Catwalk

A polite way to say it would be that Sloane has guts, courage, fortitude, nerve or audacity! But the truth is one of the reasons Sloane is loved more than life itself is because she has (in a very RI slang heritage way)..... balls! Today at dance class, she proved it once again!

Class went very well. I wasnt overly surprised since Sloane has been preforming one of her moves for every person she loves in the past 3 days. And when she is done, she claps for herself! That's my girl. It is adorable and pretty impressive to me since I havent reinforced any of new moves we have learned at all. Slacker mom!! Sloane, herself, because she is self sufficient according to my husband....lol, has taken it upon herself at 22 months old to put the phrase "practice makes perfect" into use. 

At the end of class, there is a snuggle song. The moms cuddle with their daughters and sing. Sloane is far to busy to stop and snuggle. As a matter of fact, this is her least favorite time of the class. If she does want to stop and cuddle, she may pick my lap if I am lucky. Sometimes she picks the teacher and most times if Ani and cuzzy are enrolled in the class, Ani's lap is Sloane's snuggle spot.

Today during the snuggle song, what did Sloane do? She lifted up her tank top, put her index finger at her mickey button and parade around in front of each pair of momma/child showing them her button. Balls!! The looks on the moms' faces were priceless as was Miss Sandy's jaw. I was laughing inside and smirking on the outside. Instead of grabbing her or her shirt, I let her finish her catwalk and we waltzed out of the room. I do wish I had stayed to watch the aftermath unfold. I am sure there were some thoughts of wonder or curiosity as to why my dancing queen has a feeding tube. 

We changed and were on our way out the door when I saw a new friend and her child. We have known each other for a couple of years and she has superficially ridden along on Sloane's journey. Once we were outside, I told her the story of what had just occurred and we shared a fit of laughter! My friend said in her beautiful columbian accent, "oh my, the questions they will ask." She knows Sloane and has watched her blossom in all aspects of her life so she wasn't at all surprised of Sloane's belly modeling debut. 

My daughter has balls! Maybe all almost 2 year olds do?? I don't know. But what I do know is that I couldn't be happier. Sloane is preceded and surrounded by many assertive, independent and ballsy woman so I hope her courage, nerve, audacity and guts continue to grow with her. 

As for Operation Fluids, a battle was won today. Sloane drank 3 sippy cups of thickened flavored water!! That is about 15 to 18 oz. And thank goodness for that because it was another HOT one!! At this point, since the volume is creeping up, I need to make a move to thin out the consistency more. We are at 6 1/2 oz to one packet of Simply Thick.  I think it is about time we give 7 ounces to one packet a whirl! 

Monty Hall

I had a bunch of different ways to start tonite's blog running thru my head, but one was clearly more prevalent. I received a comment from a LC mom who found our blog. Her 6 month old has a level 2 cleft like Sloane. Their family is currently working thru the all encompassing and overwhelming feeding tube/reflux stage.

I wanted to take a minute to tell, Keren, (in case she checks back in with us someday) that it does get better, easier, more normal and almost acceptable. I am thinking of you and your son. Our family has not forgotten those earlier days. They are engraved on our hearts and in our heads. Severe reflux is something only another parent who has dealt with it can understand and a LC is, as I have said, a teeny tiny life altering birth defect. Somedays, I can't bare to think about what our live was like during Sloane's first year of life. The only word that comes to mind is survival. We took it day by day and did what we could to get to the next one. Take care of yourself!

As for Sloane's journey, all was good! We had a very nice weekend. And there was a first! We headed to the beach with cuzzy and Ani (auntie) for the 1st time. I have to say it was successful if you do not count the lobster-ish color the mommies' arms are or the fact that we did not sit down once in 4 hours. It was a trip to the beach like the old days....we never took off our cover-ups, didnt have chairs to relax in, there werent any books covered with sand and we didnt bother to take time to sunscreen ourselves after we lathered the girls! Ha

My niece is a wonderful influence on Sloane in regards to drinking. When cuzzy is gulping from her sippy cup, Sloane 9 out of 10 times wants her cup. It is great!! Today though cuzzy's swigs werent grabbing Sloane's attention. We went to a parade altogether and it was HOT. Hot like dead of summer weather. Of course seeing as though it was dehydration type weather, it would be the   1 out of 10 times that cuzzy guzzled away and Sloane wasn't interested at all in her cup. Because of the heat, we were all like a bunch of Monty Halls trying to make a deal to get Sloane to drink. I think at one point 5 or 6 people had tried to stick the straw to her lips! Once she takes that first sip, she is usually hooked. But that first step wasnt happening today.

Sloane didnt drink much during the parade while she was sweating  much away. Not ideal!!! There was an unspoken concern between myself and my hubby. At one point, as I was chugging a bottle of water, I thought, I'll have to just go home and tube feed her some water. And from there...my mind ran away with thoughts of her becoming dehydrated during the summer and having to go back to more tube feeds. I honestly go from 1 to 10 in 15 seconds! Ridiculous!!

Once we were in the car and all the parade action was over, Sloane proceeded to gulp down not one 8 oz. cup of water, but two of them!!! To all the Monty Halls, that were standing on their heads, to get Sloane to drink..... she finally gulped, guzzled, swigged and chugged! Aaaaaaahhhhhhhhhhhhhhhh!!!

