BINGO

I had 2 different ways of starting this post floating around in my head this afternoon. I thought maybe I would just type these words and nothing else:
Sloane has pneumonia. I assumed that that simple sentence would tell you where we are in our journey.

Then I thought I would post this picture and that would explain what is going on in our world.

Those are the 2 short stories. Sloane has pneumonia and Simply Thick is now BACK on our new kitchen counter top after being gone since Thanksgiving.

The long story starts quite rapidly with the onset of vomiting on Friday night, a spiked 104.6 fever on Saturday that became ongoing, move on to a doctor's visit on Sunday with no answers bc Sloane's ears, throat and lungs were clear, then there was more vomiting accompanied by a daughter that resembled a wet doll bc her fever was 103.8..... so today we had another doctor's appointment.

We had a mirage of tests. Some routine (strep), others heartbreaking to watch (cathetered for an UTI and flu swap). As all of them came back negative, the last one was a chest x-ray. We both were surprised at the thought because Sloane's lungs were clear both yesterday and today. But the on call doctor in our practice explained that Sloane is unable to take a deep breath as a child so he wanted to be sure. It made sense so we went with. Not without longing for our ped who we LOVE. How dear, she go away????

Off to the radiology lab we went. Sloane, by this time, was exhausted. She had been violated in too many places for a child in one year never mind in 10 minutes. I was starting to get silent...not a good thing. My hubby and I were dying for an answer because this "virus" was going on too long and was to nasty for our liking. We headed back to the drs. office after the x-ray to wait. He told us blood work was the last resort if the x-ray was clear before we headed to the hospital. And so we waited.....

BINGO was the word I heard when the door opened to our examine room. The doc was so pleased to have an answer to our search of diagnosis. BINGO....its pneumonia. You could have picked me up off the floor as my hubby did back on July 24, 2010. This doctor was happy to write us a prescription and send us on our way with all sorts of instructions. Sloane wasnt his patient so the fact that she has pneumonia after drinking non-thickened liquids for exactly 5 weeks was lost on him. I am sure if our ped was there, she too would have felt our pain.

I can not believe it. I'll assume that Sloane has been silently aspirating for the past 35 days and those tiny aspirations have settled in her lungs to cause pneumonia.  Right now, we are focused on getting Sloane better. I emailed Dr. Rahbar's office and Kara to notify them of our new developments. I am sure there will be a change of plans to come.

I have been worried about this day for over 2 years. Sloane has pneumonia.

Buy A Book

I had to finish up some last minute Christmas shopping today and headed to one of my favorite places.....Barnes and Noble. I grabbed what I needed and entered a rather short check-out line. After the clerk tapped my purchases into the register, he asked me if I would like to buy a book to donate to Hasbro Children's Hospital's playroom. My answer was an immediate yes. I quickly glanced over the bookcase and picked one of my old favorites Charlotte's Web.

The clerk added handed me a book plate to put in it with a to and from line. I filled in Sloane's name on the from line and handed it back to the clerk. I paid for my purchases and walked to the car. Once I was buckled in, I was flooded with emotions for 2 very different yet very similar reasons. 

Years ago before I was married to my hubby, I volunteered with a friend at Hasbro. We worked the playroom for the 5 to 9 year olds every Saturday night 4pm to 9pm. We spent 9 months with the kids. It was a very special time in my life. The experience changed me. I did enjoy playing and visiting with the children, but it was very eye opening to see long-term ill children each week. And heart wrenching when some of those children werent there the next week. I cried for that reason and the reason that Sloane was a patient as Hasbro. I was weepy. I cried the whole ride home. 

All sorts of visions screamed across my mind. Ones from my volunteering years. I thought about the nights I would read to child by their bed. I thought about the nights I would try to get the kids to pick a book from the bins to take back to their rooms by giving all the details of interest I could. I thought about the nights I wished some child would be well enough to be read to.

Visions from Sloane's first days raced around in my head. The reality that I was one of the Hasbro parents. I was teary because there are still children at Hasbro needing a book to read or an ear to listen to them. As I was driving, sniffling, and reminiscing, all the realities came flooding back. I bought a book for a child and in return I got a reality check from myself. 

Our New Normal

Sunday mornings, we all get gussied up (NOT) and head out for breakfast! Sloane has her favorite spot. Seeing as though, we haven't had a working kitchen for months, we all welcome a fancy breakfast.

As we made our way out of the car, I thought WTF I forgot a sippy cup!! And as soon as that thought hit me, another one trailed almost simultaneously behind...Sloane doesn't need a sippy cup! 

She can drink out of the restaurant's kiddie cup without a thickener! There was an entire feeling of calm that came over me. I looked at my hubby and said "ha, I forgot a sippy cup, but we dont need one! Isn't that amazing?" To which he agreed. We both smiled our way thru the walk to the restaurant.

We have not known normal in regards to Sloane's nutrition until now. It is hard to let go of the old and accept our new normal! I am sure I will not let go of my little sips spiel ever! Sloane, now, tells me little sips when I drink. Part of me wishes she was with me on Saturday night because the headache I woke up with reminded me that I clearly didnt use little sips!! LOL

I think it is so funny that exactly what my mommy friends told me is true.

Don't worry about one phrase too much because as soon as you get it down....it changes and a new one begins!

Now, that we have the drinking of liquids in their natural form under control, we are starting to pull the reigns a bit on what Sloane drinks. Her desire for water has diminished the amount of milk she is drinking AND her cold symptoms have caused us to increase the amount of juice she is drinking. The equality among liquids is completely off. We started as parents who worried if our child would ever drink. Then once that happened, we worried about how she drank. Next, we overly concerned ourselves with the amount she drank. And now, we are on to what she is drinking. It never stops!! 

Today was the first day in a few weeks that I designated what would be in the sippy cup. There was no negotiation. Sloane loves to play Monty Hall. Ill try to convince myself with this new normal that I dont need to make a chart on the computer to keep track of how many ounces Sloane is drinking of milk, water or juice each day. I am going to try not to worry about this inequality of liquids phase too much as I am sure we will be on to a new one soon enough. 

On Our Own

Sloane continues to sprint around holding her sippy cup filled with water. Since her first sip on Thanksgiving, she hasn't looked back. Water hasn't lost its luster....its all she wants!

I have been sprinting myself all over the place..but it appears I havent sprinted over to my blog spot. My apologies. Our home renovation has taken on a life of its own and honestly, I can not keep up. I actually am scheduling in ordinary things to get them done in a timely fashion. A trip to target used to be a regular occurrence but lately I have to write it on the calendar so I dont forget. Managing a home remodel is a whole another job!! I had to take off from my regular job of being a mom today to do house things. Luckily ti-ti was coming to bop class anyhow, so it wasnt a huge deal when I slid out to run to Home Depot!! First time ever, I have given up time with Sloane for something else. Not a stellar moment, but I had to check some things off the to-do list.

