Its all she has ever wanted......water! I knew it, but I didnt really know it. Sloane has been drinking plain, old water and only water since Thursday. She has been refusing some of her old favorites and only requesting her new love. Now, there has been some coughing and some choking but, I am remaining calm and positive. Each time, we have thinned out to a new consistency there have been some bumps in the road so I'll assume the same for this consistency.
It cracks me up to watch her with her cup of water. Sloane thinks she is a big shot!! She flings her cup around and tosses it back like she is drinking for a livin'. She loves it! We have swallowing therapy next week with Kara and I must admit that I am excited to share our BIG news with her.
I am trying to be realistic and remember that we have days, weeks and months of diagnostic drinking ahead of us. The reality of it is if Sloane remains healthy then we can assume she can continue to safely drink liquids in their natural form. Sloane's health is the only gauge we have. We will not have a swallow study and get some factual medical results until April 30, 2013. Until then, Sloane can sip her way through the days.
Miss Thirsty does have another cold. There is definitely some junk in her nosey trunk. I do wonder if the gunk is a result of all the dust in our house. Just when you think there wont be anymore...there is!! We have started finish work and our cabinets are in!! Yahoo!! We have survived, are surviving and will survive living thru a major renovation. I do think I need my head examined. I actually said to someone today (while standing in the 8X10 plastic covered area crammed with all essentials that we reside in besides our bedrooms) "its not that bad, we have slept here every night!!" She was looking like me like I was nuts!! As soon as I said it, I looked around and thought WHY? why have we slept here every night???
Tuesday, November 27, 2012
Thursday, November 22, 2012
Off With A Sprint
Thanksgiving is a day that reminds us why we are thankful. Each year, we do the tradition of sharing our lists with our family either out loud or paper. My hubby and I are 2 people who say why we consider ourselves blessed almost everyday. Our experience of having our daughter be born unhealthy and all that has come with having a child with a birth defect has changed us both. We are very thankful.
Today was no different than past years. Our family wrote down why they were thankful. My statement this year was quite simple. "I am thankful because all of those I love are healthy." When I was younger, my father would always say to people "as long as you have your health, you have everything." It was corny, but as I have gotten older, I hold that statement very dear to my heart. My hubby and I have been surrounded by illness & loss these past few weeks so my dad's ever so simple words ring in my ears.
Now, I consider Sloane healthy and thru my eyes she is beyond every one of my dreams. Today though, we were reminiscing back to the time when Sloane was not healthy. A time when her laryngeal cleft diagnosis was devastating. A dear family member was telling the one memory from Sloane's journey that is ingrained in him. I wasn't expecting which memory he would pick, but once he said it......It made perfect sense. He told of the night that we took Sloane home from the NICU. He told his version of that night and the look of panic combined with a deer in headlights when he and nonni told me they were leaving our house/leaving my hubby and I alone with our daughter. The look on my face, he said, is one he will never forget. When I think of that night, I know why. It was the beginning of motherhood. Motherhood of a child with a special medical need for me. (I have already posted my recollection of that night in the 8/31/12 post entitled: Memory Lane 9/11/2010). After he told his story, we chatted for a minute about how far we have come or rather I have come. LOL
My hubby and I didnt chat more about it on the ride home probably because Sloane was singing Taylor Swift's Never Ever song nonstop. No Joke!! But once we got home and tubby had been completed, something happened that made it useless to talk about that first night home.
Sloane drank very little today and I mean very little. She had lots of watery foods and tons of ice cubes, but her cup never hit her lips. I think she may have finished a 1/2 of milk box this morning. Her camel type behavior today wasn't lost on me. I knew it, as did her father. So once all was calm and quiet on the home front, I heard my hubby say "let's have mommy get you some water."
I stopped in my tracks because I know my hubby doesnt mean a cap full of water or a sip from my glass. He means Sloane's straw cup full of water. And I think .....Water?!?!?!What?!?!?WTF?!?!
Let me remind you....
