Today was Sloane's first day of pre-k. Monumental, yes!! The fact that four years ago tonight, Sloane was still a patient in the NICU and hadn't made into our home is incredible. For the past 3 years, at this time of the year, I always reflect on the length of time Sloane was hospitalized after birth....from July 20 until September 10th. Each year, I am reminded just how long that is!
Today was Sloane's first day of full day pre-k. Amazing, yes!! Sloane is going to school. Real school. We have enrolled her in a school that stretches from pre-k to eighth grade. There is a uniform to be worn, a cafeteria to be eaten in, a theater stage to preform on, and a library to devour a book in. A real school. An every day 8- 2:30 school!
In classic Sloane form, she held her head high, put her backpack one and said "momma, I am so ready for this!" And she is!! I'd like to say that she is too young for a full day of enrichment and learning, but I would be lieing. She is ready. More ready than I am. It was a very long day without Sloane's company, Sloane's energy, Sloane's curiosity and her chatter!!
Today was Sloane's first day of pre-k. Unbelievable, yes. But not as unbelievable as the fact that Sloane's Laryngeal Cleft didn't play a role, at all, in her entrance physically or emotionally.. That is unbelievable. I didn't believe 4 years ago that Sloane's Laryngeal Cleft would ever be something we didn't focus on or talk about. I couldnt wrap my head around that idea. How could something that altered our lives and made our child different than those around us become unimportant??? But it has. As I filled out Sloane's entrance papers to her new school endlessly, it dawned on me that I didn't have much medical info on Sloane to fill in. Now, of course, I noted Sloane's cleft, her surgeries, and wrote a quick snip-it about her current drinking issues...which was: sometimes when Sloane drinks from an open vessel too quickly she will cough. Beyond that I wrote nothing. Unbelievable!!
Sloane's LC, four years ago was THE ONLY thing we talked about, read about, and wondered about. We wondered.....would Sloane enter school with a feeding tube attached to her because her Laryngeal Cleft would be present in her life. And here we are, today, the first day of. pre-k wondering about everything that has to do with Sloane......watching her enter school with a sports water bottle hanging off her backpack!!! Unbelievable, for sure!
Wednesday, August 27, 2014
Tuesday, July 22, 2014
To the Laryngeal Cleft Mom
I had all intentions of blogging this week about the BIG 4!! and how we spent our day on Sunday but that has been put on the back burner for today at least....
There is a mom out there who left me a very nice comment last night on a post that I wrote way back in February of 2012 entitled Are We There Yet?. She didn't leave her name or her email which is fine. But this post is for her....
To this LC mom: I know you.
I remember the days after cleft repair surgery and how slow the progress was...hanging on from swallow study to swallow study from month to month.
I remember when Sloane was 21 months very well. She still had a feeding tube attached to her daily, she was still aspirating liquids, we were in the throws of it and I felt our journey would never end.
For us, 21 months was April 2012. I could go back and re-read posts about our Laryngeal Cleft world then but I don't have to. I remember it all. I can say that back in April 2012...I never thought we would be where we are today. I had visions of the feeding tube entering into a Pre-K classroom, I had visions of weekly swallowing therapies, I had visions of Sloane having sensory issues attached to foods, I had visions of never being relaxed when liquids were handed out, I had visions of croup and pneumonia dancing in my head. I had visions of there never being normal in our home.......
All of that has gone away.....your life, too, will change and progress and little by little or sip by sip things get better. That I can tell you from my heart. Two years later at 4 years old, things are better, more normal and I can see a light.
As a mother of a child with a life altering birth defect no matter how small or how encompassing......it is true, we are different. Thank you for sharing your thoughts and embracing mine. It is true, we are not our friends, or our mothers, or the girl next door. We are different. That will never change.
Thank you for your comment...for reaching out.....for sharing in our journey and sharing yours......be in touch again please!
There is a mom out there who left me a very nice comment last night on a post that I wrote way back in February of 2012 entitled Are We There Yet?. She didn't leave her name or her email which is fine. But this post is for her....
To this LC mom: I know you.
I remember the days after cleft repair surgery and how slow the progress was...hanging on from swallow study to swallow study from month to month.
I remember when Sloane was 21 months very well. She still had a feeding tube attached to her daily, she was still aspirating liquids, we were in the throws of it and I felt our journey would never end.
For us, 21 months was April 2012. I could go back and re-read posts about our Laryngeal Cleft world then but I don't have to. I remember it all. I can say that back in April 2012...I never thought we would be where we are today. I had visions of the feeding tube entering into a Pre-K classroom, I had visions of weekly swallowing therapies, I had visions of Sloane having sensory issues attached to foods, I had visions of never being relaxed when liquids were handed out, I had visions of croup and pneumonia dancing in my head. I had visions of there never being normal in our home.......
All of that has gone away.....your life, too, will change and progress and little by little or sip by sip things get better. That I can tell you from my heart. Two years later at 4 years old, things are better, more normal and I can see a light.
As a mother of a child with a life altering birth defect no matter how small or how encompassing......it is true, we are different. Thank you for sharing your thoughts and embracing mine. It is true, we are not our friends, or our mothers, or the girl next door. We are different. That will never change.
Thank you for your comment...for reaching out.....for sharing in our journey and sharing yours......be in touch again please!
Wednesday, July 16, 2014
First I'll Be 4, and Then I'll Be 5
There is a whole lot of static going on around me that Sloane is turning 4! First off, let me say that I can not believe she is 4. I sound like every other mom in the whole world when I say...where did the time go??? It is astonishing how quickly infants turn into babies and babies turn into toddlers and toddlers turn into preschoolers!
Driving in the car last week.....Sloane told me after 4 she will turn 5 and then she won't need mommy anymore!! My heart tore, it broke and a wave of sadness came over me. I explained that she will always need a mommy and then, in her ever so sassy way, she said...well, you don't have a mommy! And then the conversation took a whole another turn.
The static buzzing around me is because yes, in fact, at 4 Sloane is on her way into life without me and I am, unconsciously, having a hard time. My hubby keeps reminding me that the life I knew as a mom is going to change as Sloane enters full day pre-k.
I think being a mom is a full time job for every one of us. Unless you are presently one, I do not think you understand how non-stop it is in all aspects of life. But our world...it was a bit more....
A motherless first time mom blessed with a child with a medical need can cause tighter bonds...to say the least.
I am reeling with the wonderful positive changes in our family...Sloane's laryngeal cleft issues have for sure taken a back seat to normal 4 year old problems (like the deer tick I removed from her belly yesterday), our lives are no longer hanging on the next steps (we have done all we can for Sloane's laryngeal cleft to this point), I am not gearing up for weekly or monthly check-ins with any medical professionals, and when Sloane takes a gulp of water.....I don't hold my breath while she gasps for hers. Life is good!
But I am feeling a bit off-kilter....my whole life revolved around Sloane and her laryngeal cleft (good, bad, healthy or unhealthy) and now I will have more of a normal mom balance in my personal world which is throwing me for a loop.
The static has been outright directed and clear like: What will Supermom wife do now?? and then I know there have been some subtle whispers behind my back. I know that my feelings don't have everything to do with a job or time. Its more the big picture of the changes to come...the lack of complete control, the little buds of wings that Sloane has started to grow, and the fact that she is growing up physically and emotionally.
So come Sunday....at 1:57am....Sloane will be 4! Four years ago, I had no clue how motherhood would shape me, fulfill me and bring me life. I had no idea that I would turn into a helicopter mom. I had no forethought that years would flash by and I would have empty day-time nest syndrome by the time Sloane was 4.
There is an almost 4 year old in our squealing with delight over her approaching birthday.
There is an almost 42 year old mom aching inside because her baby is turning 4.
And there is an almost 39 year old dad managing us both........
Driving in the car last week.....Sloane told me after 4 she will turn 5 and then she won't need mommy anymore!! My heart tore, it broke and a wave of sadness came over me. I explained that she will always need a mommy and then, in her ever so sassy way, she said...well, you don't have a mommy! And then the conversation took a whole another turn.
The static buzzing around me is because yes, in fact, at 4 Sloane is on her way into life without me and I am, unconsciously, having a hard time. My hubby keeps reminding me that the life I knew as a mom is going to change as Sloane enters full day pre-k.
I think being a mom is a full time job for every one of us. Unless you are presently one, I do not think you understand how non-stop it is in all aspects of life. But our world...it was a bit more....
A motherless first time mom blessed with a child with a medical need can cause tighter bonds...to say the least.
I am reeling with the wonderful positive changes in our family...Sloane's laryngeal cleft issues have for sure taken a back seat to normal 4 year old problems (like the deer tick I removed from her belly yesterday), our lives are no longer hanging on the next steps (we have done all we can for Sloane's laryngeal cleft to this point), I am not gearing up for weekly or monthly check-ins with any medical professionals, and when Sloane takes a gulp of water.....I don't hold my breath while she gasps for hers. Life is good!
But I am feeling a bit off-kilter....my whole life revolved around Sloane and her laryngeal cleft (good, bad, healthy or unhealthy) and now I will have more of a normal mom balance in my personal world which is throwing me for a loop.
The static has been outright directed and clear like: What will Supermom wife do now?? and then I know there have been some subtle whispers behind my back. I know that my feelings don't have everything to do with a job or time. Its more the big picture of the changes to come...the lack of complete control, the little buds of wings that Sloane has started to grow, and the fact that she is growing up physically and emotionally.
So come Sunday....at 1:57am....Sloane will be 4! Four years ago, I had no clue how motherhood would shape me, fulfill me and bring me life. I had no idea that I would turn into a helicopter mom. I had no forethought that years would flash by and I would have empty day-time nest syndrome by the time Sloane was 4.
There is an almost 4 year old in our squealing with delight over her approaching birthday.
There is an almost 42 year old mom aching inside because her baby is turning 4.
And there is an almost 39 year old dad managing us both........
Thursday, June 26, 2014
A Trade Off
How could almost one month gone by since I've written a post?? Does that mean it has all been good news on our end? Or have we been so busy that I haven't had time to update our Laryngeal Cleft world? I would say both. I have been on the blog....checking out our stats and the current viewings. It is always nice to see how many of our readers are from over seas. Just this month, we have gained a large popularity in Singapore and Australia. Pretty impressive. It makes wonder about all the parents in the world trying to navigate their Laryngeal Cleft journey. My only help is that A Sip Of Heaven is helping them on some level.
Sloane is doing well; creeping up on 4 years old in less than a month. She is off her inhaler and aside from an occasional wheeze here and there, I do not see any major issues. If any respiratory issues arise sooner than later, we will revisit the need for her inhaler. As for now, the plan is to keep her off of it until winter.
One very nice thing is that her facial skin is once again on its way to looking like porcelain. I don't think I ever posted about the effects of the inhaler on her cheeks, chin and bridge of her nose. Not sure if it was a coincidence or not, but once we started using the inhaler, she broke out with a bumpy appearance in those areas. Steroid acne?? Maybe? 3 appointments with a dermatologist over the course of 6 months and 3 creams later, not much of an improvement. But one week off the inhaler and a noticeable difference.
Now on to the most important news.......Do I dare say that I think Sloane is coughing less when drinking liquids continuously? I think so! She has the occasional cough. It's frequency is much less than it was before surgery. My thought is that her lungs are clearer, less junky, and becoming free of aspirations. Does that mean that surgery was successful....I would say so!! It is almost scary to say it. I believe it because I notice a difference, but the fear is that I could be wearing rose colored glasses when I make that statement.
The fact is that I am the only one who can make that statement. I am the only one who watches her drink day in and day out. Of course, my hubby could interject his opinion but it is me who knows the drill. So very quietly I say it, if someone asks. In a tiny voice I say, " I think she is coughing less." I'm afraid to scream it from the rooftops in fear that I am wrong.
I trust myself to think that Sloane is coughing less because we know both stitches were intact post surgery, we know that Dr. Rahbar is a specialist like no other in our eyes, and we know the odds of Sloane needing a third surgery to close her cleft tighter were minimal.
If there is one thing I know for sure without a doubt.....it is that Sloane is a nosier breather just as predicted because her airway is more narrow. The tiniest trade-off for healthy lungs!
Sloane is doing well; creeping up on 4 years old in less than a month. She is off her inhaler and aside from an occasional wheeze here and there, I do not see any major issues. If any respiratory issues arise sooner than later, we will revisit the need for her inhaler. As for now, the plan is to keep her off of it until winter.
One very nice thing is that her facial skin is once again on its way to looking like porcelain. I don't think I ever posted about the effects of the inhaler on her cheeks, chin and bridge of her nose. Not sure if it was a coincidence or not, but once we started using the inhaler, she broke out with a bumpy appearance in those areas. Steroid acne?? Maybe? 3 appointments with a dermatologist over the course of 6 months and 3 creams later, not much of an improvement. But one week off the inhaler and a noticeable difference.
Now on to the most important news.......Do I dare say that I think Sloane is coughing less when drinking liquids continuously? I think so! She has the occasional cough. It's frequency is much less than it was before surgery. My thought is that her lungs are clearer, less junky, and becoming free of aspirations. Does that mean that surgery was successful....I would say so!! It is almost scary to say it. I believe it because I notice a difference, but the fear is that I could be wearing rose colored glasses when I make that statement.