Miss Leggy

Yesterday, I mentioned jeans in my blog. Today, I am going to talk about its homophone...genes!! Every day when I look at Sloane, I am amazed at how my genes took a back seat in terms of her physical appearance. Don't feel too bad for me....my genes are in the driver's seat for Sloane's personality good and bad. HA!!


In terms of her beautiful appearance, Sloane has glimpses of her momma at times, but 90% of the time she is all her daddy with a tiny bit of her uncle and poppie mixed in. Most days I only see my hubby in her features, but once in a while I see my brother and my father. They are quick flashes, but certainly happen. It is funny how people who do not know my hubby will say that Sloane looks like me..which I love!! The truth is she truly doesn't look like me. Now, Uncle and Auntie She She will fight you tooth and nail on this one. They both think Sloane is a mix between her momma and her father. Gotta love them for trying!


The feature that we are most in awe of lately is my daughter's legs! She is very proportioned, but at the same time she has very long legs for a 22 month old. For those of you who know me, I am sure you know they are not from me. I am not one inch above 5 feet and I am not exactly all leg. Sloane, on the other hand, once again has her father's genes. My hubby is just grazing 6 feet and a good proportion of him is leg. That is where Sloane gets them!! She is a lot leg. When she was born, I had a joke about how she was going to grow to be blond-ish, with green-ish eyes and well over 5 feet. We would be walking down the street and someone would ask her who the dark little troll was trailing behind her. And she would say that's my mom. LOL


So here it is, I can not keep up with Sloane's leg genes in regards to her jeans! Just today, I put on 2 pair of pants that were both 2T and there wasnt a chance of her wearing them! It cracks me up. I can buy ankle length pants and have to have them hemmed to be ankle length. Sloane, I am sure, will never have this problem!! My hubby will bust me some days because Sloane is wearing high-waters. She truly isn't. It just seems that she and especially her legs are growing like well watered weeds. I didnt know all this growing would happen so fast. Isn't she my baby???


Last year, I had put Sloane's summer clothes in a bin with thoughts that some of the flowy dresses from last year could be worn as shirts this year. 2 of the aunties laughed at me, but I didn't believe them. I thought they would be cute with jean shorts. Well, their snickers for my naivety were well deserved. The entire bucket went to cuzzy last week. I do not know what I was thinking??? Sloane and her legs made all of last year's clothes look like her doll's clothes.

$12.79

I am a girl who knows how to spend money! My hubby would say "dam right" to that!! There is a certain budget within our household. With that being said, I have wasted a lot of money in my day on unnecessary cheap things. Target is my downfall. In my head, I'll say its only $17.99. That red bullseye sucks me in!! On the contrary, I have also spent too much money on  out of budget things that I think are necessary....HA. I usually justify it by dividing its sticker price by the amount of times it gets used. A wonderful tactic I learned from my mom when I was younger. 


Let me explain: if I see a fabulous article of clothing that is a bit out of budget, I will take its price and divide it by the number of times I THINK I will wear this "I need it" piece of clothing. For example, I have a pair of black skinny jeans in my closet that I purchased in November and I am pretty sure based on the fact that I wore them at least once a week since then....in spite of their sticker shock, these jeans cost me less than $7.00. The way I see it...a complete bargain!!


This past week, I made 2 of the very best purchases of my life. 


Exhibit A:
I spent $8.95 on this Green Sprouts cup. It happens to be the 15th in our sippy cup collection.

Exhibit B:

I spent $3.84 on Strawberry Watermelon Mio Liquid Water Enhancer. 

In total, I spent $12.79!!! What did I get for $12.79?? I got to watch my daughter sip 20 ounces of strawberry/watermelon flavored thickened water through this straw yesterday and today. It was a sight like no other. She drank in the car, in the house, on the tricycle, while playing play doh, during breakfast, during lunch, during dinner, when she woke from her naps and all her sips were followed up with "ahhhhssss" for effect. 


I have never been more sure of a purchase in my life. I mean the ROI on this $12.79 is amazing!! I am not sure what all this sipping means..... for those of you who wheels are spinning. If this trend continues (fingers crossed), I am not sure what happens?? 


I do not know exactly how much/# of ounces Sloane needs to drink by mouth consistently and for how long she needs to do that before we can talk about taking the mickey button out.
Sloane is not drinking milk YET by mouth and I am unclear if that needs to happen for the mickey button to come out. I do not know the importance of milk, in our ped's opinion, as Sloane comes up on 2 years old. I am sure that in just 2 short months at Sloane's 2 year old ped appointment, we will get answers for all our questions. Until then, I am hoping for a 20 ounce day tomorrow!! 

Cherry On Top

From where I sit, today was a fabulous day!! I spent the entire day cleaning out closets out with my fashionista girlfriend and Sloane. It is a never ending job!! There are bags for goodwill, bags for our friends who are expecting a baby girl in September (so excited), and our closets that are completely organized. There is nothing that makes me feel more settled than a well folded, seasonally appropriate, and neat closet. Some people need a clean kitchen or a magazine ready home, not me....I need an OCD closet. 


To top that off...hello again kettlebells!!! I am in love with kettlebell workouts. I have not seen a bell in months because my babysitting schedule hasn't worked for the classes. But as luck would have it, I found my old instructor at a dive/hole in the wall gym close to home on Monday nights at 5:30. Not an ideal time AT ALL, but I decided to throw caution to the wind, leave Sloane during the witching hour and dinner time and get my swing back. I pleaded my case to my MIL (which took about 5 seconds since she would prefer to spend all her time with Sloane than live real life) and off I went. It was great to be back with the bells! I smiled the entire 45 minutes while sweating my ass off!! 


