Hot Pink

Im pretty sure I almost shoplifted today. It was not intentional, but it did in fact happen. At Target, I picked up a nail polish to match the hooker-ish hot pink I'm wearing this week. I had some chips that I wanted to cover them over. I threw the polish in the carriage and went on shopping. 


It was a quick trip to Target which doesnt mean it was a cheap trip. Have you ever noticed that leaving Target without spending $50.00 is almost impossible? Today's list consisted of: wet ones (shocker!!), baby soap, q-tips, zyrtec for the snuffaluffagus living in my house, nail polish, and birthday cards. I was hoping for another pair of colored skinny jeans but they were all out of my size.  


Sloane and I fought our way thru the store because she was dying to get her hands on the wet ones. She loves to take them out of the package one by one. It have to disguise them in the diaper bag in ziploc bags!! Ha. Once at check-out, I emptied the carriage, paid, reload and we were on our way back to the car. As I unloaded the bags into the car I saw it, the Essie bottle of hooker hot pink nail polish was sitting at the bottom of the carriage. I had shoplifted!! Not the first sin I have committed, but nevertheless not exactly a Christian act either. Honestly, it was not intentional. I didn't notice it there until it was too late. 


Now I could have walked it back into the store. Many goodhearted people would have done that. But, you see, Sloane was already in her car seat and there was no way I was unbuckling her to rebuckle her in 2 minutes. I would rather have a paper cut on all ten fingers!! 


I made a wholesome decision in my opinion! I left the nail polish in the car so I did not completely shop-lift it. I did not take it home. Now, I could be dishonest and end the story there, but that's no fun. What did I do before I pushed the cart with the nail polish in it to the cart holding area???? 
I opened the bottle and painted over my 2 chipped nails!! hahahahaha......

Tomorrow is a HUGE day in our home. 

First and foremost, it is the last day of cold and flu season!!! Sloane, thanks to my hubby's diligent germ fighting, has made it thru another cold and flu season without a cold or flu!! REMARKABLE!! I will, tomorrow, send our ped a note as I did last year saying YAHOO!! Colds and the flu are a much bigger beast for Sloane because her lungs are already compromised by her aspirations. 


Secondly, take a look at this picture! Tomorrow, is Sloane's first day of dance class. Ballet slippers and tu-tu!! I am so excited. I was a dancer. It was the only athletic activity (if you can consider it one) that I ever did growing up. Sports were not something I excelled in. In fact, I sucked. I did become a prima ballerina through the years. I have my 1st ballet slippers hanging in Sloane's room. 

My hubby isnt feeling the same excitement as I am. He was all star in soccer and tennis so he has been practicing kicking and hitting for months! Hoping for the next Mia Hamm or Anna Kournikova. I am sure soccer and tennis will come along too...but for now, bring on the tu-tus, tiaras and maybe some hot pink nails for my little dancing queen!!

Big Pond Days

Drum roll please...... Team Sloane 2010 raised $1900,00 for the March of Dimes this year. The walk was Saturday and it was a great day. I was quiet on the ride home. "Why so quiet?" was the question my hubby asked more than once. "No reason" was my answer more than once. I couldn't put my finger on it at that moment. After all, our walkers were enthusiastic, the day is blue skied, the picnic lunch was delish and Sloane was "on fire." It was a great day on the outside. On the inside, it was a kind of day that makes me reflect....a Big Pond Day. Big Pond Days are days when Sloane's LC loses some of its luster. 


Big Pond Days are the days when I am reminded how lucky we are that Sloane is as healthy as she is. Big Pond Days are the days when my heart hurts for another parent of a child with a much bigger medical need than Sloane's. Big Pond Days are the days when I question the basis of my religion because no child should have to hurt. Big Pond Days are the days when I see a child in a stroller with so much medical equipment on it, that my eyes can't bare to look. Big Pond Days are the days when I am extra quiet, working through my thoughts, counting my blessings and opening my eyes.


On the walk I chatted with another mom whose son has a rare birth defect as well. We chatted about how a some point life became normal. For me, I think that happened around September. Prior to that in my experience, there was shock, then there was fog, and now there is life.
In the shock stage, I was numb (post: a home for 50 days), 
In the fog stage, I was just that...foggy...living day to day, but covered by a medical fog....every moment was about Sloane's health, and
In the life stage, I am living..something became normal. Sloane has a laryngeal cleft and it is what it is. Daily life is more balanced. Our days are more about what Sloane can say and do. (as a side note, this weekend I heard "i dont want to" a few too many times)


Having conversations with other moms of children who are medically challenged is as helpful to me, as having chats with my go-to mommies. There is a bonding & understanding that happens almost instantly. Motherhood, by nature, bonds us as women. But a deeper common thread is present when I talk with moms who have a child with a medical need. An openness is felt. I am sure many, if not most, of these moms, have Big Pond Days too!! 

105 Minutes Of Torture

Let me be clear....today, I could throw the fucking feeding tube out the window!! 35 minutes is TOO LONG for Sloane to sit. I can not wait until Wednesday to plead my case to the Nutrition Clinic. We have had it! The timing of the feeding tube is not something that I can tweak or cut shorter without some medical input. There is a science to it based on Sloane's weight, age and daily diet which I understand. But considering that Sloane ate an organic turkey hotdog, string cheese, cucumbers, whole wheat pasta, edamame and half a banana for lunch...its purpose is hard to swallow!!!