The fact is that I am the only one who can make that statement. I am the only one who watches her drink day in and day out. Of course, my hubby could interject his opinion but it is me who knows the drill. So very quietly I say it, if someone asks. In a tiny voice I say, " I think she is coughing less." I'm afraid to scream it from the rooftops in fear that I am wrong.
I trust myself to think that Sloane is coughing less because we know both stitches were intact post surgery, we know that Dr. Rahbar is a specialist like no other in our eyes, and we know the odds of Sloane needing a third surgery to close her cleft tighter were minimal.
If there is one thing I know for sure without a doubt.....it is that Sloane is a nosier breather just as predicted because her airway is more narrow. The tiniest trade-off for healthy lungs!
Thursday, May 29, 2014
Two, 2 and 1,2
There are 2! 2 were seen! 2 remain! 2 intact stitches were viewed by Dr. Rahbar in Sloane's airway yesterday!!! Exactly what we wanted.....2!
Sloane is 3 weeks post-op and Tuesday was the day for our airway scope with Dr. Rahbar. I will save everyone the details and just simply say....it did not go well at all. The results could not have been more wonderful. Two stitches STILL intact and healing just the way Dr. Rahbar wanted. A huge sigh of relief could be heard throughout the room and actually across the country as my hubby was down south. Ha!
The scope itself was horrible. I am pretty sure that is the word mammie used to describe it to poppie. It was either horrible or terrible. Either way, quite accurate. Sloane was beyond upset, physically aggressive to protect her orifices from him entering them and inconsolable to the point that Dr. Rahbar left the room for her to calm down in between attempts to scope her.
It was the 2nd attempt with 4 adults holding her down that got the job done. Pretty terrible, pretty horrible. Everyone in the room felt badly when all was said and done. There was no choice. We needed to know.....how had her recovery gone, what kind of healing was happening, and were there 2???
And there are 2! Here is where we stand:
Sloane will not see Dr. Rahbar for 6 months to check-in, follow-up, re-group. His words were clear....carry on as we have...not a problem as I THINK Sloane is coughing less when taking in large gulps of liquids. :) He also wanted us to remember this isn't just a cleft issue anymore...it is also an airway issue. We understand as her airway was made tighter. And yes, I do think at times that she is noisier than she had been...usually when she is winded.
We will discontinue her inhaler in a few weeks after her swelling dissipates and any residual secretions have had time to work themselves out. We may bring it back out into rotation for next winter. I'm sure we will discuss at our 6 month check-up.
Sloane collapsed on the ride home which hasn't happened in over a year. She was drained. There was a trip to Toys R Us for a prize ($9.00 baby stroller) and the old faithful cup of watermelon Del's.
One of my dearest friends today said to me...I am so glad this is behind you now. You can enjoy your summer without worrying about any of this.....And that is the truth. I am very relieved our 2nd cleft repair is behind us and looking forward to going back to normal life without an impending surgery looming around us....
Tomorrow is Sloane's last day of her first year of preschool.........OMG!!
Sloane is 3 weeks post-op and Tuesday was the day for our airway scope with Dr. Rahbar. I will save everyone the details and just simply say....it did not go well at all. The results could not have been more wonderful. Two stitches STILL intact and healing just the way Dr. Rahbar wanted. A huge sigh of relief could be heard throughout the room and actually across the country as my hubby was down south. Ha!
The scope itself was horrible. I am pretty sure that is the word mammie used to describe it to poppie. It was either horrible or terrible. Either way, quite accurate. Sloane was beyond upset, physically aggressive to protect her orifices from him entering them and inconsolable to the point that Dr. Rahbar left the room for her to calm down in between attempts to scope her.
It was the 2nd attempt with 4 adults holding her down that got the job done. Pretty terrible, pretty horrible. Everyone in the room felt badly when all was said and done. There was no choice. We needed to know.....how had her recovery gone, what kind of healing was happening, and were there 2???
And there are 2! Here is where we stand:
Sloane will not see Dr. Rahbar for 6 months to check-in, follow-up, re-group. His words were clear....carry on as we have...not a problem as I THINK Sloane is coughing less when taking in large gulps of liquids. :) He also wanted us to remember this isn't just a cleft issue anymore...it is also an airway issue. We understand as her airway was made tighter. And yes, I do think at times that she is noisier than she had been...usually when she is winded.
We will discontinue her inhaler in a few weeks after her swelling dissipates and any residual secretions have had time to work themselves out. We may bring it back out into rotation for next winter. I'm sure we will discuss at our 6 month check-up.
Sloane collapsed on the ride home which hasn't happened in over a year. She was drained. There was a trip to Toys R Us for a prize ($9.00 baby stroller) and the old faithful cup of watermelon Del's.
One of my dearest friends today said to me...I am so glad this is behind you now. You can enjoy your summer without worrying about any of this.....And that is the truth. I am very relieved our 2nd cleft repair is behind us and looking forward to going back to normal life without an impending surgery looming around us....
Tomorrow is Sloane's last day of her first year of preschool.........OMG!!
Wednesday, May 14, 2014
One Week Down
One week after our arrival home from Children's from cleft surgery #2, Sloane went to school today. I was on the fence until I was putting her in time out and she said "Momma, I don't think you should do that. Can't hurt my throat." I can not make this shit up!!! It actually rolls out of her mouth!! Many days, my hubby and I shake our heads. We know we are in for it in years to come. Once she said those words to me, I realized it was time for her to go to school and resume our normal schedule.
Dr. Rahbar had requested a week of recuperation and we had in fact accomplished that. We had no major restrictions on Sloane's diet or liquid intake so all is going swimmingly in that area. He had asked us to limit the water she drank for the first few days....simply because it is the thinnest liquid and therefore the hardest to swallow for her newly lasered and stitched throat! The thinner the liquid, the more troublesome to the swallow of a laryngeal cleft child.
It has not been easy to keep Sloane's activity level or voice on the low side! She is naturally a live wire ready to go! and a loud talker like her momma!! I wish this wasn't the case, but 2 girls in this house are louder than most. I asked her teachers today for quieter play at recess.....and I found out that the sandbox was her choice! Perfect!! Sloane was excited to see her friends and they gave her the warmest welcome!
Many people have been anxious to know, what know.....what happens now that the surgery is done. As far as I know, 2 things are happening.
Beyond those 2 things, I am unsure what approach we are taking. Will there be a MBS (swallow study) to access the results of our 2nd surgery OR will Dr. Rahbar see us in 6 months to hear my day to day mother opinion Or do I dare to think (please let this not even be an option...I am feeling as though putting Sloane under 8 times in less than 4 years is enough for her little body) that he will want to scope Sloane under anesthesia again in months or a year to see what her cleft looks like?????
I am very happy to be back to normal life as the momma. The washing machine is turning, chicken is marinating, the vacuum got some use and the anxiety in the house is at a lull!!
Dr. Rahbar had requested a week of recuperation and we had in fact accomplished that. We had no major restrictions on Sloane's diet or liquid intake so all is going swimmingly in that area. He had asked us to limit the water she drank for the first few days....simply because it is the thinnest liquid and therefore the hardest to swallow for her newly lasered and stitched throat! The thinner the liquid, the more troublesome to the swallow of a laryngeal cleft child.
It has not been easy to keep Sloane's activity level or voice on the low side! She is naturally a live wire ready to go! and a loud talker like her momma!! I wish this wasn't the case, but 2 girls in this house are louder than most. I asked her teachers today for quieter play at recess.....and I found out that the sandbox was her choice! Perfect!! Sloane was excited to see her friends and they gave her the warmest welcome!
Many people have been anxious to know, what know.....what happens now that the surgery is done. As far as I know, 2 things are happening.
- The first being that Sloane will stay on her inhaler for the next month to help with any residual swelling or secretions in her lungs. We will make an appt. with our pulmonologist for mid-June to discuss the plan moving forward.
- We are having our follow-up scope on Tuesday, May 27th. Dr. Rahbar is going to take a look into Sloane's airway to check out his work. I am sure at that appointment we will talk about next steps for Sloane.
Beyond those 2 things, I am unsure what approach we are taking. Will there be a MBS (swallow study) to access the results of our 2nd surgery OR will Dr. Rahbar see us in 6 months to hear my day to day mother opinion Or do I dare to think (please let this not even be an option...I am feeling as though putting Sloane under 8 times in less than 4 years is enough for her little body) that he will want to scope Sloane under anesthesia again in months or a year to see what her cleft looks like?????
I am very happy to be back to normal life as the momma. The washing machine is turning, chicken is marinating, the vacuum got some use and the anxiety in the house is at a lull!!
Tuesday, May 13, 2014
One Eye Open
Sleeping in a hospital isn't sleeping. It is a sequence of closing your eyes and opening them when beeps occurs, when a nurse is jostles you, and when true silence is heard. Sloane and I made it through the first night after surgery with no alarming events. I was brought right back to our NICU nights with the sounds of the beeps around us and the heart-breaking sights.
One part of the anticipation of Sloane's surgery was rooted in our hospital stay. The visions at Children's can be heart-breaking. Walking around the ICU hurt. There were families like us, in the past, who were living there for months. Patients' rooms were decorated like bedrooms from home and the family room looked like a kitchen you would see in a dorm room. Food labeled with each person's name. I thought of the NICU...our 7+ weeks of life. We were these families except our child was an infant. No words were needed to explain the whys of where we were. These families had children. Children the age of Sloane give or take a year and they there living in a hospital with their sick child. I could not imagine the conversations between parent and child. Heart-breaking. Our 24 hours in the ICU left us with a sick feeling down to our cores.
My aunt, ti-ti, summed it up best......"Anyone who thinks they have problems, needs to spend an hour here. Then they will see what real problems are." Aint that the truth!! Every time we go to Children's, I am left feeling like....can I please go home with my child and her cleft and never come back here again. In our home, Sloane's cleft was and can be at times life altering. But in the world of illness, disorders, birth defects, and any health concern.....one hour at Children's shows us that Sloane's cleft is manageable in comparison to what some children and their parents face.
Once we opened our eyes officially on Tuesday, Sloane was better.... but standing firm in her refusal to take orally meds. She had fought them off thru Monday night. I didn't think she would be so strong in her convictions in the hospital in front of the doctors and nurses. Luckily we plopped or pushed in some Tylenol suppositories while she was out like a light! haha!!! We were moved to a regular floor and battled through the next few hours of Sloane being not her joyful self. When asked, she said she had no ouchies, but her affect begged to differ.
Come Tuesday night, we unplugged her IVs and took a walk. Sloane couldn't believe it!! She was up and out of her bed. We saw a nurse that had Sloane 3 years ago at her first cleft repair. I remembered her vividly because she encouraged us strongly to let Sloane (9 months) sit in her stroller late at night next to her while she charted so my hubby and I could go to dinner. When I was reminding her of the story, I couldn't actually believe I did that back then. But I had.
We spent most of Tuesday night after mammie, ti-ti, auntie ronda, and Jamie's visits and a balloon delivery from cuzzy......walking. All Sloane wanted to do was walk around now that she knew she could. We walked and we walked. It was nice to Sloane to get some movement. Long after dinner, my hubby headed out and his 2 girls nestled into bed together again and slept. Sloane with 2 eyes shut and me with one eye open!
We got 80% clearance to come home at 4:37am...yes, 4:37am. That's when Dr. Rahbar's staff came in to see Sloane. I couldn't believe that at 4:37am we were in a full discussion about Sloane's progress!! But we were! The doctors had 2 eyes open!!
Wednesday am was LONG........the waiting game! We waited for the A-OK from Dr. Rahbar to come home and then waited into early afternoon to be discharged. While we waited for our car, Sloane said: I can't wait to go home. It's going to be a new day!!!! I had to laugh!!
Once home, Sloane was so excited to see her things and play...play with no running, no jumping, no yelling, no crying, no rough play.....
One part of the anticipation of Sloane's surgery was rooted in our hospital stay. The visions at Children's can be heart-breaking. Walking around the ICU hurt. There were families like us, in the past, who were living there for months. Patients' rooms were decorated like bedrooms from home and the family room looked like a kitchen you would see in a dorm room. Food labeled with each person's name. I thought of the NICU...our 7+ weeks of life. We were these families except our child was an infant. No words were needed to explain the whys of where we were. These families had children. Children the age of Sloane give or take a year and they there living in a hospital with their sick child. I could not imagine the conversations between parent and child. Heart-breaking. Our 24 hours in the ICU left us with a sick feeling down to our cores.
My aunt, ti-ti, summed it up best......"Anyone who thinks they have problems, needs to spend an hour here. Then they will see what real problems are." Aint that the truth!! Every time we go to Children's, I am left feeling like....can I please go home with my child and her cleft and never come back here again. In our home, Sloane's cleft was and can be at times life altering. But in the world of illness, disorders, birth defects, and any health concern.....one hour at Children's shows us that Sloane's cleft is manageable in comparison to what some children and their parents face.
Once we opened our eyes officially on Tuesday, Sloane was better.... but standing firm in her refusal to take orally meds. She had fought them off thru Monday night. I didn't think she would be so strong in her convictions in the hospital in front of the doctors and nurses. Luckily we plopped or pushed in some Tylenol suppositories while she was out like a light! haha!!! We were moved to a regular floor and battled through the next few hours of Sloane being not her joyful self. When asked, she said she had no ouchies, but her affect begged to differ.