I look at him and he looks at me with his ever so calming look and says "Let's give it a try." Off to the nonexistent kitchen or rather plastic bin of dishes I go to grab a cup and fill it with 3 oz of plain old cold tap water. I hand it over to Sloane and do what I do best. I hover. As a matter of fact, I place my hand on the back of her neck and tilt my head towards her back to listen and feel as she drinks. My hubby laughs his ass off and says "helicopter!!" If my nickname of the day isnt helicopter...its Oprah!! I could careless by the way!!! I'll hover & publish all I want!!
Well, Sloane slowly drank all 3 ounces with a "I like it" in between sips and some shaking of her cup. She clearly was quite content having plain old unthickened and unflavored water in her cup. It probably was a dream come true for her. She has been trying to drink water in full sips rather than 3ml cap fulls for 2 years. LOL!!! She finished the first 3 ounces while I read her bedtime stories and then asked for more.
And here's the most amazing part: not a gurgle, not a cough, not a choke, not a sound. I will begin to assume that we (mom&dad) can safely give her water from now on. I was a deer in headlights as a hovered for a much different reason than on that first night home. Sloane was drinking like she was college freshman and there was beer involved!! I was a doe in awe. And when she finished drinking, my hubby grabbed the cup and said "in true Sloane fashion, she is off with a sprint!"
scream it from the rooftops if you may please:
After watching this happen, I do wish I could have a do-over on my Why Am I Thankful card this year. I would have written:
Today was no different than past years. Our family wrote down why they were thankful. My statement this year was quite simple. "I am thankful because all of those I love are healthy." When I was younger, my father would always say to people "as long as you have your health, you have everything." It was corny, but as I have gotten older, I hold that statement very dear to my heart. My hubby and I have been surrounded by illness & loss these past few weeks so my dad's ever so simple words ring in my ears.
Now, I consider Sloane healthy and thru my eyes she is beyond every one of my dreams. Today though, we were reminiscing back to the time when Sloane was not healthy. A time when her laryngeal cleft diagnosis was devastating. A dear family member was telling the one memory from Sloane's journey that is ingrained in him. I wasn't expecting which memory he would pick, but once he said it......It made perfect sense. He told of the night that we took Sloane home from the NICU. He told his version of that night and the look of panic combined with a deer in headlights when he and nonni told me they were leaving our house/leaving my hubby and I alone with our daughter. The look on my face, he said, is one he will never forget. When I think of that night, I know why. It was the beginning of motherhood. Motherhood of a child with a special medical need for me. (I have already posted my recollection of that night in the 8/31/12 post entitled: Memory Lane 9/11/2010). After he told his story, we chatted for a minute about how far we have come or rather I have come. LOL
My hubby and I didnt chat more about it on the ride home probably because Sloane was singing Taylor Swift's Never Ever song nonstop. No Joke!! But once we got home and tubby had been completed, something happened that made it useless to talk about that first night home.
Sloane drank very little today and I mean very little. She had lots of watery foods and tons of ice cubes, but her cup never hit her lips. I think she may have finished a 1/2 of milk box this morning. Her camel type behavior today wasn't lost on me. I knew it, as did her father. So once all was calm and quiet on the home front, I heard my hubby say "let's have mommy get you some water."
I stopped in my tracks because I know my hubby doesnt mean a cap full of water or a sip from my glass. He means Sloane's straw cup full of water. And I think .....Water?!?!?!What?!?!?WTF?!?!
Let me remind you....
- Today is the day on the schedule that we were suppose to DISCONTINUE use of Simply Thick.
- Today is the day that we were suppose to start TRYING to give Sloane liquids in their natural form.
- Today is the day that we were suppose to give her anything BUT water in its natural form. Water was on hold for a few weeks because its tasteless and has no viscosity therefore the hardest liquid to drink.
I look at him and he looks at me with his ever so calming look and says "Let's give it a try." Off to the nonexistent kitchen or rather plastic bin of dishes I go to grab a cup and fill it with 3 oz of plain old cold tap water. I hand it over to Sloane and do what I do best. I hover. As a matter of fact, I place my hand on the back of her neck and tilt my head towards her back to listen and feel as she drinks. My hubby laughs his ass off and says "helicopter!!" If my nickname of the day isnt helicopter...its Oprah!! I could careless by the way!!! I'll hover & publish all I want!!