Back to the 35 minutes: The last 15 minutes are torture for her and me. She is now crying, saying "momma out, momma out" and throwing anything in her reach. 


Breakfast was a SHIT SHOW! My friend called at the end of it after I pulled out the ipad, books, and finger puppets. This auntie, I'm sure, could hear the tone in my voice and the anger in Sloane's pleas of "momma". She said "I think it is time for play dooh" Great idea!! But the truth be told, at this point, if she said its time for me to crack out the water balloons I might have tried it!! LOL 


Lunch was a MESS as the 35 minutes is even longer because we were creeping up on nap time. To add to the fun today, daddy was home.....which is an exciting event to begin with for Sloane and the builder was here to review our renovation plans. It was organized chaos!!! Or was it just chaos???? I almost started crying as loud as Sloane at one point. 


Sloane is fast asleep right now and I am regrouping. I hope dinner's 35 minutes doesn't send Sloane or her momma over the edge. Wednesday can not come fast enough. None of this should be a surprise to me. Speaking on Sloane's behalf I can say, she is so active and curious, she thinks being stuck in her highchair three times a day for 35 minutes is simply a waste of her time! 


Tomorrow is the March of Dimes walk!! We have a team of 15 people walking and we raised over 1500.00! Alan and I are beyond thankful for the support our families and friends have given us. We decided to have a picnic with Team Sloane walkers tomorrow once we finish. I am looking forward to spending time everyone! Most importantly, after today's 70 minutes (35 more to come) of torture, I am excited to let Sloane run around during lunch time and not be held hostage by a fucking feeding tube!!


Don't forget to read the fine print: Mammie, Nonni, and Ti-ti sorry for the swearing!! It's just one of those days!!

Here An Ounce, There An Ounce

My MIL asked me the other day if there is a limit to how much/how many times Sloane can drink a day. It was a good question because I guess I never addressed that. Sloane can drink as much or as frequently as she wants each day as long as it is a safe consistency for her. Right now, that means 5 1/2 ounces of JU to one packet of Simply Thick. 

When I speak about ounces added to the Simply Thick, it isnt about increasing the amount of liquid in the cup although the more volume Sloane drinks the better. She does takes 15 ounces of milk by tube daily, so it would be great for her to be able to drink that amount or even 10 oz. (since we are creeping up on 2) in a thickened consistency by mouth. The BIG PUSH is for her at the very least to drink one cup of JU which is 5 1/2 oz. The sippy cup of JU comes everywhere now..in the car, in the stroller, on the tri-cycle, on play dates, to restaurants, on errands, ...somedays, its like where's waldo!!!

What the ounces added to the Simply Thick are about is consistency. The more liquid/more ounces added to the Simply Thick, the thinner the JU becomes. The goal here is for Sloane to safely drink all liquids in their natural form.


We started at 4oz to one packet of Simply Thick and by the swallow study on May 8th, we are hoping to be at 6oz to one packet of Simply Thick. If Sloane can safely or rather when Sloane can safely drink 8oz of liquid to one packet of honey consistency we can move on to nectar consistency. Nectar consistency Simply Thick I have heard is the same thickness as a drinkable yogurt.


All this counting ounces is getting crazy. Sometimes I think because Sloane has a gtube and her milk is pumped into her, we have been over the top obsessed. I was talking to my friend yesterday who has a 18 month old. She told me she is lucky if her daughter drinks 4 oz of milk a day and the majority of her milk daily comes from an 8oz bottle at night before bed. I have been force feeding or force pumping 15 ounces into Sloane everyday since her 1st birthday.


In our house, we have made so many positive changes in terms of the feeding tube over the past year that I am confident more are to come either in terms of timing (it is still 35 mins long) or in terms of volume (there are still three 5oz tube feeds a day). I am hoping that when we go to the feeding/nutrition clinic (they manage the gtube & oral feed intake) next week, we can either:

1. shorten the tube feed in terms of timing since Sloane is ready to jump out of the high-chair most days. 35 minutes is TOO long for her to sit. the length of the feed seems to be escalating her 2 year old table manners.
2. eliminate a tube feed daily taking her down from 15oz to 10-12oz daily.


Let's hope, our nutritionist is blown away when she sees Sloane and hears about her daily food intake and makes some changes in regards to the feeding tube. If not, it's going to be like "where's momma" in our house because soon I am going to be running for cover as the food starts flying!!! 

Miss Independent

Miss independent
Miss self-sufficient
Miss keep your distance

Miss unafraid
Miss out of my way
Miss don't let momma interfere, no

Miss on her own
Miss almost grown
Miss never let daddy help her off her throne

This is the new theme song in our house!! 

Sloane has become Little Miss Independent!!

It is incredible. I do not understand what has happened. Sloane wants to do everything herself. Isn't it too early for this?? She is only 21 months.

Here are some examples:

1. When we announce a tubby is going to be happening, she runs into her room, opens her drawer, pulls out her towel and heads to the bathroom.

