It's a Bird, It's a Plane....It's a Lion!!

There is still a lion around and I am looking for a lamb! This household is very tired of the damp, chilly, rainy, cloudy, raw March weather that we are having in the end of April! It made me sad that Saturday was such a wash-out....we weren't able to participate in the March for Babies walk which supports the March of Dimes. Team Sloane had a contingent of familiar and new faces registered to walk...we were excited! But the weather on Saturday am invited anything but outdoor activities. It was weather fit for a duck or rather a lion!!

We were able to raise over $1500.00 once again for the March of Dimes! I am not at all blind to the fact that it is because of Sloane's story and the love of those around her that we are able to contribute to March of Dimes the way that we do each year! We are so appreciative of our family and friend's donations.

I just put Sloane down for a nap and I couldn't help wondering what we will be doing next Monday at this exact time. Will I be resting with Sloane in recovery or will she still be in surgery? We will not find out the time until Friday afternoon. To say that I am all consumed/self-absorbed and in complete defense mode (all descriptions that I do not like to carry) about cleft surgery #2 on Monday is the freaking understatement of the year! I don't feel as embarrassed as I did when a professional told me  today that this is all to be expected and its post traumatic.....Monday's upcoming surgery has triggered some emotions, from almost 4 years ago, fit for a lion!! 

I decided it would be best to keep myself busy...or try to keep myself busy for the next few days! I found over the past few days that downtime isn't exactly what I need. This lioness used quite a bit of Kleenex when all was still and silent. 

One thing I decided to do was organize the pictures from our trip. I miss developing film and having pictures in hand. All this technology has made me lazy. I would never leave a roll of film laying around...yet, I leave pics and movies on my cell and my PC without a thought. So this week, I am going to try to organize our Turks and Caicos pictures so we actually have something to show Sloane! I have all the photo albums my mom made of events when we (Chunka and I) were young and there is something very sweet about looking through them. I would like to give Sloane the same in spite of the technological world we leave in now!!! Here is a teaser for one of my dearest followers who has been asking me for some pictures of our Caribbean dancing queen!

Ain't no ocean big enough!!

Twinkle Toes!

Nothing like a pair of yellow shoes to bring out some sass!!

The first umbrella drink.....if she is anything like her momma, there are many more to come!!

As you can see....a tan was not an option, as far as I was concerned, for Sloane!!

Double Duty

Sloane, like most 3+year olds, has her moments that make you cringe and bring out the not so great parenting approaches! There are 2 of those moments that you can count on to be ugly....the first one is when Sloane is overtired and the second one is when Sloane has to take medication.

This past week we have battled with getting the Amoxicillin into Sloane twice a day. It is a battle of wits, compromise, bribery, negotiations, threats and at times physical. Sloane can be and usually is violent when she has to take medication. To say it is exhausting is an under statement. A power struggle at its best!

It is no secret that when Sloane is sick, I am not myself. I am on edge and distracted by the illness at hand. The "its time to take your meds" event make it even worse. We have been given advice by other parents, professional doctors and researched the cyber world....but the no matter what approach we take, it doesn't matter med time in our home is a Jerry Springer moment.

This week, I am stuck between the med episodes, the prep for The March for Babies walk on Saturday and Sloane's surgery. I am not myself at all. I am trying hard to balance it all in my head but all 3 are emotional experiences that take me off my game and make me anxious.

I can't say I hate the Amoxicillin as much as I have in the past. I notice that Sloane is coughing more this week and her cough is MUCH looser, MUCH juicier, MUCH noisier. I think the Amoxicillin may be working double duty. Clearing up the ear infection and breaking up some secretions from her aspirations that have been hanging out in Sloane's lungs.

I am sure that Sloane's inhaler has kept the secretions quiet all winter, but we all know that they are there! This little 7 day round of Amoxicillin may have just given them a little wake-up call....up and at 'em.....out you go....don't let the door hit you on the way out....HA!

