Maw J. came with us to ACH last Thursday. Cody had to have a contrast enema and some x-rays done on his cute little tummy. Maw J. had not yet experienced the event that is our ACH trips. :) I was so glad to have her coming with us. She has a very special relationship with Cody. More so than the normal Grandmother/Grandson relationship. She is special. Cody and I sure needed her calming ways and undying support. We get to the hospital and Cody is SO excited to show her the glass elevator and the cops. :) He loves 2 things about Arkansas Children's Hospital - those glass elevators and the fact that the nurses, doctors and cops make him feel like a celebrity. In fact, those are my 2 favorite things as well... If there is one thing that Cody Jensen loves to do, it's to be a leader. He leads us to the radiology waiting room. Maw J. cooly asks if she should wait in this waiting area during the "pictures" (this is what we call them, we don't utter the word, enema) and I laugh, loudly. She is soooo cute.
They call Cody back and he immediately begins flirting with all the nurses and they just eat.it.up. He even has nurses from other stations coming over to check him out. He has everyone cracking up. I stand back for a minute and watch this...soak it in and begin to think how incredible it is that this 8 year old, who is the one being poked and tested and analyzed, has the comic relief going in the room. I think it shows his soul, his real person, don't you? He climbs on the table because the doctor needs an x-ray of his belly before the enema. He smiles and says, "Mom! I'm so excited to get my picture taken, CHEESE!!!" He continues this and we all laugh and love him. Maw J. is a proud Maw. What a beautiful child I have. Just beautiful. The doctor comes in and chats with Cody and then....he sees the enema equipment. The tears fill his eyes immediately, he is trying so hard to be brave. He tells me he doesn't want them to touch his bottom. It just kills me. My eyes fill with tears too. How do you tell your baby that these enemas are to help? It just sucks. Long story short, he is a complete rock star. 100% brave and we get it done. Thank the Lord. We go directly to the glass elevators, take a couple rides up to the top....adimre the view of the Capital Building and all is right in the world. :)
Then we meet with Dr. Smith - he is a gut surgeon basically. See, for the last several months we've been doing what is called, Social Cleansing. We have to do an enema on Cody every other day. He doesn't have a lot of bowel control so this cleansing helps prevent accidents. This is becoming an uncomfortable topic for Cody. He doesn't want to have accidents. He certainly doesn't want Mommy and Daddy to give him an enema. It is beyond awful. The tears. The why. He hates that he "doesn't understand his bottom"... That's no way for my sweetie to live. So, we now proceed to surgery number 9.
Appendicostomy - google definition - the operation consists of connecting the cecal appendix to the abdominal wall (usually at the belly button) and creating a valve mechanism that allows catheterization of the appendix but avoid leakage of stool through it. This procedure allows the child to administer an enema, inserting a small catheter into the orifce on the belly button (Cody's will most likely be on his side since he has a lot of scaring from previous surgeries).
So, Cody will get to be more independent, finally. When I met with this doctor a few months ago to discuss more lifetime options...and he gave me this option...I sat there, frozen. I knew that the accidents and the enema's were defintely not a lifestyle. But, I also wasn't prepared for what the realistic options were. Damn Hirschsprung's. I was mad at this disease. Mad as hell at this unifying neurological glitch that happened while Cody was growing in my tummy. This thing that has caused him so much pain. Physical, mental, emotional. But then I had to check myself. I'm not going to get angry, I'm going to get even with this thing. I'm going to help Cody get even with it and show it that he is Cody Ryan Jensen and he is special and important and going to change the world. Take that you stupid "glitch".
So, we are preparing for August 11th. My sweet baby's 9th surgery. Another anesthesiologist patting my hand as C1 drifts to sleep and he says, "Don't worry mom, we're going to take real good care of him." Another waiting room, waiting, leaning on the good Lord, sending Cody and the doctors strength. Another night of holding him while he cries, promising him it is going to get better. Yet, I couldn't possibly trade my life for anything. I couldn't trade my son for anything. I am proud of Cody. He is going places. How beautiful to be apart of that. But, I can't go it alone. Cody can't go it alone. We feel it each time you lift us up in prayer. Please continue to do so. Lift us up, but also lift up the doctors that hold my sweet baby in their hands.
Follow Cody in his positive, unwavering road to the top! :)
Much, much love and hope,
Kelli
Friday, August 5, 2011
Thursday, May 5, 2011
Hurry up and wait.
