Sloane sounds like Darth Vader. I don't know if I should be concerned, overly concerned or red alert concerned. It isn't all the time, but it is more frequent when she is active....which in Sloane's case is ALWAYS!
This morning there was a concert. Sloane in her castle pjs and me in my workout clothes (not a pretty site) jamming on the drums and guitar in my bedroom and there was a wheeze. Tonight there was game of chase with Sloane, her nonni and her daddy and trailing behind her was a wheeze. There is a wheeze in my house.
This dam wheeze and loud mouth breathing has been a topic on the table between Dr. Rahbar and me. He isn't overly concerned so I try not to be BUT "I can't help but wonder" (thanks for the line Carrie, from Sex & the City.....watched a re-run today...lol) is the wheeze a bit of foreshadowing for impending pneumonia???
Now, others pick up on the wheeze. You know its bad when your contractor, who spends a few hours with your child, tells you that your daughter has a wheeze. My uncle, who apparently is well versed in wheezing, mentions the wheeze to me when he hears it. On this Friday coming, Sloane and he will share a cookie and probably getting into some kind of mischievousness during lunch, but none of that will concern me as much as if he says he hears the wheeze. You see he doesn't hear the wheeze when Sloane is on fire; he hears the wheeze when she is at rest. And that my friends, is NOT GOOD in laryngeal cleft world.
There is a wheeze in my house and I would like it to leave.........
Keren, Thank you for your comment. I am so happy that your son's repair went well. As for the reflux, it gets better that I promise. And the feeding tube, I understand. I have blogged about it many times. It was very hard for everyone to understand its place in our LC world especially after cleft repair. Sloane did not have her tube removed until 15 months after her repair. It hasnt been a year yet. The goal was for Sloane to hydrate herself enough this cold & flu season to be able to say bye bye button for a long time. It was a bit touchy during her last pneumonia over New Years, but she did it.
Honestly, Keren, unless you have walked the walk (which I have....I have walked your walk)....its hard to comprehend the jedi mind trick of the feeding tube. It is such an important part of our world. Thank you for getting back in touch with me. You, too, have helped me not feel alone. I hope Sloane's journey is helping you to know that it never goes away, but it gets more manageable and almost acceptable on a VERY, VERY good day.
Wednesday, February 27, 2013
Saturday, February 23, 2013
Someone Gets Me
There are days when I think our blog has lost its luster. We are stuck in a gray area just waiting for pneumonia to rear its germs again. Sloane is drinking, Sloane is coughing, Sloane has a slight wheeze at times, and Sloane is visibly aspirating almost once day. These are the facts, but we just wait.....will she get pneumonia again or wont she??? Will we see Dr. Rahbar on April 30th or will we move our appointment up because Sloane gets sick again??
As each day goes by with nothing new to report in our laryngeal cleft world, I think this blog may not be the vehicle of speech I once thought it was. I actually found a group of Rhode Island women who started a blog contingent when I was blog hunting the other night. I considered emailing to see if I could join, but then after reviewing some of their blogs I thought maybe not...... A Sip Of Heaven isnt as aesthetically developed as the other members of Rhody Bloggers' blogs. I am bit technically challenged. lol
Then today happened. A mom posted a comment on my last post that reminded me what it is like to be a laryngeal cleft parent and why we so need each other.
Thank you, Gina. Your post helped me to remember that all the voices I hear in my head revolving around every one of Sloane's coughs, gags, and aspirations are normal and justified for a laryngeal cleft parent. Your post gave this blog a bit of life........Here is her comment:
I stumbled across your blog in the wee hours last night as I fueled my anxiety researching more and more about laryngeal cleft repair surgery. I skimmed a few posts and I saw my own life flash before me many times---the boxes of simply thick, the photo of the VERY FIRST juicebox, etc. I look forward to reading your story in my "spare" time!
My son is 4 1/2. He aspirates with thin liquids--he has since birth. He has a history of respiratory infections, pneumonia, etc. He has had so many scopes to try to figure out why he aspirates and doctors found nothing.....that was until December 17, 2012. A type 1 cleft was FINALLY discovered. It evaded diagnosis all these years. Doctors had been stumped because without an anatomical reason for the aspiration, we were left with a suspected neurological reason for the swallowing disorder. We were told over and over again that he would "grow out of it." I never accepted that for a moment and kept fighting to get to where we are now. My son just had a second foam injection in his cleft in December and he passed his very first swallow study three weeks ago. Full surgical repair is scheduled for March 26th and I am petrified.
Because this is such a rare condition, it is not only stressful, but beyond isolating. I am scared of every cough, gag, throat clearing. I know you understand......... I just wanted to share a little bit of my story and thank you for sharing yours. I get it. I truly get it.