The cherry on top today was what I saw when I came home from the sweat hog gym. There was a licked clean dinner plate and a sippy cup being held with 2 hands and 2 lips puckered up to it!! This blue sippy cup with a pink straw had 8oz of water in it. Two oz. were left over from earlier and I topped them off with another fresh 6 oz. before I left. I was hoping for the best since Sloane had already had both of her tube feeds during breakfast and lunch so she would be low on fluids at dinner time. And...............Sloane drank it ALL!!!! 


Sloane Jacqueline drank an eight ounces cup of water tonight with dinner!!! A fabulous day!!

1, 2, 3, 4, 5, ......12!!!!

My apologizes on the technically difficulty in Friday's nights post. Here is what happened after I see that my hubby was holding a milk box for Sloane:

What I see next makes me want to scream! Sloane sucks from the straw and after she swallows, she says "ahhhhh!" It is clear from the milk moustache that she loves it. I review in my head how many times I have tried chocolate milk with no success! Only her father! My daughter will do anything for her daaaaadddddyyyyy! That thought elicits my first internal scream. The next one comes from the fact that obviously this milk is NOT thickened. I am the heavy on this ALL the time. My hubby will treat Sloane to liquids in their natural form which is probably another reason why she will do anything for him. He is the fun one!! My third internal scream comes when I wonder: does she like the chocolate milk, does she like the straw, does she like the milk because it is not thickened??? I have no idea what hooked her?? My final, very loud internal scream comes because my daughter is drinking milk and loving it!! There are many "ahhhs" and "more, more" chants coming from the milk moustache in the back seat! My hubby is on Operation Fluids for the next 48 hours seeing as though he is winning more battles than I am!


And battles were won these last 48 hours!! Sloane sipped through about 1, 2, 3, 4, 5, oz. all the way to 12 oz. yesterday and today. 2 sippy cups! UNBELIEVABLE!! I do think the novelty of the straw has kept her hooked. She is starting to learn that drinks can quench her thirst...I think??? I am starting to learn when she is thirsty because she will ask for "ice" (crushed ice chunks). SO when the opportunity arises I am offering a drink in hopes that she will learn a drink helps when you are thirsty. 


Of course, I tried the chocolate milk thickened in her cup with her straw and she looked at me like I was nuts. I am sure if her daddy does the same she will gulp it all down. For the past 2 days, she has been sipping away at water flavored with Mio drops! I only hope this trend continues. 


So here is the Operation Fluids timeline:
1. Sloane was on 5 ounces of milk 3X a day for the past 6 months. 
2. Then the nutrition clinic dropped one feed making it 2 feeds a day but increased the volume to 6 ounces in each one of those feeds on May 2nd stating that she needed to increase the volume because she would below the appropriate fluid range for her age/size.  
3. Next the ped kept her at 2 feeds a day but decreased the volume back down to 5 oz. each feed in hopes that she would get thirstier on May 10th. The ped's goal is to have her taking in the appropriate amount of fluids, not by tube though...by mouth!!
4. After, the ped calls to check in on May 17th to get a status, she says that we can try decreasing the 2 feeds down to 3 1/2 oz. and she was that does to her motivation to drink. I THINK the lesser volume has helped to motivate Sloane to drink more! Fingers crossed!!!

Operation Fluids

I took a new approach today to Operation Fluids. I decided to fill up the make shift cup with 6 oz. and encouraged Sloane to drink during her morning snack time. It worked. She alternated between pretzel goldfish and sips of flavored water. Four ounces disappeared and the other 2 were gulped during lunch. A banner day!!! Sloane drank 6 ounces all before nap time. This half of cup and straw may just be the novelty that helps facilitate Operation Fluids. 


What happened next will make many of my followers (especially those who know my hubby) laugh their asses off. On the weekends, there are times when I am treated like royalty. Sloane and her daddy drive me to my errands. My chariot!!  Today, I had a nail appt. and as soon as I was out of the car, they drove away. When they returned to pick me up, my hubby jumped out of the car holding something and opened Sloane's door. He said, "she loves it!" What was the it?? It was a Horizon Organic Chocolate Milk 


Box. 




  

A Slurp

Our kitchen has begun to look like a testing lab. Not only are there a variety of sippy cups taking up a large part of my counter top, but there are also mass quantities of flavorings everywhere. We have strawberry flavoring, chocolate flavoring, raspberry extract, vanilla extract, banana extract and every flavor of Mio drops on the market. It is ridiculous. 

It is a testing lab for tasting. We are trying new cups, new straws, and new flavors. And it has been a complete hit or miss all week. The misses were chocolate milk, strawberry milk and a shake made with milk and vanilla ice cream along with the mango/peach JU and strawberry/banana. The hit list is much shorter...water flavored with Mio drops. 

Yesterday, Sloane drank 2 6oz. sippy cups in one hour hanging out with her daddy. Awesome!! Today, she drank nothing. Not a sip. Complete refusal. You never know what you are going to get!! 