Last week Cody and I made another trip to ACH Little Rock. We're always hurrying to get there. Hurrying up to get there and then to wait. But, I love this time alone with my boy. He is always having to work so hard. Things that come naturally to some kids take extra hard work for Cody. Always being told what to do. Always being directed this way or that way. He just wants to be heard, loved, enjoyed, so that is what we do when we make our trip to Little Rock. We jam to good music, we throw peace signs to passing cars, we take silly pics. I soak up every mile because I've blinked and it's already been 8 years. It seems like yesterday that he was wheeled around the hospital in a wagon versus a wheel chair. It seems like yesterday that he was in the little infant hospital gown instead of the pants and shirt that ties in the back. Now, he engages with the nurses, he asks questions. They remember him. They love him. I walk back with him and help him on the bed. The anesthesiologist puts the mask over his face and he breathes slowly. His eyes start closing. I rub his hands and tell him how much I love him and I'll be there, waiting, when he wakes up. He is out cold. It's a simple MRI, but it hasn't always been a simple MRI. There have been MANY of those exact moments where the surgery was intense and difficult, hours long. Nerve racking. The anesthesiologist says, like they always do, "We will take good care of him, Mom.". I hold the tears back until I get out the door and into the hallway. Then they pour and I feel like I can take a deep breath. I always go to the cafeteria to wait. I like looking out the big window - watching the sky, the Capitol building, the traffic. You can always point out the mothers in the cafeteria. We all have the exact same look on our face...kind of a deer in headlights look. Worry. Intense worry. Heartache. And we're all looking out that same window. Aside from asking God to give guidance to his doctors, (and to keep my teary eyes out of view from someone that can't help but hug me because THAT, the kindness of a stranger, brings on the alligator tears and once it starts...it doesn't stop) :) I try to spend that time putting myself in my son's shoes. In my son's heart. I can't possibly know what it feels like to be him although I so desperately want to know. As I sit here time and time again and type out my feelings and thoughts about this journey (because if I didn't, I would probably go further insane...) :) I take for granted that I can do that. I can process all of this. How does Cody deal? How does Cody process? How does he sort out his feelings and thoughts? I wish I knew how to help him there. I can't imagine how isolating that must feel.
This time was an MRI of his spine.
So far, in 2011 we've checked out his brain stem, heart, lungs, kidneys and now spine. All of it checks out. All of it is 'normal'. As his Neuro Redevelopmental Specialist's nurse calls me and says his spine is normal, we sit there for a minute, complete silence. Bittersweet. Happy he does not have a form of Spine Bifida....but now what? Now, we are stumped. "We keep on trucking", she says. We hang up and I sit. I keep a smile on my face. I am so unbelievably honored to have been given the gift of my children. But it hurts so much to see another door closed. I feel defeated for a moment. Defeated for Cody. I love my son just the way he is. We aren't looking to change him, he doesn't have a disease that can be cured. But, he deserves to live the absolute best life possible and I'll keep on truckin' until my dying day to find that for him. Because hey, that's what mommas do! :)
As for an update as to what we're looking for... We have done all the possible testing to figure out his CO2 retention. That is top priority. There are no tumors or malformations in his main organs, etc. So, it is most likely neurological. Next stop is another pulmonary doc, this time in Little Rock instead of Lowell. Dr. M's mentor is going to be seeing us. I'm excited about this. Then, genetics in July and back to Dr. K in Lowell in August. At this time, we'll most likely start the process for getting into Chicago. I'm ultra pumped about this opportunity. I have a feeling...this team of doctors is definitely our winning team. I am beyond grateful for these people. His doctors believe there is a unifying diagnosis - these are not just developmental delays from having so many surgeries as an infant. And that is what my search is for, answers. Because of Cody's journey, another child can be helped. Another family can have peace. And most importantly, Cody can understand his beautiful, different, amazing self.
Keep praying and keep believing. :)
This time was an MRI of his spine.