Well, Sloane slowly drank all 3 ounces with a "I like it" in between sips and some shaking of her cup. She clearly was quite content having plain old unthickened and unflavored water in her cup. It probably was a dream come true for her. She has been trying to drink water in full sips rather than 3ml cap fulls for 2 years. LOL!!! She finished the first 3 ounces while I read her bedtime stories and then asked for more.
And here's the most amazing part: not a gurgle, not a cough, not a choke, not a sound. I will begin to assume that we (mom&dad) can safely give her water from now on. I was a deer in headlights as a hovered for a much different reason than on that first night home. Sloane was drinking like she was college freshman and there was beer involved!! I was a doe in awe. And when she finished drinking, my hubby grabbed the cup and said "in true Sloane fashion, she is off with a sprint!"
scream it from the rooftops if you may please:
SLOANE JACQUELINE SAFELY DRANK 4 OUNCES OF UNTHICKENED WATER TONIGHT OUT OF HER OWN STRAW CUP.
After watching this happen, I do wish I could have a do-over on my Why Am I Thankful card this year. I would have written:
I am thankful that everyone I love is healthy and that after almost 850 days of life, my daughter can drink plain old water independently.
(mammie add that to my card if you would please.............)
Sunday, November 18, 2012
All Are Welcome
Only 4 more days with my safety net of Simply Thick!! On Thursday, we will discontinue use of it and let Sloane have liquids in their natural form. I would have to say that we will be hyper alert for the next few weeks. My hubby told "the machine" last night when she questioned if Sloane was ready for no thickener....exactly what I was thinking.....we will know very soon if Sloane isnt ready to safely handle liquids in their natural form. Hyper Alert.....I'll be watching, listening and navigating every sip for the first few weeks. And I am sure that I will put my head against her chest frequently to hear her lungs. Hyper Alert!!! I have been told by many medical professionals that I will know if Sloane has pneumonia.....I, for whatever reason, can't rationally wrap my head around that and think I will miss the first sign and the runaway train will begin.......
Sloane has been drinking well, but she also has become a juice box hoarder. We have every flavor milk box, the Odwalla juice boxes (thank you to our friend Cheryl who found them at Market Basket) and yogurt smoothies. She loves them all, but more than drinking them...she loves to insert the straws into the boxes. She has become a hoarder and we have in a very Jerry Seinfeld way become the Juice Box Nazis.....No more, Juice Box for you!!
There was a full force tugging war over vanilla milk today before church. Perhaps that is the reason that our one hour of religious devotion today didnt go so well? Going to Sunday mass is something that was a tradition in my family. It was usually followed by going out to breakfast which made it all the more fun in my 9 year old eyes. It was a tradition that I treasured and continued to embrace until my mother passed away 16 years ago. I like to say that I took a sabbatical from my faith for a while. I needed to sort some things out with my higher power. Once my hubby and I decided to make a life together, we both headed back to a place where our spirituality took more of a priority in our lives.
I have always been a praying girl and having a child only amplified that. We prayed for a baby, then we prayed for our baby to be born healthy and then...... we started praying for all sorts of things that you shouldnt have to pray for in my opinion.
Things like:
please let my baby take another breath,
please let my baby not turn blue,
please let my baby wake up from anesthesia,
please let my baby not tug at the tube hanging from her belly, please let my baby not reflux so badly that she aspirates her reflux into her lungs,
please do not let my baby catch a cold. We prayed and prayed. And we still pray!!
Now, I am sure if my hubby would agree.....that God has been good to us. He answered our prayers and gave us a place to ground ourselves. Our church is one that has welcomed us in open arms. The sign above the door reads: All are Welcome. I love that. I have some issues with old traditions of the church so it is nice to see in some ways they are evolving with the present day.
Our priest is a family friend. He is a good man who bent over backwards to give us peace of mind while Sloane was in the throws of her laryngeal cleft diagnosis. He even broke some rules and let us have a private baptism because the thought of germs floating around mid winter in our church was one that tortured me. I begged my hubby to beg the Father to have a private baptism so we could keep it germ free. Church, while Sloane was an infant with a feeding tube, became a scary place. A big, bad, germy place.