Our ped called yesterday to check in (love her!) on how much Sloane is drinking now that the volume of her tubes has been decreased a bit. Based on yesterday's drinking, my answer was all positive. Thank goodness she didn't call today as I was ready to cry by dinner time because not a sip had occurred all day!! Our ped was clear that she doesn't care how we flavor the water or milk. Her goal is to get Sloane drinking more frequently. My hubby and I were not interested in any of artificial milk flavorings, but at this point desperate circumstances need desperate measures. For the 1st time in my life, I have a container of strawberry Nesquik in my house along with any organic flavorings I could find at Whole Foods! Honestly, I could open up a Smoothie Bar for the neighborhood!! Ha

Today was a comedy show. At 5pm, Sloane asked for JU. I had it ready and she snubbed the cup. "No momma, Elmo". So out came the Elmo cup. "No momma, ink". So out came the pink straw flip top for the Elmo cup. And "No momma" again. This time with tears and a fall to the floor. Gotta love the witching hour!!!! Clearly, the cup was the problem and I had no idea if she even wanted what was in the cup. Which was water flavored with Mio berry pomegranate drops. 

We both let go of the drinking thing for a bit. I decided to revisit it at dinner. After all, that would be my last chance! So I prepared the tray. A dish of shells and meatballs, edamame, and cantaloupe. I gently placed the Elmo cup to the right and off it flew on to the floor in exactly 5 seconds with an attitude no less. Apparently, Sloane is too good for Elmo now??? 

I pour the liquid into a sippy cup minus the sippy top and place it on her tray. 

Her interest was immediately peaked. She grabs for it! Ah ha!!! I scoop up the cup and say "momma do". I proceed to guide the cup to her lips and she sips and swallows and sips and swallows and sips again with an occasional "more" weaved in between the sips and swallows. Bingo!!! I decided because I had her.....she was into this makeshift cup.... to introduce the straw. So I grabbed the closest straw I had and held it and the cup while Sloane sipped up every last bit of her water. Ending with a slurp and a giggle!! I can only hope that tomorrow this cup and this straw are a hit again.

Pop Goes The Balloon

After our snuggle this morning, Sloane hopped out of bed and as soon as her feet hit the floor she grabbed the leg of her pj and said "ohh, ohh." I could see that something was stuck. I bent down to feel what all the ohhing was about and sure enough it was her mickey button laying at the bottom of her pant leg. My initial thought was "oh shit, how long has this button been dislodged?" The stoma(hole) can begin to close up in 2 to 4 hours. I didn't go to immediate panic. It was more of mental laying out of the steps that would occur if the hole had closed up some.

I scooped Sloane up, grabbed a syringe and a glass of water to fill the new mickey button's balloon and headed to the changing table. In case you are wondering, it was 7:10am. Re-inserting a mickey button as soon as you open your eyes is not for the squeamish. As soon as I unzip Sloane's pjs, she touches her hole and begins with the ohh, ohhs while I examine the button that has clearly burst. Its balloon is blown apart. That is not concerning as the fact that it is very dried out. Which means it has been dislodged for a while.

Once I have everything in place, meaning the new button has been lubed up and my syringe is filled with water....i give it "please slide in" out loud and kiss Sloane on the nose with a "it's ok, mommy do". The new button glided in without a hitch. We cleaned up the left-over paraphernalia and headed to the kitchen for a breakfast. All by 7:20!!

So Sloane is sporting a new mickey button today which we hope keeps its balloon inflated like this for a while.

My hubby is back home with his girls! He is going to spend the rest of the week recuperating with us. Sloane is beside herself with excitement that her daaaddddyyyyy is home! As am I! We headed out tonight to get some new cups for Sloane. I think she is over the sippy cup trend and needs a new look. I found an Elmo cup that has a flip straw! She couldn't believe it. Im hoping that some new cups will give her a new interest in drinking. Wish us luck!

Royal Treatment

Mother's Day for most of my adult life has been a day I wished away. A day that kicks me in my gut and turns this truly optimistic person into a sour puss. A day that makes me close my eyes passed all the "To Mom" cards at the Hallmark store until I get to the ones I need to purchase. A day that gives me justification to be anti-social. A day that I felt like if I celebrated I was being disrespectful to my mom. Mother's Day is not a day I have looked forward too.


As a mother now, of course, Mother's Day has softer edges and has become a day filled with love. But the ache of not having my own mother never leaves. I remember thinking that when I had a child my feelings on Mother's Day would regress back to what they were before my mom died. I discussed it with a relative who lost her mother and already had children.....she clarified and said it gets better but the sting is still there. And boy, was she right. Mother's Day is a day to celebrate with your own mother when you are a mother seeing as though she is the woman who taught you to be mom that you are. 


My mother not being able to see me as mother, myself, hurts. But the deepest ache is that Sloane won't know my mother. There is a special bond between a mom's mom and their child that Sloane will miss. It's a mom to daughter to grandchildren connection. I long to hear my mother say "Oh, Sloane has Tarra's ??" or "Sloane does ?? just like Tarra did." Those things only your mom will say. As I have said earlier (post: Mom For Rent), Sloane has 2 wonderful grandmothers so she won't feel the ache that I do. 


I did quickly learn last year on my first Mother's Day that what I envisioned Mother's Day was like was wrong. It is not a day of rest and pampering. No-one swoops in and takes your child for you so you can read a magazine, walk leisurely down the aisle of Homegoods without playing the toddler's version of Let's Make A Deal, or shower for the appropriate time. It is a day of celebration and honor, but you are still a mom which is a 24 hour day job/7 days a week/365 days a year.


Now, this Mother's Day wasn't ideal. My hubby is still banged up, so it was me and mini-me for the day! Our day started off with a morning snuggle in my bed, a puckered up kiss on my belly, and an "i juvv you".  I mean how could it not be a wonderful day after that royal treatment from my daughter??? 