I am embarrassed to say that there is no sign of Christmas in our home....there are only signs of Dustmas!!! Sloane has seen Christmas in other's homes, but not ours! We do read Christmas books every night if that counts. I feel bad, but right now there isnt much I can do. Maybe by next week, we will have some twinkling lights. Ti-ti did feel badly for Sloane today and bought her a snowman night light for her room. Sloane was very excited to say the least. I keep trying to tell myself that Sloane has no gauge of the aesthetic Christmas spirit so she will not remember that we skipped out on decorating this year. Our house is almost there.....almost finished. But I am sure long after all the saw horses are gone and the banging has stopped, the dust will remain!! I have never seen anything like it!!!

Sloane has been drinking non thickened liquids for 20 days. We had swallowing therapy on Friday with Kara to check in on our progress. I have to say I was very excited to share our new developments with Kara and her colleague. Sloane was very excited to have a snack from Kara. It was all she was talking about for 2 days. Kara has a cabinet of crunchy snacks...when Sloane sees it, its like she has hit the mother load!! LOL She loves Kara's snacks. And so we all piled in the car and made the drive. Not before, I SOS mammie for 3 ice cubes(cant make ice at the house), hard boiled eggs and grapes. It was a rough get up and go morning to say the least. One things was missing and no-one cared at all.......... there were no packets of Simply Thick in our bags!! Only one cup of ice cold water with 3 decorative plastic ice cubes floating in it thanks to nonni!

Now, would be a good time to have side note! The 3 of us would not have been able to survive this renovation without our families. When we are not home during the day, Sloane and I have been living at ti-tis. And when I say living...I mean living. Sloane naps in her bed!! We have been using nonni's house as our playground and her dishwasher daily. We even slept there last week for 2 nights. We crashed in like gang busters!! lol And mammie has been feeding us frequently. Needless to say, we are surviving our remodel because of our families. Thank you to all of you! And there is one more person who has lived through our home remodel other than the 3 of us...it's the machine! She has babysit our daughter in conditions that even we didnt want to play in. The machine is a machine!

When we saw Kara on Friday, we bounced into her office with water and a juice box in hand. Sloane snacked and sipped her way through our appointment. Kara was thrilled to hear that Sloane was handling liquids in their natural form. We talked about the occassional coughing and chugging. Because Sloane is not sick, the coughing does not pose a problem and we can assume that general coughing is a good sign. A sign showing that Sloane's larynx is more in tune with her swallow. The chugging is a mommy problem. I need to continue to remind Sloane to take small sips.

Because Sloane is handling the liquids well, we will not see Kara next month. In fact if there are no problems with Sloane's swallow and if she remains healthy, we wont see Kara until the swallow study on April 30, 2013.  Kara was pleased and sees no reason for us to visit with her if all stays copasetic. Soooo for the next 4+ months, we are on our own! No appointments with Dr. Rahbar and no therapy sessions with Kara. Sloane's laryngeal cleft is all ours. We own it and we need to manage through this winter.

Kara did say that this winter is the true test. Will Sloane remain healthy all winter? Will she hydrate herself enough if she gets sick? Will we need to thicken up her liquids this winter to help her remain healthy? I guess time will tell....

As if I didnt have a full plate, I am going to be starting the story of our journey for Dr. Rahbar's website within the next next. I am very excited to enlighten others parents about Sloane's crash landing into our world.

Water Junkie

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???

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.... 

• 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.............)

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"!!

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.

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....

Day Of Events

Today was a day of events! Now, of course, there was a national event...Halloween! But our day started with events long before Sloane slipped on her yellow & black striped tights.

Now, I have written about "the machine" before. Some call her our nanny, but we call her our babysitter. The machine has a real life. She is a corporate girl by day and a bopping (dancing) machine with our daughter at night. Sloane is now concerning herself with what people's jobs are and where people work. She frequently asks the machine or Nanna, as Sloane calls her, what her work is. We started our day of events with a visit to Nanna's work. On the ride there, Sloane was beaming with small zips of "momma, I'm getting a balloon at Nanna's work" drifting to the front seat of my car. Sloane was a huge hit and charmed her way right into the room with treats. Consequently, Sloane came home with 2 balloons, 2 packages of stickers and a stuffed bear. Delighted is a word to describe this event.

We then drove to the dealership to have our oil changed. I happen to know the family that owns the dealership so we are treated a bit nicer than others. What this means is that, we were escorted into a very comfy office to wait while our service was being done. Sounds good, right?? Well it was, right up until Sloane said "momma, poop. I need potty".  Now, as my hubby says, potty training was on hold with the construction. He loves to bust my balls. It wasnt exactly on hold, but it was taking less of a priority. The house is a disaster, there are 3+ random men walking around my house, and we can not stay home all day....so potty training was happening but I wasn't obsessed with it. For whatever reason, Sloane is excelling at potty training during this construction zone. I think the smaller quarters have made it easier for her?? Anyway, back to the dealership. Sloane need the potty. For a split second, I thought of lying and telling her that there was no potty. But instead, I scooped her up in fear that she would stop and poop before we hit the potty. Once we walked the entire dealership to the bathroom because the office we were being treated like luxury in was way away, there was someone in it. So we waited and waited. Nothing was happening while we waited so I assumed it was a false alarm or considering that it was Halloween....a trick!! We finally entered the bathroom and it hit me....WTF....a public bathroom!!! I told Sloane "hands on the head" and feathered the nest if you know what I mean......I scooped up Sloane and dangled her above the toilet. To my amazement, she tinkled. No trick!! And I asked her if she was done. The answer almost knocked me off my crouch. Sloane said "momma, I poop." And, right there, on a public toilet at a car dealership no less, Sloane did poop. It was a first. Shocked is a word to describe this event.

We did some daytime to trick or treating. Which was very fun! On the ride home, I got a call from my friend who had the triplets back in July. 2 of her sons are home from the NICU, but one is still having some trouble eating. The medical team has suggested putting in a gtube/mickey button/feeding tube. My friend wanted to talk about my experience. There was so much to say, so many stories to remember, and the reality that everyone story is different. One thing that I should say is that my friend is sooo calm. It is baffling to me. I was a mess with one baby with a medical issue. My friend has 3 sons....3 babies....3 infants add a feeding tube to that and I cant make sense of it. The only thing I could think of is that when multiples are going to be born, families are prepared for some medical issues to come. And in my case, I was not prepared at all. Reflective is a word to describe this event.

After a 2 hour nap, Sloane did, once again, pull on her yellow & black striped bodysuit and tu-tu to trick or treat. She did great! We saw all our favorite neighbors from our morning walks. Sloane pranced up to their doors with a sweet Trick Or Treat. I was a bit concerned that she tried to enter each of their houses. LOL And when that failed, she at the very least asked each of them what their momma's names were and if they had a dog. Proud is a word to describe this event.