Come Tuesday night, we unplugged her IVs and took a walk. Sloane couldn't believe it!! She was up and out of her bed. We saw a nurse that had Sloane 3 years ago at her first cleft repair. I remembered her vividly because she encouraged us strongly to let Sloane (9 months) sit in her stroller late at night next to her while she charted so my hubby and I could go to dinner. When I was reminding her of the story, I couldn't actually believe I did that back then. But I had.
We spent most of Tuesday night after mammie, ti-ti, auntie ronda, and Jamie's visits and a balloon delivery from cuzzy......walking. All Sloane wanted to do was walk around now that she knew she could. We walked and we walked. It was nice to Sloane to get some movement. Long after dinner, my hubby headed out and his 2 girls nestled into bed together again and slept. Sloane with 2 eyes shut and me with one eye open!
We got 80% clearance to come home at 4:37am...yes, 4:37am. That's when Dr. Rahbar's staff came in to see Sloane. I couldn't believe that at 4:37am we were in a full discussion about Sloane's progress!! But we were! The doctors had 2 eyes open!!
Wednesday am was LONG........the waiting game! We waited for the A-OK from Dr. Rahbar to come home and then waited into early afternoon to be discharged. While we waited for our car, Sloane said: I can't wait to go home. It's going to be a new day!!!! I had to laugh!!
Once home, Sloane was so excited to see her things and play...play with no running, no jumping, no yelling, no crying, no rough play.....
Friday, May 9, 2014
Laryngeal Cleft Surgery #2
No yelling. No running. No jumping. No crying. No coughing. No rough play. Those were Dr. Rahbar's restrictions when he met with us after surgery. Had he met my child? That'll be easy, since I have the most spirited 3 year old in the neighborhood!!!! hahaha So we have prison rules this week here at 1029 (the nickname for our house).
Sloane's surgery went as well as we expected. Ill do a breakdown and back -tracking to get all my followers up to speed.
Monday:
Thankfully, Sloane had eaten like a truck driver on Sunday night so she didn't ask for any food or drink until 9:30am. I explain that Dr. Rahbar didn't want us to eat and that we could only drink apple juice or water. She took it but not without a sass comment and huff about the fact that her nail polish had to come off too and now she couldn't eat. To say the level of stress was high through the am would be accurate. Our phones were buzzing with texts of good luck wishes and love constantly. Sloane's big day had entered into the hearts and minds of those around us.
We loaded the car and we were off. There was only one quick stop to grab mammie and say hi to poppie. Let me just say...thank you above for the dvd player in my truck. It has helped make the ride to Children's much more enjoyable all around!! Sloane watched a movie and we all chatted about misc things on the way up. Noone touched the days events with a 10 foot pole. Once we got to surgical intake area, it was clear that Dr. Rahbar was behind and our 1:15 start time was going to change. As time ticked, Sloane got a bit more quiet and inquisitive. And I questioned again why we were doing this.....oh yes, it is because Sloane still has constant unnecessary secretions in her lungs from aspirations and her lungs aren't able to function at 100%.
Right around 1:00, a familiar face walked in. Jane, the pre-op nurse. It is a bit sick and twisted that we know the pre-op nurses and they know us. That tells me we have had one too many surgical procedures and scopes at Children's. It was so nice to see Jane's face though. A bit of calm came over me. She escorted us into the pre-op area and more and more familiar faces popped up. Comforting on one hand and ridiculous on the other.
Sloane was quiet as time was ticking. She was getting nervous after her johnny was on; asking me: are we done yet?, can we go see mammie now, i saw Dr. Rahbar? momma, can i go give mammie a hug? I kept thinking....my poor child, we haven't even started yet. It was a longer wait than I would have liked and in the past, we have given Sloane walking around privileges while she waits. But on Monday, I knew the parent waiting area had one mammie, one poppie, one nonni and one Shu who were all emotional themselves about the next few hours. So a quick lap around the halls to say hello was out of the question for everyone involved. I was holding on by a blink.
The anesthesiologist came over to chat and yes, we knew each other too. She suggested giving Sloane something orally to sedate her a bit before I did my mask holding duties, but Sloane wasn't having it. It didn't turn Jerry Springer, but Sloane made sure everyone in the OR knew she wasn't into medicine at all! I put on my OR clothes....and off we walked. Sloane was so brave. She walked herself right into the OR, sat in my lap and stayed calm. We played a "can you guess what flavor you are smelling as I held the mask" and after a few minutes, I placed my sleeping child down on the gurney and made my exit. Not before I had my moment with Dr. Rahbar. He looked at me and I looked in his eyes begging him to take care of my baby.
And the wait began.....I made the mistake of saying that I wanted a water. Well, that opened the food conversation. I would have just assumed ate a bag of almonds Au Bon Pain downstairs but Sloane's people wanted more. More like, lets walk to Bertuccis one block away. I was silenced by the thought and out numbered. We had 2 hours so why not...I heard. I decided to keep the peace and go. Mentally, I was sitting in the family waiting area. I am pretty sure Sloane's people put me on the inside of the booth so I wouldn't run. I was trapped in my sit. As soon as I swallowed my last bite in 10 seconds flat, I announced that I was heading back to the hospital. And after a moment all of them decided to join me.
As I knew it would happen, my phone rang. Dr. Rahbar was looking for me. We all power walked back to the 3rd floor and there he was with photos in hand. All I really heard was "Sloane is fine. All went well. She is in ICU." What he did say was that:
he lasered the area,
he put in 2 stitches to close up an opening the size of a tip of a pen,
he would scope her in 2-3 weeks to check the healing,
he wondered if she popped a stitch after her last repair based on what he saw,
he suggested softer foods and a limit on liquids as it is the hardest to swallow,
he thinks she may be noisier in her airway now,
AND he wanted no yelling, no crying, no coughing, no running, no jumping and no rough play.
The moment he walked away....Sloane's people stopped holding it together and let the day's emotions all go.
There was a mad dash up 4 floors to ICU. Sloane wasn't going to the recovery room. She would recover in ICU. A few minutes later, the big game started. My hubby and I walked around the corner and I heard her. Sloane was wailing uncontrollably and I wasn't holding her. WTF!!!! I rushed in and took my baby from the nurse's arms. She was inconsolable and I was heart broken. We were sitting in the chair like the days in the NICU. Sloane had a hard time coming out of anesthesia. Harder than they like so in walked the critical care doctors to access. Super duper!! Within a few hours, she was settled down and he hunkered down into our new home for the night. Dinner was a Popsicle, dessert was another Popsicle and the late night treat was a Popsicle. Plenty of time spent with her people and even some tv shows. Well beyond night night time, my hubby left for the hotel and climbed into Sloane's bed. The closer I was to her, the more acceptable the day felt.
To be continued....................
Sloane's surgery went as well as we expected. Ill do a breakdown and back -tracking to get all my followers up to speed.
Monday:
Thankfully, Sloane had eaten like a truck driver on Sunday night so she didn't ask for any food or drink until 9:30am. I explain that Dr. Rahbar didn't want us to eat and that we could only drink apple juice or water. She took it but not without a sass comment and huff about the fact that her nail polish had to come off too and now she couldn't eat. To say the level of stress was high through the am would be accurate. Our phones were buzzing with texts of good luck wishes and love constantly. Sloane's big day had entered into the hearts and minds of those around us.
We loaded the car and we were off. There was only one quick stop to grab mammie and say hi to poppie. Let me just say...thank you above for the dvd player in my truck. It has helped make the ride to Children's much more enjoyable all around!! Sloane watched a movie and we all chatted about misc things on the way up. Noone touched the days events with a 10 foot pole. Once we got to surgical intake area, it was clear that Dr. Rahbar was behind and our 1:15 start time was going to change. As time ticked, Sloane got a bit more quiet and inquisitive. And I questioned again why we were doing this.....oh yes, it is because Sloane still has constant unnecessary secretions in her lungs from aspirations and her lungs aren't able to function at 100%.
Right around 1:00, a familiar face walked in. Jane, the pre-op nurse. It is a bit sick and twisted that we know the pre-op nurses and they know us. That tells me we have had one too many surgical procedures and scopes at Children's. It was so nice to see Jane's face though. A bit of calm came over me. She escorted us into the pre-op area and more and more familiar faces popped up. Comforting on one hand and ridiculous on the other.
Sloane was quiet as time was ticking. She was getting nervous after her johnny was on; asking me: are we done yet?, can we go see mammie now, i saw Dr. Rahbar? momma, can i go give mammie a hug? I kept thinking....my poor child, we haven't even started yet. It was a longer wait than I would have liked and in the past, we have given Sloane walking around privileges while she waits. But on Monday, I knew the parent waiting area had one mammie, one poppie, one nonni and one Shu who were all emotional themselves about the next few hours. So a quick lap around the halls to say hello was out of the question for everyone involved. I was holding on by a blink.
The anesthesiologist came over to chat and yes, we knew each other too. She suggested giving Sloane something orally to sedate her a bit before I did my mask holding duties, but Sloane wasn't having it. It didn't turn Jerry Springer, but Sloane made sure everyone in the OR knew she wasn't into medicine at all! I put on my OR clothes....and off we walked. Sloane was so brave. She walked herself right into the OR, sat in my lap and stayed calm. We played a "can you guess what flavor you are smelling as I held the mask" and after a few minutes, I placed my sleeping child down on the gurney and made my exit. Not before I had my moment with Dr. Rahbar. He looked at me and I looked in his eyes begging him to take care of my baby.
And the wait began.....I made the mistake of saying that I wanted a water. Well, that opened the food conversation. I would have just assumed ate a bag of almonds Au Bon Pain downstairs but Sloane's people wanted more. More like, lets walk to Bertuccis one block away. I was silenced by the thought and out numbered. We had 2 hours so why not...I heard. I decided to keep the peace and go. Mentally, I was sitting in the family waiting area. I am pretty sure Sloane's people put me on the inside of the booth so I wouldn't run. I was trapped in my sit. As soon as I swallowed my last bite in 10 seconds flat, I announced that I was heading back to the hospital. And after a moment all of them decided to join me.
As I knew it would happen, my phone rang. Dr. Rahbar was looking for me. We all power walked back to the 3rd floor and there he was with photos in hand. All I really heard was "Sloane is fine. All went well. She is in ICU." What he did say was that:
he lasered the area,
he put in 2 stitches to close up an opening the size of a tip of a pen,
he would scope her in 2-3 weeks to check the healing,
he wondered if she popped a stitch after her last repair based on what he saw,
he suggested softer foods and a limit on liquids as it is the hardest to swallow,
he thinks she may be noisier in her airway now,
AND he wanted no yelling, no crying, no coughing, no running, no jumping and no rough play.
The moment he walked away....Sloane's people stopped holding it together and let the day's emotions all go.
There was a mad dash up 4 floors to ICU. Sloane wasn't going to the recovery room. She would recover in ICU. A few minutes later, the big game started. My hubby and I walked around the corner and I heard her. Sloane was wailing uncontrollably and I wasn't holding her. WTF!!!! I rushed in and took my baby from the nurse's arms. She was inconsolable and I was heart broken. We were sitting in the chair like the days in the NICU. Sloane had a hard time coming out of anesthesia. Harder than they like so in walked the critical care doctors to access. Super duper!! Within a few hours, she was settled down and he hunkered down into our new home for the night. Dinner was a Popsicle, dessert was another Popsicle and the late night treat was a Popsicle. Plenty of time spent with her people and even some tv shows. Well beyond night night time, my hubby left for the hotel and climbed into Sloane's bed. The closer I was to her, the more acceptable the day felt.
To be continued....................
Getting Down to Basics
Let's talk Laryngeal Cleft facts:
What is laryngeal cleft?
Laryngeal cleft (fissure of the larynx) is a rare abnormality of the separation between the larynx, or voice box, and the esophagus. It appears 1 in every 10,000 to 20,000 births. It is more frequent in male births with a 5:3 ratio.
When the larynx develops normally it is completely separate from the esophagus, so swallowed foods go directly into the stomach.
A laryngeal cleft creates an opening/gap between the larynx and the esophagus so food and liquid can pass through the larynx into the airway and then lungs. Laryngeal cleft causes swallowing problems. Coughing, gagging, frequent respiratory infections, and chronic lung disease are also symptoms of the disorder.
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| The 4 Laryngeal Cleft Levels Sloane's cleft was a level 2 almost a level 3. Requiring not one, but 2 surgeries over time to close it fully. Surgery one in March 2011 at 9 months of age. Surgery two in May 2014 at 3 years 10 months.  Surgical Pictures from a cleft repair Sloane's cleft surgeries have resembled these photos. Her surgeon lasers the tissue surrounding the cleft and then sutures up the area with dissolvable stitches. Her 2nd surgery on May 5, 2014 required 2 stitches closing up an area the size of a tip of a pen. Her first surgery in March 2011 required 3-4 stitches. |
Sunday, May 4, 2014
It Is A Big Deal
Pre-op was done on Thursday. Check that box! Nothing eventful occurred. Pre-op is always the same. I think we could do it ourselves if they let us.
