Push Me Over With A Feather

We are home! All is quiet...thank the heavens above :) Yesterday was a long day that has already been forgotten about on some fronts.

For example, I decided since Sloane wasn't able to eat after midnight, I would give her a treat on the ride up to Children's and unveil with a big surprise the dvd player in our SUV that has been under wraps for almost 2 years. Her eyes were as big as saucers when she saw it and loved watching a flick on the way up....I actually think mammie and titi liked it too! They were sandwiched on the sides of Sloane. But that has already been forgotten about. Sloane never mentioned it when we got in the truck today.  

Sloane also had not mentioned yesterday's events either which is fine by me! I have forgotten about the bag of chocolate covered almonds I ate to make myself feel better and the fact that I sang Sloane's favorite song to her during "mask holding" instead of something random. Not ideal!

Sloane's scopes went smoothly. Now, the results not expected. You could have pushed me over with a feather when Dr. Rahbar said...."There's a couple of things." Internally, I was screaming WHATTTTTTTTTTTTTT!! Externally, I was staring at the great doc with eyes as big as saucers. A couple of things??? Already? And Dr. Palm isn't even here. Weren't you supposed to have one thing and she had another??? I scanned the consult room and seemed that my hubby, poppie, mammie and titi all had the same intent look on their faces. All thinking what I was....I think....although 3 out of the 4 would never admit it. My hubby was on my page!!

Well, we've got....2 for Dr. Rahbar and one for Dr. Palm. Which means folks, we have 3 things going. 3 separate things. Just in time for the 3 Wise Men for Christmas!!!

1. Sloane's cleft needs a 2nd surgery/repair/tweak. Box it up however you want. Sloane's cleft is still to open for Dr. Rahbar's liking and in spite of her amazing progress, she will be having the 2nd repair of it in the Spring of 2014. Out of 150 cases, she will be the 4th that needs a 2nd repair. That is largely due to the fact, that Sloane's cleft was a level 2 almost 3. Pretty big in Cleft Land.

2. Sloane's airway is narrower than the average child of her age. Not a major issue because she will grow out of it, but a problem because once she has her NECESSARY 2nd repair and gets another stitch to close the cleft up...her airway will be even narrower until she grows out of it. A top concern for Dr. Rahbar

3. Her lungs are significantly inflamed. Dr. Palm took some secretions to check out. The thought is that she is mirco aspirating b/c her cleft is still too open and those mirco aspirations are causing the inflammation. We wont' know if that is the case until the results come back. Now, her lungs are as well junky and juicy from the common cold season.

The plan is....Sloane will be put on an oral steroid mist to clear up her lung function for the short term and maybe then the long term. We will see Dr. Palm at the end of January to access our progress and see Dr. Rahbar in February to plan for Sloane's 2nd cleft repair.

Number 2 and number 3 were not shocking...but I will say I was not at all prepared for number 1. I did think in my heart of hearts that we had moved beyond our Laryngeal Cleft because Sloane has progressed so well and has remained relatively healthy.

Today, we spent the day doing nothing! It was like a day from way back when before we rushed out the door to school and work. A pj day. A "let's bake some treats" day. A quiet static free day. A day of processing that our journey continues.......

No More Streaks

I windex-ed some mirrors today. Thats a sign that I am feeling completely out of control. Reorganizing my closet is my daily fix of finding my center. Actually cleaning with a cleaning product is a sign to buckle up...it's going to be a bumy ride! Everything is in its place in our house and I am mentally preparing our overnight bags in my head. I'm thinking I'll leave that shimmer body lotion and platform stilettos at home....lol!!!

We need to arrive at Childrens tomorrow (or today for my daily followers) at 12:30 and Sloane's procedure will begin at 2pm. The morning may be a bit hairy considering that Sloane is only allowed water or apple juice from midnight tonight until tomorrow at 12!!!! Poor Baby! I did start to tell her today that we are going to Dr. Rahbars tomorrow, but I didn't mention the sleepover again yet. Tomorrow morning is my sweet spot for that conversation.

The dinging and pinging of my phone tonight didn't stop. We are very thankful for all our circle of trusters who sent their thoughts for us tomorrow. If anyone of them offered to send me drugs along with their thoughts for my mask holding I would have take them too....ha!! Until tomorrow and the silence that will reside in my head while Sloane is out of my sight...I'm not looking forward to it!! I am eagerly awaiting the results of the scopes and moving past them......

Mask Holding

Should I be concerned that yesterday I dressed Sloane and ran out to pack the car and finish some final details before we headed up to Children's Hospital AND while I was out of her sight...she changed??? Because I am concerned. Apparently, the very casual and cute outfit I picked out for her wasn't what she had in mind!! When I saw her, after what was a matter of 3 or 4 minutes, I looked at her and said "what do you have on?" She looked me straight in the eyes with a certain twinkle and said "I changed my mind." I am concerned!! Is this possible at 3 1/2???

Pre-op yesterday went out without any major issues other than a very long wait and Sloane turning punch drunk. There was a question by all the medical professionals (we saw 3 sets of pp) as to whether or not to prescribe Sloane an oral steroid to open her airways a bit for her scope...but it was decided to wait until Monday to see how they sound.

Sloane knows what is happening. She has connected the dots. Does she understand beyond that there will be a mask that her momma will hold over her face that will smell like bubblegum and after she does the mask she will get a green Popsicle....I don't think so. Now, I told her none of those details. The lovely anesthesiologist, who chatted it up with her girlfriend about her new on sale finds at Karen Millen at Natick Mall, while we sat and waited right in front of her face did. I would like to thank her for giving Sloane all those necessary details yesterday!!! WTF!! It was the only thing she role played on the ride home with mammie and the first thing Sloane reported back to her father when he came home from work. Super Duper!!!

The approach I took yesterday was pointing out a very cute little girl in her adorable pjs watching the ball machine at the entrance of the hospital....saying to Sloane "look, lovebug, that little girl had a sleep-over just like the one you and me are going to have here next week. We are going to wear pjs" My approach was a bit less realistic than the one the anesthesiologist took....hahaha!

I am scheduled a stress free weekend in preparation for the "mask holding" on Monday! I am trying to keep Sloane low key OR maybe it is myself I am worried about.  I have visions of twinkling Christmas lights being adorned on my tree and brewing some hot chocolate with mini marshmallows on Sunday. Until then, it will be full steam ahead with a list of household chores to make me cry!! LOL

So Monday will be here before we all know it! I am very interested on what Dr. Rahbar has to say about Sloane's cleft as well as what Dr. Palm has to say about the aspiration markers. Let's all say a little Hail Mary that Sloane does not get a junkier cough  and does not get a fever as either will change Monday's plans....And as life would have it, what does Sloane report as soon as she gets home from preschool today..."momma,  Lauren has a fever. she was sick today." WTF!!! Lauren couldn't have gotten her fever on Monday. She had to pack in her backpack for today's unveiling???

Double Dipping

I love to double dip!! The times when you kill 2 birds with one stone or get 2 for the price of one!! That's exactly what is going to be happening on Monday. Sloane is double dipping while in the OR. We met with the pulmonary doctor today who was completely on our page. She agreed with all of our thoughts in regards to Sloane's wheeze and will be scoping into Sloane's lungs with Dr. Rahbar on Monday.

Monday is a go! Sloane's juicy cough didn't scare the doctor in regards to putting her under anesthesia.  We are heading back up to Children's on Thursday for pre-op and as long as my love bug doesn't develop a fever before Monday....our double dip scope will be happening.

The Pulmonary doctor was confident that we will have some answers on Monday as to why Miss Wheeze resides in Sloane's airway. I am looking forward to the answer and the plan of attack. I am not looking forward to prepping Sloane for procedure and her hospital overnight. We haven't discussed it with her yet. She is connecting the dots, but we haven't had "the talk" yet. I am just starting to talk myself into it. It's been a long time since we have spent time at the hospital as overnight guests. Sloane was so much younger then that in a way it was easier then what I am envisioning for next week.....

A Pigtail War

Is it possible that I am involved in a pigtail war? Is it possible that my daughter repeatedly tells me that I don't do the pigtails correctly? Is it possible that she has more faith in my husband, who has never even seen a dam pigtail, than her mother who still rocks them on the occasional bad hair day one month short of 41 years old??? YES..... Is the answer to all 3 questions. I am in the midst of a pigtail crisis. Sloane has the most beautiful Annie type curls dripping from her head. They are scrumptious like perfect corkscrews. People stop us everyday to tell her how pretty her hair is. Because of her curly qs and the fact that she basically just got a head of hair in the past year, we haven't exactly adorned her with accessories.