Down, Baby, Down

Sloane has been decreased to a 1/2 packet of Simply Thick to 8 oz of liquids. In my opinion, she is tolerating this consistency. In simple terms, we have decreased from 1 tablespoon of Simply Thick to 1 1/2 teaspoons. Sloane does have a runny nose so it has been a struggle getting her to drink. Right now, the varieties of liquids in my refrigerator could be used to hydrate a small village. I have been trying to keep Sloane's interest level high.

Somedays, I feel like most of my day revolves around how much Sloane is drinking, what she is drinking, and if she is safely tolerating what she is drinking. It becomes all encompassing some days. I spent the first 2 years of Sloane's life obsessed with her nutrition.... how much she could tolerate through the feeding tube, what she was eating safely by mouth, how many mls. of fluids she was taking in daily, and what consistency was safe. Now, that she is a toddler and is developing her taste buds, I take it personally when she doesnt eat of drink. Managing Sloane's daily nutritional intake was my job. When she doesnt drink enough or eat as much as she normally does, I get upset. My hubby says I hover or get all up in her section. He is right, but I cant control it. It translates, in a irrational way to me, that I am failing at my job. I have had a few meltdowns this week.

Sloane is tolerating the decrease in Simply Thick. We were scheduled to see Dr. Rahbar tomorrow, but our appointment has been changed to next Tuesday because of the weather. I am not bothered by this at all. It gives us more time to practice drinking our 1/2 packet of Simply Thick to 8 oz. I am hoping that her cold subsides and she perks up a bit so we can really push all the new fun liquids in our house.

Which brings me back to my fully stocked refrigerator! Thank goodness that our refrigerator is bursting at the seams because as of tomorrow morning it will be the only appliance in our house. YIKES!! Our kitchen is being torn out tomorrow to make space for our new floor plan. Its been all fun and games this past month....we have been without a living room and playroom, but hunkered down just fine in our kitchen space. Now without that space, the 3 of us will be confined to our bedrooms and bathrooms. It is going to be a very long month/s!!! W trust our contractor and his timing so we are hoping for the best. The circle of trust players have opened their homes to us as we move forward in this process but I would to keep Sloane as structured as I can. Im going to take one day at a time... as with the past 2 years it wont be one sip at a time, it is going to be nail at a time!!

I Need To....

What I have noticed over the past few days:

1. Sloane is a not drinking as much as I want her too without prompting. I am not sure why? Is it the fact that it is chiller outside and she is not as thirsty. Is she not interested in the liquids I am offering her? Is she taking ownership over the whats and whens of her drinking? I need to get a larger variety of drinks in our home!

2. We have way too much stuff in our house. If the general public saw how we are living in midst of our house renovation, I think they would die. I need to purge our home!!

3. I am starting to get obsessed with Pinterest. I have no idea how to use it, but I keep pinning things into one random board....its very disorganized.  Many of my pins are about home decor and tips on how to organize your home. It makes me really happy to look at my board every night. I dream about having a house with labeled bins, boxes, and crates everywhere. My board is becoming a bit too much. I need to reorganize my Pinterest board!!!

4. I was suppose to decrease Sloane's Simply Thick down to 1/2 a packet to 8 oz. of liquid yesterday. I didnt do it. There isnt a specific reason why. There are only a list of them. I need to decrease the Simply Thick tomorrow!!!!

5. I havent thought about the fact that we are going to see Dr. Rahbar on Tuesday. It is going to be a big day; a 2nd surgery discussion MAY occur.  Im not sure making the appointment the day before Halloween was the best idea, but it is what it is. I need to spend some time mentally preparing for our visit!!!

Small Moments

I remember people telling me that it is the small moments of parenthood that sometimes amaze you more than the big ones. On our walk yesterday, I had one, actually 2, of those small moments. It was a brisk morning.....almost a bit too brisk to be out so early but I put on my big girl undies, bundled Sloane up and we hit the road.

The first small moment happened early in the walk. A very simple vision to those passing us by, but a very HUGE accomplishment for this family. 

Sloane was drinking a chocolate milk box UNTHICKENED independently on our walk. A very simple vision for anyone outside of our circle of trust. A very special moment for this mom. I cant lie....there was a was the occasional reminder of "little sips", but other than that Sloane handled the milk box herself. I almost cried watching her thru the sunroof of her stroller. I NEVER imagined we could get this far. 

The second small moment happened close to the end of our walk. Sloane and I were in our groove. I had the ipod blearing and Sloane had the iphone's videos buzzing. She had finished her milk so my eyes weren't glued to her thru the plastic window. When I did look down, I noticed my phone was on the call screen with my hubby's name, the speaker box was highlighted and 30 seconds on the time clock. I shut off my ipod and immediately heard my husband's voice. For a moment, I dont understand what is happening and then it hits me!! My hubby called me, Sloane swiped to answer the phone, then put it on speaker and had a 30 second conversation with her father independently. UNBELIEVABLE!!! When I explain to my hubby what has happened, he already knows because Sloane told him we were out walking! 

Professionally Speaking

It is crazy what you can learn from a professional. I am one that usually lets a professional make the call on certain things...actually most things aside from paint colors. I happen to think I am a professional when it comes to paint color choices!! LOL

Our meeting with Kara, the swallowing professional, was very informative on Friday in regards to Simply Thick. Here are so quick notes:

1. The amount of Simply Thick in the packet is only 1 tablespoon. I never measured it, but simply assumed that it was much more. One tablespoon of Simply Thick to 8 ounces of a liquid.

2. Simply Thick comes in a pump container. Just like a big one of shampoo you might see at your hairdressers. It resembles a large hand sanitizer pump container which would not be ideal in our house since we have pump bottles of that in every nook and cranny. I like the packets better because I feel like they are more consistent. Worrying about if everyone is pumping the correct amount would give me more gray hairs.

3. Children's Hospital has revised their protocol on Simply Thick in regards to the recalls. The reality is that Sloane is not in the same danger as preemies and infants under 3 months for NEC, but the long term effects of Simply Thick on any age group have not been researched. Older toddlers and children did experience some gastro illness, but nothing more than abnormal loose bowel movements. I can not at this point recall any that were worrisome. The long term effects are ALWAYS on our minds.

4. Kara did give me other options to use to thicken Sloane's liquids, but most of them would change the texture of her liquids which is concerning. Sloane has come so far on Simply Thick and in a few weeks we MIGHT be rounding the corner....decreasing from 1 packet to a 1/2 of a packet in 8 ounces so I am leery to change anything up at this point in fear that Sloane will refuse the new options.