We went to church as a family when it wasnt cold and flu season, when we werent needing a tube feed, and we sat in the back row far away from anyone coughing on our backs. Now that life has become more manageable and we have become more rational, we all pile into the car on Sunday mornings to get in touch with our spirituality. It has been going well. There are special snacks, whispers and some quiet play.
Today was a different story. Sloane was a bit too chatty and energetic for church. Now, I have had a conversation with our priest about the tolerance of children in the congregation. He is not bothered by it and in fact welcomes it. I will assume the thought is that toddlers/children have to learn how to behave in church and the only way to do that is to come to church. I am sure I don't have to explain why we wouldn't make ourselves comfy in the "cry room". To us, that would be like being locked in a box full of germs.
Sloane chatted and ate her way thru the homily. I could feel the eyes of the congregation on me. Many probably thinking.....shhh!!!
My hubby decided to take Sloane for a walk during the time for "peace with you." The jury is still out on whether Sloane needed a walk or my hubby needed to remove his hands from an unsolicited handshake. LOL!! Once they were gone, I immediately felt my shoulders relax. It hit me.....church was no longer a tradition for me.....it was a stressor!! I am all tied in knots because I am so worried about Sloane disturbing the people around us or in the worst case scenario...the priest. Last week, when he was all finished with his homily, Sloane piped up with a chipper "all done!!" for those near us to giggle at!!
I know the sign says "all are welcome" but I worry that the fine print read..."quietly." It isnt the church, priest or steeple that make me feel this way; its the people. I am sure there are those who remember when or those who appreciate the social butterfly that my daughter is. Hopefully, the 50+ woman that Sloane initiated a game of Peek A Boo with today!! But, there are also those who are in church for the solitude, peace and organized routine of it. Those people are the ones I think that are glaring at us, wishing we dont sit near them, and wondering if know there is a cry room???
The stress that comes with going to church is stressing me out. I dont know what to do and I dont know how to fix this. I like going to church and I want Sloane to respect the tradition of spending an hour with your faith each week. Maybe I'll ask our priest to add some fine print on the bottom of the "All are Welcome" sign that reads "even the toddler named Sloane Jacqueline"!!
Sloane has been drinking well, but she also has become a juice box hoarder. We have every flavor milk box, the Odwalla juice boxes (thank you to our friend Cheryl who found them at Market Basket) and yogurt smoothies. She loves them all, but more than drinking them...she loves to insert the straws into the boxes. She has become a hoarder and we have in a very Jerry Seinfeld way become the Juice Box Nazis.....No more, Juice Box for you!!
There was a full force tugging war over vanilla milk today before church. Perhaps that is the reason that our one hour of religious devotion today didnt go so well? Going to Sunday mass is something that was a tradition in my family. It was usually followed by going out to breakfast which made it all the more fun in my 9 year old eyes. It was a tradition that I treasured and continued to embrace until my mother passed away 16 years ago. I like to say that I took a sabbatical from my faith for a while. I needed to sort some things out with my higher power. Once my hubby and I decided to make a life together, we both headed back to a place where our spirituality took more of a priority in our lives.
I have always been a praying girl and having a child only amplified that. We prayed for a baby, then we prayed for our baby to be born healthy and then...... we started praying for all sorts of things that you shouldnt have to pray for in my opinion.
Things like:
please let my baby take another breath,
please let my baby not turn blue,
please let my baby wake up from anesthesia,
please let my baby not tug at the tube hanging from her belly, please let my baby not reflux so badly that she aspirates her reflux into her lungs,
please do not let my baby catch a cold. We prayed and prayed. And we still pray!!
Now, I am sure if my hubby would agree.....that God has been good to us. He answered our prayers and gave us a place to ground ourselves. Our church is one that has welcomed us in open arms. The sign above the door reads: All are Welcome. I love that. I have some issues with old traditions of the church so it is nice to see in some ways they are evolving with the present day.
Our priest is a family friend. He is a good man who bent over backwards to give us peace of mind while Sloane was in the throws of her laryngeal cleft diagnosis. He even broke some rules and let us have a private baptism because the thought of germs floating around mid winter in our church was one that tortured me. I begged my hubby to beg the Father to have a private baptism so we could keep it germ free. Church, while Sloane was an infant with a feeding tube, became a scary place. A big, bad, germy place.