2. When my hubby returns home from work, she greets him with sweatpants.

3. When I say we are going to go bye-bye, she heads into my bedroom and grabs a perfect sized handbag for her and runs to the door.

4. When I try to feed her anything, there are MAJOR moments of "no" or "me do" 

5. If the snack of choice is a clementine or banana, Sloane wants to peel it.

6. If it is time to moisturize, Sloane wants to pump and spread the cream. 

7. If it is undressing time, Sloane wants to take off her own coat and shoes.

8. Sloane now gets the phone herself and announces who she would like to call. 

9. Sloane now tells us when its bedtime "nite-nite" and as soon as she hits the pillow basically asks us to leave the room.

10. It is forbidden by Sloane to have your hand on anything she is using that is a higher level for her....like the computer, or the coloring book,  or fork.

          And for a cherry on top of this list, Sloane now states when she does pee- pee and poop as well as embarassing anyone who is at my house when they exit the bathroom with a questionable look of "pee-pee ???"

This has all happened too fast as far as I am concerned. I consider myself to be a well rounded individual, but I have learned through this journey of parenthood that babies/toddlers were something I knew very little about. Everyday, I am in shock as to how fast the baby stage melts away. I guess I thought that Sloane would be a little more dependent for a longer while. Somedays, I feel like Sloane is on fast 

forward and I am stuck on play. Which brings me to my next announcement: as of today, we are on 5 1/2 oz of JU!!  We arent exactly in fast forward in our sipping world, but we are cruising at a steady speed! 

That's Sloane???

I am pretty sure Sloane drank more than me today. Sucking down one cup of JU this am and then she sipped away her second while she wandered around or rather ran around like a busy bee at cuzzy's first birthday. It was my niece's happy birthday today. A very special and fun day for our family...although I do wonder where the year has gone??? I do not understand why these 2 precious babies keeping growing bigger and bigger.


As far as sipping and swallowing goes, it was a Gold Star Day!!  She did sneak in sips of H2O in its natural form today. This is a BIG treat and on a daily basis a big no-no. Sloane always prefers liquids in their natural form/not thickened. She tastes the difference and knows which she likes better. We try not to give them to her frequently for fear that she will refuse the thickened JU. And, most importantly, liquids in their natural form in large amounts are not safe for Sloane. Soon enough we hope....she will be able to have thinner liquids.  2 more days on 5oz and then we are on to 5 1/2oz for 10 days.


Cuzzy's birthday party was a BIG bash!! As it should have been. We saw lots of old friends. A few people at the party stated in different words that they couldn't believe how great Sloane looked, how she was thriving, and how healthy she appeared. One person actually said "that's Sloane?" I always feel bad about this. Sometimes I think because people do not understand what a laryngeal cleft is or hear that she has a feeding tube, they think sick/unhealthy/undernourished or pale. Sometimes even physically malformed (a visible hole in her throat). When Sloane was an infant, I wanted to put her picture in the newspaper with a caption that said "here she is. nothing is wrong with her. she is perfect." It drove me nuts.  I had gotten over this, but when people who have never seen Sloane or haven't seen her in a long time says things like I heard today I regress back. 


I can not lie when my hubby and I look back at pictures of Sloane as infant, we can not believe how frail and pale she looked. We didn't see it that way while we were traveling on that journey, but now sometimes I don't even want to look at old pictures. I would have to say, that Sloane didn't start to perk up in coloring and size until she was 6 months old. I guess that is why people who havent seen her say things like "wow, she is really thriving." Maybe when they did see her when she was an infant, they saw the reality of the situation.... the unconditional love of a parent doesn't. 


Over the past year, Sloane's godmother told me that she was concerned about what was going to happen when Sloane was first in the NICU. Something she never lead on to us while we were hanging on by threads. I also remember the first time my brother and my SIL came to see Sloane in the NICU. They exited the room before I did. I met them in the hallway and my SIL was crying and my brother looked like he wanted to throw up. I knew why. I  knew what they saw. I knew what they felt. I knew what they didnt want to think. I sternly told my SIL "no crying" and kept walking. There were the days when I had pictures of Sloane turned black/white or sepia by my dear friend's father so you couldn't tell how drawn she looked.


Was Sloane sick? No, but she was a newborn with pneumonia. She had a nasal gastric feeding tube, O2 in her nose, IVs in her arms, heart monitors on her chest and was on a strong doses of antibiotics daily. She wore a hospital gown most days because fussing with all the tubes through arm and leg holes wasnt worth it. As if that was enough of an upsetting sight, add the days of invasive medical procedures, testing, and surgeries to it.....and Sloane did start to look sick. She looked drawn, frail, and under-stimulated for almost 50 days. Sure there were regular normal new-borns days missed in, but who remembers those???


Given those memories, I shouldn't be surprised that old friends today were pleasantly surprised to see Sloane looking perfectly healthy, incredibly animated, overly friendly, and downright energizer bunny like today. 

Here Is Why

Today Sloane had swallowing therapy probably should have told you folks that in yesterday's post. It was our last session before the swallow study. Here is what I learned today:


1. Do not write anything in marker on our family calendar. Here is why: THE SWALLOW STUDY HAS BEEN CHANGED TO MAY 8th. (one week earlier)


2. Sloane is news-worthy. Here is why: the SLP today confirmed that isolated laryngeal clefts, like Sloane's, are the minority AND level 2 almost a 3, like Sloane's, are very very rare/not what they ordinarily see which means SLOANE IS ONE EXTRA SPECIAL KID.