Now, I want to stop here and say I am a girl. I like to look like a girl but I am not the type who fusses. Mascara is all I wear daily, my hair is an upside down dry and go and my jewelry gets changed once in a blue moon. On a crazy day, I'll toss on a bangle bracelet to jingle jangle my way thru the day. Sometimes, I am afraid of sparkle. It scares me at my core!  I admire all the everyday and special occasion glitz and glam. Want to look finished on a daily basis, but I know there is always a hint of something missing in "my look"....LOL

Sloane has bows in all shapes and sizes and headbands that can jazz up any outfit. She hasn't been interested in them and I, because of my own "look", haven't pushed them. Her hair is beautiful without the ornament. It wasn't until she started preschool in September that her need for a hair accessory began. And, so, we started with bows and then headbands. All was going well. There was the occasional...."its not hard enough" statement and "daddy does it better" but we were making out okay I'd say.

That is until this am. Sloane got a haircut on Friday. Not her first, but a significant trim. And what does the glitz and glam Auntie Bec do??? She blows Sloane's hair out straight and gives her pigtails. The 1st time ever!!! Sloane was in love and presented herself at ti-ti's a short time later like a fashion model directing everyone to her pigtails. To which, they all gushed right along with her!!

So this morning was my turn. Sloane was going to get pigtails for school. It was a relaxing morning with no sense of urgency and I am was ready for the mission. After 4 tries, multiple complaints, tantrums and tears...I had failed miserably!! Sloane went to school without pigtails, I felt completely defeated in shock that I couldn't make a pigtail out of 3 inches of hair, and we both were disappointed. It was a pigtail war at its best.

They looked great to me, seemed tight enough and were so dam cute I could have squealed!! Sloane, on the other hand, said they weren't big enough, tight enough and she didn't like them!! Not a mommy and me moment to say the least. No one won the battle....and the war is still on.

Tomorrow, we are heading to Children's to see a pulmonary specialist. We wrote our letter of concerns to Dr. Rahbar about next Monday's scope and all agreed upon seeing a pulmonologist before the scope. Sloane's wheeze is very frequent now and it is accompanied a juicy, junky cough. It is the perfect time to get some input from the respiratory specialists. We are hoping tomorrow either adds them into the scope on Monday...making keeping Sloane under a bit longer and letting them have a look see OR we are hoping tomorrow eliminates them from the case leaving Sloane's wheeze in her airway in Dr. Rahbar's hands. 

I am not clear at t he point which way I think this will go.

• Tomorrow may be a game changer in regards to Monday, December 9th....I know that. 
• The wheeze is here..... I know that.
• Dr. Rahbar and his staff are on the same page with us about the wheeze and the need to bring in pulmonary at this point.....I know that.
• Sloane's cough is significant enough that I am excited for someone to listen to her and the junk in her lungs...... I know that.
• I am concerned that she is not healthy enough with her junky lungs to be put under anesthesia on Monday.... I know that.
• I am plugging forward to get the answers and put this wheeze to bed...... I know that.

I am already worried about tomorrow's pigtail war.....I know that!!!

A Cry Anyone?

Today was one of those days that I could have tried more than once for reasons that were all too small, but seemed ever so big. And then I did cry. Exactly 12 hours after the first moment I wanted to cry, I let the flood gates open.

My guilty pleasure nightly is a log on to people.com, usmagazine.com, and todayshow.com. I like to know what is happening in the real world...lol. A story on the Today Show caught my attention. It was a piece about a dad who chronicled his son's life from a preemie to his homecoming 107 days later thru his first year of life. And so logged on and cried and cried more when I saw that his mom held him for the first time on Sloane's 2nd birthday.

Sloane was not a preemie and certainly didn't have the same medical equipment as Wade Miles, but the sounds of  the NICU room, the sight of oxygen tubes and a NG tube topped off with an IV, the look in Wade's moms eyes, and the visions from the ride in the car to and fro the NICU,  seeing Wade go home with a medical apparatus attached to him brought the tears....

I thought back to when we arrived home from the NICU with our feeding tube and severe case of reflex that left us all sitting upright for months terrified of gastric juices aspirating through Sloane's laryngeal cleft into her lungs...and how I would sit and watch Sloane 24 hours a day petrified that she would stop breathing. My MIL would gently urge me to move from crimson chair and half that I became a fixture in because Sloane's swing that she basically lived in was directly across from it.

I applaud Wade's dad for allowing the world to see the amazing journey of a preemie or a child with medical needs at birth.

Do you need a cry?...here it is all swaddled up in an amazing little boy! Here is the address....

http://vimeo.com/78393869


Thank to Wade's dad......I needed that cry...for 12 hours it was brewing and stewing!!

"It" turns to "Them"

This story has a month long back story that brings us to yesterday in Dr. Reibman's office. The back story isn't as comforting as the exchange Dr. Reibman and I had yesterday, but here it is.

Sloane has had this thing...this bump...this pimple...this never going away red mark on her chin for weeks. I assumed it was a pimple/blemish from her preschool hands and treated it that way for weeks. Last week though, mammie alerted me to all the other options it could be. I listened and filed them in the back of my mind waiting for "it" to disappear. Well the beginning of the week, the "it" grew into a "them" and I decided to call the doc and so off we went....thankfully!! Seeing as though, mammie was right. It wasn't a pimple or a blemish. "It" that turned into "them" is an infection under the skin. The actual name we never diagnosed. We left Dr. Reibman with a topical antibiotic cream and an oral medicine. Super excited to give Sloane oral meds twice a day for 7 days. NOT!!!

While I had Dr. Reibman's face to face, I explained about our decision on December 9th. I had been thinking of calling her to discuss, but never got around to it. Once I went through my spiel, she stated that she 100% agrees with our decision. I aksed "even though we are putting her under again" and she said yes. Followed by something like  "Tarra, I hear the wheeze how. We need to know why at this point. It's in her airway. This isn't an asthma wheeze. Let's get some answers."

I have to say, it felt good to have her stamp of approval. I think we will always 2nd guess ourselves in regards to inflicting pain or discomfort or fears in our children. I have not wrapped my head around Sloane going into the OR that day or the night we will spend in ICU after the procedure. Historically, Sloane has some trouble coming out of anesthesia. Accepting the procedure as a go is one thing. Preparing for it mentally and emotionally is another.

10,000 Sips of Heaven

Thank you sooo much to all our followers!!!

A Sip Of Heaven....... has had over 10,000 views from all over the world! This is super exciting considering I am a one woman show running a very simple mom and pop operation in the Laryngeal Cleft world!!!

The support and interest in our journey is heart-warming!

From Toddler to Beast

Have you ever tried something that you were unsure of, but hoped for the best? That is exactly what I did on Friday. Sloane had extended day at preschool on Friday which means she is not picked up until 2:00pm. Add all the good-byes, chit -chat and the ride home on and we did not arrive in the doors until 2:40.

I watch Sloane carefully for the sleepy cues and it appeared she had probably surpassed them during art class and was on her 2nd wind. I decided to try something I never have to date. I decided to let her rest and not force a nap. It was close to 3pm and a nap at this point might cause Sloane's parents to fall asleep before her. LOL

Feeling confident in my decision, Sloane spent 45 minutes playing quietly on her bed with her babies. I made "the call" during that time to my hubby to forewarn him that there would be no dinner out on the town or Pinkberry tonight. We would be hunkering down for an early night-night because Sloane had no nap today. Instantaneously he responded...WHY??? I explained the situation and suggested it would be a good trail run to see if it was time to be less rigid about the nap. I was keeping committed to my decision.

That commitment lasted until 5:30 when a beast arrived in my house. It was already Halloween the day before so this clearly wasn't a costume...it was my toddler out of control! For the first 30 mins or so, I let it ride. But once 6:30pm showed up, I realized I had made a mistake. Sloane was beside herself with exhaustion and her behavior was a mix of screaming tantrums, open-fisted violence, and quarterback quality throwing. It was horrible and truly, I felt badly for her. Sloane could not get her shit together. She was at her worst constantly for the entire hour and 1/2. I was having trouble remembering my sweet daughter.

Now granted, she was in bed earlier than usual.....hitting the pillow (not the bed) finally at 8:00pm. An overtired child doesn't exactly fall asleep quietly and without a fight. HA! The trade-off of silence in our house at 8, rather than 9:15 wasn't enough for me to think I made the right decision.