5. Sloane (after she has drank 8oz. to one packet w/o any issues for 2 weeks) MAYBE able to drink some commercially available nectar consistency liquids like:

Gerber Yogurt Juice

Dannon Drinkable Yogurt

Naked Smoothies

Goya Fruit Nectar

We will try them at home first and see how it goes. I am very interested in Odwalla Smoothies for Kids. I can not find them anywhere and they cant be ordered online. I know that Sloane will love having her very own juice box to hold. I have the circle of trust on the lookout for them.

Is she a swisher?

After 2 years, I finally have my shit together as the mom & driver and made it to mammie's house early enough to give Sloane some time to play before we began the rest of our drive! letting Sloane stretch her legs a bit made a big difference in our morning. Rather than Sloane sitting for almost an hour and half hour straight, we broke up the drive a bit. After 2 years and about 20 + drives to Children's, and I finally have my shit together enough to be early!! That should give everyone a clue to how my life rolls!

Our visit with Kara was a good one on all fronts! Having a professional to facilitate our swallowing journey has changed everything. I entered Kara's office with all my concerns on the tip of my tongue. I had been obsessing about them for over a week. After Sloane charms Kara to get a snack different from the one her mom brought, I open my trap and tell her about the last 2 weeks of aspirations and my opinions in regards to them. While we are talking, Sloane is wandering around the room drinking her ju, then switching it up to chocolate milk and finishing with some chunks of watermelon without a cough, gurgle or choke. Isn't it always the way??? 

Now, Sloane didn't just sip either today. She did her big gulp and swishing trick. Kara asked me if I thought Sloane's swishing was a habit. My answer was no, I don't think so. Honestly, I think it is a result of watching her father do his Listerine antics in the morning. I think it is a goofball move. She swishes her gulps to be a goofy girl and sometimes to tease us a bit. Sloane has this look on her face when she swishes that let you know she is doing something you arent exactly thrilled about! She's a little shit!! I was very proud as a mom NOT when Sloane showed Kara just what a monkey she can be. Kara asked Sloane to swallow her gulp and swish and Sloane shook her head no twice with the sweetest smirk on her face!

When Sloane does the swish, she ends up with too much liquid in her mouth and when she tries to swallow it, she loses control of the liquid and aspirates it. I wasnt excited to hear that swishing can become a habit and not a good one. Kara agrees with my initial hope and "the machine's" thoughts....Kara thinks that Sloane's coughing & aspirations have more to do with volume than consistency. 

Some facts to note that we reviewed today:
1. Dr. Rahbar doesn't become overly concerned with a child's swallowing progress until they become sick. In his opinion, coughing is okay while a child is learning to swallow so he may not be in red alert mode on Oct. 30 because Sloane has been healthy! I knew this but couldnt wrap my head around it.
2. When Sloane has a stuffy nose (like this week), her swallow will be sloppy because she cant breath thru her nose while her mouth is closed. I didnt consider this one myself but it makes perfect sense.
3. Sloane's coughing MAYBE a good thing. If you have been following this blog since the beginning, you will remember that Sloane was a silent aspirator. She aspirated her liquids and didn't react to it. Because of this, we ended up at the Neuro Department of Children's in line for a MRI. It was unclear why Sloane wouldn't physiologically react to an aspiration. The thought was: Does Sloane have a neurological issue affecting her swallow. The MRI's results were NO she doesnt. At this point of our journey, the coughing when Sloane aspirates could be a GOOD sign. Her larynx has woken up and is reacting to the aspirating. Kara said sometimes this is what happens in laryngeal cleft kids. There larynx wakes up and then the child's swallowing progresses. This thought process made me relax instantly.
4. Children Sloane's age without laryngeal clefts are able to swallow big gulps and swishes without aspirating. Sloane will need to learn to control her big gulps the same way she has learned to swallow liquids. My question is how?
5. Sloane may be swishing because her liquids are getting thinner and she likes that she can move them around in her mouth. Yes!! This could be it. The thinner the better in my child's eyes. 

The schedule is: 8 oz to one packet of Simply Thick for 2 weeks! And then we are on decreasing to a 1/2 packet to 8 oz. until we see the myth, the legend on the 30th. We are thinking that a follow-up MBI(swallow study) will be scheduled after this visit. 

Kara and I did discuss Simply Thick and all the hype surrounding it lately. To be continued.........

Normal

Yesterday, we had lunch with Sloane's Godmother and "G". Nothing special about that, it is a frequent occurrence. But, yesterday did mark a 2nd anniversary of lunch in this family. And we took a moment to laugh about how things have changed in 2 years.

When Sloane came home from the NICU at 8 weeks old, I didn't take her anywhere for days...actually for a month. It just seemed safer to be at home with her. I was scared to leave the house. I could control the germs, the elements, the feeding tube schedule, and Sloane's every move. I didn't even think about going out. I was fine. Sloane was fine. And it worked.

That was all well and good until Columbus Day 2010. The aunties are teachers too and had the day off so they plotted a plan to get Sloane and I out of the house. They thought it would be fun to do some outdoor shopping in the fresh air and have lunch. I rejected the idea immediately stating all the reasons why it wouldn't work.
There was the one hour feeding tube feed, the reflux that became aspiration because of the cleft, the germs floating around, and the fears. I knew as I was explaining my decline of the invite that I was going to be dragged to go anyhow. 30 minutes later we were on our way to our 1st day out!

My hubby, too, had the same concerns as I had in regards to taking Sloane out. So when he heard the plan, he decided to leave work early and join us for lunch or rather "get his arms around situation". I remember that day well. It all went swimmingly if you leave out the part that Sloane did a HUGE poop and I did not have enough wipes or a change of clothes. LOL Before you judge me, we never left the house and Sloane's poop was completely under control in the house.

I remember parking Sloane's stroller on the side of the table and hooking her up to the feeding tube for the 1st time in public. I can still see the scene in my head. There was a feeling of accomplishment in my heart on the ride home. I certainly didn't start going out for lunch after that day but I was more open to the idea.

After 2 years, lunch is a normal occurrence these days. Not only lunch, but a sippy cup in Sloane's hand while she eats. 2 years ago, I never thought that would happen!! Lunch is so normal that yesterday, while I was trying to help Sloane pour her marinara sauce on her pasta, she gently pushed my hand away and said "no momma, eat your own salad." My daughter, the child I sheltered for months and basically kept in the bubble of our home, is now up on the normal social etiquette of lunch!

Trump Card

Sloane did have some episodes of coughing over the past few days. Sloane is not coughing with every sip....she is having a coughing period maybe once or twice a day. As I said in my last post, it isn't clear if Sloane is having a problem with the consistency (7oz. to one packet of nectar) OR the volume in the sip. I have watched her every sip over the past few days as did "the machine" on Saturday night. We both are leaning towards a volume issue not a consistency issue. Sloane is coughing when she has a large sip in her mouth that she has swished around and then tried to swallow in a gulp.