A family day planned and executed entirely by my hubby and Sloane would have been dreamy, but nevertheless Sloane and I knocked today out of the park!! We spent the entire day on the road visiting, eating, sleeping, playing and finished it up with a first time experience.....kite flying! We covered the state from one end to the other. It was actually kind of crazy how swimmingly the day went. We both had a wonderful day! The memory of today will help make next Mother's Day be a day I look forward to and not wish away!

The Queen

The queen has spoken! Sloane and I went to see our ped on Thursday and she was thrilled to hear that Sloane passed her swallow study!! We chatted about the changes the food/nutrition clinic made (post: highs & lows). Our ped didnt disagree, she just has a different philosophy. Since she is Sloane's PCP, I am going to let her directives supersede the clinic. 


As a side note, I think it is important to say that no 2 parents are alike as no 2 peds are. They all vary in their approaches to things which is why I think it is important to pick a ped that you trust. For example: 2 of Sloane's playmates are having a different % of milk than she is having and 2 of them are not on vitamins where as Sloane is. I have asked the ped and her choices have nothing to do with Sloane and her journey. They are what all the children in the practice are doing. I picked my ped because I trust her and her approach to child development.


My ped does agree that we can cut out a feed. YAHOO!!! She said at this age, she recommends 8 to 12 oz. of milk a day which Sloane already gets in her 2 tube feeds. 


But she does not agree that the 2 feed's volume has to be increased to make up the missing fluids. YAHOO!!! YAHOO!!! She wants to keep the feeds at the volume they were at/not add anymore fluids by tube so Sloane HOPEFULLY gets naturally thirsty and wants to drink more by mouth. YAHOO!!! This makes sense to me, but I do think it is going to take Sloane some time to associate thirsty with drinking because she never relied on a bottle or sippy cup for nutrition. 


My ped's thought is we need to make her thirsty. We are going to little by little see if decreasing the volume of the tube feeds makes Sloane thirsty. YAHOO!! Fingers crossed


Lastly, my ped said as far as she is concerned, she is ready to make an appointment with our surgeon to have the mickey button taken out, but she will wait longer and see how Sloane does with drinking. YAHOO!!! The thought behind is now that it is safe for Sloane to drink, lets get her thirsty and drink.


I heard the ped's words, but I almost didnt let myself digest them. They were too HUGE to be able to swallow in an AMAZING way of course. ALL HAIL THE QUEEN!!!


It was a GREAT appointment! And Sloane was completely relaxed because no one touched her!! It was a nice way for her to see the ped. 


On the home front, I am sure my body is rejecting itself or something crawled up me and died!! LOL I had a lovely intestinal bug yesterday and today. I couldnt move. I am finally at 9pm/48 hours later feeling better thanks to some homemade chicken soup from one of the aunties!!


My hubby, on the other hand, is not feeling better. In fact, I think he probably feels horrible right now. He had surgery today. Nothing health concerning, but nevertheless surgery. He is recuperating at his mom's (around the corner) because we thought it was best for him and Sloane to have some time apart these first few days. 


So it has been a busy few days in our home!! As always, our circle of trust swooped in and helped make it all happen!! Every time I turn around, someone is ready and waiting to help. INCREDIBLE!!

Down & Out

I am not sure what happened today but I hit a wall. I woke up with body aches and completely exhausted. Sloane had music class this am with cuzzy and that was about all I could handle. I spent the rest of the day going from the bed while Sloane napped and to the couch while Sloane played. I do not think I am getting sick. I am hoping that I was so anxious for the days leading up to yesterday and that the ride was so long, that my body is just worn out today. 


Nevertheless, it sucked. I have not been sick since Sloane was born. I didnt feel this exhausted even after my crash c-section. I actually can not remember feeling this way ever before. I felt terrible for Sloane all day. She was such a good girly, it certainly wasn't a day of learning. 


My hubby came home early. Alleluia! I was counting the minutes until he arrived. I couldnt wait to get into bed AGAIN.


So here I lay wondering how parents who have health concerns care for their children. Take the Bond family whose blog I read (they posted today finally...). Both parents have cancer and they have a 2 year old daughter. I only have body aches and I am out of commission. What do they do when their treatments hit them hard??? I have posted about the Bond family before. Their story is not as unusual as you would think. I have some old friends whose story is quite similar. The mom has breast cancer and the dad has multiple myleoma. They both are in their early 40s and have 2 kids. Here is their story:


http://www.were-in-this-together.org/3/miscellaneous1.htm


I am embarrassed that I am this down and out right now. Who the hell takes to bed when they are a mom of a toddler because of aches and exhaustion? I wish I could move, but I truly can't. I need to rest up as my hubby is having elective, but STRONGLY SUGGESTED surgery on Friday. We have a long week ahead of us. 


Tomorrow, we are off to the ped to get her thoughts on the fluid volume Sloane needs daily. I want to be sure I have her input before we get to far into the regimen of 2 tube feeds a day. I am very excited to share the swallow study results with her and see if she has any creative ideas on how to get Sloane to be less of a camel and more of a elephant who sucks water in by the liters!!

4 Perfect Sips

Well, Sloane did indeed bring it!! She showed everyone in black and white x-rays that she is not aspirating thickened liquids! She did not aspirate her Yo-Baby yogurt (as she did on Aug. 2011's swallow study) and she did not aspirate her JU. Today's results were PERFECT!! 