3. It is an incredible feeling to hear a medical professional say positive statements about your child. Here is why: Our SLP called Sloane clever, impressive and bright after watching her  do her thing today. She said each time she sees Sloane she loves to watch her be herself. As her mom, I know she is fabulous. But boy, it was AWESOME to hear that from someone who works with children all day.


4. We are very blessed. Here is why: The SLP spent some time today explaining how very lucky we are that Sloane is as healthy as she is given the depth of her cleft. I know this deep down, but the REMINDER HIT HOME. 


5. Spending time at Children's Hospital is good for me. Here is why: It helps me see that in the big pond, we have a healthy, perfect treasure even if when we are in our small pond of family/friends we are PAVING THE WAY in the journey of having a child with a medical need. 


6. When we have drs. appointments in Boston in the morning, I should tube Sloane in the car during the ride up. Here is why: I organize our BON VOYAGE to the minute and I am always late because I am waiting for the slow winding pain in the ass tube feed to finish. 


7. The car ride back/forth to Boston is exhausting. Here is why: Sloane is not enjoying sitting in the car for 75 minutes, sitting in the stroller for another 75 minutes, and then sitting in the car for another 75 minutes. Her crying makes me FEEL LIKE A SHITTY MOTHER because she has been confined all day.


8. This is the first week ever that Sloane spent an hour or two with someone other than me every single day. Here is why: 
on Monday, mammie babysat Sloane 
on Tuesday, the aunties babysat Sloane
on Wednesday, auntie she-she babysat Sloane
on Thursday, na-na babysat Sloane
on Friday, ti-ti babysat Sloane
I enjoyed the time away & appreciated the help, but I noticed that I felt a bit DISCONNECTED from my best friend as she is usually all mine all day. 


9. The difference between honey and nectar consistency of Simply Thick is 4oz. Here is why: adding 1 packet of honey consistency Simply Thick to 8oz of liquid is the same as adding one packet of nectar consistency to 4oz of liquid. Sloane is safely drinking 5oz to one packet of honey consistency so we will have to have SUCCESS with 5 1/2, 6, 
6 1/2, 7, 7 1/2 and finally 8oz before we can move onto to nectar consistence of Simply Thick. 


10. Mammie follows directions better than me. Here is why: I was supposed to be further along in the thinning out liquids than I am. I admit it....I didn't up Sloane to 5oz when I was suppose to. I was afraid because I was going to be away so I waited til I was home. The SLP wasn't exactly over-joyed today so she clearly looked mammie in the eyes when she discussed the THINNING OUT SCHEDULE to occur prior to the swallow study. I'm pretty sure she wanted to be sure the schedule would be followed so she directed herself at the best listener in our group. Sloane and I weren't exactly in line for stars today. 


11. The swallow study will give us black and white information, but there are shades of gray when dealing with aspiration. Here is why: The SLP said today that even if the swallow study shows signs of aspiration, we MAY NOT HAVE TO CHANGE anything in Sloane's diet because the black and white of it is that Sloane has remained healthy, with no pneumonias since she started on thickened liquids so we maybe able to continue with liquids anyhow. 

Blob~licious

When I was younger, I had a secret crush on Cool Whip. I loved a dollop of it on sweet desserts. Which is odd to think of right now, because I do not have a sweet tooth at all at this age. I am much more of a foodie!! Anyhow, my brother detested Cool Whip. He went as far as to put it in the microwave to show me what it melted down to.....pure oil. His science experiment I had an effect on me, but not enough to keep me away completely. As a matter of fact as a side note, a dollop of cool whip between 2 chocolate graham crackers popped into the freezer is a delicious low cal frozen treat!! 


Back to my science lesson, I thought about my brother's experiment this am when I saw the glass I used for my past post filled with the Simply Thick. It hadn't moved at all. The Simply Thick was still a blob at the bottom of the glass..looking like sludge....not exactly blob~licious!! I have to say this had more of an effect on me that the old Cool Whip trick. Sorry, brother bear!!! I keep thinking about what the Simply Thick forms into in Sloane's belly. The thoughts actually made me sick to mine.


Sloane is a great eater and we try to give her nutritious and organic treats. Yet, everyday, we are adding very interesting substances (Xanthan Gum, Citric Acid, Potassium Sorbate) to her body with no real idea what their effects are. I am clear that at this point there are no other options given the issue of aspiration, but Simply Thick wasn't exactly in our plan. I actually fought the idea of adding it to liquids for well over a year. We tried to thicken many other ways, but we did not have as much success peaking Sloane's interest in the liquid.  As my brother says: we make plans and the big guy laughs!!!

Simply Thick

What has no taste, doesn't wiggle or jiggle and is colorless all over??

Here is the packet of Simply Thick we use daily to thicken Sloane's JU. 

This is its thickness. I would say that the honey consistency is similar not only to honey, but also mayonnaise. 

Once Sloane's JU is poured, I squeeze one packet of Simply Thick into it and shake it up!! 