My hubby and I spent much of Saturday discussing this as Sloane performed her coughing for him Friday night while I was not home. Now, my hubby has a different approach to life than I have. He looks and thinks of things differently than I do. So, when he started to suggest that we might have a problem on our hands I started getting a sick feeling in my gut. The problem wasn't the problem....the solution to it would be the real problem. My hubby was suggesting that Dr. Rahbar may in fact have to go back in and fine tune Sloane's cleft repair surgery. A 2nd surgery!  His question was do 2 year olds without laryngeal clefts have trouble with big sips? It doesn't seem normal that Sloane will not be able to  take big sips for the rest of her life.

I decide to share our concerns with mammie on Saturday night....after all, she is my wing woman. Mammie is the only other person who hears Sloane's story from the medical point of view first hand. Many times, she absorbs the information better than I do exactly why I take her with me. When we discuss Sloane's LC, its a very factual and realistic conversation. As I shared our thoughts, Mammie confirmed that she, too, is thinking Sloane may need a 2nd surgery. Her reasons were similar to my hubby's but she also had a trump card. Mammie thinks that the myth, the legend Dr. Rahbar was trying to get me ready that Sloane would be having a 2nd surgery on our last visit.

I was silent for a moment and then thought.....she was right. That was how Dr. Rahbar operated (no pun intended). He is a straight forward in a very kind, gentle manner. He lays the framework in a way that he tells you exactly what's going to happen before it does. I thought about our conversation. He scoped Sloane and when he was done...he said:

• let's up the ante and push her hard until the end of October, 
• if she gets stuck on a consistency, lets give her a swallow study,
• based on those results, I may go in and do a 2nd surgery

So now, we decide. Should I up her to 8oz to one packet tomorrow as the schedule says to and see what happens? Or should I stay at 7oz until we see Cara on Friday? I would like to tell you that we have decided, but I cant. I have spent the last 24 hours with a sick feeling in my gut.  I cant even think about Sloane needing a 2nd surgery and all that comes with it emotionally. Sloane has come so far, as we have...a 2nd surgery changes all that. I immediately begin to unravel. My hubby reminds me that we are 80% there....its only a fine tuning to get us to the finish line...and that I shouldn't get nervous unless he does. This is all factual and true. I, on the other hand, cant be rational. 

Hawk Eyes

So I mentioned to mammie on Monday that I was thinking of moving Sloane up to 8 oz. to one packet earlier than it is scheduled to happen. I may have spoke to soon. There has been some coughing the past 2 days. I can't get a handle on why yet. As I am sure you assume, I do not watch every sip that Sloane's takes from her sippy/straw cup. If she is drinking from another vessel then I am hawk eyes, but her sippy/straw cup has given her some freedom.

The coughing has happened a few times a day and because I am not right there, I can not tell if it is a consistency issue or a volume issue. I have decided to keep everything the same until the scheduled move up day Monday. My focus now will be to watch every sip so I can make a determination. If she continues with the coughing, I THINK I will leave her at 7 oz. until swallowing therapy on Friday so I can get Cara's input. If it subsides, then we will move on to 8 oz. on Monday.

I am typing this during nap time which is laundry time for me. I would just let to tell the cyber world that I am sick and tired of food stains on Sloane's clothes. I do the cycle of spray, wash, re-spray, re-wash, soak and re-wash again on some items. It is ridiculous!! There are some days that a big drum of clothes soaking in Oxy Clean water is in my kitchen sink like a witch's brew. Talk about annoying!!

Why am I on this rant today??? Well, yesterday, Sloane wore some brand new very cute neon yellow skinny jeans with a tunic to her nursery school visit (another post for another day...but spoiler alert: SO FUN) and she dripped some watermelon on the leg of the jeans near her ankle. Certainly not a spot that a bib would cover, maybe a mu-mu, but not a bib!!! So as soon as they are off her, I spray them and throw them in the wash. Let's be clear it was only watermelon juice!!! I take them out of the dryer today and the freakin' spot is still there!!! This would have been acceptable to me if I let the stain settle in for days or if I didn't spray them with a spot cleaner first!!

The pile of clothes to be spot cleaned on top of my dryer keeps growing! And I don't know how to fix the problem. I am hawk eyes before I toss any of her clothes in the washer. Examining them in the bright light, looking for a drip or smear. Last week, I actually changed Sloane in crummy clothes for dinner time. Not before, I told my hubby that I was going to invent a zip up comfy tunic for her to wear during eating times!! Like an eating smock instead of an art smock. Another invention thought that I will do nothing with!!

I was already obsessed with laundry. My hubby had a mini intervention with me once. He instituted that Sundays was a laundry free day. It drove me crazy. I like the bin to be empty at all times. Now, the food stains are sending me over the edge. I love fruit and fruit is becoming my enemy.

Some days, I am embarrassed to admit that I pick Sloane's fruits choices based on what she is wearing. Irrational and a bit concerning.....I know!!! If she has something new and light colored on or if there isn't a bib accessorizing her, I'll give her an apple, pear or banana. If her outfit is older and darker colored, she gets watermelon, berries or melon. Thank goodness, Sloane would choose to eat any fruit over any other type of food any day because her mother is a nut!

We Know It

When a child aspirates, you know it! This morning at Sloane's favorite breakfast spot, there was no mistaking that she had aspirated sips of her morning juice. Did she aspirate because she cant handle her 7 oz. to one packet consistency safely? I don't think so. I think she aspirated either because the juice was thinner than 7 ounces (the blind eye measuring may have been off) or she took too big of a sip (the diameter of the straw was wider than she is used to so the intake volume may have been too much for her).

Whatever the reason, she did aspirate. There was the look of panic in her eyes because she is trying to breathe, there was the coughing and gasping, her eyes turned red and then the flushiness spread to her face. We used to panic but now the cup is tugged away, there is an "arms up" command, and then a bang on the back. Usually in my head I am thinking, WTF, I just let some foreign junk enter into her lungs, sit there and ?????. In the past, I would go "off the reservation" with these thoughts meaning they would become a bit irrational in regards to the jump from one aspiration to pneumonia. These days, I am a bit more rational about one aspiration. When our child aspirates, we know it!!

We are starting the renovation to our home soon. We are both going into the 8 to 10 weeks of complete uprooting and destruction with optimistic approaches. I think the circle of trust thinks we are nuts. The way I see it is if my hubby and I can survive a crash c-section, our infant turning dusky on day 3 of life, 7 weeks in the NICU, surgery being done on our 1 month old, feeding our child through a feeding tube and living in complete emotional and physical survival mode for the first 6 months of Sloane's life then shame on us if we cant survive an 8 to 10 week renovation! Our experience with Sloane and her laryngeal cleft has truly changed our outlook on all aspects of life and we know it. 