So far, in 2011 we've checked out his brain stem, heart, lungs, kidneys and now spine. All of it checks out. All of it is 'normal'. As his Neuro Redevelopmental Specialist's nurse calls me and says his spine is normal, we sit there for a minute, complete silence. Bittersweet. Happy he does not have a form of Spine Bifida....but now what? Now, we are stumped. "We keep on trucking", she says. We hang up and I sit. I keep a smile on my face. I am so unbelievably honored to have been given the gift of my children. But it hurts so much to see another door closed. I feel defeated for a moment. Defeated for Cody. I love my son just the way he is. We aren't looking to change him, he doesn't have a disease that can be cured. But, he deserves to live the absolute best life possible and I'll keep on truckin' until my dying day to find that for him. Because hey, that's what mommas do! :)
As for an update as to what we're looking for... We have done all the possible testing to figure out his CO2 retention. That is top priority. There are no tumors or malformations in his main organs, etc. So, it is most likely neurological. Next stop is another pulmonary doc, this time in Little Rock instead of Lowell. Dr. M's mentor is going to be seeing us. I'm excited about this. Then, genetics in July and back to Dr. K in Lowell in August. At this time, we'll most likely start the process for getting into Chicago. I'm ultra pumped about this opportunity. I have a feeling...this team of doctors is definitely our winning team. I am beyond grateful for these people. His doctors believe there is a unifying diagnosis - these are not just developmental delays from having so many surgeries as an infant. And that is what my search is for, answers. Because of Cody's journey, another child can be helped. Another family can have peace. And most importantly, Cody can understand his beautiful, different, amazing self.
Keep praying and keep believing. :)
Wednesday, January 26, 2011
Yesterday: that fork in the road...
Yesterday Cody and I headed down to Little Rock - ACH. It's a common trip for us. We enjoy the ride down, Cody LOVES the glass elevators at ACH. We stop before every appointment and watch and wave at the people going up and down. Cody even typically gets nurses and doctors to ride up just so he can watch them. Finally, at our last appointment, I got him to ride....
Cody LOVES flashing peace signs to passing cars on our drive and gets truly offended when you don't PEACE back at him. :) Although YESTERDAY....this boy flashed another sign - a single middle finger. He was SO proud - UNTIL he saw the look on my face and realized this sign wasn't going to be one he could continue to use. It was cute. And even though I had a LONG talk with his daddy on that one, I still had a small sense of joy that he is becomming more and more, a 'normal' 8 year old boy...
Oh man, such a different drive then what it used to be.
As I'm driving down I was thinking about the last 8 years and how this drive has changed. It used to be weekly drives to St. Louis, pull over, feed and change the baby and get back to it. Now, it's Little Rock....now it's flashing peace signs to cars. Rocking out with my favorite 8 year old to good music! The drive with Cody is a reflective drive. Reflection on all the changes I've watched him go through. I just watch him...in such awe. Once again, I get emotional. You see the pattern? :)
Yesterday's appointment is the fork in the road. One direction opens the door to answers and direction. The other direction sends us back to square one. New hospital, new specialists, starting over from the beginning of Cody to see what and where something was missed. Cody's pulmonologist ordered an MRI of the brain - mostly the brainstem. Apparently, your brainstem houses these tonsil looking things and this is the area of the brain the controls breathing, CO2 retention, etc. So, since Cody's genetic testing for Congential Central Hypoventilation Syndrome came back normal, his doctor wanted to look at his brainstem to see if there were any malformations, tumors, etc. We're looking for some sort of indication - some sort of reason for this retention/seizures so we can decide on a course of action.
ACTION. I desperately need action for my little buddy. The nurse and anesthesiologist gave me the usual run down of the procedure. It was time to put him under. I've done this with Cody a million times - it never gets easier. His face, he was being so brave, but clearly still nervous, he still doesn't understand what all this is. Doc Charlie let Cody have root beer flavored gas to put him to sleep (Cody's favorite flavor!) and I'm holding his hand until it is limp, I kiss his cheek and whisper in his ear how much I love him. They say, "We'll take real good care of him mom." and I go about waiting. I keep my very best brave face on until I get into the hallway. Then, I let it out. There is something about how good tears feel against your cheeks after you've been holding them in. My tears and worry are not about Cody coming out of anesthesia - it's more the waiting, the stress, the wanting to take the fear from Cody. I get my tears out, I feel better, back up and ready to fight again. They said it would only take 45 minutes max - I mean, hell, it's only an MRI. Well, 1 hour and 21 minutes later....I realize my leg is shaking the entire chair and I stand up, ready to start shouting and they call me back. Whew. Cody had been throwing up before they had woken him up - my poor sweetie was so sick. But still, at 8 years old was wanting to be so brave that he never once complained. Never once shed a tear. Oh to feel the need to be that brave. So much so, that every doctor on his team that brought him stickers, bubbles, a stuffed animal - he asked for one for his brother. That's my sweet boy.
