeping, constant crying and fussiness ect.
Thursday a lung function test was done to determine the strength of Riley's lungs. For most children/babies 3 doses of a medicine are given as a breathing treatment and the lungs are then examined. Riley had one diluted dose of medicine and went into respiratory distress, resulting in needing an albuterol treatment. This confirms she has asthma. Her lungs are not as strong as we hoped. During this time she was aspirating into her lungs..proving the doc's theory even more. She has been put back on her asthma meds, a higher dose now and with an inhaler instead of a nebulizer.
Her alkalies heels on both legs remain curved so we are being referred to an orthopedic surgeon to discuss leg braces/ surgery.
The ear tube in her left ear has totally removed itself from the ear drum and will be coming out of her ear any day now. We are being sent back to the ENT for a 3rd set of tubes as her doc doesn't feel she is ready to be without them. She will also have another in depth hearing test done to see if she has hearing loss/damage but she doesn't expect a normal result with one of the tubes out.
We are being referred to a surgeon in Denver to discuss the surgery for the acid reflux, to close the flap. Another reflux med was added today but her doc says they have now done all that can be done with only medicine.
Riley has gained not an ounce since her stay at the the hospital last month so we have been recommended for a feeding tube which could stay in as long as 2 yrs...until Riley can eat, feed herself and get the calories she needs to thrive. She has been under weight for so long, to continue not gaining leads her doc to think we must be more aggressive in her treatment.
She is being set up for genetic testing..looking at the brain and all organ function. Her doc feels all the symptoms, all the health issues could be a genetic/neuro disorder that hasn't been found yet.
While we still wait on the CF test, her docs say they will call as soon as they get the results and are going to start setting up appts asap. Her doc is calling her pediatrician in the morning to get her thoughts on Riley's care, the possible surgeries...
Her doc says I must make a way to get Riley's therapies taken care of here in the Springs but I'm just unsure of how to do that with 2 other kids and homeschooling. Her doc says therapies are crucial now. She says I need to accept and come to terms with a chronically ill baby and start reaching out for help. I refused the classes for families and parents of chronically ill children while at the hospital but I suppose I did myself more harm that good.
I have spent the better part of the last 4 days in tears. Tear, tears and more tears. I have had harsh words spoken, people so kindly sharing their criticism but I understand that they just want to help....they just don't know how.
Our faith is strong, stronger than ever. Our God is in control, He is ever faithful and He made Riley just this way. His word says He will never leave me...that He's ever so close when I am in such grief, when I can't form words to pray to Him, showing me all the more that His presence is all around me. When I can't breath for how my heart hurts, He is right beside me. He will be glorified, He will be seen thru our little girl.
I pray that as we start yet another journey, my focus will be more and more on Him and less on my circumstances, that others will see Him at work in our baby, in our lives, that those who don't know Him will call on Him.
Monday, February 7, 2011
Get Ready!
I'm doing a new bible study for military wives, more specifically those of us preparing for deployment. This spring will be our 3rd, but you never get used to it and I find I'm always needing to learn! More on the study later...I want to share a portion I read last week that has stayed on my mind and heart since then.
"God wants us to stop making excuses. We must prepare to let Him take over. We routinely care for others but don't see our strength from God. Though we may be tempted to do the minimum required to survive, God wants to actively work in us. He wants us to stand up and join Him in the process. To meet Him face-to-face in anticipation of what He wants to teach us during deployment. To look for ways He can strengthen our families. What if we choose to view deployment as an opportunity to grow closer to God and and see him work in us? Would such a mind-set help us better serve our husbands and children? Would it lead to more peace in our hearts and households? I believe the answer is yes!
We must get ready to stand and no longer allow deployments to weigh us down or let our emotions outweigh the peace, grace, and love God wants to give us. If we only ask, He offers a better way to navigate the deployment journey. Your role as a military spouse didn't happen by accident. God called you to the moment. He will see you through it."
Tour of Duty, Preparing our hearts for deployment.
By: Sara Horn
(boldness added by me)
"God wants us to stop making excuses. We must prepare to let Him take over. We routinely care for others but don't see our strength from God. Though we may be tempted to do the minimum required to survive, God wants to actively work in us. He wants us to stand up and join Him in the process. To meet Him face-to-face in anticipation of what He wants to teach us during deployment. To look for ways He can strengthen our families. What if we choose to view deployment as an opportunity to grow closer to God and and see him work in us? Would such a mind-set help us better serve our husbands and children? Would it lead to more peace in our hearts and households? I believe the answer is yes!
We must get ready to stand and no longer allow deployments to weigh us down or let our emotions outweigh the peace, grace, and love God wants to give us. If we only ask, He offers a better way to navigate the deployment journey. Your role as a military spouse didn't happen by accident. God called you to the moment. He will see you through it."
Tour of Duty, Preparing our hearts for deployment.
By: Sara Horn
(boldness added by me)
Friday, January 21, 2011
It's that time....
It's official....deployment is coming. This will be our 3rd tour in nearly 10 yrs of marriage. The first two tours were 15 months long each. This time, I will be happy for an actual 12 months. I don't dare put my hope in the rumors that the army will soon be going to 9 month deployments.
We are in pre-deployment mode around here. It's not spoken of much. We steal glances from each other, know what the other is doing when we just leave a room to begin working in another room, my lists of what we need to do and when grow by the day ranging from household repairs to Port's recorded messages to the kids for their special occasions.