We went to church as a family when it wasnt cold and flu season, when we werent needing a tube feed, and we sat in the back row far away from anyone coughing on our backs. Now that life has become more manageable and we have become more rational, we all pile into the car on Sunday mornings to get in touch with our spirituality. It has been going well. There are special snacks, whispers and some quiet play.
Today was a different story. Sloane was a bit too chatty and energetic for church. Now, I have had a conversation with our priest about the tolerance of children in the congregation. He is not bothered by it and in fact welcomes it. I will assume the thought is that toddlers/children have to learn how to behave in church and the only way to do that is to come to church. I am sure I don't have to explain why we wouldn't make ourselves comfy in the "cry room". To us, that would be like being locked in a box full of germs.
Sloane chatted and ate her way thru the homily. I could feel the eyes of the congregation on me. Many probably thinking.....shhh!!!
My hubby decided to take Sloane for a walk during the time for "peace with you." The jury is still out on whether Sloane needed a walk or my hubby needed to remove his hands from an unsolicited handshake. LOL!! Once they were gone, I immediately felt my shoulders relax. It hit me.....church was no longer a tradition for me.....it was a stressor!! I am all tied in knots because I am so worried about Sloane disturbing the people around us or in the worst case scenario...the priest. Last week, when he was all finished with his homily, Sloane piped up with a chipper "all done!!" for those near us to giggle at!!
I know the sign says "all are welcome" but I worry that the fine print read..."quietly." It isnt the church, priest or steeple that make me feel this way; its the people. I am sure there are those who remember when or those who appreciate the social butterfly that my daughter is. Hopefully, the 50+ woman that Sloane initiated a game of Peek A Boo with today!! But, there are also those who are in church for the solitude, peace and organized routine of it. Those people are the ones I think that are glaring at us, wishing we dont sit near them, and wondering if know there is a cry room???
The stress that comes with going to church is stressing me out. I dont know what to do and I dont know how to fix this. I like going to church and I want Sloane to respect the tradition of spending an hour with your faith each week. Maybe I'll ask our priest to add some fine print on the bottom of the "All are Welcome" sign that reads "even the toddler named Sloane Jacqueline"!!
Wednesday, November 14, 2012
Chugging
I do not know where the last week went. I have become a nightly victim of online Christmas shopping and house remodel research. I thought about blogging every night, but it didnt happened. This time of the year always sends me for a loop.
This year, considering that we are living in a 2 room efficiency essentially.....you would think that I would be more organized since I have nothing to tend to in our house. Luckily, I still have my washing machine so I am able to obsess about our laundry still. The remodel is half over; they tell me. It truly hasnt been to bad. The major demo is done which is great!! Now, things will start coming back together. I THINK????
We havent had many visitors since we have no where other than our bed for them to sit. LOL!!! Cuzzy did stop by on Saturday with my brother and my SIL. It was extra fun because Sloane was napping so I got to love up my little munchin without my jelly belly around.
I know I have posted this before...but let me be clear. My niece is fabulous!! She, too, has a sassy personality and cheeks that could be nibbled. The girls, who are 9 months apart, are complete opposites physically! In size, shape and coloring. Hysterical!! There is one other big difference as well. One of them chugs liquids constantly........
My niece loves to drink! I have never seen anything like it. She sucks down 8 to 10 oz. of anything without stopping. On Saturday, S was ranting for a drink so Totsie (thats what she calls me) gave her one. I poured her a tall glass (straw cup) of chocolate milk. Without any hesitation, S sucked and sucked and drank all 8 ounces without stopping.
It didnt go unnoticed by myself or my hubby. I didnt say anything, but my hubby yanked the pink elephant across the room. Sloane is not able to drink consistently. She can take frequent sips, but she can not put her lips on the straw and keep sucking and swallowing the way my niece can. It has been a concern of ours for a while.
To be clear, we are thrilled with the progress Sloane has made. What's not to be over the moon about: in almost 28 months, Sloane has gone from a child who had a feeding tube for all liquids to a child who drinks liquids that only have a 1/4 teaspoon of Simply Thick to every 8 ounces. Sloane's progress is incredible! I do think if I had known at the beginning of our journey that we would have gotten this far in 2 years, I would have relaxed more.