We are looking forward to the March For Babies on Saturday! A very special day for us. In years past, we have seen some familiar faces for our NICU stay which is very nice! To think that almost 4 years has gone by since we started this journey is remarkable! I was just telling a friend yesterday that 4 years is a long time! I am thankful for how far we have come....I used to worry that Sloane would be in preschool with a feeding tube! But I am also in reflection that we are still on our journey 4 years later. Some days, I cant believe it.

This week, a few people have said to me.....will this be Sloane's last surgery??? And the answer is: We hope so!

Fun Had By All

First, let me apologize for the technical difficulties we are having here at A Sip Of Heaven! Friday am only half of my post about our vacation was sent out in the blog blast to my loyal followers and then Saturday am, a very old post from September was re-sent! My only excuse for this is that I have been blogging from the iPad lately and there are some very small fingers using it when I am not....fingers that end up touching pages they shouldn't!!! 

So here it goes again.......

I would call it a complete success! Sloane's first vacation gets a 12 on a scale of 1 -10. From the easy peasy departure flight to the long winded US Customs security mad dash home. We certainly made wonderful family memories. 

I am sure some of the passengers on our flights thought we were nuts when we Clorox wiped Sloane's entire seating area and sprayed a bit of Lysol for good measure! Thankfully, The Today Show had just aired a feature on flight travel secrets.....warning passengers that nothing on a plane is cleaned in any way in between flights or at any time. YUCK! Sloane settled into our flight without a concern. She was in awe! In fact, I was concerned that she may be interested in flying a bit more than her father was willing to pay for!!! We arrived in Turks and watching Sloane walked off the plane into the Carribbean air and tropical air was so fun!!! I even took a picture to text back home when..... there clearly were signs stating NO CELL PHONES allowed! The not so friendly police officer didn't exactly share my excitement over seeing my daughter for the first time on a tarmac. 

Once we arrived at Beaches, it was vacation, vacation, vacation!! There were water slides and more water slides! Ice cream for lunch! Sand castles built for princesses. Swimming that made the tips of fingers wrinkled. Photo opportunities with characters larger than life. And smiling that made your cheeks ache. 

Turks and Caicos is an island that is near and dear to me and my hubby. We both had visited it in the past separately and together. It is one of those places for us that we dream about moving to. The days when we say....forget the easy continental USA/let's move to a different place.....it's the let's go big or go home move!! One of the reasons that we picked Turks as our family vaca location! 

Our days were the same....Sloane woke up rearing to go and didn't stop water sliding, lazy rivering, splash pooling it, or floating until she collapsed after lunch, she powered napped in the afternoon and then we beached it until dinner! She filled in the gaps with tropical drinks topped with umbrellas and high fives with Elmo! There was a night time parade that brought tears to my eyes! And breakfast with all the Sesame Street characters was a blast! Tea time with Abby and Elmo was a family event :) Sloane got some island braids and a purple sparkly tattoo! It was a 12 on the scale of 1 - 10!

Did we worry about Sloane's surgery? No. Did we worry about Sloane's cleft? No. Did we wash Sloane's had a hundred million times??? Yes. I happen to think that planes are disgusting and load up on echinacea before I get on one to help ward off any unnecessary germs. My hubby travels weekly so I do know what a trip on the plane can bring home! I did think about Sloane's exposure to jetliner germs and it's timing in regards to surgery. But knowing we had 3 + weeks in between the 2 monumental events felt safe.

My thoughts weren't frivolous. Thursday night from 11pm to 9am, Sloane cried all night, complaining of a sore throat. She had had a runny nose all week so I thought....post nasal drip drying her out or strep throat! We made it thru the night without sleep and waited 
eagerly for 8am to grace Dr. Reibman without presence. It cracked me up a bit really....Sloane always seems to get sick at the most in opportune times. I was hosting a double birthday lunch and some egg coloring for the girlies in my family on Friday. My fabulous niece turned 3 on Friday and Titi turned a new double digit on Monday. We were having a girls day and then Sloane was scheduled for some 2nd shift egg coloring at nonni's. All events canceled by 7am on Friday am! 