I found it very funny that the anesthesiologist asked me how I felt about holding the mask over Sloane face to put her to sleep?? Really!?! I thought?? Did you just ask me that??? What I wanted to say in all my North Providence sarcasm was.......I love it. Actually it has been my favorite part of parenting. Watching my child scream and cry while I can do nothing to help her and have to remain composed is very fun. It is as much fun as I had going out with my girlfriends Friday night for drinks!!! SERIOUSLY!!!! I didn't say that no-one panic! I took the high road and said "Well, I have done it before. Its fine. I am her mom. Its my job." I truly think Mammie was proud of my answer :) as she sat beside me. She knows I am not exactly in my best inner self this week and may have said some things that weren't exactly appropriate! LOL
The anesthesiologist did redeem herself when she spoke these words while we discussed Monday's events...."this surgery is a big deal. airway surgeries are a big deal." WHHHAAATTTT?????? I couldn't believe it. Did she just say that???? I looked her in the eyes and said "you have no idea how big this is. Thank you for saying that." Once again, I made Mammie proud. I kept my mouth shut, didn't rattle off my laryngeal cleft journey business and left our appointment with an inner smile. Yes, this is a big deal! This is the biggest deal in my life. This is my child.
I did wonder if the location of Sloane's surgery was adding to my overall concern? Would I be as worked up if it was something more mainstream like tubes in the ears, tonsils, hernia, or a broken limb??? I don't know. I do think the airway, throat, vocal cords, trachea thing steps it up a notch for me. We talked at pre-op about the option that may Sloane come out of surgery intubated. Not ideal, but I understand why this may be an option tomorrow. The area may be swollen from the laser, stitches, shear manipulation of it AND we are closing Sloane's cleft tighter hence making a portion of her airway more narrow. I have seen Sloane intubated before, at 22 days old, after her g-tube surgery. It is not tops on my lists of memories, but it does need to happen. We are prepared. If she has to be intubated, she will be heavily sedated so she wont know. Thank you very much!!
Surgery is scheduled for 1:15 on tomorrow. Not the best time seeing as though Sloane can't eat after midnight but also not the worst either. In the scheme of things, the type of surgery Sloane is having is not nearly as extensive as the surgeries that will happen on Monday in Children's ORs so we understand that our daughter's surgery doesn't take precedence over some others. We will begin our day around 10:30 when we start the ride to Children's. Once there, we know it'll been a mix between hurry up and wait and a whirlwind of events. Surgical check-in is always interesting. Sometimes, I cant believe that I have done check in for a procedure that requires anesthesia 8 times on my almost 4 year old!! It can be surreal. Sloane will be under from start to finish about three or so hours....One thing I know for sure is that it'll be a very quiet 3 hours in the family waiting area for us.
I have all the faith in Dr. Rahbar and his team. He has performed this surgery about 200 times and Sloane will be his 4th or 5th child who has needed a 2nd surgery. This isn't his first rodeo!! Although tomorrow, we will have a moment when I will lock eyes with him in the OR while holding Sloane and beg him to take the best possible care of my child that he is humanly able to do. We knew that tomorrow's 2nd cleft repair was a possibility right back in March of 2011 after her 1st repair. Dr. Rahbar told us when he came out of the OR after closing it up. I didn't hear him say it...ha....but I know for a fact that he did. It has been confirmed by multiple sources. :)
The packing will begin later. I've managed to re-organize my house 100 times, written a bunch of to-do lists and done all the laundry I could so it is time to crack out the over-night bags. I told Sloane that we are having a sleepover at Dr. Rahbars tonight at dinner and she said ..."well, let me go pack." And she did.
We have not told Sloane anything else yet. It'll be a discussion in the morning. Not sure what approach we will take as the kick-off to "the talk" but I am sure the game plan for the next few days will roll out just fine. I think I am most concerned about denying Sloane food all morning at this point. Once we are at the hospital, new concerns will come to the forefront. I have some new Doc McStuffins and Sofia the First pjs waiting for our over-nights! And a few new treats...not that Sloane needs a thing. She needs not for another toy!!!
The outpouring of care, concern, prayers, and love today has been very sweet. I received lots of phone calls, texts and emails from our closest friends and even more from people we didn't know knew tomorrow was so monumental to us. Very touching. The sentiments are all the same....everything will be fine! And we know if our hearts that it will be but that doesn't make it an easier as parents. Sloane's journey has been lived and breathed for roughly over 1200 days in our home, in our hearts, in our lives. Tomorrow is in fact a big deal...
I found it very funny that the anesthesiologist asked me how I felt about holding the mask over Sloane face to put her to sleep?? Really!?! I thought?? Did you just ask me that??? What I wanted to say in all my North Providence sarcasm was.......I love it. Actually it has been my favorite part of parenting. Watching my child scream and cry while I can do nothing to help her and have to remain composed is very fun. It is as much fun as I had going out with my girlfriends Friday night for drinks!!! SERIOUSLY!!!! I didn't say that no-one panic! I took the high road and said "Well, I have done it before. Its fine. I am her mom. Its my job." I truly think Mammie was proud of my answer :) as she sat beside me. She knows I am not exactly in my best inner self this week and may have said some things that weren't exactly appropriate! LOL
The anesthesiologist did redeem herself when she spoke these words while we discussed Monday's events...."this surgery is a big deal. airway surgeries are a big deal." WHHHAAATTTT?????? I couldn't believe it. Did she just say that???? I looked her in the eyes and said "you have no idea how big this is. Thank you for saying that." Once again, I made Mammie proud. I kept my mouth shut, didn't rattle off my laryngeal cleft journey business and left our appointment with an inner smile. Yes, this is a big deal! This is the biggest deal in my life. This is my child.
I did wonder if the location of Sloane's surgery was adding to my overall concern? Would I be as worked up if it was something more mainstream like tubes in the ears, tonsils, hernia, or a broken limb??? I don't know. I do think the airway, throat, vocal cords, trachea thing steps it up a notch for me. We talked at pre-op about the option that may Sloane come out of surgery intubated. Not ideal, but I understand why this may be an option tomorrow. The area may be swollen from the laser, stitches, shear manipulation of it AND we are closing Sloane's cleft tighter hence making a portion of her airway more narrow. I have seen Sloane intubated before, at 22 days old, after her g-tube surgery. It is not tops on my lists of memories, but it does need to happen. We are prepared. If she has to be intubated, she will be heavily sedated so she wont know. Thank you very much!!
Surgery is scheduled for 1:15 on tomorrow. Not the best time seeing as though Sloane can't eat after midnight but also not the worst either. In the scheme of things, the type of surgery Sloane is having is not nearly as extensive as the surgeries that will happen on Monday in Children's ORs so we understand that our daughter's surgery doesn't take precedence over some others. We will begin our day around 10:30 when we start the ride to Children's. Once there, we know it'll been a mix between hurry up and wait and a whirlwind of events. Surgical check-in is always interesting. Sometimes, I cant believe that I have done check in for a procedure that requires anesthesia 8 times on my almost 4 year old!! It can be surreal. Sloane will be under from start to finish about three or so hours....One thing I know for sure is that it'll be a very quiet 3 hours in the family waiting area for us.
I have all the faith in Dr. Rahbar and his team. He has performed this surgery about 200 times and Sloane will be his 4th or 5th child who has needed a 2nd surgery. This isn't his first rodeo!! Although tomorrow, we will have a moment when I will lock eyes with him in the OR while holding Sloane and beg him to take the best possible care of my child that he is humanly able to do. We knew that tomorrow's 2nd cleft repair was a possibility right back in March of 2011 after her 1st repair. Dr. Rahbar told us when he came out of the OR after closing it up. I didn't hear him say it...ha....but I know for a fact that he did. It has been confirmed by multiple sources. :)
The packing will begin later. I've managed to re-organize my house 100 times, written a bunch of to-do lists and done all the laundry I could so it is time to crack out the over-night bags. I told Sloane that we are having a sleepover at Dr. Rahbars tonight at dinner and she said ..."well, let me go pack." And she did.
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| We have 2 pairs of pjs, 3 pairs of undies, socks, a pretend flat iron and curling iron, beaded necklaces, a baseball hat, a hand mirror, a singing star, a few furry friends and the ever dependable lovey! Not a bad packing job at all!!! |
We have not told Sloane anything else yet. It'll be a discussion in the morning. Not sure what approach we will take as the kick-off to "the talk" but I am sure the game plan for the next few days will roll out just fine. I think I am most concerned about denying Sloane food all morning at this point. Once we are at the hospital, new concerns will come to the forefront. I have some new Doc McStuffins and Sofia the First pjs waiting for our over-nights! And a few new treats...not that Sloane needs a thing. She needs not for another toy!!!
The outpouring of care, concern, prayers, and love today has been very sweet. I received lots of phone calls, texts and emails from our closest friends and even more from people we didn't know knew tomorrow was so monumental to us. Very touching. The sentiments are all the same....everything will be fine! And we know if our hearts that it will be but that doesn't make it an easier as parents. Sloane's journey has been lived and breathed for roughly over 1200 days in our home, in our hearts, in our lives. Tomorrow is in fact a big deal...
Monday, April 28, 2014
It's a Bird, It's a Plane....It's a Lion!!
There is still a lion around and I am looking for a lamb! This household is very tired of the damp, chilly, rainy, cloudy, raw March weather that we are having in the end of April! It made me sad that Saturday was such a wash-out....we weren't able to participate in the March for Babies walk which supports the March of Dimes. Team Sloane had a contingent of familiar and new faces registered to walk...we were excited! But the weather on Saturday am invited anything but outdoor activities. It was weather fit for a duck or rather a lion!!
We were able to raise over $1500.00 once again for the March of Dimes! I am not at all blind to the fact that it is because of Sloane's story and the love of those around her that we are able to contribute to March of Dimes the way that we do each year! We are so appreciative of our family and friend's donations.
I just put Sloane down for a nap and I couldn't help wondering what we will be doing next Monday at this exact time. Will I be resting with Sloane in recovery or will she still be in surgery? We will not find out the time until Friday afternoon. To say that I am all consumed/self-absorbed and in complete defense mode (all descriptions that I do not like to carry) about cleft surgery #2 on Monday is the freaking understatement of the year! I don't feel as embarrassed as I did when a professional told me today that this is all to be expected and its post traumatic.....Monday's upcoming surgery has triggered some emotions, from almost 4 years ago, fit for a lion!!
I decided it would be best to keep myself busy...or try to keep myself busy for the next few days! I found over the past few days that downtime isn't exactly what I need. This lioness used quite a bit of Kleenex when all was still and silent.
One thing I decided to do was organize the pictures from our trip. I miss developing film and having pictures in hand. All this technology has made me lazy. I would never leave a roll of film laying around...yet, I leave pics and movies on my cell and my PC without a thought. So this week, I am going to try to organize our Turks and Caicos pictures so we actually have something to show Sloane! I have all the photo albums my mom made of events when we (Chunka and I) were young and there is something very sweet about looking through them. I would like to give Sloane the same in spite of the technological world we leave in now!!! Here is a teaser for one of my dearest followers who has been asking me for some pictures of our Caribbean dancing queen!
We were able to raise over $1500.00 once again for the March of Dimes! I am not at all blind to the fact that it is because of Sloane's story and the love of those around her that we are able to contribute to March of Dimes the way that we do each year! We are so appreciative of our family and friend's donations.
I just put Sloane down for a nap and I couldn't help wondering what we will be doing next Monday at this exact time. Will I be resting with Sloane in recovery or will she still be in surgery? We will not find out the time until Friday afternoon. To say that I am all consumed/self-absorbed and in complete defense mode (all descriptions that I do not like to carry) about cleft surgery #2 on Monday is the freaking understatement of the year! I don't feel as embarrassed as I did when a professional told me today that this is all to be expected and its post traumatic.....Monday's upcoming surgery has triggered some emotions, from almost 4 years ago, fit for a lion!!
I decided it would be best to keep myself busy...or try to keep myself busy for the next few days! I found over the past few days that downtime isn't exactly what I need. This lioness used quite a bit of Kleenex when all was still and silent.
One thing I decided to do was organize the pictures from our trip. I miss developing film and having pictures in hand. All this technology has made me lazy. I would never leave a roll of film laying around...yet, I leave pics and movies on my cell and my PC without a thought. So this week, I am going to try to organize our Turks and Caicos pictures so we actually have something to show Sloane! I have all the photo albums my mom made of events when we (Chunka and I) were young and there is something very sweet about looking through them. I would like to give Sloane the same in spite of the technological world we leave in now!!! Here is a teaser for one of my dearest followers who has been asking me for some pictures of our Caribbean dancing queen!
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| Ain't no ocean big enough!! |
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| Twinkle Toes! |
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| Nothing like a pair of yellow shoes to bring out some sass!! |
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| The first umbrella drink.....if she is anything like her momma, there are many more to come!! |
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| As you can see....a tan was not an option, as far as I was concerned, for Sloane!! |
Wednesday, April 23, 2014
Double Duty
Sloane, like most 3+year olds, has her moments that make you cringe and bring out the not so great parenting approaches! There are 2 of those moments that you can count on to be ugly....the first one is when Sloane is overtired and the second one is when Sloane has to take medication.
This past week we have battled with getting the Amoxicillin into Sloane twice a day. It is a battle of wits, compromise, bribery, negotiations, threats and at times physical. Sloane can be and usually is violent when she has to take medication. To say it is exhausting is an under statement. A power struggle at its best!
It is no secret that when Sloane is sick, I am not myself. I am on edge and distracted by the illness at hand. The "its time to take your meds" event make it even worse. We have been given advice by other parents, professional doctors and researched the cyber world....but the no matter what approach we take, it doesn't matter med time in our home is a Jerry Springer moment.