It is clear that our slow and steady approach is working. Sloane little by little, ounce by ounce, sip by sip, has trained her muscles and nerves to swallow perfectly in spite of the neuro-muscular discoordination she is left with as a result of being born with abnormal anatomy in her throat. 


Before I explain any further. Let me give you some visuals. 

The chair Sloane sits in for the swallow study.

The TV screen that shows her swallowing real time.

Sloane on the screen. The liquid infused with barium glows thru its swallow on the screen after it enters her mouth. We literally watch the track it takes. And today, daddy, mamie and our SLP courtney watched Sloane's thickened liquids travel right into her belly without any of it exiting into her lungs!! 


I, on the other hand, missed all the swallows. Now, before you judge me, there were only 3 or 4 of them. Sloane, as her typical self, was only willing to eat and drink when she wanted to today. The x-ray room isnt exactly low intensity or low aniexty. She wasnt thrilled with her surroundings. With lots of coaxing, bribing, teasing and even some praying. Sloane delivered 4 PERFECT swallows!!! As time was ticking and Sloane was refusing, I was trying all kinds of antics to get the ball rolling so I missed all the swallows. When I asked the radiologist, "did it go where it was supposed to?" and the answer was "perfectly" my eyes did tear up. It has taken almost 22 months to get here! For a moment, I actually couldnt believe it!


What do today's results mean? First and foremost they mean, Sloane is exactly what her name means...a warrior!! In my opinion, my daughter kicked ass today. She showed me that every tear I cried, every night I tossed and turned, every moment I thought why, was wasted. She showed me that she will learn to swallow liquids in their natural form when she is willing, able and ready!


Medically, today's results mean that we can continue our slow and steady approach. We can continue thinning out Sloane's liquids by adding 1/2 ounce of liquid to a packet of Simply Thick every 10 to 14 days. Of course, we are always watching for any visible signs of aspiration. If we see any, we back up to the earlier consistency. We may have a bump in the road the thinner we go, but where we are today feels AMAZING!! We will continue to see our SLP monthly for check-ins and we have a follow-up with Dr. Rahbar in August. I have to assume as long as all goes well with the thinning out approach, we won't have another swallow study until the end of the year. 


Today's results also mean that we have to encourage and motivate Sloane to drink thickened milk as much as we can. If Sloane acquires a taste for milk in any form (flavored, smoothies, shakes) and starts drinking it more frequently during the day (increasing her daily volume intake), we can BEGIN the discussion of taking out the feeding tube in months to come. We now know, at the very least, that her current thickened liquids (6oz. of liquid to one packet of honey Simply Thick) are safe for her so we can begin the big push to get drinking as part of her daily routine. 


Courtney did say that letting Sloane drink non-thickened liquids as a treat is not helping Sloane at all. In fact, over time, it could slow the process down. So moving forward, there will be no more sips of water from our glasses or bottles! New policy in our house, "Sippy Cups Only!" Let's keep the sippy moving forward. 


It would have been awesome today to have seen Sloane drink a thinner liquid than she was used to because MAYBE she would not have aspirated that either??? Courtney actually had nectar consistency of Simply Thick ready to give a whirl, but by that point Sloane was done. She would not take the tiniest sip. No skipping steps for my little lady. We will continue moving slowly onward and upward from 6oz to 
6 1/2 to 7 and so on. 


To my friends and followers, thank you for all the text messages of encouragement for today! There are so many of you following our journey on this blog....it blows me away. We are forever grateful for your support, care and interest in Sloane's progress. Now that cold/flu season has come to a close and Sloane attended her swallow study healthy, I hope to become less red-alert, high-strung, and overly-medically obsessed! Thank you for riding out another "please wash your hands" season with me!! And welcome to, "may I offer you a sippy cup of water?" LOL

Game On

My husband says, "Sloane has to bring it tomorrow! Its On!!!"

I did not cancel the swallow study because Sloane's drips were fewer and fewer today!! So tomorrow morning at 6:30am we will pile into the car to pick up mamie and head up to Children's Hospital. Sloane's swallow study is at 9am.

As I have said in an earlier post, a swallow study is non-invasive and real time. Sloane is put in a car seat device, barium is added to anything she eats or drinks, and x-rays are taken while she swallows. We watch it real time on a tv above Sloane's head. If anything slides thru the cleft's area into Sloane's airway and lungs, we can see it immediately. The foods or liquids glow because of the barium. There is no waiting for the results. You see them in black and white on the screen.

Sloane has not had a swallow study since August of 2011. Dear I repeat myself again and say it was a disaster. Sloane, unknown to me because there were no visual signs, was aspirating everything that hit her lips besides solids. She basically took one spoonful of yogurt and on the screen we saw it..she swallowed and 80% of it went right down her esophagus and 20% right into her lungs. Mamie and I were speechless. Her cleft had been closed 5 months earlier so I assumed we were making progress. Not so much.

I am heading into tomorrow cautiously optimistic.

I am hoping that the swallow study shows that Sloane can safely drink the thickened liquids that she has been like her JU, yo baby yogurt and ice cream.
I am hoping that 6oz of liquid to one packet of honey consistency is gliding right past the cleft into Sloane's belly.
I am hoping that the 6 months of swallowing therapy we have done and the slow and steady approach is working.
I am hoping all of that because if that doesn't happen I am afraid my husband is going to be picking me up off the ground again the same way her did back on July 24th, 2010 when the NICU doctor said Sloane had pneumonia at 4 days old.