Ms. Angie - our amazing nurse got us all fixed up and sent us on our way. Cody slept the whole way home, which is so not like him. Along about Ft. Smith he sat up, looked around and said, "Mom! Where did the sunshine go?!" I told him it went to bed and he goes, "UGGGGGH!" and passed right back out. He is such a funny thing. He had wanted desperately to stop by my office and see his friends at my work and was mad because if the sunshine was in bed, he knew my office was closed.... He just loves everyone. Everyone is his friend. He doesn't know hate and I love that about him. A friend asked me yesterday if I ever asked, Why... Sure, I've spent some time asking why....but what I've learned is that Cody is the greatest gift ever given. I know I say that a lot, but it's true. Children are the absolute greatest gift. I am forever grateful that I was trusted to be his mother. As far as why - Cody is going to change many lives. He is going to change the lives of people he never even meets, possibly not even in his lifetime. These amazing doctors are going to unlock the mystery that is Cody and it is going to help so many other people. The question is how on Earth did I get so lucky to be his mother?
I sincerly thank each and every person that has said a prayer for my sweet Cody. Thank you to each of you that post sweet and encouraging thoughts on my facebook. Thank you to every teacher, therapist, doctor, friend that has been there for my family. I feel like each of you are there, helping us push on and that....that is the best feeling in the world! Now, let's pray for definitive answers with this MRI!
Cody LOVES flashing peace signs to passing cars on our drive and gets truly offended when you don't PEACE back at him. :) Although YESTERDAY....this boy flashed another sign - a single middle finger. He was SO proud - UNTIL he saw the look on my face and realized this sign wasn't going to be one he could continue to use. It was cute. And even though I had a LONG talk with his daddy on that one, I still had a small sense of joy that he is becomming more and more, a 'normal' 8 year old boy...
Oh man, such a different drive then what it used to be.
As I'm driving down I was thinking about the last 8 years and how this drive has changed. It used to be weekly drives to St. Louis, pull over, feed and change the baby and get back to it. Now, it's Little Rock....now it's flashing peace signs to cars. Rocking out with my favorite 8 year old to good music! The drive with Cody is a reflective drive. Reflection on all the changes I've watched him go through. I just watch him...in such awe. Once again, I get emotional. You see the pattern? :)
Yesterday's appointment is the fork in the road. One direction opens the door to answers and direction. The other direction sends us back to square one. New hospital, new specialists, starting over from the beginning of Cody to see what and where something was missed. Cody's pulmonologist ordered an MRI of the brain - mostly the brainstem. Apparently, your brainstem houses these tonsil looking things and this is the area of the brain the controls breathing, CO2 retention, etc. So, since Cody's genetic testing for Congential Central Hypoventilation Syndrome came back normal, his doctor wanted to look at his brainstem to see if there were any malformations, tumors, etc. We're looking for some sort of indication - some sort of reason for this retention/seizures so we can decide on a course of action.
ACTION. I desperately need action for my little buddy. The nurse and anesthesiologist gave me the usual run down of the procedure. It was time to put him under. I've done this with Cody a million times - it never gets easier. His face, he was being so brave, but clearly still nervous, he still doesn't understand what all this is. Doc Charlie let Cody have root beer flavored gas to put him to sleep (Cody's favorite flavor!) and I'm holding his hand until it is limp, I kiss his cheek and whisper in his ear how much I love him. They say, "We'll take real good care of him mom." and I go about waiting. I keep my very best brave face on until I get into the hallway. Then, I let it out. There is something about how good tears feel against your cheeks after you've been holding them in. My tears and worry are not about Cody coming out of anesthesia - it's more the waiting, the stress, the wanting to take the fear from Cody. I get my tears out, I feel better, back up and ready to fight again. They said it would only take 45 minutes max - I mean, hell, it's only an MRI. Well, 1 hour and 21 minutes later....I realize my leg is shaking the entire chair and I stand up, ready to start shouting and they call me back. Whew. Cody had been throwing up before they had woken him up - my poor sweetie was so sick. But still, at 8 years old was wanting to be so brave that he never once complained. Never once shed a tear. Oh to feel the need to be that brave. So much so, that every doctor on his team that brought him stickers, bubbles, a stuffed animal - he asked for one for his brother. That's my sweet boy.
Ms. Angie - our amazing nurse got us all fixed up and sent us on our way. Cody slept the whole way home, which is so not like him. Along about Ft. Smith he sat up, looked around and said, "Mom! Where did the sunshine go?!" I told him it went to bed and he goes, "UGGGGGH!" and passed right back out. He is such a funny thing. He had wanted desperately to stop by my office and see his friends at my work and was mad because if the sunshine was in bed, he knew my office was closed.... He just loves everyone. Everyone is his friend. He doesn't know hate and I love that about him. A friend asked me yesterday if I ever asked, Why... Sure, I've spent some time asking why....but what I've learned is that Cody is the greatest gift ever given. I know I say that a lot, but it's true. Children are the absolute greatest gift. I am forever grateful that I was trusted to be his mother. As far as why - Cody is going to change many lives. He is going to change the lives of people he never even meets, possibly not even in his lifetime. These amazing doctors are going to unlock the mystery that is Cody and it is going to help so many other people. The question is how on Earth did I get so lucky to be his mother?