While waiting for our drs. appointment, I contacted my go-to mommy with our sudden illness onset. She alerts me that it could be Sloane's ear?? This is surprising as we have never had an ear infection in our home. Apparently, unbeknownst to me, the throat and the ears and the pain can all get mixed up in a child's thoughts.  And sure enough, as my go-to mommy knows, Sloane had an ear infection. My poor love bugs ear had a lovely pool of orange goop sitting at the bottom of it when I finally looked!! Our visit with Dr. Reibman is always eventful. Sloane was asking in he middle of the night to see her if that gives you any idea how I comfy she is so she was quite happy to be sitting in the sailboat room awaiting her arrival. Sloane was clear to tell the doc exactly how she wanted her to touch, or rather not touch her hurting ear. Dr. Reibman just laughs and looks at me with a " oh dear...she is a bit of something" glance each time we spend time with her. 

We came home with a round of antibiotics and some ear drops to help us pass the time until Sloane's surgery! Not such a bad ting really....I don't mind killing some of the germs hanging out in her lungs too before surgery :) 

A Discounted Rate

As Sloane's summer clothes are piled up on the dining room table awaiting their placement in her suitcase for Turks; I decided to make arrangements for another kind of over-night stay we will be having. I called the Best Western in the Longwood Medical area and reserved our room for Sloane's cleft surgery. I had said I was going to do this last month as we drove by when we left our appointment with Dr. Rahbar and never did. Call it denial, call it procrastination, call it refusal....whatever you like, but on Sunday, mammie called me on it. She reminded me that I had said I was going to book the room last month and I'd better before I couldn't get one.

You wouldn't imagine that a hotel next door to a medical center would get sold-out, but it does.  We have stayed here before...in fact, my first time was over 18 years ago when my mother was an oncology patient at Brigham and Womens. There is something very convenient about not having to get into your car to go somewhere to shower or sleep. I like it.

Sloane will be spending at least 2 nights at Childrens for her surgery and we will need a room to re-charge our batteries during her stay. This is not to say that she will ever be left alone. She wont. We will switch off for showers, food and sleep. I ALWAYS pull rank over the ICU nights. Leaving Sloane to do anything is not an option. The minutes in the bathroom feel unnecessary at times.  

Truly, our nicely appointed double queen bed room at the Best Western wont get much use. It'll be a drop off point for our suitcases and a place to splash water on our faces. I am not even sure the bed got used the last time Sloane was inpatient at Childrens. We have family a short drive away from the hospital and I tried that once, but truly the minute I got in the car to make the 10 minute drive I wanted to throw up. It felt like I was years away from Sloane. I cant do it.

Life stops when there is a hospital stay. After Sloane was in the NICU for a few weeks and was stable, I started forcing myself to go home at night. The routine was the same. My hubby would come after work and we would stay until 10pm or whenever Sloane fell asleep and then we would drive home, eat, shower, set the alarm to call the overnight nurse at 2am to check on Sloane and then re-set the alarm for 4:45am to make it back for the 5:30am feed. There was sleep and there was incredible guilt. I can remember doing normal things like going out to eat and feeling like the whole world was staring at me because I left my child in the hospital to have a life. Balancing our 7 week stay in the NICU emotionally was challenging as a new mom. One piece of advice I tried to hold on to, when I left, was that I was leaving my newborn with the most qualified babysitters ever....nurses. That did ease the irrational thoughts at times.

So, our stay at the Best Western has been booked. It'll be the place we hang our hats (ha)
May 5th -7th. We have a "my child is a patient" discounted rate....isn't that the exact type of discount everyone has ever wanted!! not!
 Can't say I am looking forward to it at all......What I am looking forward to is seeing Sloane's face on Saturday am when she steps on the airplane for the first time! She is spewing with excitement about her vacation. Telling anyone we see that she is going to see Elmo. It is quite adorable!! Sloane's level of zest is very high to begin with...she zips around her world and her energy is almost infectious. I have seen grown men become completely subservient to her ideas.... (poppie, who is a few years shy of 70,  did a sommersault on Sunday in honor of Sloane's version of fun and Shu, who is a bit beyond 70, has been adorned in play jewels and had his teeth brushed with soap because he was caught up in a moment with Sloane! LOL! My daughter approaches everyday life with a whole lot of spirit...watching her on this vaca will be memories of a lifetime....