My assumption is if thickened liquids show to be safe for Sloane tomorrow and there are no signs of aspiration via x-ray, we can continue thinning down liquids on the same slow and steady regimen for months to come. My assumption is if thickened liquids are not safe for Sloane tomorrow, there will a phone call to Dr. Rahbar, a detailed conversation, some tears, lots of quiet and maybe even a meltdown.

For those of you who have the blog emailed to you and are reading this on Tuesday, the swallow study already happened this morning.

Mommy's Post

Here is a post that is completely unrelated to Sloane, motherhood and the teeny tiny birth defect that creeps into our daily life. In spite of counting how many sips are happening daily, I do have time to be just be me. And sometimes there is a minute a day, to be (the post: "the other girl") me!! 


1. A college roommate of mine has a blog called "mama says what" that I feature in favorite blogs line-up. She posted about a beauty product that she loves. I have always trusted my friend with her beauty tips as she has been in the spa/beauty business for almost 20 years. There was a time when she gave me: her mascara only, dove soap using, Lubriderm face moisturizing friend...samples before they hit the shelves. Now, that I am a bit more seasoned in my beauty regimen I would dream for those little bottles.  Here is a link to a self tanner type product she is loving!! I'll be ordering mine soon. 
http://www.mamasayswhat.com/2012/05/04/best-fake-tan-per-fekt-skin/


2. I have a new favorite show. It is The Conversation with Amanda DeCadenet. It is on Lifetime on Thursday at 11pm. Obviously, I dvr it since I can't stay up past 10 most nights. It is a very candid show that puts familiar faces in realistic views.

http://www.theconversation.tv/

3. I love to read! I have always loved to read. Some summers, the aunties and I would read a book a week. Most books were a version of a love/loss/love again story. Over the years, I had grown very proud of my library at home. It almost become a display piece. I truly hadn't had time to read until lately. As soon as I opened up the pages of an Elin Hilderbrand book last month, I was reminded why I love to read. 


This past week, I decided to give in to peer pressure and read the NY Times Bestseller 50 SHADES OF GRAY (the first book in the trilogy). I usually do not read like to read the "in" books. But, all I have to say is OMG! In all my years of reading, I have never read a book like this. I understand now why it is categorized as erotica romance! I heard it referred to it, on the radio, as mommy porn? Well, whatever you want to call it!! One thing I know for sure is the intimacy level has been raised in many homes because of E.L. James narrative abilities! I can feel myself blushing as I am turning the pages.
http://www.eljamesauthor.com/books/fifty-shades-of-grey

Drip & Snort

Where has the time go? I have been MIA from the cyber world since Wednesday. Sorry about that. I could tell you that I have been beyond busy with Sloane and life, but that would be a 1/2 truth. 


The whole truth and nothing but the truth is: we have been busy since Wednesday. Here is the rundown:
1. a successful play date at home
2. a dance party 
3. some mother's day shopping
4. a visit to the nail salon
5. breakfast on the water
6. outdoor nature walks
7. an ice cream date
There is half the truth. 

The other half of the truth is that Sloane is congested with a runny nose. I didn't want to put it out there because once I said it..it would be true. How crazy is that. "The machine" used a phrase this weekend that I loved (she has lots of them). Anyhow, it was "???? has peter pan syndrome (living in never never land)" I had Peter Pan syndrome since the first drip, drip , drip on Thursday. I guess I thought if I didnt admit it, it wouldn't be true.  So here is goes:                  Sloane has a small cold. There I said it!!

Can you believe it?? After I celebrated the end of cold and flu season, after I sent a card to our ped saying yahoo, and days before the swallow study. A cold!!! Obviously, we need Sloane at 100% to have an accurate swallow study so I am going to wait until tomorrow to see if we should cancel and reschedule it. 


It is actually comical....not a runny nose or congestion for 21 months and just days before the VERY IMPORTANT swallow study...a fucking cold. Now, could it be allergies? Yes, it could be but nevertheless because of this drip, drip, drip and snort, snort, snort.....Sloane is not at 100%. So what to do about Tuesday????


I would be lying if I said this drip and snort combination was affecting Sloane. It isn't. She is happy as a calm. Her sleep was off last night with some "mommas, ups, daddys, and i want yous," from 3am to 4:30am last night. But aside from that she has been her little old self. I, on the other hand, an quite proud of myself for being so calm about this little germ. A year ago, even months ago, I would have been a nervous wreck!! 


Is it a huge deal to reschedule? No, not at all. I am sure they will fit us in before mid-June. What is it: another lesson in parenthood. A drip that reminds us there are no plans written in stone, a snort that says there should be no ink markings on a calendar, a drip that reminds us there are no textbooks answers, and a snort that says parenthood is full of surprises!!!

Highs & Lows

So here is the scoop from today's appointment the nutritionist and g-tube expert in a Q & A form:

?: Can the feeding tube timing/rate be sped up?

A: No, the timing/rate of the feeding tube CAN NOT be sped up at all. We are stuck to 35 minutes. So tonight, I bought Sloane some Play-doh, Elmo sticker books and tracing cards as special treats only to be used for high-chair time. Hoping to pass the time bye!

?:Can we drop down to 2 g-tube feeds daily?

A: Yes, we CAN. Sloane will only have 2 from now on. The 2 can be whenever I choose during the day (breakfast, lunch or dinner)

?: Do we need to make up for the 5 oz. of milk we are eliminating when we drop that feed?