Sloane slept thru the night...residing in dreamland for 11 1/2 hours straight. When she woke, I was smacked in the face again with the "you made a mistake" stick. Sloane woke up like a bear...growling and unhappy. Fifteen minutes after her eyes opened, I was longing for nap time again. LOL It has been confirmed. In order for there sunshine and rainbows in our home, there must be nap time. It makes everyone happier! I am very happy right now....cant you feel it...we are one hour into a nap!!! Yahoo!

Tonight, once our lady has hit the hay, we will be composing an email to Dr. Rahbar about December 9th. It is creeping up on us.. We have not changed our minds; Miss Wheeze has been creeping around the past 2 weeks. We have some pointed questions we would like answered before Sloane hits the OR.

Why?? Huh??

So you should see the looks on people's faces when we say that Sloane is having an exploratory looksee of her airway. Words that come to mind are: baffled, confused, judgemental, and concerned.  The decision to allow to Dr. Rahbar to explore Sloane's airway was not made lightly and although, I know it is the right one...that does not mean it doesn't come without guilt and worry. SO I completely understand the looks on our family and friend's faces when we talk about December 9th.

We have put Sloane under anesthesia more times in 3+ years that our entire family combined. It is not something that comes easily, not to mention that this time, Sloane will be completely aware of what is happening. In the years past, Sloane was too young to connect the dots. But considering that she is obsessed with medical things these past few weeks, to say I am nervous is an understatement. Sloane has been asking about hospitals, ambulances, doctors and all that comes with them since Uncle Chucka took a spill over a month ago and landed himself in an ambulance right before her big eyes. Sloane was terrified as well as like a dog on a bone for details....she wouldn't stop or couldn't stop asking about Chucka's boo boo and its progress. Add this new obsession to the fact that her favorite dress-up attire is her doctor's coat and bag, I am thinking our trip to Children's will not be quiet.

Sloane, in regards to her laryngeal cleft, is over it. When she takes and swallows a big sip and we comment on it with "little sips!", she looks us straight in the face with a "I am not coughing, momma, see." And, the truth to told, to all my LC followers out there...there is a light at the end of the sip and swallow tunnel......she isn't coughing. Sloane is managing all liquids in all vessels fantastically about 90% of the time.

This exploratory looksee isn't about her Laryngeal Cleft. It is about her ever so present wheeze. Although we welcome all the information we can gather about Sloane's LC, that isn't the point to this procedure. Dr. Rahbar hasn't been scuba diving into Sloane's airway since her surgery in March of 2011; he has only been fishing.....if you get my drift! I'd like to know what her cleft looks like 2 1/2 years later! Her airway is so much larger considering her surgery was done when she was 9 months old.....so I am thinking Dr. Rahbar will get a bird's eye view this time???

As for the wheeze, who has been showing up around here every few days, I am more than interested what her place of origin is. Does she reside in Sloane's tight vocal cords, her cozy narrow airway, or is she whispering...asthma ever so quietly....up from her lungs?? This is truly why we want this exploratory looksee. Sloane is getting older and her days of running on the soccer field, jolting across the tennis court and tapping her way thru Gold Ship Lollipop are nearing. So, when Miss Wheeze shows up...we want to know why??? And hopeful that December 9th will answer that question.

Settled In...Kind Of

The sleep cycle continues. I have gotten a small handle on it and I am pretty sure most of the moms in my circle of trust are tired of hearing me about such a silly concern. I have exhausted the topic...no pun intended!!! Hahahahaha

When I was a classroom teacher, I would give myself until the Columbus Day holiday to get settled into my new school year. The same rule of thumb rang true for this school year. I had hoped by this weekend that we would all have found our new groove! And I have to say, we are almost there!! Everyone is settling into their new lifestyle changes....I can say I was happy about mine until 12:10pm yesterday!

That is when ti-ti told me, after picking Sloane up from preschool, that she has a bus field trip on Wednesday. Now, lets review a bit. It was Friday when I was first hearing of this, I have Monday off from the college for the long weekend so I cant take Wednesday off as well, and this is Sloane's first bus ride and first field trip. ANNOYED isn't even the most accurate adjective to describe my mood. There is no part of this stay at home mom who wants to miss such a milestone, but there is a rational part of this working mom that says taking the day off for this may not be the best choice for a variety of reasons.

I decide to work through my mood before I saw Sloane, who is super super excited for this trip to the zoo. And I decide to spin this experience into a positive one. After explaining the issue to my hubby, he immediately says "I'll go!" Which is perfect because I know, given the choice Sloane would want her daddy to go with her. So what do I do to make myself feel better...I pull a jedi mind trick out of my bag! I decide to let Sloane pick who she wants to come with her knowing quite well it won't be me and then I won't have to feel like the worst mom because I am working instead of going on Sloane's first field trip. My plan goes exactly as I expected :) I will drag my feet to the college on Wednesday while Sloane and her daddy board the yellow bus bound for the elephant exhibit and to that I say...being a working mom sucks!!!

Now, Sloane had her first preschool friend birthday party this past weekend. I was unsure when the invitation arrived if we would be attending. Not because we had plans, not because the family wasn't super nice, not because Sloane would have had trouble enjoying herself.....but because I didn't want to go. It may be surprising to hear that this mommy blogger can be quite shy and reserved when in a social situation of people she does not know. I, basically, was breaking out in a sweat thinking about being a 3 year old's birthday party with a group of adults I did not know. My hubby and "the machine" confirmed that Sloane had to go so I responded yes on the premise that my hubby would accompany me for social support. LOL!! The Tinkerbell gymnastics party turned out to be super fun all around. We met many nice parents and Sloane loved her first "friend" party. It was clear when I went over to the table to check on Sloane as she ate her lunch that she doesn't (thank god) have trouble being with people she doesn't know...I said "Sloane, is everything ok?" She replied "Yes, momma, go stand over there with daddy." I was in shock!! Is it possible that at 3, my child already doesn't want my helicopter parenting!!

Over in laryngeal cleft world, there is some news. I have been waiting to put this in black and white print because once I do....it becomes real! Sloane's exploratory scope of her airway is scheduled for December 9th. More to come on that topic when I wrap my head around it!

Never Think Never

Something happened  that I never thought would. I uttered words I never though I would. I said these words out loud: It is easier to go to work than to be a stay at home mom! Never did I think I would say that. Never did I believe it when people said it was true. Never could imagine that in one short month I would have figured it out.

Sloane goes to preschool while I go to work 4 days a week. We both have one day off . The same day. Thursdays. Every Thursday since the beginning of the school year has been a struggle. A struggle like we haven't had before. I am going to assume that the difficulty Sloane and I are having...we aren't exactly hitting high notes or getting our groove on.....is because of reasons that aren't comforting to this control freak mom!!!

I know that Sloane is off her sleep schedule.  Something is going on with my child. She is perpetually tired. Grabbing her earlobes, tripping over her feet and listening like batteries in her listening ears have been removed. I thought by now, we would have set into a schedule. One similar to what we are used to....a timely nap followed by an age appropriate bedtime.  That has not not happened yet???? What I have is a nap that starts and ends too late and a prompt bedtime that is followed by a restless falling to sleep period that is almost endless pushing bedtime to a very inappropriate bedtime.  It's become a cycle I can not change which is in turn making me very tired too!!!

There are 2 very different schools of thought on this topic and I can't decide which one I want to swim with. There is the thought that Sloane is overtired and therefore unable to settle into sleep. I
have been a firm supporter of this philosophy for 3 years.  The more a child sleeps, the more they want too.  When Sloane was on a structured sleep schedule, I never had these issues with her not falling asleep for an hour. The 2nd thought is that Sloane is outgrowing her nap. This thought is not music to my ears!!!! I don't want to accept this thought process. I know many people whose children don't sleep after 2 or people whose children don't nap once preschool starts. I'm not ready to let go of the nap. I, clearly, know it is not about me???? I am on a mission to figure out the conundrum of the sleep cycle. It has become my obsession.

By Thursday, I am on fast forward with household errands and activities for Sloane and me. Sloane, on the other hand, is wanting to do exactly what a three year old who has been in school for the past 3 days should want to do......nothing!!! The struggle begins as soon as our day starts and tonight it didn't end until an hour after bedtime. And at one point each Thursday, I think to myself.....it is easier to go to work than stay at home with your child. I never thought I would utter those words. 