My assumption is that as Sloane gets more efficient handling the consistency of liquids in its natural form, she will be able to drink faster without breaks and "ahhhs" between each little sip. I am not sure if this is true. I guess the question is: can laryngeal cleft kids consistently drink liquids without aspirating?? I am going to defer this question to Kara, our SLP, and see what she thinks.
Sloane has 1 more week of Simply Thick. On Thanksgiving, we are discontinuing use of Simply Thick and starting to introduce liquids in their natural form.
This year, considering that we are living in a 2 room efficiency essentially.....you would think that I would be more organized since I have nothing to tend to in our house. Luckily, I still have my washing machine so I am able to obsess about our laundry still. The remodel is half over; they tell me. It truly hasnt been to bad. The major demo is done which is great!! Now, things will start coming back together. I THINK????
We havent had many visitors since we have no where other than our bed for them to sit. LOL!!! Cuzzy did stop by on Saturday with my brother and my SIL. It was extra fun because Sloane was napping so I got to love up my little munchin without my jelly belly around.
I know I have posted this before...but let me be clear. My niece is fabulous!! She, too, has a sassy personality and cheeks that could be nibbled. The girls, who are 9 months apart, are complete opposites physically! In size, shape and coloring. Hysterical!! There is one other big difference as well. One of them chugs liquids constantly........
My niece loves to drink! I have never seen anything like it. She sucks down 8 to 10 oz. of anything without stopping. On Saturday, S was ranting for a drink so Totsie (thats what she calls me) gave her one. I poured her a tall glass (straw cup) of chocolate milk. Without any hesitation, S sucked and sucked and drank all 8 ounces without stopping.
It didnt go unnoticed by myself or my hubby. I didnt say anything, but my hubby yanked the pink elephant across the room. Sloane is not able to drink consistently. She can take frequent sips, but she can not put her lips on the straw and keep sucking and swallowing the way my niece can. It has been a concern of ours for a while.
To be clear, we are thrilled with the progress Sloane has made. What's not to be over the moon about: in almost 28 months, Sloane has gone from a child who had a feeding tube for all liquids to a child who drinks liquids that only have a 1/4 teaspoon of Simply Thick to every 8 ounces. Sloane's progress is incredible! I do think if I had known at the beginning of our journey that we would have gotten this far in 2 years, I would have relaxed more.
My assumption is that as Sloane gets more efficient handling the consistency of liquids in its natural form, she will be able to drink faster without breaks and "ahhhs" between each little sip. I am not sure if this is true. I guess the question is: can laryngeal cleft kids consistently drink liquids without aspirating?? I am going to defer this question to Kara, our SLP, and see what she thinks.
Sloane has 1 more week of Simply Thick. On Thanksgiving, we are discontinuing use of Simply Thick and starting to introduce liquids in their natural form.
Tuesday, November 6, 2012
I Should Have Known...
I should have known when:
- exiting out of the house this morning by 7am for our appointment with Dr. Rahbar went swimmingly
- we arrived at mammie's house 15 minutes earlier than scheduled and for once she wasnt waiting for us
- sloane neatly ate her entire breakfast in the car & entertained herself for the entire ride to Children's in spite of traffic and time delay
- I remained completely calm and collected when it became apparent that we would be 25 minutes late for our appointment because of the commute
- we walked into the CADD clinic and there was only one other child waiting.... a complete contrast to every other time we had been here
- Sloane was beyond pleasant during our wait to see Dr. Rahbar
- we only waited 10 minutes to be escorted into exam room
- the weigh in, height measure and ear check were all fabulous ideas in Sloane's mind
- Sloane moved and grooved around the exam room without hesitation
- Amanda, Dr. Rahbar's PA, knocked on our exam door 5 minutes after our bums hit the seats and instead of spraying Sloane's nose with numbing solution, she only chatted with us professionally and personally
- as Amanda left the room, Sloane asked "is Rahbar comin?" honestly, my child is a flippin' trip!!
That's when I should have known.........