Sloane started 5oz. of liquid to one packet of Simply Thick yesterday. It seems to be going well. NO visible signs of aspiration. Which is awesome!! 

Usually, Sloane has her JU in the afternoon in a one shot sitting but the past 2 days I have decided to pour her a cup in the mid-am and let her sip all day long.  A little more normal than forcing Sloane to drink 5 oz. in an hour time-frame. 

Sounds like a plan, right?? Except, who wants to drink warm juice. Truly, no one wants to drink warm anything?? Liquids as far as I am concerned should be iced, chilled, or hot!! I hadn't given this much thought until the aunties mentioned it to me today while they had the little lady all to themselves. The question was can I add ice to the JU??? I assume no because it would water the consistency down. Before, I could ponder this problem a bit. We can't simply pour a new cup of JU all day long. Simply Thick isn't free!! Sloane's auntie, who is a mom herself, opens her freezer and then plops a fake plastic ice cube in Sloane's sippy cup. Problem Solved!!!

Having many of my dear friends become moms before I did have been GREAT!! Many of the smallest issues, problems, dilemmas and questions I have are solved before I can obsess about them. Would I have thought about a fake plastic cube to keep Sloane's JU chilled, sure I would have...someday!! Certainly, not immediately!

When you are a mom of a child with a medical need, that medical need can overtake all aspects of your parenting. Even the simplest normal parenting questions can't be solved easily....that's where the circle of trust jumps in!!

Bitter.....Sweet

So I am back home!! My homecoming was bittersweet. The weekend was all that I had wished for so it was bitter to leave the peaceful surroundings. There was relaxing, reading, laughing, eating, sitting, drinking, exercising, sight-seeing, conversing, and even sunning! The weather this weekend could not have been more perfect! Our destination was beyond gorgeous. And I can honestly say I can not wait to return!! 


As for the company, there is NOTHING like being with your girlfriends. One more very dear friend of mine joined us on a whim and she completed the quad perfectly. There was not a dull moment in the 48 hours we spent together. As I have said many, many times, I am truly blessed with the friendships that I have. 


Sloane was napping when I walked thru the doors so I had to wait to snuggle. Once she awoke, she could not get enough of me. Pure sweetness. There was hugging, puckered up kisses, snuggles and lots of hand holding. Me and my best friend were back together!! 


Sloane had a very fun weekend with daddy. The zoo was a big hit!! They washed the car by hand. Nonni visited. A dance party occurred with her uncle and "the machine", our babysitter last night. And today, poppie and mamie took her to brunch. 


It was went swimmingly.....if you do not count that when I saw her today I noticed that she wasn't exactly fully dressed!! The weather has been abnormally warm this weekend and Sloane's summer clothes were washed, but not organized into outfits. 


Her daddy grabbed a very cute summery tunic...not dress....tunic. But he forget the pants that went with it. Yup!! Sloane wore a very, very, very, short or rather mini-dress today!! Now she can rock any outfit, so it did look cute, but a tad-bit white trash with the diaper hanging out the bottom!! The way I see it is if that was the only mis-hap all weekend then my hubby can job-swap with me weekend! He did a fabulous job being a stay at home dad! 

And The Date Is.....

It is scheduled!!! On May 15th, we will have medical/factual/accurate information as to what consistencies Sloane can drink safely. Let's all hope that at the very least this swallow study shows that Sloane can tolerate Honey Consistency Simply Thick without aspirating. She shows no signs visibly right now, but you never know what the x-rayed swallow study will record. Who knows, maybe just maybe, we will be pleasantly surprised and Sloane will show us that she can tolerate even thinner liquids than we are giving her. We have an appointment with the SLP next friday to get all our ducks in order for the swallow study. There will be practice, practice, practice until then!!!

I am packed and waiting. One hour until take-off. The truth be told, I am nervous. When I go out during the day for more than 2 hours, I am itching to get home to see Sloane. I am going to miss her LOTS!!!!

We had a very fun breakfast this am with titi, ani (auntie), baby (cuzzy) and mamie in honor of ti-ti's birthday. My fantastic niece and Sloane was EXCELLENT!! My SIL and I were laughing because I admitted to her that when I am out to eat with Sloane I do not feel like I can interact/talk/engage because I am too concerned with Sloane. My SIL admitted the same. She said "I am here in body" LOL. She is very funny. Anyhow, it is true. I think we all share 4 words when we go out and end up talking about life in later conversations. Managing babies, food intake, public behavior and cleanliness is all we can handle!! Ha!! We choke down our food and say the occasional word to each other.

This weekend I hope to enjoy conversation with my friends. I am not so worried about their food intake, public behavior or cleanliness!! LOL Their alcohol intake....YES!!!!!!

Hello, Details

This getaway couldn't come a better time. I just realized as I was packing that I have lost a bit of my focus in the past year. Sloane and the depth of her LC have occupied all of my brain cells, all of my emotional thoughts and all of my organizational tendencies. What I just realized is that, my handbag, the one I used everyday for almost a year has been hanging in my closet unbeknownst to me. I had completely forgotten about this handbag. 