I sincerly thank each and every person that has said a prayer for my sweet Cody. Thank you to each of you that post sweet and encouraging thoughts on my facebook. Thank you to every teacher, therapist, doctor, friend that has been there for my family. I feel like each of you are there, helping us push on and that....that is the best feeling in the world! Now, let's pray for definitive answers with this MRI!
Wednesday, January 5, 2011
Emotions and Patience
I have a lot of one and not enough of the other.
I am an extremely emotional person. I wear my heart on my sleeve. I care - about everything. I want to fix everything for everyone. Then, bring my kiddos into the equation and there are even more emotions and even less patience.
Eight years of searching. Pushing. Eight years of more questions and a lot less answers. I knew Cody was one in a million before I had even given birth to him. But, I guess God is showing me just what that really means. I'm learning how to channel my emotions, my need to fix things and lack of patience - channeling it into action, change. I'm quick to say that Cody teaches me so much. But it seems like that statement doesn't do my feelings justice. I look at him and he doesn't even know what effect he is having on the world. The effect he is having on his momma. I hate that Cody has endured physical and emotional pain. If I could have put myself in his place anytime there was hurt involved, I would. Especially the emotional hurt. Of course, any parent would. But, I wouldn't trade this journey for anything and I wouldn't trade my pint sized partner. Cody made me stronger. He and I are a team.
He has come a loooong way in the last year. Mostly in part to the AMAZING people in his life. Ya know, it takes a tribe to raise a child and lemme tell ya, we have a ROCKIN' tribe! His teachers, therapists, doctors, friends and his sweet, fun and FUNNY little brother - wow - I couldn't be more thankful for a more loving and loyal tribe. I mean, he is doing so great in school....so great and he is SO PROUD of himself and that makes my heart swell. Seeing him get so excited about homework and reading....that genuine smile....I still get emotional and tear up when I see that because in the beginning so many doctors (that I've since kicked to the curb!) doubted his abilities - doubted he would make it period. So to each milestone we make with Cody, after I dry my tears, I think IN YOUR FACE to those doctors....and high-five my sweet C1.
So, we are now trying to figure out his hypoventilation and seizures. We will be having an MRI at the end of the month to see if there is a tumor, malformation, or....who knows....in his brainstem. If that checks out to be normal, I'll be knocking on the Mayo Clinic doors.
I am an extremely emotional person. I wear my heart on my sleeve. I care - about everything. I want to fix everything for everyone. Then, bring my kiddos into the equation and there are even more emotions and even less patience.
Eight years of searching. Pushing. Eight years of more questions and a lot less answers. I knew Cody was one in a million before I had even given birth to him. But, I guess God is showing me just what that really means. I'm learning how to channel my emotions, my need to fix things and lack of patience - channeling it into action, change. I'm quick to say that Cody teaches me so much. But it seems like that statement doesn't do my feelings justice. I look at him and he doesn't even know what effect he is having on the world. The effect he is having on his momma. I hate that Cody has endured physical and emotional pain. If I could have put myself in his place anytime there was hurt involved, I would. Especially the emotional hurt. Of course, any parent would. But, I wouldn't trade this journey for anything and I wouldn't trade my pint sized partner. Cody made me stronger. He and I are a team.
He has come a loooong way in the last year. Mostly in part to the AMAZING people in his life. Ya know, it takes a tribe to raise a child and lemme tell ya, we have a ROCKIN' tribe! His teachers, therapists, doctors, friends and his sweet, fun and FUNNY little brother - wow - I couldn't be more thankful for a more loving and loyal tribe. I mean, he is doing so great in school....so great and he is SO PROUD of himself and that makes my heart swell. Seeing him get so excited about homework and reading....that genuine smile....I still get emotional and tear up when I see that because in the beginning so many doctors (that I've since kicked to the curb!) doubted his abilities - doubted he would make it period. So to each milestone we make with Cody, after I dry my tears, I think IN YOUR FACE to those doctors....and high-five my sweet C1.
So, we are now trying to figure out his hypoventilation and seizures. We will be having an MRI at the end of the month to see if there is a tumor, malformation, or....who knows....in his brainstem. If that checks out to be normal, I'll be knocking on the Mayo Clinic doors.
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