After my revelation, I share my new philosophy with my sister in law who is traveling behind me by 9 months exactly. She looks me dead in the face and with a squeal says.....of course, it is. I never thought it was true but now that I head to work 1 day a week I know it is!!!! And with that, we toasted to the stay at home moms we were and the part-time working moms we have become!!! 

In Record Time

Today was one for the record books. After being 30 minutes late for Dr. Rahbar (a potty stop and no parking available), we were still in and out of his office in one hour. A record.

Sloane did very well. She entertained herself, during our very short wait, running around the exam room. Daddy's orders! This am, as we left, he said "Babe, remember let her run around until he gets there." LOL Almost on cue, Dr. Rahbar came in and was greeted by our frequent friend..."Miss Wheeze".  Before I could motion toward Sloane and her friend Miss Wheeze, Dr. Rahbar looked in her direction and he himself listened intently to Sloane who was now resting after her sprints around the room.

We chatted for a few minutes. Sloane was happy to tell him how she didn't share at preschool yesterday and instead asking for a turn, she took all the toys from her friends. SUPER!????!!! Another blog for another day. Once we are done with our "sharing is caring" convo, Dr. Rahbar lets Sloane know that he is going to take a look down her nose. He did a soft bedside scope today which I welcomed. He hasn't taken a look in Sloane's airway in over an year.

Once the doc told Sloane about the scope, it was like she was in a trance controlled by his words. This man has the most wonderful bedside manner!! She did as he asked and even got involved in the scope. I could not have been prouder of her. The truth is though...mammie and I agreed that we would have gladly had that probe sent down our noses too after Dr. Rahbar asked us. There is just something about the way he approaches the situation that makes you want to be part of the team. His team. The please put that foreign object down my nose for a minute of two team......HA!

Sloane's cleft looked good. Miss Wheeze, on the other hand, didn't sound good. Dr. Rahbar handled me with the conversation about him taking a look in Sloane's airway the same way he handled Sloane with the scope. I listened as he clearly discussed why he wants to take a deeper look in her throat.

Sloane, as we knew, was born with tight vocal cords. Her cords do not open as much as they should. It has had no effect on her speech or projection of sound....as anyone who knows her can tell. Chatty Kathy!! Dr. Rahbar mentioned her cords to me as a reason why she frequently wheezes. They may not open enough when she needs more air after bring winded...hence the wheeze. He wants a deep look to see if that is the case OR if Sloane was born with a narrower airway which could also be a reason for Miss Wheeze and Sloane's frequent croup events. Dr. Rahbar does feel that Sloane's wheeze is not a sign of asthma at this point. Miss Wheeze resides in Sloane's throat not in her lungs by the sounds of it.

Having a deeper look will help determine Why? Miss Wheeze pops up every once and a while. What will happen once we have the reason for the wheeze is not clear at this point. Sloane having another anatomical defect in her airway would not be surprising bc her Laryngeal Cleft was so severe. Neither her tight cords or narrower airway concern me at this point...I think if they were major issues, we would know about it by now. Both are not ideal, but neither appears to be life altering.

I signed all the papers for the scope...not  thrilled about Sloane having anesthesia again or staying over night at the hospital........but I agree that having a reason for the wheeze at this point is almost necessary. My hubby is traveling so the date for the scope is on hold until we can discuss our thoughts together and make a plan  but, we did decide that we would get the scope down in record time....well before the start of cold & flu season.

Then and Now

Three years ago at this exact moment, life in our home was the complete opposite that it is right now. Today, September 10th, is the day we took Sloane home from the NICU. She was 10 days shy of 2 months old. Our home was crowded with medical supplies, on high alert, scheduled down to each minute of a day, and a revolving door of our circle of trust. I have blogged about the scene back then many times I wont bore you with the details again.

Tonight, 3 years later....our home has no medical supplies, is relaxed on all accounts and hasn't had a  player in the circle of trust drop by for anything other than a visit. Actually, the only thing I can hear right now is my own munching on carrots and the crickets outside. The hubby is away on a trip so the house is on lock down and silence is welcomed.

Next week at this time, we will have seen Dr. Rahbar and I'll have an update on our LC world. We have all started to gather our thoughts, opinions and questions. Mammie and I are making the trip as she has for all the appointments over the past 3 years. She has clearly earned her place to voice her thoughts and opinions openly. The 3 of us are in agreement that at this point we DO NOT feel as though Sloane needs a 2nd operation or a exploratory look in her airway. She has done well in the last 4 months is the consensus. With only 1 week to go, I almost wince at typing these words. Dr. Rahbar may come to the table with an opinion or an outlook that we haven't considered and that may be a game changer.....

Three years ago, I know for a fact I did not sleep tonight. We did not sleep for weeks after we arrived home with Sloane. The whirl of the feeding tube pump and fear of aspiration kept us up around the clock. Three years later, I know that I am exhausted and will eagerly hit the sheets momentarily with only fears of over sleeping lingering...LOL

Hurry, Hurry, Hurry

Well, we made it thru our first week of school. Both Sloane and I survived! LOL! It is a new adjustment for the whole family; there is a certain sense of hurry, hurry, hurry in the morning now. We had been without that for the majority of the time in our house over the last 3 years.

I am working on accepting the loss of control I have now. I had to hand over my keys to nonni so she could pick Sloane up from school today. I am a mom who likes to be in the thick of things so that is going to be a hard one for me every Friday. I, also, have to talk myself off the cliff a bit because Sloane didn't exactly drink as much as I would have wanted her to all week at school. I am so used to pushing Sloane to drink and monitoring her liquid intake that leaving it up to her is hard. I have been told that some children do not drink regularly...which I am sure is true, but Sloane never had this option. Since the moment we she was allowed to take liquids in her mouth, I have been shoving a straw in there with gentle as well as pointed reminders for her to drink. On Monday, I am going to chat with Sloane's teachers about what I think the drinking schedule in preschool should be.....LOL

Sloane seems to like it. She has some stories that we are trying to sort thru and find truth in....LOL The imagination, at 3, is nuts!! Add that to the drama queen I am raising and some stuff is head shaking!!

Over in Laryngeal Cleft land, we have 11 days to go before we see Dr. Rahbar. I'm kind of getting excited as Sloane is still healthy...shhhhh don't jinx me!! My hubby suggested that we run Sloane around the office before we see the good doctor to make her wheeze some. The wheeze still pops up frequently. A very good suggestion in my opinion. Mammie and I are thinking of making Sloane do sprints around the waiting room...The wheeze, the progress and the big picture of our LC world are on the table for discussion.

3 years ago this week, we were gearing up to come home from the NICU with no idea what lay ahead of us in regards to Sloane's laryngeal cleft. There was never a sense of hurry, hurry, hurry in our home. It was slow and steady to see progress and with that we did!!!!!!!!!!!!

One Day Down

Sloane enjoyed her first day of preschool. There didn't seem to be any issues other than she told me that she wasnt going back tomorrow because the teachers hit her????? I have no idea what that is about but she going back tomorrow!!! Lol

We basically had a photo shoot this morning. I took a ton of pictures and sent them out to everyone I could! Ti-ti came before her Tiger Woods performance to see Sloane off and take some of her own pictures.  She was not without tears whe we left Sloane at school. I did not cry like a baby today but I did get teary as well as reflective. Shocking...I know!!!! Sloane walked in to school without any hesitation and as I left said "bye, bye" to me. Basically, she confirmed what I have been yapping about...Sloane was ready to fly the coup. It was nice to leave her today without having an obligation. Made it much more stress-free. Tomorrow may be a different story.

I packed Sloane the lunch of champions and she ate it ALL. She told me that she told her teacher "my belly says I'm hungry, can we have lunch?" So now, I have something to hold on to....Sloane has my appetite. :) in addition to my personality. Ha!

I did head to the college today to get the lay of the land. It helped me relax and also made a nervous nelly. Tomorrow, I'm spreading my wings. Hope it goes as well as it did for Sloane today. One thing is for sure, I don't think I'll be coming saying my teachers hit me!!!

Spread Your WIngs

Tomorrow is Sloane's first day at preschool! We are very excited here! I will say that I am a bit in shock that Sloane is old enough to go to preschool. The changes and growth that have happened in the last year is almost unbelievable.