16 years

Today was the 16th anniversary of my mother's passing. I can not explain in words what that feels like. 16 years without a mother is a long time. It actually is a lifetime in my eyes and heart.

Sloane has been asking me and others "where is your momma?" lately. My response is that my momma and her Grammie Jackie is in heaven with the angels. As I say the words to my 2 year old, I realize we both have yet another thing in common.....neither of us understands what that means or why that is. Maybe in another 16 years we both will.

Kicks in the ???

We have been keeping calm and carrying on. I emailed the medical team about the Simply Thick concerns. They all eased our concerns noting that the issues were in fact with preemie babies and full terms under 3 months old. We lucked out that our new SLP, Cara, was on the panel for Children's that addressed the Simply Thick FDA concerns. She will be calling us soon to discuss other thickener options as both of us are apprehensive to continue using Simply Thick long-term. I would have to say that this is just another kick, in the you know what, to speed up the thinning out schedule.

We officially started 7 oz. to one packet today! Right on schedule with Cara's new instructions. Sloane drank about 16 ounces throughout the day without a gurgle to be heard. We will use 7 ounces for the next 2 weeks.

 My hubby, the adventurous one, gave Sloane a milk box this weekend without any thickener added to it. Now, Sloane was beyond thrilled. She has sipped these milk boxes before for a sip here or there.  But many times, Simply Thick was added when she wasnt looking. On Saturday, daddy handed her the box to have on her highchair tray. Sloane was in her glory!! He monitored every sip to be sure each one was small..... to Sloane's dismay. The entire box was gone before lunchtime was over without a cough, gurgle or sound. I will even admit that I was in shock.

Now, of course, chocolate milk is more viscous. When I thicken it, I always use more ounces of liquid than I would for any other liquid. For example right now, we are on 7 ounces to one packet. If I was thickening milk, I would do 9 ounces to one packet. Watching Sloane drink the milk box this weekend was another kick, in the you know what, to speed up the thinning out schedule.

Keep Calm & Carry On

Yesterday I blogged about the amount that Sloane drank and how you never know what you are going to get.....well, this what you get!

You get 2 parents preforming 007 work at 10:30pm because their sound asleep child has peed the crib. She is snoring her 1/2 snore in a puddle of pee-pee. This has never happened to our knowledge. We decided to change her and her bed without her knowing. I had my doubts, but my hubby was sure we could get it done. And we did! I changed Sloane on our bed in ever so dim lighting and my hubby took care of the crib. Sloane did open her eyes once to tell me she wanted the baby book. Sloane is addicted to Princess Baby by Karen Katz. We read at wake-up time, at nap time and at night night time. She is now reciting the story with me. Anyhow, she wanted to be sure that we didnt miss a read last night mid diaper change. lol!! I obvisously opted not to read the story and hubby transferred back to her dry crib. That folks is what you get when our child drinks all day!!

This afternoon, my hubby and I were alerted to a very concerning article on Simply Thick on Bloomberg today by our dear friends. It stopped us in our tracks and has us in investigating mode. I have already emailed all the members of Sloane's medical team. I posted on 4/17 about my concerns on Simply Thick and its effects with daily use. These concerns are now heightened to say the least. My hubby and I will wait to hear back from our team and move on from there.

There are parts of these articles that make me want to break out in a full blown red alert craze and other parts that give me some comfort. The comfort comes from the facts that:

• Sloane was not a preemie, 
• she has been drinking Simply Thick for a long enough time that I THINK we would know if she was having short term adverse effects, 
• and ALL of Sloane's medical team has known about the significance of Simply Thick in Sloane's daily liquid intake. 

http://mobile.bloomberg.com/news/2012-09-18/baby-deaths-linked-to-infant-formula-additive-fda-says.html

http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm256250.htm

Connecting the Dots

Today there was the 4 oz of flavored water during the morning, then there was the 6 oz of juice at lunch, and then there was the 6 oz of flavored water this afternoon topped off with 2 more oz. at dinner. Some days, you just know what you are going to get!

What made today extra super duper is that Sloane asked for a drink!!!  Now, I am sure that doesn't seem that special but in our world it is. Laryngeal Cleft kids have to learn to make drinking part of their normal life which is a very long process. It starts with getting the child to like drinking, then to pushing them to increasing the volume, onto helping them to make the connection between being thirsty and quenching that thirst with a drink, and lastly getting your child to request a drink because drinking has become part of their daily routine. All of this happens while the liquid is slowly thinned out. It is a process......a process that is slow and steady. There are lots of dots to connect.

Just like the post: Sip, Wait, & See 2/29, there are days when something happens that makes all the Sipping, Waiting and Seeing worth all the wondering time. Today was one of those days. Sloane said, "momma, I want juice." It took me a second or 2 understand or rather process what she said. Basically, for me, that was like hearing my 2 year old recite the pledge of allegiance. To have Sloane ask for a drink is quite an accomplishment in our home. There were times when we would jump thru hoops just to get her to take one sip and usually that sip was encouraged strongly. Sloane wanted a drink yesterday and she proceeded to drink it of her own will. 

INCREDIBLE!! 

 Dr. Rahbar's office asked me today to write a rough draft about Sloane's journey for them this week. Amy asked me to include a timeline of events. I have started to give my approach some thought with the voices in my head. So much has happened in the past 26 months. The question becomes how to tell the story.  It seems I, too, like my daughter will need to connect the dots. 

Rattling Away

If someone out there can teach my 2 year old to walk and not run that would be great. This morning there was a big boo boo. I was walking down the hallway to answer the phone, Sloane was sprinting on my heels and down she went on her forehead with no bracing of the fall. How she didnt break the skin open, I have no idea??? She slammed so hard that she has a blood blister indentation of the bevel in my hardwood falls down her forehead on top of the very large black and blue egg. I must say WALKING FEET 17,000 times a day!! Anyhow, I took her to the ped and she is fine. She doesn't and won't look fine for a few days but no head trauma! Thank You Above!!!

Back to the WONDERFUL phone call I got yesterday from Dr. Rahbar's staff.......

I think I chewed Amy's ear off. I was rattling off information non-stop. I am very passionate about Sloane's laryngeal cleft. We spent almost 30 minutes talking about being the parent of a child with a laryngeal cleft and all that comes with it. It was refreshing!! Finally, someone understood some of the things I have struggled with because a LC is so rare. There truly is very limited information out there. 

 I was over the moon that while Amy was researching for Dr. Rahbar she found this blog. I mean I know people are reading us. We have had almost 4,600 hits in 8 months from all over the world. I have had moms from all parts of the US send me emails and share their stories, but I must admit that it was pretty cool that a medical professional found A Sip Of Heaven. Thank God I have written all good things about Dr. Rahbar.... the man, the legend!! LOL  My hubby reeled me in last night, when I was doing somersaults of excitement on the phone with him, that perhaps the good old doc maybe wasnt thrilled that I posted his picture on the blog?? Oh dear, I hope not!!