I cry. I cry to the LORD, to strengthen my warrior of a husband, help him prepare, to be wise and diligent. I cry for strength and peace for our 3 babies. I cry for myself. Each time my husband leaves, past wounds, deep hurts from others, scars from my childhood resurface. I relive them on my own. Every memory, every word....I'm there again.
I cry to the LORD to pick my heart up as I send my man off to war again. I try not to think of the people who take our troops for granted, who drive their cars with anti war and coexist stickers plastered all over it. They have no idea.
I know that I have my own tour of duty ahead. I will push whatever is in front of me either uphill or out of my way. I will make my hands busy unto the LORD. I will keep my focus on Him and His plans for our family.
Thank a solider today. Thank a family. Thank our God for who they are and what they do. Reach out and break down the walls of feeling awkward contacting those you don't know, not praying with that wife because she's a female and you are a male, playing with their kids while their daddy is gone.
I lift my eyes unto the hills-
where does my help come from?
My help comes from the LORD,
the maker of heaven and earth. Psalm 121:1-2
Sunday, January 9, 2011
Taste and See!
From the call that told us of Riley's upcoming hospital time a month ago until Thursday of last week I have wrestled, fought, whined over, refused and cried over it all. For the last 21 months, since Riley was born, we have had a sick baby in our family. A baby we have had no idea how to help because we didn't know what the problem was. A baby who has been thru 2 surgeries, a million trillion doctor appts, 4 ENT's, and nearly every other kind of doctor you can think of. You would think I would be elated at such news that we were being sent to one of the top hospitals in the nation, the top ranking hospital in the nation for 13 consecutive years for respiratory issues. But I wasn't. I have been so tired of doctors not listening to me, so tired of pointless medicines, empty theories, false hope. I've been so tired of trying what the newest doctor said, or the old one resorted too, not knowing what else to do, only to find Riley was still the same sick baby when all was said and done.
This last week was so hard for us all at the hospital. I was constantly annoyed at my husbands optimism. I had more fleshly moments than I care to remember.
On Thursday of last week a dear friend, a new friend sent me a portion of scripture that the Lord had laid upon her heart. "Taste and see that the Lord is good." Psalms 34:8. I couldn't understand such a verse for such a time as this. Taste and see? All we have is heartaches! All we have is constant trial!
That same day our Pastors surprised us with a visit. I was so excited to see them and talk with them. A week in isolation and a visit from the outside world! After our time was over, I realized, due to the wise counsel of our pastors that Riley being at the hospital, THIS hospital was just where we needed her to be. Months ago, the army didn't clear Riley for Germany and now I see that it was for such a time as this. This is where Riley needs to be. I realized that though the tests are hard for Riley, they are for her good. I saw all the doctors are trying to do to help our girl.
That same day we received a special and needed monetary gift. Our needs would be met for another few days! I took some time to reflect and the Lord brought the scripture my friend had given me to mind. Suddenly it made sense. All the texts, calls, gifts, FB posts, meals and so much more had each come at the most perfect time. God was telling me and even graciously showing me in the midst of a trial, to taste and see that He is good! He is taking care of our every need, concerning Himself with the details of our life like only He does. I had to immediately repent of my fleshly attitude and doubt I had towards so much and change my attitude.
I know I'm not the only one though. Many of us, many of you are going thru what looks impossible, what looks hopeless. It doesn't seem that the issue at hand will be worked out, that God will understand the details but He does and He will. He's the only one that will! I encourage you all today, at this very minute to take to Him, the one who loves you most of all, whatever is concerning you, bringing you down, causing you stress and anxiety. Take it all to Him and then taste and see that He is good!
This last week was so hard for us all at the hospital. I was constantly annoyed at my husbands optimism. I had more fleshly moments than I care to remember.
On Thursday of last week a dear friend, a new friend sent me a portion of scripture that the Lord had laid upon her heart. "Taste and see that the Lord is good." Psalms 34:8. I couldn't understand such a verse for such a time as this. Taste and see? All we have is heartaches! All we have is constant trial!
That same day our Pastors surprised us with a visit. I was so excited to see them and talk with them. A week in isolation and a visit from the outside world! After our time was over, I realized, due to the wise counsel of our pastors that Riley being at the hospital, THIS hospital was just where we needed her to be. Months ago, the army didn't clear Riley for Germany and now I see that it was for such a time as this. This is where Riley needs to be. I realized that though the tests are hard for Riley, they are for her good. I saw all the doctors are trying to do to help our girl.
That same day we received a special and needed monetary gift. Our needs would be met for another few days! I took some time to reflect and the Lord brought the scripture my friend had given me to mind. Suddenly it made sense. All the texts, calls, gifts, FB posts, meals and so much more had each come at the most perfect time. God was telling me and even graciously showing me in the midst of a trial, to taste and see that He is good! He is taking care of our every need, concerning Himself with the details of our life like only He does. I had to immediately repent of my fleshly attitude and doubt I had towards so much and change my attitude.
I know I'm not the only one though. Many of us, many of you are going thru what looks impossible, what looks hopeless. It doesn't seem that the issue at hand will be worked out, that God will understand the details but He does and He will. He's the only one that will! I encourage you all today, at this very minute to take to Him, the one who loves you most of all, whatever is concerning you, bringing you down, causing you stress and anxiety. Take it all to Him and then taste and see that He is good!
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