We had Open House last week got to get our feet wet a bit with the idea of school. It was went off without a hitch, although I will honestly say that Sloane was bossy while she was there!! I know that the teachers are equip to tweak that some , but it still concerned me. It didn't help that poppie told her today to be sure that she lets the teachers know that... she is in charge!!! I screamed Dad!! across the room at him but it was too late Sloane was sing songing...I'm in charge all over the living room within 10 seconds. Tonight before bed I reminded her that the teacher is in charge in hopes that I would erase her grandfather's advice! LOL

I had written all over the in-take forms that Sloane had a laryngeal cleft and described it in all the lay-man terms I could so it seemed perfectly acceptable to ask the director if all Sloane's teachers had read about her LC on the forms. She said they hadn't yet but would be over the weekend. Not what I was hoping for...I wished they had read them, researched a LC and well versed themselves in what aspiration looks like.... :) Tomorrow i'll be happy to ask to give the 2 of them a quiz!! Just joking.

This is a nuts statement, but here it goes.....I am kind of worried about packing Sloane's lunch tomorrow. This, for some reason, is a bigger deal to me than sending her to school. I am sure it has something to do with the fact that I have controlled all of Sloane's eating habits for 3 years and do not want to relinquish that!! I am not even sure what you put in the lunch bag.....

In my world, I have been stuck in syllabus hell for over a week now. I can not believe how hard it is to write one! In the elementary land, we write daily lesson plans and objectives. Never once can I recalling laying out an entire semester on paper. I made some excellent progress and thought it looked good until my hubby killed the dream and had me tweak it so it was more professional!! Apparently, my font choice was more 4th grade-ish than college like.

I teach my first class as a professor....LMAO....on Wednesday. It should be interesting!! While Sloane heads to preschool tomorrow, I am heading to the college to get a lay of the land. I used to make fun of older people who would do a trail run of a drive to a new location or acquaint themselves with a building before a meeting. Well, it seems, I am an older person. I am walking the halls tomorrow to find my classroom for Wednesday morning. I want to be prepared!!!

Now, I know you are all wondering if I am going to cry tomorrow when I drop Sloane off at her first day of preschool. I am sure I will.  I have been emotional all day and not for the reason you all are thinking. We went food shopping today and while I pushed Sloane around in a carriage, I saw a sight that broke my heart. A mom looking just like me letting her 2 year old in complete tutu and ballet shoe attire push her carriage. It was precious and heart breaking as the little girl had cancer. I wanted to cry at the sight but instead my daughter reminded me about life.....she said "momma, look at the little girl. she is strong pushing the carriage in her tutu." And I thought.....Yes, Sloane she is strong.

Tomorrow, there will be tears of happiness. I spent years wondering if Sloane would go to school with a feeding tube or unable to drink like her peers.
I will cry tomorrow:
because Sloane 's feeding tube is long gone,
because her sippy cup is filled with liquid in its natural form,
because my daughter has overcame the thick of her laryngeal cleft,
because Sloane will be as normal as the other children she is playing with,
because my child is spreading her wings...........

Just Call Me Charlie

There is a point during summer that I am ready for it to be over. It's the teacher in me.  I begin to transition into back to school days. Even though, I have been out of the Back To School Days groove for 3 years it never stops.  I have noticed the change over starting to happen this week.

Sloane woke up Sunday  from her nap without a noticeable temp. We both began to believe that her fever just a symptom of a summer virus. She spent the past few days catching up on sleep. I have been told, by a very reliable source, that sleep while a child has a fever isn't the type of sleep that allows them to wake up rested. This appeared totally true this week. Sloane has been exhausted, in spite of having slept all 3 days while she had the fever very well.

As of today, we are back on track to see Dr. Rahbar on September 17th with all status quo things to report. I wonder what this means. Is our Laryngeal Cleft journey ending?????

This week you could just call me Charlie. Not because Sloane has been watching Good Luck Charlie nonstop since be exposed to it during her down and out weekend. Not because my dad is a man named Charlie. Not because I've been munching on StarKist like Charlie the tuna.

 Call me Charlie because Im going to the Chocolate Factory!!!!! Yes, folks, I got my Golden Ticket on Monday!!!! In one week's time, I had my first job interview in 20 years, resigned with a bittersweet heart from a profession and school district that I adored after 20 years, and landed a position to teach in a way I never thought I could.

Sloane's mom is now teaching at a local college!! I am completely nervous, yet over the moon with excitement. It was time for a change and with the help of friend, who has watched my 40 year journey, I am starting a new chapter in my life. This opportunity is one that fits into our family perfectly. 

Sloane and I both have our first days at a new school on September 4th. It seems there are now 2 of us in our house who need to be Big Girls and play nice with others at school. 

Hunkered Down

Sloane is sick. I am not sure of the exact time on Friday, but at one point within 5 minutes of each other, both my hubby and I said the words: Sloane feels warm. And that is how it begins folks!

Neither of us were overly concerned because tis' the season for summer viruses. I did have to laugh because the 102* fever showed up 2 hours before my first job interview in 20 years!! It was a quick dose of reality as to what happens when a mom works. I gave my hubby all the instructions and numbers needed to handle this unexpected medical pop-up while I pounded the pavement looking for a job! LMAO

Sloane's fever welcomed in its buddy of vomit by 7pm and we hunkered down for a quiet few days. By Saturday am, there was a trip to see Dr. Reibman. Its looking like a summer virus....was what she said. The diagnosis was a welcomed one, but I have to say the doom and gloom part of me wasn't convinced by Saturday night. Thoughts of pnuemonia came creeping into my head!! And from there, I jumped to a 2nd surgery. And then I just shut down.

Doom and gloom thought Sloane was breathing too fast and as soon as she said the words, my hubby said he thought the same thing. And so what does this mom do??? I took Sloane's pulse, counted the number of breathes she had in a minute, took a video of her breathing and sent it to all my go-to mommies at 11pm. Nuts I know!!!

It is Sunday afternoon now and Sloane is less miserable! Her fever has gone down. Miss Doom and Gloom is not rearing her head again unless Sloane is sicker tomorrow.

The one good thing about being hunkered down is that I am getting lots done around our house that gets neglected all summer. In the summer, we are a family of movers and shakers. Never really home! Small things, like organization and decorating gets put on the back burner. This weekend, I was able to do my favorite thing and my hubby least favorite. Move stuff around. LOL I love to move one piece of furniture from one place to another. Look at it for an hour and try it somewhere else. Actually, I love to move whole rooms around but my hubby nipped that in the bud as soon as I moved in with him.

This morning, I spent a few minutes straightening out our mud area cubby. And what did I do??? I hung up Miss Sloane's backpack and lunch bag. Sloane is going to school. For the next 15 years, a backpack will be hanging on this hook. That is unbelievable to me. Sloane is going to school. I hunkered her down as much as I could these past 3 years, but my daughter is ready to spread her wings.

Preferences

The Golden Ticket

At some point in the last week, Sloane has decided that she no longer needs a sippy cup and is ready to drink from an open vessel. We had been exposing her to open cups with gentle reminders of small sips. Sometimes, it goes well and other times there is a gasp with a quiet wide eyed moment until she coughs thru the next breath. Always, it is a volume issue. Too much liquid, too fast.

Lately, though, after Sloane has wandered off with her sippy cup, she pulls a 007 move! Sloane has been twisting the straw tops off her sippy cups when out of sight and drinking straight from the cup. My child is tricky. Always has been and always will be.

Monday, while we were driving in the car Sloane decided to turn her take small sips from a toddler cup into a toss your head back take a swig contest from an open jug.  As all parents, I know that when Sloane isn't singing, talking or playing with a noisy toy something is up. Quiet, when you have a three year old, usually means trouble is brewing. So as we were driving along the highway, I noticed it ...silence!! It takes a minute or two to register and then I casually put down my visor mirror (otherwise known as mommy has eyes behind her head) and I see it........or rather hear it.

Sloane unscrewed the cover to her sippy cup and was chugging her water with her head tilted back. And then it comes.....water bubbling out of all the likely places. Her nose, her mouth and dripping off her chin. The coughs start, the eyes water and gasp for a breath follows.

Sloane drinking from an open vessel is acceptable when she has an adult with her to manage her sips, it is acceptable when she is upright in the proper position and it is acceptable when she is bright eyed and bushy tailed. None of these were the case as we drove home from another overnighter at the beach house.

I grabbed the cup out of her hands with a big fat No Thank You!!! Waited for her to process all the water that had been injected in all the wrong areas and then spent a few minutes explaining why we don't do take the top off our sippy cup. All while driving down 95. Sloane's response was "But, momma, I'm a big girl."

Sloane may be a big girl. I, on the other hand, am like a child waiting for Christmas to come. I have been waiting for a certain job opportunity to call. Each time, my phone rings with an in recognizable number, I think..this is it....the golden ticket! But it's not. Sloane maybe a big girl. Her momma may just starting throwing a tantrum like a baby as the days tick away towards the school year.