This week, I am stuck between the med episodes, the prep for The March for Babies walk on Saturday and Sloane's surgery. I am not myself at all. I am trying hard to balance it all in my head but all 3 are emotional experiences that take me off my game and make me anxious.
I can't say I hate the Amoxicillin as much as I have in the past. I notice that Sloane is coughing more this week and her cough is MUCH looser, MUCH juicier, MUCH noisier. I think the Amoxicillin may be working double duty. Clearing up the ear infection and breaking up some secretions from her aspirations that have been hanging out in Sloane's lungs.
I am sure that Sloane's inhaler has kept the secretions quiet all winter, but we all know that they are there! This little 7 day round of Amoxicillin may have just given them a little wake-up call....up and at 'em.....out you go....don't let the door hit you on the way out....HA!
We are looking forward to the March For Babies on Saturday! A very special day for us. In years past, we have seen some familiar faces for our NICU stay which is very nice! To think that almost 4 years has gone by since we started this journey is remarkable! I was just telling a friend yesterday that 4 years is a long time! I am thankful for how far we have come....I used to worry that Sloane would be in preschool with a feeding tube! But I am also in reflection that we are still on our journey 4 years later. Some days, I cant believe it.
This week, a few people have said to me.....will this be Sloane's last surgery??? And the answer is: We hope so!
This past week we have battled with getting the Amoxicillin into Sloane twice a day. It is a battle of wits, compromise, bribery, negotiations, threats and at times physical. Sloane can be and usually is violent when she has to take medication. To say it is exhausting is an under statement. A power struggle at its best!
It is no secret that when Sloane is sick, I am not myself. I am on edge and distracted by the illness at hand. The "its time to take your meds" event make it even worse. We have been given advice by other parents, professional doctors and researched the cyber world....but the no matter what approach we take, it doesn't matter med time in our home is a Jerry Springer moment.
This week, I am stuck between the med episodes, the prep for The March for Babies walk on Saturday and Sloane's surgery. I am not myself at all. I am trying hard to balance it all in my head but all 3 are emotional experiences that take me off my game and make me anxious.
I can't say I hate the Amoxicillin as much as I have in the past. I notice that Sloane is coughing more this week and her cough is MUCH looser, MUCH juicier, MUCH noisier. I think the Amoxicillin may be working double duty. Clearing up the ear infection and breaking up some secretions from her aspirations that have been hanging out in Sloane's lungs.
I am sure that Sloane's inhaler has kept the secretions quiet all winter, but we all know that they are there! This little 7 day round of Amoxicillin may have just given them a little wake-up call....up and at 'em.....out you go....don't let the door hit you on the way out....HA!
We are looking forward to the March For Babies on Saturday! A very special day for us. In years past, we have seen some familiar faces for our NICU stay which is very nice! To think that almost 4 years has gone by since we started this journey is remarkable! I was just telling a friend yesterday that 4 years is a long time! I am thankful for how far we have come....I used to worry that Sloane would be in preschool with a feeding tube! But I am also in reflection that we are still on our journey 4 years later. Some days, I cant believe it.
This week, a few people have said to me.....will this be Sloane's last surgery??? And the answer is: We hope so!
Thursday, April 17, 2014
Fun Had By All
First, let me apologize for the technical difficulties we are having here at A Sip Of Heaven! Friday am only half of my post about our vacation was sent out in the blog blast to my loyal followers and then Saturday am, a very old post from September was re-sent! My only excuse for this is that I have been blogging from the iPad lately and there are some very small fingers using it when I am not....fingers that end up touching pages they shouldn't!!!
So here it goes again.......
I would call it a complete success! Sloane's first vacation gets a 12 on a scale of 1 -10. From the easy peasy departure flight to the long winded US Customs security mad dash home. We certainly made wonderful family memories.
I am sure some of the passengers on our flights thought we were nuts when we Clorox wiped Sloane's entire seating area and sprayed a bit of Lysol for good measure! Thankfully, The Today Show had just aired a feature on flight travel secrets.....warning passengers that nothing on a plane is cleaned in any way in between flights or at any time. YUCK! Sloane settled into our flight without a concern. She was in awe! In fact, I was concerned that she may be interested in flying a bit more than her father was willing to pay for!!! We arrived in Turks and watching Sloane walked off the plane into the Carribbean air and tropical air was so fun!!! I even took a picture to text back home when..... there clearly were signs stating NO CELL PHONES allowed! The not so friendly police officer didn't exactly share my excitement over seeing my daughter for the first time on a tarmac.
Once we arrived at Beaches, it was vacation, vacation, vacation!! There were water slides and more water slides! Ice cream for lunch! Sand castles built for princesses. Swimming that made the tips of fingers wrinkled. Photo opportunities with characters larger than life. And smiling that made your cheeks ache.
Turks and Caicos is an island that is near and dear to me and my hubby. We both had visited it in the past separately and together. It is one of those places for us that we dream about moving to. The days when we say....forget the easy continental USA/let's move to a different place.....it's the let's go big or go home move!! One of the reasons that we picked Turks as our family vaca location!
Our days were the same....Sloane woke up rearing to go and didn't stop water sliding, lazy rivering, splash pooling it, or floating until she collapsed after lunch, she powered napped in the afternoon and then we beached it until dinner! She filled in the gaps with tropical drinks topped with umbrellas and high fives with Elmo! There was a night time parade that brought tears to my eyes! And breakfast with all the Sesame Street characters was a blast! Tea time with Abby and Elmo was a family event :) Sloane got some island braids and a purple sparkly tattoo! It was a 12 on the scale of 1 - 10!
Did we worry about Sloane's surgery? No. Did we worry about Sloane's cleft? No. Did we wash Sloane's had a hundred million times??? Yes. I happen to think that planes are disgusting and load up on echinacea before I get on one to help ward off any unnecessary germs. My hubby travels weekly so I do know what a trip on the plane can bring home! I did think about Sloane's exposure to jetliner germs and it's timing in regards to surgery. But knowing we had 3 + weeks in between the 2 monumental events felt safe.
My thoughts weren't frivolous. Thursday night from 11pm to 9am, Sloane cried all night, complaining of a sore throat. She had had a runny nose all week so I thought....post nasal drip drying her out or strep throat! We made it thru the night without sleep and waited
eagerly for 8am to grace Dr. Reibman without presence. It cracked me up a bit really....Sloane always seems to get sick at the most in opportune times. I was hosting a double birthday lunch and some egg coloring for the girlies in my family on Friday. My fabulous niece turned 3 on Friday and Titi turned a new double digit on Monday. We were having a girls day and then Sloane was scheduled for some 2nd shift egg coloring at nonni's. All events canceled by 7am on Friday am!
While waiting for our drs. appointment, I contacted my go-to mommy with our sudden illness onset. She alerts me that it could be Sloane's ear?? This is surprising as we have never had an ear infection in our home. Apparently, unbeknownst to me, the throat and the ears and the pain can all get mixed up in a child's thoughts. And sure enough, as my go-to mommy knows, Sloane had an ear infection. My poor love bugs ear had a lovely pool of orange goop sitting at the bottom of it when I finally looked!! Our visit with Dr. Reibman is always eventful. Sloane was asking in he middle of the night to see her if that gives you any idea how I comfy she is so she was quite happy to be sitting in the sailboat room awaiting her arrival. Sloane was clear to tell the doc exactly how she wanted her to touch, or rather not touch her hurting ear. Dr. Reibman just laughs and looks at me with a " oh dear...she is a bit of something" glance each time we spend time with her.
We came home with a round of antibiotics and some ear drops to help us pass the time until Sloane's surgery! Not such a bad ting really....I don't mind killing some of the germs hanging out in her lungs too before surgery :)
So here it goes again.......
I would call it a complete success! Sloane's first vacation gets a 12 on a scale of 1 -10. From the easy peasy departure flight to the long winded US Customs security mad dash home. We certainly made wonderful family memories.
I am sure some of the passengers on our flights thought we were nuts when we Clorox wiped Sloane's entire seating area and sprayed a bit of Lysol for good measure! Thankfully, The Today Show had just aired a feature on flight travel secrets.....warning passengers that nothing on a plane is cleaned in any way in between flights or at any time. YUCK! Sloane settled into our flight without a concern. She was in awe! In fact, I was concerned that she may be interested in flying a bit more than her father was willing to pay for!!! We arrived in Turks and watching Sloane walked off the plane into the Carribbean air and tropical air was so fun!!! I even took a picture to text back home when..... there clearly were signs stating NO CELL PHONES allowed! The not so friendly police officer didn't exactly share my excitement over seeing my daughter for the first time on a tarmac.
Once we arrived at Beaches, it was vacation, vacation, vacation!! There were water slides and more water slides! Ice cream for lunch! Sand castles built for princesses. Swimming that made the tips of fingers wrinkled. Photo opportunities with characters larger than life. And smiling that made your cheeks ache.
Turks and Caicos is an island that is near and dear to me and my hubby. We both had visited it in the past separately and together. It is one of those places for us that we dream about moving to. The days when we say....forget the easy continental USA/let's move to a different place.....it's the let's go big or go home move!! One of the reasons that we picked Turks as our family vaca location!
Our days were the same....Sloane woke up rearing to go and didn't stop water sliding, lazy rivering, splash pooling it, or floating until she collapsed after lunch, she powered napped in the afternoon and then we beached it until dinner! She filled in the gaps with tropical drinks topped with umbrellas and high fives with Elmo! There was a night time parade that brought tears to my eyes! And breakfast with all the Sesame Street characters was a blast! Tea time with Abby and Elmo was a family event :) Sloane got some island braids and a purple sparkly tattoo! It was a 12 on the scale of 1 - 10!
Did we worry about Sloane's surgery? No. Did we worry about Sloane's cleft? No. Did we wash Sloane's had a hundred million times??? Yes. I happen to think that planes are disgusting and load up on echinacea before I get on one to help ward off any unnecessary germs. My hubby travels weekly so I do know what a trip on the plane can bring home! I did think about Sloane's exposure to jetliner germs and it's timing in regards to surgery. But knowing we had 3 + weeks in between the 2 monumental events felt safe.
My thoughts weren't frivolous. Thursday night from 11pm to 9am, Sloane cried all night, complaining of a sore throat. She had had a runny nose all week so I thought....post nasal drip drying her out or strep throat! We made it thru the night without sleep and waited
eagerly for 8am to grace Dr. Reibman without presence. It cracked me up a bit really....Sloane always seems to get sick at the most in opportune times. I was hosting a double birthday lunch and some egg coloring for the girlies in my family on Friday. My fabulous niece turned 3 on Friday and Titi turned a new double digit on Monday. We were having a girls day and then Sloane was scheduled for some 2nd shift egg coloring at nonni's. All events canceled by 7am on Friday am!
While waiting for our drs. appointment, I contacted my go-to mommy with our sudden illness onset. She alerts me that it could be Sloane's ear?? This is surprising as we have never had an ear infection in our home. Apparently, unbeknownst to me, the throat and the ears and the pain can all get mixed up in a child's thoughts. And sure enough, as my go-to mommy knows, Sloane had an ear infection. My poor love bugs ear had a lovely pool of orange goop sitting at the bottom of it when I finally looked!! Our visit with Dr. Reibman is always eventful. Sloane was asking in he middle of the night to see her if that gives you any idea how I comfy she is so she was quite happy to be sitting in the sailboat room awaiting her arrival. Sloane was clear to tell the doc exactly how she wanted her to touch, or rather not touch her hurting ear. Dr. Reibman just laughs and looks at me with a " oh dear...she is a bit of something" glance each time we spend time with her.
We came home with a round of antibiotics and some ear drops to help us pass the time until Sloane's surgery! Not such a bad ting really....I don't mind killing some of the germs hanging out in her lungs too before surgery :)
Wednesday, April 2, 2014
A Discounted Rate
As Sloane's summer clothes are piled up on the dining room table awaiting their placement in her suitcase for Turks; I decided to make arrangements for another kind of over-night stay we will be having. I called the Best Western in the Longwood Medical area and reserved our room for Sloane's cleft surgery. I had said I was going to do this last month as we drove by when we left our appointment with Dr. Rahbar and never did. Call it denial, call it procrastination, call it refusal....whatever you like, but on Sunday, mammie called me on it. She reminded me that I had said I was going to book the room last month and I'd better before I couldn't get one.
You wouldn't imagine that a hotel next door to a medical center would get sold-out, but it does. We have stayed here before...in fact, my first time was over 18 years ago when my mother was an oncology patient at Brigham and Womens. There is something very convenient about not having to get into your car to go somewhere to shower or sleep. I like it.
Sloane will be spending at least 2 nights at Childrens for her surgery and we will need a room to re-charge our batteries during her stay. This is not to say that she will ever be left alone. She wont. We will switch off for showers, food and sleep. I ALWAYS pull rank over the ICU nights. Leaving Sloane to do anything is not an option. The minutes in the bathroom feel unnecessary at times.
Truly, our nicely appointed double queen bed room at the Best Western wont get much use. It'll be a drop off point for our suitcases and a place to splash water on our faces. I am not even sure the bed got used the last time Sloane was inpatient at Childrens. We have family a short drive away from the hospital and I tried that once, but truly the minute I got in the car to make the 10 minute drive I wanted to throw up. It felt like I was years away from Sloane. I cant do it.