I haven't used a handbag in forever. My diaper bag has become my handbag when I am with Sloane. When I am out alone, I use just a wallet and on date nights I carry a clutch. This big, beautiful expensive tote was a gift from my MIL and I love it. Love it as much as not changing into any other bag for almost a year. 


Until tonight, when I was spending time reviewing my clothes, I did not notice it hanging in the closet. Now it was not hidden. It is in plain sight. I just never saw it for over a year. I overlooked it. How I have no idea? It was like finding an old favorite stuffed animal. 


I haven't been paying good attention to any daily details other than Sloane and the progress of her LC. And certainly not my own miscellaneous details. 


I found my handbag. Not that it was lost. But I found it. And tomorrow, I am going to toss it on my shoulder and head out with my friends to enjoy some downtime and embrace the details.

Bond Blog

I wasn't sure if blogging was going to happen tonight. I had to catch up on some household duties, head to Target, email a big push for the March for Babies walk, and I am dying to sink my teeth into the book I have been devouring (a complete chick flick read....all day I wondered will Thatcher and Adrienne be together for their lives...lol). I took a minute to log into A Sip Of Heaven and noticed the blog that dragged me into this cyber world FINALLY posted. I have been waiting for some kind of update for months. 


The www.familybondingtime.blogspot.com isn't exactly a blog for the weak. It is a heart-wrenching story of a couple that I first saw on the Today Show more than a year ago. This young couple with a toddler were BOTH diagnosised with stage 4 cancers w/in 13 days of each other. She has breast cancer and he has rectal cancer. I was sucked into their story, their fight, their chronicles daily. Seeing the post today brought on a sigh of relief. I had been worried that something tragic had happened in their family. The post was a cliff hanger as many in their blog are so I will wait. 


Tonight I won't blog about my angel who is fast alseep..the angel who threw her raviolis across the kitchen at dinner,


I won't write about the fact that I didn't cook tonight instead I smartened and let my dear friend who is a chef fill my table with her yummy take-out, 


I won't write about how I have already filled 2 cheat sheets of lined paper for my hubby for this weekend, 


I won't write about how a sippy cup of JU hit road today......


Tonight, I post for the Bond Family. 

War Zone

I wonder if dinner time is a war zone in anyone else's house?? Cooking dinner continues to stress me out daily!!! I am not a domestic goddess and my hubby does not require gourmet food, but even a simple dinner makes me sweat. It has nothing to do with the cooking. I can hold my own in the kitchen. I have been known to make some mean re-creations of Rachel Ray and Giada recipes. It is the preparation during "the witching hour" that almost sends me down the street to Applebees!! 


I try to cook during the week. There is always the option of take-out for us, but I fight it tooth and nail. The occasional veggie bowl from Chipotle makes me give in! Mexican is my weakness! Ole'! 


Tonight was simple with a capital S!! Chicken sausage and roasted broccoli and cauliflower. Nothing to it, right??? Well, it took almost 1 and 1/2 hours from washing the veggies to gobbling them up!! The chaos occurs simply because Sloane wants me with her in the playroom and I want to be in the kitchen. Now, listen, the rooms are 2 feet from each other but she won't have it. The hours from 5 to 7 can be a crap shot. There can be a jackpot with all smiles OR I can lose everything but the shirt on my back!! LOL The witching hour is a phenomenon I never understood until I was a mom!


It took me at least 20 minutes to cut and wash the veggies. I opened the packages, put them in the colander and then I was back in the playroom playing farm. I slithered away again to wash the veggies and start trimming them and then I was ordered back in the playroom for a "spot of tea" at the table. I engaged Sloane in book and tiptoed up the 3 stairs to place the veggies in the cookie sheet. I was called with a "momma, where are you?" and back into the playroom for a quick Ring Around the Rosey. I started a dance off and cha cha cha-ed myself back into the kitchen to chop garlic. You get the idea???? 20 or maybe 30 minutes later..the veggies hit the heat!!!! The chicken sausage is a whole another back and forth. 


Dinner is a war zone. For the amount of time it takes me to whip it up (HA), I should be creating an Iron Chef meal. It is ridiculous!! 

"AHA"

So here is the story on Sloane's JU moving forward. Dr. Rahbar had said that we need to keep thinning out liquids by 10% every 10 days. He was basically speaking Latin to me. I was unclear on how to progress this along. Black and white numbers are not my thing. I am more into flowery words. We are currently on 4 1/2oz of liquid to each packet of Honey Consistency Simply Thick.

Our, SLP, translated the new formula for me. Dr, Rahbar's 10%/10day approach is more aggressive than what the SLP had been prescribing for the past few months, but we are going to give it a go. So, Sloane will be on 4 1/2oz until Monday and then on we are moving up to 5oz of liquid to each packet of Simply Thick. We will basically increase the volume of liquid by 1/2oz every 2 or 3 weeks if there are no visible signs of aspiration.

I think everyone is THRILLED that Sloane is drinking, but we cant lose sight of the volume that Sloane is drinking vs. the volume she needs to drink daily. Sloane drinks 4 1/2 oz of liquid each day which is AWESOME!! But in reality, Sloane needs to drink 15 MORE oz each day. She drinks her hydration (JU) daily, but those other 15oz (5oz 3X daily) are her milk that she takes via tube.