Easy Peasy

My hubby and I were married 5 years last week. Marriage is like 2nd grade math. Milestones are based on increments of 5. Celebrating 5 years is a big deal. I believe the word I used and my hubby chuckled at was symbolic. LOL. We, unlike other couples around us, have celebrated our anniversary in a way that makes every other one seem dreamy. On our 2nd anniversary August 3rd, Sloane was in the NICU at day 14 of life receiving her diagnosis of a Laryngeal Cleft. It was a very dark time so any other kind of symbolic celebration in honor of our marriage is fine by me.

My gift from my hubby is a family trip. I had thought a bit ago that he might be scheming something and he was. As he said it Saturday night, "he is taking his 3 favorite girls away." That would be me, Sloane and "the machine", our babysitter. Nanna aka Lana is coming with us. I welcome the extra set of hands. I think it will give us time as a couple on our vacation. I am very excited to take Sloane on a plane. I know we would have done it already if it wasn't for our obsession with the feeding tube and germs.

Where are we going? No idea. I am seeing beach, water sports, and some relaxation. What do I know? I know that my daughter needs a passport. Now, this would be an easy peasy kind of errand you would think? Except for the fact that I had no idea where Sloane's birth certificate is???

I started thinking...did we get one? Where did I put it? I started looking in all the likely places. The baby book, the baby important paper file box, the safe.  I come across piles and piles of medical paperwork that I can not even bare to look at. Discharge medical summaries, Early Intervention weekly goal sheets, followup instructions from ENTs, swallow study result summaries, and medical supply packing slips. I am not sure what bothered me more. Seeing the pile of those papers or not seeing a birth certificate?...

And then I started to panic. I had no recollection at all. Now, when Sloane was born it was not a peaceful time and the months that followed her homecoming were bogged down by paperwork, doctors appointments, and insurance issues so this document could be anywhere???

I decided to call my sister in law. She would surely remember since my niece is 9 months younger and her homecoming was far more peaceful. It seemed that as soon as I asked the question, I stumped her. Hmmmmmm, she said. I don't know. We must have it. And then as we chatted, she started looking in all her most likely places turning up nothing. We chatted about trying to recall the birth certificate process and nothing...we were both completely blank. She ends the convo telling me she is going to call my brother stating that he remembers things like this better than she does. So, I decide to call my hubby. He, too, like me has no idea. Which is a good thing in my opinion.

I, then, think this is a question for my go-to mommy. She has 3 kids. She must know where you get one of these ever so important documents. I am comforted by her answer. No, I do not have it. No, i did not misplace it. No, i have not blocked out receiving it. I need to head to City Hall to apply for it. Easy peasy!!! And we now have a birth certificate for our daughter 3 years later. On to filing for a passport.....

Today, I decided that if  writing a cover letter for a job prospect was as easy peasy like writing a blog post than I would be a happier person.

Today, Sloane decided to add freakin' to her daily vocabulary. I heard "why is this freakin iPad not working?" and "look at this freakin toy, it is broken." If  Sloane would magically forget the word freakin' I would be a happier person. 

As a side note, we have no idea where she picked it up. My hubby and I use the bigdog f word if we are going to. Freakin isn't part of my daily chatter. Sloane could have picked up some not so nice words from us by now. Easy peasy....but not this one!!!! 

Crunch Time

I am the type of person who gets quiet on all fronts when something is bothering me. The quiet falls at my mouth not at my brain. Unfortunately, when my lips aren't flapping, it usually means a bit further up my wheels are spinning.

It's all quiet here in our home on my end. Sloane continues to need to wear her "Talking 24/7" tee shirt. I need a shirt that says "Shhhhh...in deep thought." The thing is that it is crunch time. Crunch time for back to school....back to work....back to reality....back to hustle and bustle....back to bringing home the bacon...and in my case back to the bathroom because my nerves have hit me below the belt!! Basically, the school year starts in 3 freakin weeks!!!

Sloane is ready. She  is enrolled and has the gear. Sweet Peas preschool will be graced by her presence 3 days a week starting on September 5th. I know our circle of trust thinks I am going to lose my shit when we drop her off the first day! We shall see! I do know one thing, no 3 year old has been more ready to hit preschool than my cherub!!! Sloane asks every day when she can go to school and then reminds me that she can't be late.

I am not ready. I have spent the last week tweaking my resume, writing cover letters and applying for jobs in a way I never thought I would. I have a job, folks! My classroom opens the last week of August. Whether or not, my name will be on the door remains to be seen. It's crunch time! I'm trying to explore all my options.  I want to spice up my professional life some. Spending time vacillating between feeling as if  I can renter the job force with flying colors and then feeling more vulnerable professionally than I ever have. Being away from a profession that identified me for almost half of my life has taken its toll. 

My hubby, as we discussed my job opportunities tonight, made a statement that shook all 4 walls. He said " I like that one (position) best because it has the least time disruption to our home life." You could have knocked me over with a feather. I used a bit of a Jedi Mind Trick on him....using his own lingo back at him. I said "So if I am hearing you correctly, you would prefer for me to work the least amount of time I can?" And so the man says...."yes". And with that, the wheels started spinning.

Are You Looking For Walmart?

Sometimes my brother sends me these emails with hilarious pictures of people at Walmart clothed in a way that is absurd. The pictures are almost unbelievable. When I look at them I think seriously people go,out this way. Today as I walked into Texas Roadhouse to get to-go and I hoped no one had a camera......

Our day was a lovely one. As a matter of fact, we have had a great week so far. This morning we started our day with a visit to Dr. Reibman, our ped, for Sloane's 3 year old visit. I had no real concerns other than that I can't keep up with the amount of food Sloane is eating these days. I do not know where she puts it.  For example, breakfast today was: a pancake, an egg covered in cheese, a yogurt stick, a handful of blueberries with some almonds to top it off! Sloane eats more than I do many days.

Our check in visit went well. There were no red flags.....im sure this is the way most check in/ well visits are for many children. We, on the other hand, have always had laryngeal cleft issues at all visits so today was quiet different for me in a wonderful way.

Sloane gained 5 1/2 lbs this year and grew almost 5 inches. The inches are in the legs!! It is ridiculous. In this house we say that our daughter keeps getting blonder and her legs keep getting longer.....2 things that aren't going to help at the marina in years to come!! Lol I didn't really have to go today with Sloane to see Dr Reibman. She handled it herself. Seriously! Answered all the questions and even elaborated on the whys at times. Proud was the word for how I felt today listening to her chat with her ped.

As soon as we hit the road with our "good job" lollipops in hand, we headed to the sandy beach. In this family, we either say we are going to the beach or the sandy beach. The beach is our family summer home and the sandy beach is in fact the sandy beach.  Sloane and I spent the day jumping some waves and building some castles. This is the part that makes the day ever so lovely.....we take a very short drive to the beach house from the sandy beach. We clean up. One of us naps and the other reads, relaxes and rejunevates on a very comfy lounge chair. This post is surely not making my hubby smile with glee....lol

Today we decided to stay for Mammie and  Poppie's arrival home. Sloane wandered around dipping into the pool waiting for the minutes to pass until her entertainment arrived in the form of 2 grown ups!! Once all the play was over thanks to mom, a tubby had happened, and every snack Mammie could offer had been grazed on, we headed home. My hubby, who is still recuperating but on the upswing....thank you GOD, was awaiting our arrival. He had told me many of times to stay at the beach, Sloane had begged many times to stay at the beach, Mammie and Poppie had reminded me many times tonight that I could stay at the beach but I wanted to come home. I offered to pick up supper on my way. It was the least I could do seeing as though I didn't cook it...lol

I pull into Texas Roadhouse looking for curbside pickup....it's no where to be found! I want to cry. Why? Well, let's just say I could have been photographed and put on one of those Walmart emails. I had given Sloane a tubby. She looked squeaky clean, smelled ever so fresh and was dressed in frilly summer get up. I, on the other hand, was a freakin mess. Bathing suit still on under a stained coverup. Hair sandy and thrown in a ponytail and I'm pretty sure I still had sand layered on my calves. It was 7pm and truly was these was no reason for me to be this a mess. I was a white trash scene that was going to have to walk into...yes inside....Texas Roadhouse during the very busy dinner time rush. I threw Sloane on my hip and hoped for the best.

All I could think was no flash photography...please!