So Amy is creating an online parental information page on the teeny tiny LC.
HIP HIP HOORAY!! Imagine if I had had that information from the beginning. I may have bypassed the dark and disconnected days 2 years ago. Dr. Rahbar and his staff are interested in our journey or rather Sloane's story. They would like to share it on the page! Go For it!! Amy wanted to know what kinds of information I as a parent of a child with a laryngeal cleft would have found helpful back at the beginning and now. I went on and on but not without "I am sorry for rattling....I just think this is the best idea" Amy also wanted to know if I thought a support group was a good idea??? Do I ever!! Yes, sign me up.

And so we chatted and chatted...and then something validating happened. Amy said that some other parents too thought the feeding tube's presence in a Laryngeal Cleft child's life is one of significance. Other parents, too, had said that the feeding tube was, for lack of a better term, a jedi mind trick!! Thank You...I am not crazy!!! That fucking thing was constant reminder that my child had a medical abnormality. At some point, the feeding tube starts superseding the birth defect and then everything is out of balance. Even yesterday at swallowing therapy when Cara found out that Sloane's mickey button had pulled and she asked me with complete exhilaration what that was like. I couldnt really answer her....I am still processing all that has happened. I am not stuck....I just need more time to work through it all.

I shared a couple of my cooky invention ideas with Amy...to which she didnt think were so cooky. I like to dream up great ideas in all free time  (Post: Mother's Den) and do nothing with them....makes my hubby very happy!! HA!! I am looking forward to Amy calling me again and chatting with her at our next appointment with Dr. Rahbar. She, on the other hand, may wish she never stumbled across this blog and dialed up Sloane's mom because, as per usual, I have A LOT to say.....

Fast Forward

If anyone ever saw how my house looked on the morning we had an appointment in Boston, they would cringe!! This morning was no different, in fact it might have been worse. Our appointment at swallowing therapy was at the perfect time. Not rush hour, not afternoon commute. A perfect mid morning time so I wasnt worried about a morning rush out the door.

Sloane is ALWAYS up by 6:30 so that would give us 2 hours before we needed to leave the house. Now this morning when I opened my eyes at 7:45, I almost shit a brick!! That was one hour to shower & dress, wake, feed & freshen up Sloane and pack all the necessary foods for today's appointment. Not much time at all, but we got it done.... leaving behind a DISASTER! Small piles of mess were scattered around the house everywhere. Sloane and I were like whirlwinds twirling around and as a special treat: Sloane cooked whoopie pies with her Auntie Sue yesterday. She loved it so much that this morning she cooked or rather powerfully stirred her milk and cheerios. "I cuukin" "I cuukin" she was squealing as the milk was dripping off the walls and the cheerios were flying through the air! It was adorable and irritating all in one stir.

To my hubby, as you read this post in some shit-hole hotel or airport, be so happy you weren't home today. The mess we left behind would have made you shudder!! We miss you! xo

Sloane's appointment with Cara went very well! She performed all her tricks. Lots of chewing, swallowing, sipping and chatting. I shared many details about Sloane's progress including her "special treat" of sipping water in its natural form from a water bottle cap. Sloane loves this! It is a special treat that she will take part in for hours if she could. Cara was interested to try it and Sloane was beyond excited. She kept saying "for me?". Sloane proceeded to drink about 1/4 of the bottle in small capfuls without a cough or a gurgle. Cara was thrilled to see this so she decided to up the anti some.

We had been increasing Sloane's liquid intake by a 1/2 ounce every 2 weeks. After today's performance, I will be increasing Sloane's liquid intake by 1 ounce every 2 weeks.  Cara THINKS Sloane can handle a larger increase of liquid more frequently. Mammie was thrilled!! She was just about spitting nickels!! To be sure that I follow the new protocol, Cara typed it up and gave it to me. lol! I asked her not to give it mammie because I was afraid she would make copies and pass them out to all the circle of trust players to ensure my fast forward progress....eek!!

• We did talk about my opinion that Sloane can tolerate thinner liquids in very small sips. It becomes a sticky situation when she takes in big sips or gulps. That is when she aspirates and has trouble processing the swallow. 
• We chatted about a 2nd surgery and why that happens. Some children get stuck at a certain consistency and cant get past it. That is when Dr. Rahbar goes back in surgically to tweak his incision some. 
• We touched upon the scary upcoming cold/flu season. Cara was able to clarify it a bit for me. The thought is that cold/flu season will always be more heightened for Sloane. Because her lungs are compromised from the aspirations, any cold or respiratory illness would be watched carefully. For some children, they thicken up their liquids so there is no chance of aspirations during the entire season. For other children, they sit back and wait for them to get sick and then thicken up the liquids. Other children, simply continue along their thinning out protocol. 
• We talked about what the magic number is in regards to thinning out liquids. I will take Sloane up to 8 ounces of liquid to one packet of Simply Thick and then I will start to wean away the Simply Thick from the liquid. 

It was a really good visit. I am looking forward to our new thinning out schedule and seeing Cara again next month on October 12th to discuss our progress. 

When we got home, the cherry on top of our great day happened. Dr. Rahbar's office called. I immediately assumed that they were calling to change our appointment, but boy was I wrong. They found this blog while researching information for Laryngeal Clefts. Dr. Rahbar and his staff are in the process of creating an informational online site for parents.  They want Sloane's journey to be part of the new web-site they are designing. Chatting with Amy on his staff for 30 minutes today was one of the most exciting things that has happened in my world in the last 2 years!

To be continued...............

Run, Mommy, Run

So I am training for a 5K road race. It is in honor of a dear friend that we lost far to early to lung cancer. His story affected my heart, not only because he was a great guy, but because it was a story I knew all so well. A young, healthy, beautiful non-smoker taken over by lung cancer. My mother, like Steve, was a non-smoker taken away by lung cancer in less than 18 months.  They were also similar in their ages. Steven was 52. I would always say "but he is so young" as I followed the details of his tragic journey. My mom was even younger than him when she passed on. She was 50. I do not think the shock of my mother's age at her death really ever hit me. She was my mother so that was devastating enough. I never really saw her as young as she was because she was mother. By nature, your mother is always older in your thought process than she is in age. The reality, for the general public, must have been the same as I was about my friend Steve. She is only 50. But as we all know, cancer knows no age, color, race or religion. It has no boundaries.

Steve's honorary road race is next month and I have been jogging along. I fit in my exercise whenever I can. There is never a schedule to it although I wish there was. I am working on one now. My hubby and I only live near one of our circle of trust players. The rest of the players all live a distance away that makes impromptu "can you watch Sloane for an hour?" runs not ideal. I do dream some days about what it would be like if we were closer to the majority. Would I be ready for the cover of Fitness magazine?? LOL!! I am pretty sure not!