Life stops when there is a hospital stay. After Sloane was in the NICU for a few weeks and was stable, I started forcing myself to go home at night. The routine was the same. My hubby would come after work and we would stay until 10pm or whenever Sloane fell asleep and then we would drive home, eat, shower, set the alarm to call the overnight nurse at 2am to check on Sloane and then re-set the alarm for 4:45am to make it back for the 5:30am feed. There was sleep and there was incredible guilt. I can remember doing normal things like going out to eat and feeling like the whole world was staring at me because I left my child in the hospital to have a life. Balancing our 7 week stay in the NICU emotionally was challenging as a new mom. One piece of advice I tried to hold on to, when I left, was that I was leaving my newborn with the most qualified babysitters ever....nurses. That did ease the irrational thoughts at times.
So, our stay at the Best Western has been booked. It'll be the place we hang our hats (ha)
May 5th -7th. We have a "my child is a patient" discounted rate....isn't that the exact type of discount everyone has ever wanted!! not!
Can't say I am looking forward to it at all......What I am looking forward to is seeing Sloane's face on Saturday am when she steps on the airplane for the first time! She is spewing with excitement about her vacation. Telling anyone we see that she is going to see Elmo. It is quite adorable!! Sloane's level of zest is very high to begin with...she zips around her world and her energy is almost infectious. I have seen grown men become completely subservient to her ideas.... (poppie, who is a few years shy of 70, did a sommersault on Sunday in honor of Sloane's version of fun and Shu, who is a bit beyond 70, has been adorned in play jewels and had his teeth brushed with soap because he was caught up in a moment with Sloane! LOL! My daughter approaches everyday life with a whole lot of spirit...watching her on this vaca will be memories of a lifetime....
You wouldn't imagine that a hotel next door to a medical center would get sold-out, but it does. We have stayed here before...in fact, my first time was over 18 years ago when my mother was an oncology patient at Brigham and Womens. There is something very convenient about not having to get into your car to go somewhere to shower or sleep. I like it.
Sloane will be spending at least 2 nights at Childrens for her surgery and we will need a room to re-charge our batteries during her stay. This is not to say that she will ever be left alone. She wont. We will switch off for showers, food and sleep. I ALWAYS pull rank over the ICU nights. Leaving Sloane to do anything is not an option. The minutes in the bathroom feel unnecessary at times.
Truly, our nicely appointed double queen bed room at the Best Western wont get much use. It'll be a drop off point for our suitcases and a place to splash water on our faces. I am not even sure the bed got used the last time Sloane was inpatient at Childrens. We have family a short drive away from the hospital and I tried that once, but truly the minute I got in the car to make the 10 minute drive I wanted to throw up. It felt like I was years away from Sloane. I cant do it.
Life stops when there is a hospital stay. After Sloane was in the NICU for a few weeks and was stable, I started forcing myself to go home at night. The routine was the same. My hubby would come after work and we would stay until 10pm or whenever Sloane fell asleep and then we would drive home, eat, shower, set the alarm to call the overnight nurse at 2am to check on Sloane and then re-set the alarm for 4:45am to make it back for the 5:30am feed. There was sleep and there was incredible guilt. I can remember doing normal things like going out to eat and feeling like the whole world was staring at me because I left my child in the hospital to have a life. Balancing our 7 week stay in the NICU emotionally was challenging as a new mom. One piece of advice I tried to hold on to, when I left, was that I was leaving my newborn with the most qualified babysitters ever....nurses. That did ease the irrational thoughts at times.
So, our stay at the Best Western has been booked. It'll be the place we hang our hats (ha)
May 5th -7th. We have a "my child is a patient" discounted rate....isn't that the exact type of discount everyone has ever wanted!! not!
Can't say I am looking forward to it at all......What I am looking forward to is seeing Sloane's face on Saturday am when she steps on the airplane for the first time! She is spewing with excitement about her vacation. Telling anyone we see that she is going to see Elmo. It is quite adorable!! Sloane's level of zest is very high to begin with...she zips around her world and her energy is almost infectious. I have seen grown men become completely subservient to her ideas.... (poppie, who is a few years shy of 70, did a sommersault on Sunday in honor of Sloane's version of fun and Shu, who is a bit beyond 70, has been adorned in play jewels and had his teeth brushed with soap because he was caught up in a moment with Sloane! LOL! My daughter approaches everyday life with a whole lot of spirit...watching her on this vaca will be memories of a lifetime....
Wednesday, March 26, 2014
Big Gun Consequences
The Child Find/Early Intervention screening went off without a hitch I guess. Sloane did her thing and I waited in the waiting room. It took all of an hour and there was great people watching. I love people watching. It is so fun to watch the world go on around you! Today, I did some people watching, but I did more parenting watching.
I am not and would never claim to be an excellent, perfect, fabulous or any other superlative parent. I am doing a good job, I think, but it is a work in progress every minute of everyday. This is my first rodeo!! Some days, I have not a clue what to do with my daughter's behaviors and other days I am nipping them in the butt before they get started. There is one piece of parenting I do know something about because of my educator background....consequences. I was kind of known as a hard ass teacher....priding herself on structure, routine and discipline. Let's just say...kids weren't exactly excited to have me as their teacher at the beginning of the year, but loved it by the end for the most part I think.
After 17 years in the classroom and 10 of those being with special needs children, I learned a bit behaviors. Call it "field training". I try very hard to always give Sloane a do-able consequence. I do not go for the unattainable or big guns because I know there will be no follow-thru and I will lose my credibility as "the boss"..... hahaha
Today, I watched a perfect example of no follow-thru. Sloane's screen was held in the local elementary school with many preschoolers from our city. Next to me, was a couple about my age with their son. He had done 1 part of the screening and was waiting to be called again when he started not skipping, not jogging, not twirling but racing down the school's corridors. His parents called for him many a times from their seats on the bench...never moving. The little lad continued to pretend the halls were his raceway and ignored their calls. I was watching carefully...thinking about how I would have scooped Sloane up by now and exited her into a quiet corner for an eye to eye chat about the no running policy. If you get my drift.......When Sloane is acting fresh, I like to exit the location, take her audience away and chat with her quietly, sternly and hopefully, if I haven't lost my mind....like a parent to child :)
Now, as the roadrunner was making his way thru the halls, neither parent moved until 10 call outs were made. At that point, the dad picked the boy up without a word and plopped him in his mom's arms while he screamed over and over something that sounded like "put me down". Dad never spoke and mom remained calm and asked him over and over to stop being bad.....(as I side note, I am not a fan of "stop being bad") while he kicked her and screamed louder. And then it happened, she said "do you want to leave?" This is all happening while the mom is sitting, not moving with her cell phone in her hand. What, I thought??? This is the Early Intervention state mandated screening...you cant leave...he isn't done yet!! Why on earth would that be the consequence for this behavior and why are you asking him??? No warning, no expectations, just a big gun consequence! Not good I thought. This isn't going to go well....and it didn't. For the next 3-5 minutes, the screaming continued and the mom continued to threaten him with a punishment?? of leaving that wasn't going to happen. Meanwhile, of course, he wants to leave....this wasn't exactly a day at the playground!! Strangers are asking him to do things that may be hard for him or even confusing. What fun is that for a 3 year old??? The big gun consequence was never going to happen.... I felt bad for this little guy! He needed some structure, some consequences and at the very least to know his parents were in charge.
Sloane finished her screening and joined me in the waiting room. I have no idea how she did. Ill assume just fine as I don't see any red flags yet. While we left, the roadrunner came out from his next screening and hit the hallways like he was Carl Lewis in the 1,00 meter dash! Guess, he wasn't leaving the screening early!!
I am not and would never claim to be an excellent, perfect, fabulous or any other superlative parent. I am doing a good job, I think, but it is a work in progress every minute of everyday. This is my first rodeo!! Some days, I have not a clue what to do with my daughter's behaviors and other days I am nipping them in the butt before they get started. There is one piece of parenting I do know something about because of my educator background....consequences. I was kind of known as a hard ass teacher....priding herself on structure, routine and discipline. Let's just say...kids weren't exactly excited to have me as their teacher at the beginning of the year, but loved it by the end for the most part I think.
After 17 years in the classroom and 10 of those being with special needs children, I learned a bit behaviors. Call it "field training". I try very hard to always give Sloane a do-able consequence. I do not go for the unattainable or big guns because I know there will be no follow-thru and I will lose my credibility as "the boss"..... hahaha
Today, I watched a perfect example of no follow-thru. Sloane's screen was held in the local elementary school with many preschoolers from our city. Next to me, was a couple about my age with their son. He had done 1 part of the screening and was waiting to be called again when he started not skipping, not jogging, not twirling but racing down the school's corridors. His parents called for him many a times from their seats on the bench...never moving. The little lad continued to pretend the halls were his raceway and ignored their calls. I was watching carefully...thinking about how I would have scooped Sloane up by now and exited her into a quiet corner for an eye to eye chat about the no running policy. If you get my drift.......When Sloane is acting fresh, I like to exit the location, take her audience away and chat with her quietly, sternly and hopefully, if I haven't lost my mind....like a parent to child :)
Now, as the roadrunner was making his way thru the halls, neither parent moved until 10 call outs were made. At that point, the dad picked the boy up without a word and plopped him in his mom's arms while he screamed over and over something that sounded like "put me down". Dad never spoke and mom remained calm and asked him over and over to stop being bad.....(as I side note, I am not a fan of "stop being bad") while he kicked her and screamed louder. And then it happened, she said "do you want to leave?" This is all happening while the mom is sitting, not moving with her cell phone in her hand. What, I thought??? This is the Early Intervention state mandated screening...you cant leave...he isn't done yet!! Why on earth would that be the consequence for this behavior and why are you asking him??? No warning, no expectations, just a big gun consequence! Not good I thought. This isn't going to go well....and it didn't. For the next 3-5 minutes, the screaming continued and the mom continued to threaten him with a punishment?? of leaving that wasn't going to happen. Meanwhile, of course, he wants to leave....this wasn't exactly a day at the playground!! Strangers are asking him to do things that may be hard for him or even confusing. What fun is that for a 3 year old??? The big gun consequence was never going to happen.... I felt bad for this little guy! He needed some structure, some consequences and at the very least to know his parents were in charge.
Sloane finished her screening and joined me in the waiting room. I have no idea how she did. Ill assume just fine as I don't see any red flags yet. While we left, the roadrunner came out from his next screening and hit the hallways like he was Carl Lewis in the 1,00 meter dash! Guess, he wasn't leaving the screening early!!
Tuesday, March 25, 2014
Momma Me
It is very sad when you daughter sees a picture of your from 13 years ago and has not a clue that it is you!! Yesterday, I thought to myself.....hmmmmm, did I check the date of expiration on my hubby's passport?? To say that I am getting a bit nervous about forgetting something for our trip is an understatement!! Anyhow, I pulled out the passports and because I am a saver...I had kept my old one! Sloane wanted to play with one so the expired seemed the most logical to give her. Our, up to date 3, were tucked back into the safe.
Sloane opens the passport up that was current from 2000-2010 and asks me who the girl is with the big eyes?!?! I didn't know if I wanted to cry or laugh my ass off. I said "Sloane, that is momma." She replied (out of the mouths of babes)...."Momma, what happened to you? Why you look so different now?" And then proceed to point to pictures in my bedroom that are current and say..."Momma, this is you. This (holding the passport) isn't you." OMG! At this point, I was about to cry.
I am 41. The expired passport had a picture of me at 27. Now, a lot has happened in these 14 years, but I did still think I looked like a version of myself until yesterday. Hahaha!! It reminded me of when I was pregnant and feeling great....I remembered saying to Gina, my teaching partner, something to the effect that I cant believe how I look the same.....and she laughed her ass off at me....clearly reminding me that I was the size of a house!!
When I compared the old passport's picture with the new one from 4 years ago (I was 37), there were some noticeable aging differences, but it was still me. Sloane only recognizes this me! The 'momma me'! The me that looks a bit tired, overly concerned and somewhat scattered. I remember 2 Easters ago sitting at mammie and poppie's table, when my brother said...."Tots, you need to relax about Sloane. This whole cleft thing has aged you. You can see it in your face."
It is true. I have aged. Basic motherhood has an affect on us and Sloane's health concerns or rather, my constant worry about her laryngeal cleft, dulled me out a bit! I didn't think to the point, that Sloane would not be able to ID me in a line-up!! LOL I can feel the concern or heaviness on my face when it creeps up!
Today, Dr. Rahbar's surgical nurse called to do Sloane's pre-op. Talk about being prepared!! May 5th is a long way away. Christine and I chatted for a while after Sloane answered the phone before I could get to it and said "Hello, who is this please?" Christine was roaring with laughter. There wasn't much new info to report. Sloane's file at Children's is quite detailed, so we only had to go over some directions for the day of. As we were talking about the procedure and its post-op, I could feel the waves of "this sucks" coming over me. My face was aging by the minute!! LOL Sloane might have woken up from her nap and not known it was me even though it was the momma me standing in the kitchen!! And as soon as I hung up with Christine, I thought....Turks & Caicos first, Tarra....you are going to take Sloane to see Elmo...Turks & Caicos Take Me Away!!!!! That thought, in itself, lightened up the tension that was now sitting around my eyes about May 5th!