Half Way There

Can it be?? Is Sloane really 3??? Our family celebrated Sloane's 3rd birthday this past weekend with a Fresh Beat Band party complete with a concert preformed by my little rockstar. Saturday, July 20th, was her actual birthday so I spent the 48 hours surrounding that day thinking back to life 3 years ago. It has been truly a fantastic journey that has helped all three of us grow as a family. I cant help but reflect on where we have been and how much more relaxed we have become in our Laryngeal Cleft world.

We have been on the go for the past month with nothing more than normal summer activities. My apologies for my disappearing act. I am always bothered by the blogs that just stop with no for warning and I do not want to be one of them. I was surprised to see that over the past month we gained a significant amount of readers from over seas!! Very exciting. I did stop to wonder if a Laryngeal Cleft is becoming less rare based on the searches that followers are doing to end up at A Sip Of Heaven.

I cant believe it is mid-July. Now, most people say...... only 6 weeks until summer is over. I say "we have made it half way thru the summer without any illness" and then there is a big knock on wood!! Our appointment with Dr. Rahbar is September 17th. If Sloane stays healthy until then, surgery is not a definite. It is optional based on our thoughts about her progress and her swallowing experiences over the summer.

Sloane has been having more experiences drinking from an open cup and I have to say she is doing a very good job. It, of course, is supervised as it would be with any 3 year old. She has even started to put straws in bottles and manage the drinking process herself. There have been moments of aspiration. That is clear, but in my heart or hearts I truly believe it is a volume control issue. Sloane takes too big of a gulp and then can not process the swallow efficiently. I am sure this is a laryngeal cleft issue and a normal toddler concern.

My hubby gives Sloane the royal privlege of spitting out her gulp if it is too big. She adores this new rule. Too much if you ask me!! So I have in classic helicopter mom started monitoring the size of the sip to see if it "spit it out" worthy. LOL

I am blogging today from an unlikely spot. Usually its from my couch after the lights have been turned off. Today, though, it's from the surgical waiting room at Mass Eye and Ear. My hubby is having, yet, another surgery later today. We are on the once a year schedule....lol! Now, this procedure is not life threatening, but nevertheless it is surgery and not ideal. When we arrived today, I saw a child with what appeared to be a considerable eye issue and at that moment I thought......Sloane's eyes.....God Bless them! A laryngeal cleft is one thing but eyes are a whole other bag of chips.

One Child Who....

Bible Camp made me a new woman! It's a fact. My therapist, who I have been seeing for ove 10 years, said she couldnt remember seeing me so light hearted and relaxed at our appointment yesterday. Bible Camp was the 2nd best idea my mil has ever had. This blog being the best one yet.

I do feel a bit guilty admitting publicly that I adored having some time to myself without worrying about getting back in a timely fashion. 3 1/2 hours was a long time for me to have to myself everyday. In an average week, I have 3 1/2 hours to myself weekly. It was clear by the end of the week that I am finally ready to let Sloane out of sight to have time with her peers. 

Now, we all know that Sloane has been ready to let me out of her sight for a while, but I have been holding on tight. She made it clear this week.  Sloane loved Bible Camp and even made it through 10 minutes of yesterday's recital.  I had told a mom I met on Thursday that I wasnt going to keep her there for the recital because she gets punch drunk by 12:30 and 12:30 was recital time.  The mom said "oh no, let her stay. Every year there is one child who steals the show." My response was "oh, but I don't want my child to be that child. Staying for the recital would be a struggle since her night, night was calling her."

Once Friday came, the excitement got the best of me and I decided to give the recital a shot. Sloane stood on stage with all the other preschoolers doing her thing ( Sloane loves a good stage) until she saw Shu. And that's when it happened.  Sloane became the one child that everyone remembers from the Bible Camp recital. 

Let me set the scene. Sloane sees Shu and while the religious education director is addressing the entire auditorium over a microphone and Sloane screams SHU....SHU....There's SHU. And the congregation burst out laughing.

After Sloane woke up from her night, night on Friday afternoon, the first thing she said to me was "momma, what are going to do for camp next?" lol

Bible Camp Rocks

Half way there people! 2 days down and 2 more to go! Today was a bit more enjoyable for this mom. Lol! I went to the gym freely and then sat by the pool with a trashy magazine for 2 hours! Amazing! Bible Camp Rocks! Hahahaha

I was worried because nonni was not going to be at the church today, but all went off without a hitch it sounded like. Sloane's buddy did say that she had a hard time following directions today. My initial thought on that is that Sloane is 3 and following directions isn't her speciality especially close to nap time.  Hence, the scene I walked in on today at 12:30....the entire group of maybe 50 kids singing with hand motions through a new song while my child was twirling around and bopping. Lol

When I said yesterday that it takes a village, I meant it. This morning at drop-off, I saw Shu standing in the parking lot.  Shu is Lou, my mil's significant other, that Sloane adores! I had to laugh because I knew deep down inside that my mil sent him to help me with the drop off because she wouldn't be there. LOL. All went well. Sloane held Shu's hand and her lunch bag as she walked into her preschool classroom.

I spent the next 3 1/2 hours in a way, I never have! The gym backed up with a few hours of relaxation on a lounge chair. This protocol has not happened in 4 years. It was dreamy! Yesterday, I did errands during my free time. That is pretty standard for me when someone is babysitting for me. Footloose and fancy free errands. Today, was different. Today was what I wish for somedays. A workout at the gym and some relaxation time in the sun!!!! Bible Camp Rocks!

Sloane's story when I picked her up was the same. She had fun, but she missed me. Sloane was punch drunk again. Bible Camp makes her T I R E D. Normally, Sloane sleeps about 2 hours a day.
Yesterday and today, my little lady slept 3 hours and woke up yawning. My party animal is rocking out at Bible Camp! 

I missed you......

Well, we both survived! I have to say that when I first walked into the preschool room for Glory Days, I almost walked out. It was a bit chaotic and there wasn't an adult to be seen. I tried to relax knowing that my mil would be in the vicinity of Sloane all day. Once I got my bearings, I told my story to anyone that would listen. It went basically like this: I am Sloane's mom. This is the first time I have ever left her. I am nervous about leaving here right now, who is in charge of watching her?

The answer I got wasn't exactly what I was prepared for. Up walked a 12 year old who was going to be Sloane's buddy. Immediately, I thought, where is the adult buddy for the 12 year old. And the answer I got was a bit better, but not exactly what I was hoping for again. Up walked a 15 year old to watch the 12 year old and my almost 3 year old. Truly, I was looking for an adult? Where was the adult that was going to treat my child like her own??? I began to sweat a bit but tried to relax. All the while, Sloane is happily sitting on the floor coloring occasionally looking up to see me. Once I located the adult dressed in full costume, I was relieved and nervous at the same time. The costume didn't bother me. I am girl and a teacher who appreciates a good dress up every once in a while. It was the fact that my child was part of a such a large group and I wasn't in control that was making my hands clammy. I told this woman my story and she put me at ease. I was just getting settled spying on Sloane from the corner of the room, when I heard my mil's voice! Yikes! I knew she wasn't checking on Sloane but checking on Me!

Her eyes caught mine and she nodded me out the door. I thought about leaving, but instead I sat myself in the church's kitchenette to chat my story up with our priest. LOL. Father Ricard, bless his soul, listened intently and told me all my concerns were valid. And then off I went....not without looking in on Sloane's classroom again! I walked outside talking to myself a bit louder than necessary when a mom I have never seen before said "it'll be ok, enjoy your day, in ten minutes you will be fine." and I was!

My mil sent me hourly updates which made me feel so much better. My bathroom obsession went well because nonni took Sloane! Tomorrow will be a bit more tricky as nonni decided to take the day off.

When I picked up Sloane at 12:30, she was punch drunk. It was hysterical! She was tripping over herself. The helpers all said she was well behaved. I'll try to believe them! LOL.  They also said that she said a few times....."i miss my mommy". Melts my heart! When we got in the car, she told me "I had fun, but I missed you. Where did you go?" LOVE!!!!!!!!!

I did find out when they were singing the song "We are Special", Sloane was singing......

Sloane and Nick sitting in a tree,
K I S S I N G
First comes love
Then comes marriage
Then comes Sloane with a baby carriage

How's that for wholesome Bible Camp parenting!!!! LOL I can't take the credit, one of the aunties taught Sloane her new song. It takes a village!

It Sounded Fun

Tomorrow is the day! Sloane and I are officially separating for 3 1/2 hours for the first time in a "school" type way! Yikes! Sloane is going to Bible Camp for the week! Lol. Not really, bible camp, but it is camp at our church that teaches about the bible. More appropriately named Glory Days.