Having her drink her JU everyday and not having to be hooked up has been so fun!! I can not imagine what life will be like when Sloane can take 1, 2 or all 3 of her milk tubes by mouth. In Oprah lingo, they will "AHA" moments.

As for the weekend getaway, I spent time today figuring out what exactly I will do to get our house ready for my hubby & Sloane. I have planned out when I will go to the market, what I will get for food, what I will label in the house, and where I will leave cheat sheets. I thought about leaving outfits out for her, but talked myself out of it. Instead, I reorganized the closet and matched up tops with bottoms in a Garanimal way. Can you stand it??? I have ISSUES clearly!!

 My hubby told me that he is taking Sloane to the zoo this weekend and I became a jelly belly!!!! Telling him he can't do that without me. LOL I galavant all over town with Sloane every day and I am trying to tell her father who never has her to himself that he can't do something fun with her without me. I almost wanted to slap myself!!! I am a CONTROL FREAK!! Admitting it is the 1st step to recovery!!! An "AHA" moment!!!

2 Days To Toddlerville

Next week at this time, I won't be with my baby!! This is not exactly that unusual for me since my hubby and I go out just about every Saturday night so I will clarify. But, first let me explain that back in October, we decided to give ourselves some couple time. Being first time parents is challenging enough, but having a child with a medical need puts a bit more pressure on all aspects of your home life.  It just so happens that a family friend is a corporate chick by day and a fabulous babysitter by night. "The machine" as my hubby calls her has been an angel sent from heaven. We leave our house for date night and the both of us are completely relaxed. Sloane loves her and she has been wonderful for Sloane and her development.


So although I usually don't spend Saturday nights with Sloane, next weekend is going to be very different. I am having a weekend away....leaving on Friday afternoon and arriving home on Sunday afternoon. I have only left Sloane overnight for a family wedding last June. I am due for a rejuvenation weekend as my husband calls it. He travels frequently for work so he thought I could use some childfree time myself.  It is not a balls to the wall/party all night kind of trip, it is much more of a relaxing, come as you please getaway. No plane, no train, just a care ride to peace and quiet.  I have 2 dear friends joining me. In an ideal world, I would snap my fingers and clear all the females in my life's schedules so they could all come!!  

I have no worries about leaving Sloane. She and her daddy will have a blast. I have more issues about not trying to control everything here while I am away. I have already started to plan in my head all the things I will do the day before I leave to have my house in order for my husband. Which is a complete waste of time as he is self-sufficient. I have already tried to plan my husband's weekend with Sloane in my head so I know what they will be doing all the time I am away. Which is a complete waste of time because he will be making his own plans for the 2 of them.  I have already tried to let my hubby know what things I do not think he should do with Sloane.  Which is a complete waste of time because he is her father is completely capable of deciding what he would like to do with her. I have already re-organized the freezer and re-bagged certain foods with their cooking directions so my hubby will be able to find things easily. Which is a complete waste of time because Sloane's father know what Sloane likes to eat. Basically, since the trip was booked I have wasted alot of time worrying about a whole lot of nothing. I have a hard time giving up control. Not my best quality. I like things to be as I picture them to be. Which is a complete waste of time!! Honestly, I do not have enough time in the day to waste all this time!!!


Anyhow, I think this getaway will be great for our whole family. I do think I need a little R&R as well as, some time to read up on how to manage my toddler's new found temper! I originally asked one auntie for some chick flick reads to fill my weekend, but after the past few day's temper tantrums I'll be walking myself right into Barnes and Noble for a wild child read. Ha!! Next weekend, may turn out to be boot camp for this mom. My 2 friends coming have 5 children ranging from 15 to 3 between the 2 of them so I hoping that they will share all their secrets with me on how to survive the next 2 years!! Sloane has been such a pleasant, easy going child for 20 months that her new found 'tude & temper have left me feeling a bit unprepared.


So next week at this time, I won't be with my daughter. I will be taking 2 days to gear up for the next 2 years of Toddlerville.

4 Months And Counting...

We waited 6 months for today's follow-up appointment with Dr. Rahbar and we will wait another 4 months until we see him again. I think everyone in the room was thrilled to hear that news. Sloane's soft bedside scope today wasn't so soft or bedside-ish. It was more like hellish!!! Sloane was so upset that she turned dusky and was left with tiny broken blood vessels around her eyes & cheeks from crying so hard. Sloane has had many of these scopes but today Dr. Rahbar decided to camp out in her airway. He was scoping for what felt like forever...much longer than he ever has. I couldn't watch. My hubby was the restraint person. And mammie never let her eyes wander away; she wasn't missing a thing that happens to her potato puff she said.

The good news is that Dr. Rahbar camped out because he wanted a good look at Sloane's airway. He said she has no scar tissue, her larynx looks great, she continues to show signs of perfect healing from her repair surgery, and her vocal cords look perfect. As if that was questionable today after all the screaming.