Best,
Gina
As each day goes by with nothing new to report in our laryngeal cleft world, I think this blog may not be the vehicle of speech I once thought it was. I actually found a group of Rhode Island women who started a blog contingent when I was blog hunting the other night. I considered emailing to see if I could join, but then after reviewing some of their blogs I thought maybe not...... A Sip Of Heaven isnt as aesthetically developed as the other members of Rhody Bloggers' blogs. I am bit technically challenged. lol
Then today happened. A mom posted a comment on my last post that reminded me what it is like to be a laryngeal cleft parent and why we so need each other.
Thank you, Gina. Your post helped me to remember that all the voices I hear in my head revolving around every one of Sloane's coughs, gags, and aspirations are normal and justified for a laryngeal cleft parent. Your post gave this blog a bit of life........Here is her comment:
I stumbled across your blog in the wee hours last night as I fueled my anxiety researching more and more about laryngeal cleft repair surgery. I skimmed a few posts and I saw my own life flash before me many times---the boxes of simply thick, the photo of the VERY FIRST juicebox, etc. I look forward to reading your story in my "spare" time!
My son is 4 1/2. He aspirates with thin liquids--he has since birth. He has a history of respiratory infections, pneumonia, etc. He has had so many scopes to try to figure out why he aspirates and doctors found nothing.....that was until December 17, 2012. A type 1 cleft was FINALLY discovered. It evaded diagnosis all these years. Doctors had been stumped because without an anatomical reason for the aspiration, we were left with a suspected neurological reason for the swallowing disorder. We were told over and over again that he would "grow out of it." I never accepted that for a moment and kept fighting to get to where we are now. My son just had a second foam injection in his cleft in December and he passed his very first swallow study three weeks ago. Full surgical repair is scheduled for March 26th and I am petrified.
Because this is such a rare condition, it is not only stressful, but beyond isolating. I am scared of every cough, gag, throat clearing. I know you understand......... I just wanted to share a little bit of my story and thank you for sharing yours. I get it. I truly get it.
Best,
Gina
Monday, February 18, 2013
1, 2, 3 Magic
We are all alive! Sloane did not kick the shit out of this weekend and we did not jump ship! Her behavior the past few days has been much better and more normal in my opinion. Certainly not angelic, but a bit more 2ish. I read 1/2 way through my new behavior management book and I am ready to set it in motion.
The very funny part about this is that I am a teacher. I taught learning disabled and behavior disordered children from 10 years before I started teaching elementary education. Throughout my teaching career, I developed a reputation. It wasnt one for being a warm and fuzzy teacher. It was one for running a tight ship, many days I am sure too tight. There was a schedule, there were expectations, and there was a very clear behavior modification system. Because I this, I am completely baffled how one 35 lb 3 feet tall toddler could get me as twisted as she does. I have encountered 10 year old behavior disordered boys who were completely fearful of me!! And my own child is testing me with a smirk across her heart shaped pink tinted perfect lips!!
After examining her behavior over the past 5 days, I have confirmed what I thought to be true.....Sloane's behavior is directly correlated to her sleep. Sloane needs sleep. She enjoys a 2 hour nap each day and 10-11 hour night's sleep. She likes her sleep on a schedule. It is clear that when Sloane does not have that amount of sleep for a number days she becomes an untamable wild child!!
I am a firm believer (I have been taught by the best) that an overtired child can not rest.
Meaning when Sloane is overtired:
she doesnt go to bed easily, but rather calls for us 4, 5 or 6 times before she drifts to dreamland,
she doesnt sleep throughout the night,
wakes up occasionally,
rises from a nap cranky,
and has trouble turning up her listening ears.
So, the big push to get Sloane caught up on some very much needed sleep (for her and her mom). I think we are almost there based on the fact that she didnt hit us this weekend, pull my hair, or throw anything AND that she went to bed tonight without calling one of us in her bedroom more than once!!
The very funny part about this is that I am a teacher. I taught learning disabled and behavior disordered children from 10 years before I started teaching elementary education. Throughout my teaching career, I developed a reputation. It wasnt one for being a warm and fuzzy teacher. It was one for running a tight ship, many days I am sure too tight. There was a schedule, there were expectations, and there was a very clear behavior modification system. Because I this, I am completely baffled how one 35 lb 3 feet tall toddler could get me as twisted as she does. I have encountered 10 year old behavior disordered boys who were completely fearful of me!! And my own child is testing me with a smirk across her heart shaped pink tinted perfect lips!!
After examining her behavior over the past 5 days, I have confirmed what I thought to be true.....Sloane's behavior is directly correlated to her sleep. Sloane needs sleep. She enjoys a 2 hour nap each day and 10-11 hour night's sleep. She likes her sleep on a schedule. It is clear that when Sloane does not have that amount of sleep for a number days she becomes an untamable wild child!!
I am a firm believer (I have been taught by the best) that an overtired child can not rest.