Now, I agreed to this months ago. Nonni runs the office of our church so she proposed the idea to me. It sounded fun. Sloane goes to our church for 4 mornings to be part of a singing and dancing type experience. It sounded fun. Sloane and I would have a trail run of being apart before she goes to preschool in September. It sounded fun. I would have 3 1/2 hours to myself for 4 days to myself....visions of the gym, effortless trips to the fabric store, and quiet hours on a lounge chair working on my tan lines danced in my head. It sounded fun....right up until tonight. The night before I have to drop by baby off into the care of people I do not know. Right now, bible camp doesn't sound  fun at all. LOL

I have grilled nonni a variety of times on the schedule of each day, who are the teachers and volunteers running the program, where Sloane will be in terms of location and the most important detail for me.....who will help Sloane use the potty? This one is torturing me at night. I'm obsessed with it. Sloane is potty trained, but we have a whole procedure in a public bathroom. To help relax some, I've drilled into Sloane that when she needs to the potty, she needs to ask her teacher to bring her to nonni. And I've convinced my mil in all my craziness to check on Sloane more than necessary!! LOL

I am not worried about tomorrow but I am consumed with leaving Sloane. It is 3 1/2 hours...that it a long time for my daughter. I am consumed with if her behavior will be ok, if she will be able to last to 12:30 or if she will get tired because naptime is around the corner, and if she will want nonni more than staying with the Glory Days group.

Bible Camp sounded fun right up until the moment that leaving Sloane for 3 1/2 hours tomorrow started consuming me.

A Little Cup

So what the hell have we been doing for 2 weeks? I'm sad to say not much. It's been daily life here. Nothing too exciting which is the good news I guess!! Lol Sloane is getting bigger and sadder everyday. Ive been spending my nights finishing up the story of Sloane's journey and  reasearching options for her 3rd birthday party next month....YIKES  i can not believe that my child is 3!!! And let me just say.....I do not like 3.  Two was much easier than 3 and 3 hasn't even started yet!!!!!!!!!

So of course, it'll be a music themed birthday party. Sloane is into music! We are having a Fresh Beats birthday party. Sloane loves the Beats and many days she thinks she is an actual Fresh Beat. Ive blogged before about the concerts held in our living room complete with an audience of stuffed animals and full costumes. It is nuts!!!

I did consider a Taylor Swift party seeing as though she is still riding shotgun in my car, but the idea seemed a bit too mature. Sloane already thinks she is a teenage drama queen, Im thinking I shouldn't encourage it. I am thrilled to say we have added 2 more songs to the constant Taylor Swift trio...Sloane is now learning the words to Stay, Stay, Stay and Holy Ground. I'm enjoying the variety to be completely honest. Lol 

On Wednesday, I brought the registration papers to Sloane's soon to be preschool this week. As per usual, I was dragging my feet. It's there now with a fat non refundable deposit so there is no pulling out for this family. I'll need the next 84 days to prepare for Sloane flying the coop! Is it possible to have empty nest syndrome when your toddler leaves you for 3 hours 3 times a week???

Now, there has been a development in laryngeal cleft world. I've been organizing for a yard sale and came across a pack of plastic Dixie cups.  Sloane was in awe of the tiny cups. Loved playing with them, stacking them, pouring water from one to the other. Then she realized she could actually drink from one!!! Oh my!! Sloane does not drink independently drink fom an open glass. With her age and her LC, it isn't ideal to give her a cup and let her go so it doesn't happen often at all. This little Dixie cup gave Sloane just the right amount of independence. She sat like an angel and drank 4 or 5 cups fulls of water over the next 20 minutes and has continued to do so for the last week. It goes something like this: "momma, I have some juice in that little cup." There hasn't been a cough or a choke with all sips. I am loving seeing Sloane drink independently and she is over the moon.  Theses little Dixie cups have become a constant in our daily routine. I think they are a great stepping stone towards a big girl cup!!! 

Only in Rhode Island

I fell asleep last night before blogging. Sloane and I had a very busy day together and separately. I was spent. As was Sloane, because at girl's dinner with the aunties she said to the waitress as she held the small beverage menu open "excuse me, can I have a red wine?"  No, I am not joking. It happened!! We all bursted out laughing!! Now, I know many other toddler parents would be horrified at this but, we are raising an almost 3 year old turning 15 so it wasnt that bad! Ha. I am thankful she didnt try to order my drink of choice...an extra dirty martini rocks on the side...that would have sounded worse!! LOL

Going to Children's is still nerve wracking for me. I am seasoned, but it still gets me. On Tuesday, I was especially out of sorts when we got to Radiation because I forgot my cell phone in the car. Visions of it being stolen were tormenting me. I had just taken pictures of Sloane that I hadnt downloaded yet. My hubby also couldnt let the look of panic coming over my face go easily so he spent a few minutes razzing me about the valet guy who was now calling India using my phone!!

The mood certainly was not Rainbow Dreams. And then an "only in Rhode Island" thing happened. Around the corner came some friends who hold a special place in our hearts. They, too, have a child with a health concerns and were at Children's for some testing. I hadn't seen them since Christmas time and their immediate presence brought peace to me. Ryan's health concern is more involved than Sloane's, but we have shared many stories and experiences. I know Ryan and his parents through our primary NICU nurse. I have blogged about Donna before.....LOVE!!  Donna = Godsend. I still revert back to the tips she taught me almost 3 years later. For example, when Sloane had croup 2 weeks ago, I kept looking at her lips recalling that Donna said...to look at her lips, see if they turn blue, thats when its a problem. Ryan is Donna's grandson. Over the years since our NICU days, we have spent time with Ryan and his family. They are the kind of people who make you want to take your shoes off and relax on their couch.

Seeing Ryan's parents brought calm to me. All the reasons, I need not say, but I immediately felt eased. There is something about sharing our medical journey with another family who understands it that brings you back to baseline. Calling me silly (as many do), but I think it was the smallest divine intervention to help me find my center for the day!

After I centered myself, I was far more focused. And what did I focus on....feeding tubes! So many of the babies and children I saw on Tuesday had feeding tubes. I dont want to make light of them but it was like they were a dime a dozen. Let's be clear, Sloane's feeding tube initially sent me over the edge. It was anything but commonplace to me. Yet, here I was surrounded by them and they all looked quite normal. Normal right down to the mom who took out a glass bowl of pureed food and began pushing the food into her 10 year old son in the middle of Dr. Rahbar's office. It made me reflect on our experience with Sloane's feeding tube and wonder why it upset my center so deeply.

The Paper To Prove It

Let me first say that today went well.  Sloane's swallow study went as best as could be expected. She did not aspirate any of the 5-6 sips she swallowed, but she did not take any large sips or drink continuously. Basically, Sloane saw the white chalky barium in her water and apple juice and then on her watermelon and simply refused to eat or drink. The barium approach is not ideal at all if you ask me! All of my assumptions that Sloane would preform because she was older and follows directions better....did exactly what the old adage says...made an ass out of you and me!! Sloane must of missed that window of opportunity because what we got today was...I want the real water, that's not big bird apple juice, yucky!!!

Nevertheless, Sloane passed her swallow study and I have the paper to prove it.

We waited well over an hour for Dr. Rahbar, but that is not very unusual. The timing was a bit difficult though as we rounded the corner to naptime. Sloane was a bit out of sorts...falling over her own feet, singing songs loudly, and twirling around. Think tipsy adult on the dance floor!

Dr. Rahbar in his own words said we could not have asked for better results on the swallow study. I would have agreed if Sloane had drank more and faster. We chatted, as we always do, about our parental concerns. Dr. Rahbar is firm believer that we as parents have the most valuable information. My hubby and I were both clear that we feel as though Sloane is aspirating on large gulps and consecutive swallows neither or which we saw today during the study. We also discussed my other concerns of the wheeze and out of breath issues when Sloane is overly active.

Dr. Rahbar stated that he would like to take another look/scope in Sloane's airway based on our discussion. We could do it soon OR wait thru the summer and revisit that approach in September. We chose waiting until September. There is a catch though......if Sloane gets croup or pneumonia before the September approach then we need to schedule the scope at that time. There is no reason to wait until September at that point, he will want to get in her airway sooner than later. We were comfortable with this course of action.

Today went well medically. Tomorrow I am going to blog on the emotional reality that comes along with a trip to Children's. A higher power paid a visit today.......