Training for this 5K should be a piece of cake for me. 3 years ago, my hubby and I would run 10 mile road races. We took up running as a hobby while we were going through our fertility treatments so I had something else to obsess about other than my failing ovaries. Now, it has been 3 years since I was considered a runner but I thought since I have been jogging here and there for months that this training would be easier than it is. It isnt that easy at all!!

What started happening this week may just help my training though. As we are out for our morning walk/runs, Sloane USUALLY chomps away on a snack and yells "hellos" to all the neighbors. This week, however, she has started some coaching of her own. When I slow my run to a walk to catch my breath or just regroup, Sloane turns around in the jogging stroller, looks up at me with her beautiful eyes and says "run, mommy, run" over and over again until I pick up my pace. The shear embarrassment of my neighbors hearing Sloane's "run, mommy, run" echoing through our neighborhood is enough to make me kick up a notch. She is not happy when we are at a walking pace anymore, Sloane only wants to race

What's the Magic Number??

Sloane has swallowing therapy on Thursday. It will be our first appointment since June. We will be meeting with a new SLP so it might not be as productive as it has been in the past. Sloane had built a relationship with Courtney, our old SLP, and would usually perform for her friend. As for Thursday, Sloane did meet Cara, our new SLP, last month during our appointment with Dr. Rahbar but has no prior experience with her.

Sloane is safely drinking 5 1/2 oz. of liquid to one packet of nectar Simply Thick today. The goal of Thursday's appointment on my end will for Sloane to simply drink in front of Cara. I see no signs of aspirations. There are some coughs but in my mommy opinion they are because Sloane is swallowing too much liquid at once. There are times when she could use some management with the amount of liquid she sucks thru the straw in one sip. She can be a piggly wiggly!

On Thursday, I have to chat with Cara about when all the thinning is done. I am not sure of how many ounces of liquid added to the Simply Thick make the liquid natural consistency. What is the point? Is it 8 ounces to one packet or more?? What's the magic number? I am asked that question a lot and I feel foolish to not know the answer.

My hope is that we will see Cara on Thursday for our September appointment and then one more time in mid-October. I would like to have 2 appointments with her before our follow-up with Dr. Rahbar on October 30th. On October 30th, he/we will evaluate her progress and decide if it is time to have a swallow study to get more diagnostic proof of Sloane's swallowing capabilities. That is not as scary to me as the other discussion we may have. It is the one that will revolve around whether or not, Dr. Rahbar will perform surgery on Sloane's cleft for a 2nd time in the near future to help her improve her swallow. That discussion is one that I spend not time thinking about at this point...I can not bare it.

I don't think I mentioned this yet but Dance Class started up again AND, as if that is not fun enough, my niece S is taking it with Sloane. YUMMY.......is all I have to say. My SIL and I laugh for the entire 45 minutes. The girls are a complete comedy show!! Today, the "aunties" and G came to watch. S2 could not contain themselves. It was a freaking screaming, jumping, hand waving, twirling contest!!! Moments like this are once in a lifetime.

That Mom

I realized the other day that I have turned into That Mom....the one I always wondered about.

I am That Mom who can't find the time to return a phone call in due time.        
I am That Mom who has phone calls with a toddler squawking in the background.
I am That Mom who is home all day, yet can't seem to get everything done in time.
I am That Mom whose day revolves someone else's schedule.
I am That Mom who can't keep track of her cell phone because her 2 year old had it last.
I am That Mom who is clueless about her working friends' schedules.
I am That Mom who texts and emails more than talks.
I am That Mom who writes herself reminder notes for things that were everyday occurrences 2 years ago.
I am That Mom who frequently reminds herself about things she has to chat about with her circle of trust people so they know she still can balance it all.
I am That Mom who will rearrange her unnecessary errands to let her toddler have more play time. 
I am That Mom who tries not to bother her working friends too much so they don't get annoyed with her because she doesn't work.
I am That Mom who would love to stay snuggled with her child all day reading books and singing songs. 
I am That Mom whose last thoughts most days are about all the fabulous things her child did that day. 
I am That Mom who loves to tell others how amazing her daughter is. 

I have turned into That Mom. I used to be The Other Girl (post: 2/13/12) and now I am That Mom.  

Bartending

Some days I feel like bartender. Mixing, Shaking, Pouring, and Serving. Sloane is consistently drinking which is AMAZING! There is chocolate milk in the morning, flavored water all day and the occasional treat of juice if we are out to dinner. I think I have a good handle on her cups. Basically, they are everywhere! There is a constant rotation going on in my diaper bag and my refrigerator.

Sloane is happy with one of her cups until she sees a plastic to-go ice coffee cup in my hand. Then its game over. Sloane wants that cup. Thankfully, she has been upgraded to a straw and can safely handle drinking her thickened liquid thru a straw. So the battle isnt one worth fighting.

This morning, her chocolate milk was transferred from her cup to a to-go plastic cup and she sipped away like a big girl as I nursed my iced latte. She was so proud of herself and I was on pins and needles waiting for the cap to go flying and chocolate milk to be long gone. Surprisingly, she flung and swung her cup around like it was a yo-yo and not a drop dripped away!

The cup to cup transfer can go off without a hitch at times. There is always a "I want that" with a finger point and a tone of urgency when Sloane sees my to-go cup. And with a swift move, her drink is poured from her cup to big girl to-go cup.

What doesn't go off without a hitch is when we are out at a restaurant that has kiddie cups. Sloane's eyes become as wide as golf balls and it is down hill from there. She sees the cup and she wants the cup. End of story.

Reasoning with Sloane as to how I have to pour the oz. of the juice we have ordered into her empty sippy cup to mix it with her packet of Simply Thick and then shake it before pouring it into the restaurant kiddie cup is USELESS. I have tried phrases like:
one minute
watch mommy do
turn up your listening ears
1 pour, 2 mix, 3 shake and done with a calm pleasant whisper.

It doesnt matter. The entire time I am doing my impersonation of Tom Cruise in the movie Cocktail, she is:
I want it,
me do,
momma i do,
no, no no with a certain enthusiasm that can be heard 2 tables away. She sees the cup and it is tunnel vision until the cup hits her hands.

The 2 minute process feels like 10. The table is covered with empty glasses and cups, wrappers and usually a spill of JU. The waitstaff usually walks by and extra time to see what is occurring. There are nights when it is a bit of scene. Last night is a perfect example, I had to stand up to do my pouring. The song Kokomo should be playing in the background while these antics are occurring. It would have been so appropriate! To watch Sloane drink her entire cup of juice makes all of my bartending stints feel like the best job in the world!