Meaning when Sloane is overtired:
she doesnt go to bed easily, but rather calls for us 4, 5 or 6 times before she drifts to dreamland,
she doesnt sleep throughout the night,
wakes up occasionally,
rises from a nap cranky,
and has trouble turning up her listening ears.
So, the big push to get Sloane caught up on some very much needed sleep (for her and her mom). I think we are almost there based on the fact that she didnt hit us this weekend, pull my hair, or throw anything AND that she went to bed tonight without calling one of us in her bedroom more than once!!
Wednesday, February 13, 2013
As The Toddler Unravels
Dr. Rahbar's office contacted us back. Sloane's pneumonia was a moderate case located in her lower left lobe. I had asked how its location related to aspiration pneumonia. The answer wasn't what we had been told in the past by the non-specialists. We were told that aspiration pneumonia occurs in upper lobes, that is not accurate. According to Dr. Rahbar's office, aspiration pneumonia occurs in lower lobes. It is usually the right lobe, so in this case pneumonia in the lower left lobe is not truely diagnostic of an aspiration episode.
I would have liked a more decisive answer honestly. I think it would have helped me to not be wondering if every sip or cough was sending liquid into Sloane's lungs.
Today though, Sloane's cleft is not the issue haunting me. It is her behavior. OMG!!! HOLY SHIT!! WHAT THE F**K???? I have no idea what has happened in our house in the past 2 weeks. Sloane has become FRESHY FRESH!! I mean fresh like I'm in shock. Now lets be clear, I am a first timer so I am not prepared for this behaviors. They have been building and I have been taking them one at a time, but this past week I can not keep up. These freshy fresh tantrums dont pass by unaddressed, but it is clear that the approach I am using is not the correct one.
I do wish there was a secret website where mothers were honest about the tantrums they live through so I could read them all and feel better about our situation. Today at Sherwin Williams on our way out the door as I had Sloane on my hip, she was yelling about not wanting to leave, took 3 swings at me and then pulled my hair in clumps to the point that I had a headache. When all was said and done on her end and mine, I put her in her car seat and I sat in parking lot wondering what the F**K just happened. Am I raising a wild animal or is this the secret stuff that moms don't share out of embarrassment?? Today's adventures in our series As The Toddler Unravels did not end in the parking lot of Sherwin Williams. I can't even began to explain what happened at nap-time because I'm embarrassed......LOL!!!
I know it has gotten bad, because my hubby (who is soooo patient with Sloane and historically has worked through behaviors with her) is also shaking his head. I ask my friends and one is very honest to the point that she makes me feel better with each story. The others don't recall the intimate details or simply raised passive children. Sloane has never been passive and certainly is verbally expressive to the point that you think you are interacting with a 10 year old. Which is clearly the freaking problem!!!!!
Everyone has their approach. And after talking about it, thinking about it, reflecting on it, it is time for our family to get its approach. So I am off to read a book that has been recommended 3X over by the non-specialists and the specialists......
I would have liked a more decisive answer honestly. I think it would have helped me to not be wondering if every sip or cough was sending liquid into Sloane's lungs.
Today though, Sloane's cleft is not the issue haunting me. It is her behavior. OMG!!! HOLY SHIT!! WHAT THE F**K???? I have no idea what has happened in our house in the past 2 weeks. Sloane has become FRESHY FRESH!! I mean fresh like I'm in shock. Now lets be clear, I am a first timer so I am not prepared for this behaviors. They have been building and I have been taking them one at a time, but this past week I can not keep up. These freshy fresh tantrums dont pass by unaddressed, but it is clear that the approach I am using is not the correct one.
I do wish there was a secret website where mothers were honest about the tantrums they live through so I could read them all and feel better about our situation. Today at Sherwin Williams on our way out the door as I had Sloane on my hip, she was yelling about not wanting to leave, took 3 swings at me and then pulled my hair in clumps to the point that I had a headache. When all was said and done on her end and mine, I put her in her car seat and I sat in parking lot wondering what the F**K just happened. Am I raising a wild animal or is this the secret stuff that moms don't share out of embarrassment?? Today's adventures in our series As The Toddler Unravels did not end in the parking lot of Sherwin Williams. I can't even began to explain what happened at nap-time because I'm embarrassed......LOL!!!
I know it has gotten bad, because my hubby (who is soooo patient with Sloane and historically has worked through behaviors with her) is also shaking his head. I ask my friends and one is very honest to the point that she makes me feel better with each story. The others don't recall the intimate details or simply raised passive children. Sloane has never been passive and certainly is verbally expressive to the point that you think you are interacting with a 10 year old. Which is clearly the freaking problem!!!!!
Everyone has their approach. And after talking about it, thinking about it, reflecting on it, it is time for our family to get its approach. So I am off to read a book that has been recommended 3X over by the non-specialists and the specialists......