A. Yes, we do but not for nutritional value. Sloane's oral diet is FANTASTIC. She is not lacking in any food group! We need to make up the 5 oz. of milk we are eliminating for daily fluid intake. 

Babies and toddlers require a certain amount of fluids daily. There is a high range and a low range. Somewhere is the middle is the place to be. High water content foods help with that daily fluid intake amount, but it truly needs to come from liquids. There is a mathematical equation based on weight, age, and diet that gives the high and low range. Currently, Sloane gets about 20-22 ounces of liquid daily. With dropping a feed, she will be down to 14-16 ounces. Sloane needs SOME of those 5-6 oz. added back into her diet. 

?: How will we get SOME of those 5-6 oz. back into her diet?

A. We have 2 options:

1. Sloane can drink ANOTHER 4-6 oz sippy cup of thickened liquid daily (water, JU, or a homemade smoothie)

2. We can add 1-2 more ounce of milk to both tube feeds each day bringing them from 5 ounces to 6 or 7 ounces. 

?: Can Sloane drink her milk g-tube feeds by mouth?

A: Yes, she can if she wants to. She has not acquired a taste for it. 

We are hopeful that the thickened milk smoothies (they have to be thickened too) will be a hit. The more Sloane can drink safely by mouth, the less that has to go into the tube. The goal 

IN TIME/NOT VERY SOON is for Sloane to safely drink all her liquids by mouth. 

?:How do we feel about these changes:

A: We are excited to give Sloane one normal natural mealtime during the day. The big push is going to be the sippy cup. We prefer for her to take in those extra ounces by mouth rather than tube so the my job for the next few weeks or months is going to LIQUID PATROL. 

?:What is your plan now?

A: First, we will spend the next few days making the changes. Dropping a feed, pushing a sippy cup, counting the daily ounces, and if need be increasing the volume of the 2 daily feeds. 

Next, we review the results of the swallow study on Tuesday and hope that it shows in black/white x-ray that Sloane is NOT aspirating her thickened liquids so we can turn her into a LUSH!!

Lastly, I made an appointment with our ped for next Thursday to get her thoughts and seal of approval on the plan!

?: Do you have anything else you want to say?

A: Yes, all this counting of ounces/mls. of liquids is RIDICULOUS. I mean, seriously, please tell me of a mom of a 21 mouth old that force feeds their child liquids all day!! When a normal child doesnt finish a cup of milk/water, that mom isn't holding the child's nose and forcing the liquid down their throat. I realize Sloane has a gtube BUT she doesn't have it because she is a poor eater or malnourished? In fact, as of today she is on the 95% for height and weight. She was 28 lbs and 33". 

All this counting is too calculated/medical/scientific if you ask this mom. If Sloane didn't have a tube, would I as a mom be counting every ounce that went into her and if she was a few short, what would I do?? Shove it down her throat?? NO!! I have friend's whose children are freaking camels and they sleep at night. Me, I am obsessed with how thick, how much, how many, and how more Sloane can swallow!!

Today, whenever the nutritionist said to keep track of Sloane's wet diapers daily. I almost fucking lost it. Are you kidding me??? She is 21 months old. She pees more that I do!! And her diapers are lead sinkers! We are talking about 2 or 3 ounces here not 15!! I understand the need to do the math, put it in the computer and compare it to the norms but it is obsessive!! 

I remember in the NICU I was obsessed with what Sloane weighed daily. Our primary nurse took the scale out of Sloane's daily routine because I was fixated. This reminds me of that. She said, at home, you wouldn't be weighing Sloane everyday. You are only doing it because she is here in the NICU and we have to. To that I say, if Sloane didnt have a gtube no-one would be adding up the ounces she drank everyday. They are doing it because they have to!!

?: In closing, we talked about highs and lows, what was the high of the day and the low?

A: The high was ELMO!! Mammie bought Sloane a huge Elmo balloon at the hospital and Sloane dragged Elmo around the house all afternoon with her. She is in love!!

The low was when Sloane tossed some nice, ripe avocado across mammie's dining room. The chunk landed perfectly smashed on her beautiful, custom, shimmery drapes! I could have cried. 

Twist & Shout

I am not sure who had more fun at dance classes....me or Sloane!! The first song Ms. Sandy played was "Funky Town". I could tell instantly that we were going to get along.  I mean who doesn't like to dance to that song??? I was dancing like the good old days! The days when me and the aunties danced our way through the city!! It felt good to let loose some. I do wish I had my partners in crime with me to bust some moves. Ha! 


Sloane was a bit shy at first. She was standing proud as a peacock in her tu-tu, but not moving a muscle. CRAZY?!? as that sounds. But once Ms. Sandy played The Fresh Beat Band, Sloane got down to business....bopping, jumping, twirling, singing and clapping. Ms. Sandy had won over a 39 year old wanna be and a 21 month old newbie in about 5 minutes!! It was a great day! Days like today make days like tomorrow easier to handle. 

Tomorrow is our appointment at the gtube/nutrition clinic. I am hoping that Jenny, our nutritionist, can help tweak the feeding tube feeds (post:105 minutes of torture). More to come. Whatever recommendations Jenny gives, I will call and confer with our ped to get the final stamp of approval on before we proceed. 


I do feel like we were just at Children's AND we have to go again next Tuesday for the swallow study. Thank Goodness we have adding some twisting and shouting to our weekly schedule!!