It was a good appointment. The plan is to do another swallow study w/in the next 2 months. We have not had one since August 2011 so the doc feels like its time to get some diagnostic information on the aspiration. The mom isnt overly excited because the last swallow study was devastating. We had made so much wonderful progress without any visible signs of aspiration and in ONE single swallow study.....it was all gone!!!! Sloane aspirated everything except solids. We had to take all foods, but solids away from her August until October. I can not bare that again. It would be crushing to take her JU away from her. I explained my concerns to the man in charge, but he said after all this time he doesn't expect her to aspirate her JU on the swallow study and maybe we can test her a bit with the nectar consistency and she will show us that she can safely swallow thinner liquids. He said to call him if it is good news, but not if it is bad! Ha. The doc has a quiet, dry sense of humor. 

So I called Sloane's SLP to have her make an appointment for a MBS (modified barium swallow study) in April or May. More to come on a date.......

We will see Courtney, the SLP, again before the MBS to brush-up on our swallow study taking skills .  I am hoping for some cliff notes. Ha!!!! In the meantime until we see her, we as conscientious parents can thin out Sloane's JU by 10% every 10 days as long as she shows no signs of aspiration. I have no idea what this means. I have deferred to Courtney. Does this mean we move from 4 1/2 oz to 4 3/4 oz to 5 oz of liquid to each packet of honey consistency Simply Thick? More to come on the numbers......

We did ask Dr. Rahbar lots of questions today. There were questions of when, how long, why, what if. And although there were questions,  there were NOT definite answers. Dr. Rahbar, himself, said that a laryngeal cleft is a new territory in medicine and the neuro-discoordination that comes with a cleft, as deep as Sloane's, is  even newer territory (less than 10 years old). They, as medical professionals, do not really know what it is. 

Sooooo, followers there are no answers to your questions of: 

when will she be able to drink regularly, 

when can the g-tube come out, 

how long does it take to get from honey consistency to nectar consistency,  

will she be off the g-tube by kindergarten

There are only educated guesses. Every child is different. He did say that the children who continue to have swallowing difficulties beyond 4 or 5 years old USUALLY have other medical needs as well. We hope that because Sloane's cleft is an isolated birth defect, she is able to progress before school age. 

The easiest way to think about LC and the swallowing disabilities that come with them is with an analogy of speech delays and speech therapy. Children with delayed speech get speech therapy. Some of those children correct their speech in 3 months and are discharged from therapy. Some of those children correct their speech in 12 months and are discharged. And some of those children take years to correct their speech. We do not know how long Sloane will need swallowing therapy & plain old practice time to correct/improve/strengthen her neuro-discoordination in her throat.  SLOW & STEADY!!!!

So here is the plan: continue with monthly swallowing therapy with our SLP, have a MBS by the end of May to get some diagnostic results, see Dr. Rahbar in August for another follow-up appointment 

As for today's visit from a non-medical view. Sloane was VERY active and easily upset this afternoon. We played outside alot and there was ice cream!!!  I was thrilled to have my hubby's helping hands today. As she gets older, each appointment takes longer to recover from. She gets it. I just told someone the other day that she doesn't cry when she 1st arrives at Dr. Rahbar's office. Not the case anymore. The minute she saw a white coat or stethoscope, she started crying, waving her hands and saying no. It is heart-breaking for me. I feel terrible because my daughter is scared, in pain and terrified. The look in her eyes, sound of her cries, desperation in her screams of momma, and appearance of her face burns at me. I know there is a reason for it, but it takes me time for me to let go of it. I will let go of it for the next 4 months...

A Wait Of 2 Hours

We placed a re-order for Simply Thick tonight. That means Sloane has drank 50 thickened cups of JU. Pretty incredible if you ask her mom and dad! I ordered 50 more packets of honey consistency. It is unclear when we will be able to thin down more into nectar consistency. Maybe on Tuesday, Dr. Rahbar will have some insight as to when that change will happen. I assume it is months away? Sloane has been successful with 4 1/2 oz of liquid to one packet of Simply Thick Honey Consistency, but I do not know how thinned out honey consistency can become. Do we move to 5 oz, then 5 1/2 oz. and then 6 oz.?? I am sure Dr. Rahbar will concur with our SLP on the protocol.


Tuesday will be interesting. If you have never had an appt. with a Dr. as specialized and in demand as Dr. Rahbar, I am sure it is hard to imagine that at most appts. we wait at least 2 hours for him. Let me repeat, at most appts. with Dr. Rahbar, we wait at least 2 hours to see him.  If our appt. is at 10, we see him around 12:30. It is never clear why this is. I know he only sees patients on Tuesday and I know that patients come from all over the East Coast to see him so I figure those 2 factors give us the result of a LONG day. We do try to keep Sloane as occupied as we can. The staff is apologetic as they can be. And once, Dr. Rahbar arrives, we NEVER feel rushed. He is worth the wait and his PA always clarifies anything we need her to after the fact in a prompt manner. When anyone in our circle of trust wants to come at an appointment with me and mammie, I give them fair warning about the timing of the day. Our appointment isnt an appointment time, it is an appointment day!


Because we are driving at least an hour to Children's, have a significant wait before our appointment, spend a good amount of time with Dr. Rahbar and his team, and then have the drive home....the day can take a toll on Sloane. There is a lot of sitting involved, some invasive procedures and not much free play....not exactly the recipe for a fun toddler day. I have already started to develop of list of items to take with us to make the day as fun as it can be. I hope Dr. Rahbar's office is ready for a bubble show!!! One of Sloane's favorites!!