Sunday, February 10, 2013
Happy Birthday....
A Sip Of Heaven's has celebrated its first birthday! For one year, I have been journaling Sloane's journey, our daily trails, and my inner voices. I took some time to think about what has happened over the past 365 days, one of my favorite sayings comes to mind...... "it's all good".
Sloane has made incredible progress being a toddler and in her laryngeal cleft world. A friend told me a few weeks ago how great she thought the blog was because I would forever have the chain of events of the past year in black and white print. A very true statement.
We are so grateful for how far we have come this year. When I read the old blogs I am reminded of not only the events, but the emotions that came with them. Last February, Sloane had a round the clock feeding tube schedule, was drinking minimal amounts of very thickened liquids and her prognosis was up in the air. One year later, Sloane is without a feeding tube, drinks liquids in their natural form and continues on a path of upward movement. The changes that have occurred are almost unbelievable. When we were in the throws of our LC world, I would have never dared myself to imagine we could have made so much progress in one year.
HUGE things that happened in our family and those are the things that should supersede all else....but the small things are really the ones I hold closest to my heart. The "ahhh" moments. The OMG gasps. The "you will never believe what she did" statements. Just this week, Sloane started dressing herself. She sits so patiently and buckles her shoes. Many days they are actually on the right feet! LOL
So one year later, Sloane 's laryngeal cleft remains as does her precocious spirit. Thank you to all our followers for sharing in our story with us. This blog has had over 6,200 hits from all over the world. Truly incredible! Here's to the next year's developments as Sloane's laryngeal cleft journey continues.
We are so grateful for how far we have come this year. When I read the old blogs I am reminded of not only the events, but the emotions that came with them. Last February, Sloane had a round the clock feeding tube schedule, was drinking minimal amounts of very thickened liquids and her prognosis was up in the air. One year later, Sloane is without a feeding tube, drinks liquids in their natural form and continues on a path of upward movement. The changes that have occurred are almost unbelievable. When we were in the throws of our LC world, I would have never dared myself to imagine we could have made so much progress in one year.
HUGE things that happened in our family and those are the things that should supersede all else....but the small things are really the ones I hold closest to my heart. The "ahhh" moments. The OMG gasps. The "you will never believe what she did" statements. Just this week, Sloane started dressing herself. She sits so patiently and buckles her shoes. Many days they are actually on the right feet! LOL
So one year later, Sloane 's laryngeal cleft remains as does her precocious spirit. Thank you to all our followers for sharing in our story with us. This blog has had over 6,200 hits from all over the world. Truly incredible! Here's to the next year's developments as Sloane's laryngeal cleft journey continues.
Monday, February 4, 2013
Back Burner
I have been waiting to post because I thought the next post I write needs to be about Sloane's laryngeal cleft and its place in our world. I thought by tonight I would have some information to share. Dr. Rahbar's office emailed over a week ago stating that they received Sloane's pneumonia x-rays and would get back to us with their thoughts in regards to its location, severity and cleft relationship. I have not heard back from them yet. I am sure Sloane's films are on their back burner as she is healthy presently. Sloane has been drinking liquids in their natural form for about 2+ weeks and has remained healthy. We are forging forward and hoping for the best. I am confident that I will hear back from them soon!!
Sloane hasnt exactly been drinking as much as we would like lately. There has been a big push in our home. I have no idea why liquids have taken the back burner a bit. Our refrigerator is still stocked with varieties that make us look like a satellite store for Cumberland Farms. The low liquid intake has affected the poop situation. Somedays I can not get over how life is forever changing when you have a toddler. Nothing remains the same for more than a few days. I dont know what we are pushing more...for Sloane to drink or for Sloane to sit on the potty and push. The past few days, my mind has been consumed with liquids going in and solids coming out. LOL
Nothing has changed while Sloane is drinking, there are still moments when she gulps too much.....there is the cough, the red face and the little gasp for air. For me, there is the thought...aspiration and then for a split second I am reminded that another diagnosis of pneumonia could be sitting on our back burner.
Sloane hasnt exactly been drinking as much as we would like lately. There has been a big push in our home. I have no idea why liquids have taken the back burner a bit. Our refrigerator is still stocked with varieties that make us look like a satellite store for Cumberland Farms. The low liquid intake has affected the poop situation. Somedays I can not get over how life is forever changing when you have a toddler. Nothing remains the same for more than a few days. I dont know what we are pushing more...for Sloane to drink or for Sloane to sit on the potty and push. The past few days, my mind has been consumed with liquids going in and solids coming out. LOL
Nothing has changed while Sloane is drinking, there are still moments when she gulps too much.....there is the cough, the red face and the little gasp for air. For me, there is the thought...aspiration and then for a split second I am reminded that another diagnosis of pneumonia could be sitting on our back burner.
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