Mammie and I giggled as Amanda shut the door, and Dr. Rahbar, his 2 interns and Kara (our SLP) all entered the room with a sudden presence. Not a scary one, just a present one. If you know what I mean. Sloane wasn't overly taken back; she was far to busy looking for buses out the window.
As a side note, Auntie Suzs gave her an Elmo backpack as a treat and Sloane is obsessed with wearing it, taking it everywhere, and putting it on and off. Now, that is not nearly as bothersome to me as what she says after she has it on....she says in the most cheerful voice "bye, mom. I leaving. I goin on the bus." And just like that at 2 years 3 months old....she is ready to fly the coop.
As Sloane played "I Spy" with the buses, I brought Dr. Rahbar up to speed with Kara interjecting when necessary. I reported all the particulars.
1. Sloane is drinking 1/2 packet of nectar Simply Thick to 8 oz.
2. Sloane is drinking chocolate milk unthickened
3. Sloane has not had any respiratory issues and no pneumonias, but she has had a cold for 10 days that I took her to the ped for on Sunday bc I needed someone to tell me her lungs were clear.
4. Sloane's speech development is off the charts
5. Sloane has had a frequent wheeze while sick
6. Sloane has a rattle at the back of her neck at times, very similar to the one I would talk to the nurses about when she was first born.
Another side note, I had completely forgotten about this or had blocked it out. Very possible!! I remembered as I was placing my hand on the back of her neck to show Dr. Rahbar what I was talking about that this was the one thing I would make every person feeding Sloane do in the days bf we had a diagnosis. I knew something wasnt right. With the placement of my hand, I could feel her milk pooling up in her throat. There are days lately with the thinner liquid that I can hear and feel that same rattle noise.
7. Sloane hasnt had a flu vaccine yet, bc I want her to have the shot not the mist. I am overly concerned that it is her 1st winter without the feeding tube and bc I cant push liquids into, I am worried she may not hydrate herself enough if she gets sick so let's give her the more powerful shot, not the mist. I want Dr. Rahbar to order the shot as he is the specialist.
8. Sloane's wheeze after running or exerting exercise is still concerning me. Is her airway narrower than normal or is she a child who will have an inhaler in her Elmo backpack.
Once he had all the necessary updates, he bribed Sloane into the magic ride seat with some stickers and took a peek. Not a scope folks!! Just a peek with his flashlight!! I have no idea why he didnt scope her, but I am not complaining. The man, the legend isnt someone you doubt at any point. He has it all under control.
And so the roles were reversed and Dr. Rahbar reported back to me.
1. Sloane will try to discontinue use of Simply Thick in her liquids as of Thanksgiving. She will continue to be seen by Kara monthly to help us manage this.
2. Sloane should not drink water unthickened bc it is the hardest liquid for the muscles to swallow. Liquids with flavor or texture will help her swallow.
3. Sloane will not have a swallow study until Spring of 2013 bc she is tolerating liquids so well. A swallow study may give us information that we dont need, but will need to act upon. Meaning Sloane is clinically healthy so we assume she is not aspirating. If on a swallow study, we see aspirating then we will need to go backwards and thicken her liquids.
4. Sloane will see Dr. Rahbar in 6 months as long as she does not get sick while drinking liquids in their natural form
5. Sloane could still potentially have a 2nd surgery. It is not out of the question. Time will tell as we enter this next 6 months. He may want to put one more stitch in to improve the larynx functioning if need be.
6. Sloane could get discharged from Dr. Rahbar's care if she remains healthy and the swallow study in 6 months shows nothing contrary
7. Sloane coughing while drinking is okay. Dr. Rahbar is optimistic that coughing is a good sign that her throat is reacting. That is not to say that the choking, red and watery eyes and gasping for air is okay.
8. Sloane's rattle is from her larynx and the abnormality of it. The tighter it is, as a result of the repair surgery, the noisier her breathing may become.
9. Sloane's wheeze is not a concern at this time. If she becomes a chronic croup kid, then he will address her airway and its size. Sloane having croup 3X in a year isnt as concerning to him as the children he sees that have it 10X a year.
What should I have known??? I should have known this teeny tiny birth defect would not have stopped my daughter from moving & grooving....
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