Tomorrow, is Sloane's 3 year old Child Find Screening.....let's all hope she uses only appropriate words during moments of frustration if there are any!!!
Sloane opens the passport up that was current from 2000-2010 and asks me who the girl is with the big eyes?!?! I didn't know if I wanted to cry or laugh my ass off. I said "Sloane, that is momma." She replied (out of the mouths of babes)...."Momma, what happened to you? Why you look so different now?" And then proceed to point to pictures in my bedroom that are current and say..."Momma, this is you. This (holding the passport) isn't you." OMG! At this point, I was about to cry.
I am 41. The expired passport had a picture of me at 27. Now, a lot has happened in these 14 years, but I did still think I looked like a version of myself until yesterday. Hahaha!! It reminded me of when I was pregnant and feeling great....I remembered saying to Gina, my teaching partner, something to the effect that I cant believe how I look the same.....and she laughed her ass off at me....clearly reminding me that I was the size of a house!!
When I compared the old passport's picture with the new one from 4 years ago (I was 37), there were some noticeable aging differences, but it was still me. Sloane only recognizes this me! The 'momma me'! The me that looks a bit tired, overly concerned and somewhat scattered. I remember 2 Easters ago sitting at mammie and poppie's table, when my brother said...."Tots, you need to relax about Sloane. This whole cleft thing has aged you. You can see it in your face."
It is true. I have aged. Basic motherhood has an affect on us and Sloane's health concerns or rather, my constant worry about her laryngeal cleft, dulled me out a bit! I didn't think to the point, that Sloane would not be able to ID me in a line-up!! LOL I can feel the concern or heaviness on my face when it creeps up!
Today, Dr. Rahbar's surgical nurse called to do Sloane's pre-op. Talk about being prepared!! May 5th is a long way away. Christine and I chatted for a while after Sloane answered the phone before I could get to it and said "Hello, who is this please?" Christine was roaring with laughter. There wasn't much new info to report. Sloane's file at Children's is quite detailed, so we only had to go over some directions for the day of. As we were talking about the procedure and its post-op, I could feel the waves of "this sucks" coming over me. My face was aging by the minute!! LOL Sloane might have woken up from her nap and not known it was me even though it was the momma me standing in the kitchen!! And as soon as I hung up with Christine, I thought....Turks & Caicos first, Tarra....you are going to take Sloane to see Elmo...Turks & Caicos Take Me Away!!!!! That thought, in itself, lightened up the tension that was now sitting around my eyes about May 5th!
Tomorrow, is Sloane's 3 year old Child Find Screening.....let's all hope she uses only appropriate words during moments of frustration if there are any!!!
Sunday, March 16, 2014
Momma was Roofied!!
Shortly after I blogged Tuesday night, I think someone mommy "roofied" me!! I have no idea what happened. Sloane was perfectly fine after her vomiting episode! She ate dinner, slept thru the night without a fever or an issue, ate breakfast on Wednesday am and off to school she went. Not a sign of illness to be had....a freaky vomiting episode!?! Very odd!
Sloane was fine, but I think I was roofied!! When I went to bed Tuesday night, my stomach was off. I couldn't decide if I, too, was going to throw up or shit myself. I did not sleep all night much. Lots of tossing and turning! We were up at 4am because my hubby had a trip. I never really went back to sleep between my stomach and my restlessness. When Sloane woke up, I couldn't move. Literally, I couldn't move. My muscles were in shock (I had worked out with a trainer the day before) and I was so fatigued that I wanted to cry! I drove Sloane to school at 9 and was back in bed by 9:30 sleeping until 11:00am.
Never in my life have I ever done this! And I still couldn't move. My hubby called once he arrived at his destination and I tried to pretend that I had my shit together...off to the shower I went to try to feel better! It worked for a bit. I had a coffee date with a friend scheduled that I had no intention of missing. It was top priority so I geared up. I am sure if she was a different person, when I answered the door in my robe newly showered at 11:45, she would've thought I had lost it but this is one of those friends you can be raw in front of with no worries. I told her my roofie saga and after I made myself presentable off we went slowly. We picked up Sloane from school and hit Panera for a snack. I was holding it together but was dreaming of hitting the sheets later for another nap. The minute Sloane was in dreamland, I curled up on the couch and literally passed out until Sloane woke me up 2 hours later. I was now concerned and perplexed about what was happening to me. Lethargic isn't the word for it....I was in a freaking fog!! And my niece was coming over for our sleepover in one hour!!!!
When Stella and her momma arrived, I didn't have to say much. I am pretty sure my appearance cleared up a y questions my sister in law may have had. A bus had run me over and left me in a daze! I didn't move, I didn't eat and I just about engaged with my company for the next 4 hours. I was back in bed by 9:30pm leaving my sister in law alone on our couch watching Walburgers re-runs until God knows what time!!! The girls fell asleep together in Sloane's bed (fabulous) and slept thru the night after Ani joined them when Stella called out for her momma around 3am. I heard none of it and didn't move until 7am. If you have seen the movie Frozen (we have seen it 50 times as Sloane is obsessed), I looked like Ana on Coronation Day!! A drooling, tousled mess!!
I won't bore you with the details again, but Thursday looked pretty much like Wednesday. Sloane and I never left the house after cuzzy and Ani went home and even after my 5pm shower, I looked liked I hadn't slept in days. My saving grace was that nonni took Sloane for some playtime. I could've went to bed the moment Sloane left but the fact was that I had just gotten out of bed 2 hours earlier.....I slept Sloane's nap away and Sloane would be back within an hour. And when Sloane woke up from her nap on Thursday and found me in bed.....she actually said momma, I am tired of being on your bed! It was not a good scene at 1029 (our nickname for our house).
When it was time for me to get Sloane from noni's playground oops...I mean house, the short around the corner walk felt like a mile long jog. I was spent! And I proceeded to sprawl myself across her kitchen table while chatting. Shu (my mil's SO) said....."cup, you don't look like your awake self today." That was certainly a sweet understatement. I wasn't awake at all! I had been mommy roofied and after 36 hours of it....I was getting concerned....who was this person I had become????
Sloane and I headed home with thoughts of only 2 more hours til sleep dancing in my head!! I was on 2 days of no real food although I force fed myself a rice cake with PB in the afternoon which started to repeat itself throughout the afternoon. When I say I was down and out people, I was down and out. My body had shut down. I couldn't bear the thought of putting something in and very little was coming out. Lol!!!
I hit the sheets at 9pm which is like a sin on a Thursday night because I am a "gladiator"....we love the show Scandal in this house. Love, Love, Love!! So the fact that I was going to miss it was almost unbelievable! I took 2 motrin, topped it off with an aleve and closed my eyes with a huge headache begging to feel more like myself in the morning. And it happened. I woke up Friday am feeling more like me. A definite improvement!! Thank the heavens.
As I moved around the house and looked around...I gasped internally. It was not at all as tighty as it normally is! I was embarrassed that my sister in law had seen all that she had. I was so foggy that I hadn't noticed what was happening around me for 2 days! It didn't look like an episode of Hoarders, but it certainly would not have been featured on any segment of HGTV!
I spent Friday getting to know my old self. I was awake and feeling more like me. There was even a trip to the gym! I ate, I drank, I walked and I talked. I was back!! The mommy roofie had worn off. I had lost 2 full days, slept more than I do in a 5 day stretch and had seen the world thru a foggy haze....not fun!!!!
Sloane was fine, but I think I was roofied!! When I went to bed Tuesday night, my stomach was off. I couldn't decide if I, too, was going to throw up or shit myself. I did not sleep all night much. Lots of tossing and turning! We were up at 4am because my hubby had a trip. I never really went back to sleep between my stomach and my restlessness. When Sloane woke up, I couldn't move. Literally, I couldn't move. My muscles were in shock (I had worked out with a trainer the day before) and I was so fatigued that I wanted to cry! I drove Sloane to school at 9 and was back in bed by 9:30 sleeping until 11:00am.
Never in my life have I ever done this! And I still couldn't move. My hubby called once he arrived at his destination and I tried to pretend that I had my shit together...off to the shower I went to try to feel better! It worked for a bit. I had a coffee date with a friend scheduled that I had no intention of missing. It was top priority so I geared up. I am sure if she was a different person, when I answered the door in my robe newly showered at 11:45, she would've thought I had lost it but this is one of those friends you can be raw in front of with no worries. I told her my roofie saga and after I made myself presentable off we went slowly. We picked up Sloane from school and hit Panera for a snack. I was holding it together but was dreaming of hitting the sheets later for another nap. The minute Sloane was in dreamland, I curled up on the couch and literally passed out until Sloane woke me up 2 hours later. I was now concerned and perplexed about what was happening to me. Lethargic isn't the word for it....I was in a freaking fog!! And my niece was coming over for our sleepover in one hour!!!!
When Stella and her momma arrived, I didn't have to say much. I am pretty sure my appearance cleared up a y questions my sister in law may have had. A bus had run me over and left me in a daze! I didn't move, I didn't eat and I just about engaged with my company for the next 4 hours. I was back in bed by 9:30pm leaving my sister in law alone on our couch watching Walburgers re-runs until God knows what time!!! The girls fell asleep together in Sloane's bed (fabulous) and slept thru the night after Ani joined them when Stella called out for her momma around 3am. I heard none of it and didn't move until 7am. If you have seen the movie Frozen (we have seen it 50 times as Sloane is obsessed), I looked like Ana on Coronation Day!! A drooling, tousled mess!!
I won't bore you with the details again, but Thursday looked pretty much like Wednesday. Sloane and I never left the house after cuzzy and Ani went home and even after my 5pm shower, I looked liked I hadn't slept in days. My saving grace was that nonni took Sloane for some playtime. I could've went to bed the moment Sloane left but the fact was that I had just gotten out of bed 2 hours earlier.....I slept Sloane's nap away and Sloane would be back within an hour. And when Sloane woke up from her nap on Thursday and found me in bed.....she actually said momma, I am tired of being on your bed! It was not a good scene at 1029 (our nickname for our house).
When it was time for me to get Sloane from noni's playground oops...I mean house, the short around the corner walk felt like a mile long jog. I was spent! And I proceeded to sprawl myself across her kitchen table while chatting. Shu (my mil's SO) said....."cup, you don't look like your awake self today." That was certainly a sweet understatement. I wasn't awake at all! I had been mommy roofied and after 36 hours of it....I was getting concerned....who was this person I had become????
Sloane and I headed home with thoughts of only 2 more hours til sleep dancing in my head!! I was on 2 days of no real food although I force fed myself a rice cake with PB in the afternoon which started to repeat itself throughout the afternoon. When I say I was down and out people, I was down and out. My body had shut down. I couldn't bear the thought of putting something in and very little was coming out. Lol!!!
I hit the sheets at 9pm which is like a sin on a Thursday night because I am a "gladiator"....we love the show Scandal in this house. Love, Love, Love!! So the fact that I was going to miss it was almost unbelievable! I took 2 motrin, topped it off with an aleve and closed my eyes with a huge headache begging to feel more like myself in the morning. And it happened. I woke up Friday am feeling more like me. A definite improvement!! Thank the heavens.
As I moved around the house and looked around...I gasped internally. It was not at all as tighty as it normally is! I was embarrassed that my sister in law had seen all that she had. I was so foggy that I hadn't noticed what was happening around me for 2 days! It didn't look like an episode of Hoarders, but it certainly would not have been featured on any segment of HGTV!
I spent Friday getting to know my old self. I was awake and feeling more like me. There was even a trip to the gym! I ate, I drank, I walked and I talked. I was back!! The mommy roofie had worn off. I had lost 2 full days, slept more than I do in a 5 day stretch and had seen the world thru a foggy haze....not fun!!!!
Tuesday, March 11, 2014
Book Worthy
Sloane has been saying some very funny things lately. Burst out laughing funny. I should be writing them down in some kind of memory book, but I'm not. Slacker mom! I think this blog serves as a memory book....right?!?
Some days, I can't believe what rolls out of her mouth. Some statements are funny, sweet, thoughtful, or crass! Most of them are memory book worthy!
On Friday, Sloane's teachers told me that she had cut the art teacher's hair while playing hairdresser. When Sloane and I discussed the incident (we play hairdresser ALL the time with fake scissors....not sure why she had real ones...but whatever??) Sloane asked me why Auntie Bec (our hairdresser) is the only one who gets to cut hair. It's not fair, momma!
Yesterday, Sloane looked me dead in the eyes and asked: why are you so happy today??? I burst out laughing. She said it with such teenage attitude and I did have a very sarcastic smile on my face. She read right thru me!
The fact that she told me she couldn't finish her breakfast yesterday because "Momma, I can't. Strawberries and chocolate milk don't go together. Try it. You wont like it. It takes disgusting."
Last night, when she kissed me good night she looked at me with the biggest eyes and in the softest voice asked me if I could just drop her off at ti-ti's tomorrow, telling me she changed her mind, she wasn't going to school. What???? As if she has the choice???
I have laughed a lot in the last few days and I have smiled a smile that is engraved on my heart. My hubby came to bed Sunday night after putting Sloane to sleep. Prayers are part of our routine and Sloane likes to bless people in her life as well as say hello to Grandma Jackie (my mom).
When he came to bed he asked me first if I thought it was normal that Sloane can say the whole Our Father prayer by herself. No, of course I do not think that is the norm at 3 1/2, but the truth be told Sloane does a lot of things that I do not find the norm. Preschoolers are all new to me. 4th grade is my wheel-house. What he told me next melted my heart.....Sloane asked him if Grandma Jackie could stop being an angel and become a person again because that would be fun. My hubby wasn't done with the words before I had a tear in my eye and the smile hit my heart. He told her exactly what I would have...No, Grandma Jackie can't. She is an angel. Once you are angel, you stay an angel.
Now with all those sweet stories, there are also some that make you say.....Shhhhh, Sloane , no, no, no....we don't say that. A perfect example is that my father (poppie) is the biggest buster and my hubby does not trail a minute behind. They enjoy openly teasing each other. With that being said, Sloane says in the car this morning on the way to school. "Poppie is a punk! Daddy said poppie is a punk. Let's call poppie the punk." Hysterical is not a close enough word to describe my reaction. Now, that is one for the books!!!
I have been working on this post all day secretly knowing that Sloane is having a movie date and sleep over tomorrow night. My go-to mommy's 3 kiddos are coming over to watch Frozen with Sloane and my niece, Stella, who is sleeping over. Sloane knows none of this...Not telling her because you never know, something could happen, don't want her to be disappointed. Those are the phrases I used today with everyone I told about our movie date/sleep over night. Well, in the past 2 hours.....Sloane has thrown up all over my mother in laws and my godson has developed white bumps on his throat! Which is why I told Sloane none of the surprise. We can assume Harrison has strep. I can assume nothing about Sloane. She is acting completely normal and has no fever. I will not dare to type what I am thinking. This is to be continued......
Some days, I can't believe what rolls out of her mouth. Some statements are funny, sweet, thoughtful, or crass! Most of them are memory book worthy!
On Friday, Sloane's teachers told me that she had cut the art teacher's hair while playing hairdresser. When Sloane and I discussed the incident (we play hairdresser ALL the time with fake scissors....not sure why she had real ones...but whatever??) Sloane asked me why Auntie Bec (our hairdresser) is the only one who gets to cut hair. It's not fair, momma!
Yesterday, Sloane looked me dead in the eyes and asked: why are you so happy today??? I burst out laughing. She said it with such teenage attitude and I did have a very sarcastic smile on my face. She read right thru me!
The fact that she told me she couldn't finish her breakfast yesterday because "Momma, I can't. Strawberries and chocolate milk don't go together. Try it. You wont like it. It takes disgusting."
Last night, when she kissed me good night she looked at me with the biggest eyes and in the softest voice asked me if I could just drop her off at ti-ti's tomorrow, telling me she changed her mind, she wasn't going to school. What???? As if she has the choice???
I have laughed a lot in the last few days and I have smiled a smile that is engraved on my heart. My hubby came to bed Sunday night after putting Sloane to sleep. Prayers are part of our routine and Sloane likes to bless people in her life as well as say hello to Grandma Jackie (my mom).
When he came to bed he asked me first if I thought it was normal that Sloane can say the whole Our Father prayer by herself. No, of course I do not think that is the norm at 3 1/2, but the truth be told Sloane does a lot of things that I do not find the norm. Preschoolers are all new to me. 4th grade is my wheel-house. What he told me next melted my heart.....Sloane asked him if Grandma Jackie could stop being an angel and become a person again because that would be fun. My hubby wasn't done with the words before I had a tear in my eye and the smile hit my heart. He told her exactly what I would have...No, Grandma Jackie can't. She is an angel. Once you are angel, you stay an angel.
Now with all those sweet stories, there are also some that make you say.....Shhhhh, Sloane , no, no, no....we don't say that. A perfect example is that my father (poppie) is the biggest buster and my hubby does not trail a minute behind. They enjoy openly teasing each other. With that being said, Sloane says in the car this morning on the way to school. "Poppie is a punk! Daddy said poppie is a punk. Let's call poppie the punk." Hysterical is not a close enough word to describe my reaction. Now, that is one for the books!!!
I have been working on this post all day secretly knowing that Sloane is having a movie date and sleep over tomorrow night. My go-to mommy's 3 kiddos are coming over to watch Frozen with Sloane and my niece, Stella, who is sleeping over. Sloane knows none of this...Not telling her because you never know, something could happen, don't want her to be disappointed. Those are the phrases I used today with everyone I told about our movie date/sleep over night. Well, in the past 2 hours.....Sloane has thrown up all over my mother in laws and my godson has developed white bumps on his throat! Which is why I told Sloane none of the surprise. We can assume Harrison has strep. I can assume nothing about Sloane. She is acting completely normal and has no fever. I will not dare to type what I am thinking. This is to be continued......
Thursday, March 6, 2014
Let The Countdown Begin....
First let me come clean.......I cheated! On Tuesday after we got home from our appointment with Dr. Rahbar, I did an extra unnecessary load of laundry and I had a handful of Cheez-its!!! The laundry was a given....I knew I would fall off the wagon sooner than later. But the Cheez-its were a surprise because I have been cleansing for over a month. It only proved what I already knew...even a low key visit to Dr. Rahbar is emotionally draining for me.
I have to say the trip to Children's was very easy. No traffic, no rushing and no whining. Sloane watched Annie on the way up and Sofia the First on the way home. Mammie and I were able to talk (not always a definite on the trips) and occasionally Sloane said something so loud (bc of the earphones) that we were both startled into laughter.
I did learn something not-cleft related on Tuesday. Sloane has figured it out. She knows the deal! When we picked up mammie on our way, poppie hopped in the car to tease Sloane that he was coming not mammie. Sloane, in her ohhhh, poppie, you are silly manner said: "Poppie, you aren't coming today. You only come when we go to where Dr. Rahbar makes me sleep and I stay there. That's not today. Silly poppie" I was surprised and then not at all. Sloane knows. She connected the dots. I guess in a positive way, when her daddy and I are ready to start talking about her upcoming surgery with her, we can be more open and honest.
Dr. Rahbar didn't lay a finger on Sloane. He actually announced to her as soon as he walked into the room that he wasn't going to. It eased the vibe immediately. We reviewed how things are going and then I pulled out our questions. If you are a fellow cleft parent reading this blog, please know that Dr. Rahbar and his staff are ALWAYS interested in answering every question they can.
My hubby had written down 5 essentials.
This last topic wasn't on the list, but the conversation did naturally head into the direction of whether or not to thicken Sloane's liquid a teeny tiny bit until surgery to decrease her aspirations and keep her more healthy than not until May 5th. We haven't talked about this yet. It is on my back burner for the next few days. I think it is a conversation for the weekend after all the dust has settled from our week.
The countdown has begun.....29 days from today we will all be sitting on a beach in Turks and Caicos. So exciting for so many reasons!! and then 59 days from today we will all be past cleft surgery number 2!!
I have to say the trip to Children's was very easy. No traffic, no rushing and no whining. Sloane watched Annie on the way up and Sofia the First on the way home. Mammie and I were able to talk (not always a definite on the trips) and occasionally Sloane said something so loud (bc of the earphones) that we were both startled into laughter.
I did learn something not-cleft related on Tuesday. Sloane has figured it out. She knows the deal! When we picked up mammie on our way, poppie hopped in the car to tease Sloane that he was coming not mammie. Sloane, in her ohhhh, poppie, you are silly manner said: "Poppie, you aren't coming today. You only come when we go to where Dr. Rahbar makes me sleep and I stay there. That's not today. Silly poppie" I was surprised and then not at all. Sloane knows. She connected the dots. I guess in a positive way, when her daddy and I are ready to start talking about her upcoming surgery with her, we can be more open and honest.
Dr. Rahbar didn't lay a finger on Sloane. He actually announced to her as soon as he walked into the room that he wasn't going to. It eased the vibe immediately. We reviewed how things are going and then I pulled out our questions. If you are a fellow cleft parent reading this blog, please know that Dr. Rahbar and his staff are ALWAYS interested in answering every question they can.
My hubby had written down 5 essentials.
- How many children have needed a 2nd surgery? Out of the 200 surgeries Dr. Rahbar has done, only 4 to 5 children need a 2nd surgery. When I asked the question, Dr. Rahbar asked me to remember where we came from. Sloane had a SIGNIFICANT cleft at birth. ALL the children who needed a 2nd surgery were like her. Those children with grades 1 or 2 clefts historically do not need another surgery.
- How many children have needed a 3rd surgery? Only one out of the 200 cases. This child, however, had a much deeper cleft than Sloane's and had a feeding tube as well as a tracheotomy at birth. Her cleft has been closed in a series of 3 operations because it was so deep.
- Does he think this will be Sloane's last surgery? Yes, he does. He is hopeful.
- In regards to making her airway more narrow when he stitches up her cleft more on May 5th,
- will it naturally widen as she grows
- will she a noisier as she breathes
- will it effect her athletic activities as she grows? Sloane's airway will grow as she grows. So any issues we have with her airway after surgery will naturally lessen as she grows and gets bigger and older. She will most likely be a noisier because her airway is more narrow and the air has a smaller canal to travel than the average 3+ child. As for Sloane's marathon career, it is possible. None of the 200 cleft surgical children that Dr. Rahbar has operated on have grown enough to have factual statistics on their endurance into teenage years or adulthood Sloane's lungs have been and are being compromised from her aspirations daily, but the thought process is that the damage hasn't happened for long enough seeing as though she is only 3 1/2. Dr. Rahbar has closed clefts on 18 and 19 year olds, who have suffered from years of pneumonia because their clefts were not diagnosed, but none of the infants, toddlers or children patients have grown old enough to have data on athletic endurance.
- Will the protocol for this 2nd surgery be the same as the first? Yes, it will be. Sloane will spend her first night post-op in ICU and her 2nd night in a regular room recuperating before we head home.
This last topic wasn't on the list, but the conversation did naturally head into the direction of whether or not to thicken Sloane's liquid a teeny tiny bit until surgery to decrease her aspirations and keep her more healthy than not until May 5th. We haven't talked about this yet. It is on my back burner for the next few days. I think it is a conversation for the weekend after all the dust has settled from our week.
The countdown has begun.....29 days from today we will all be sitting on a beach in Turks and Caicos. So exciting for so many reasons!! and then 59 days from today we will all be past cleft surgery number 2!!
Monday, March 3, 2014
No Laundry For You
I have heard of it before. The husband who restricts his wife's use of a credit card or her social activities. I am not a victim of this....yet!! But I have been restricted and this restriction is one that has affected my every day for the past week.
My name is Tarra and I am a laundry addict!! My husband has restricted my use of the washing machine and dryer. It is painful. I love doing laundry and I am happiest when our laundry baskets are empty. Unbeknown to me, my hubby has been tracking my usage of these 2 prize machines by way of our our utility bills. He stated the black and white facts to me last week and grounded me to one load of laundry a day.
Now to some, this may sound like a dream...but to me it is like the clean freak without a vaccuum or the video gamer without a controller. I am having trouble with the withdrawal phase. For the past few days, I have had to talk myself out of sneaking an extra load in. I like to do a white load, colored load and speciality load daily. We have running joke here that my hubby wears the same pair of underwear each day because they are washed and dried before they hit the floor! Lol! Not exactly accurate but I'm pretty sure all occupants in this house only need 3 pair of undergarments based on my old habits.
I have no idea where this addiction came from...or how it grew to be the beast that it is but I am sure it is diagnostic on a few levels.....hahaha
Tomorrow should be easier than the past few days as we won't be here so I won't have to pull myself away from our laundry room. We are heading up to see Dr. Rahbar tomorrow for a check in! Tomorrow marks the 2 month countdown until Sloane's second cleft surgery. I have the snacks packed, the DVDs out (going to Children's is the only time we use the DVD player in the truck....so it's a treat for all of us) and I am getting mentally prepared for the day. My hubby is getting paper and penciled prepared with all his questions for the myth, the man, the legend. More to come on that!
My name is Tarra and I am a laundry addict!! My husband has restricted my use of the washing machine and dryer. It is painful. I love doing laundry and I am happiest when our laundry baskets are empty. Unbeknown to me, my hubby has been tracking my usage of these 2 prize machines by way of our our utility bills. He stated the black and white facts to me last week and grounded me to one load of laundry a day.
Now to some, this may sound like a dream...but to me it is like the clean freak without a vaccuum or the video gamer without a controller. I am having trouble with the withdrawal phase. For the past few days, I have had to talk myself out of sneaking an extra load in. I like to do a white load, colored load and speciality load daily. We have running joke here that my hubby wears the same pair of underwear each day because they are washed and dried before they hit the floor! Lol! Not exactly accurate but I'm pretty sure all occupants in this house only need 3 pair of undergarments based on my old habits.
I have no idea where this addiction came from...or how it grew to be the beast that it is but I am sure it is diagnostic on a few levels.....hahaha
Tomorrow should be easier than the past few days as we won't be here so I won't have to pull myself away from our laundry room. We are heading up to see Dr. Rahbar tomorrow for a check in! Tomorrow marks the 2 month countdown until Sloane's second cleft surgery. I have the snacks packed, the DVDs out (going to Children's is the only time we use the DVD player in the truck....so it's a treat for all of us) and I am getting mentally prepared for the day. My hubby is getting paper and penciled prepared with all his questions for the myth, the man, the legend. More to come on that!
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