It's A No Go

This is what I love about modern technology! It's 3:21am and I am able to let you all know that we are not going to Children's for our swallow study in 7 hours. Sloane's temp continued thru the night and a special guest also arrived. Drumroll please........the croup wheeze!

In my expert mom opinion, I would say that Sloane could have croup.  We have seen it before or rather heard it before. So after our 2am dose of Motrin, we took a walk around the yard to look at the stars, called the on call triage nurse, fished out the "for emergency use" steroids dr. Reibman gave me and waited. The triage nurse didn't trust my diagnosis at first so we did a quick stint in our steam room aka master bath before she called back and gave me the go ahead on the steroids.

An hour and half later, Sloane and her father are trying to get back to dreamland and I'm on the couch pretending it's 9am! I emailed our team at Children's at 2:30am to cancel our appointments today and ask for them to be rescheduled as soon as possible. Since Dr Rahbar only sees patients on Tuesdays,
It might be interesting.

Please indulge me in a laugh at how nuts it is that Sloane hasn't been sick aside from her pneumonia in December all season, but gets croup??? Or something respiratory the day before her swallow study!!!

Keep It Moving

Sloane's temp continued thru the night and gained some momentum this morning. And so off the ped, we went. Here is the thing, my ped,  who we love, was on vacation AGAIN. It is nuts. In the past 6 months, the 2 times I have needed her she has been gallivanting to who knows where???

We saw a very nice, very new doctor today who assured me that Sloane's temp is related to a variation of a cold virus. Now, here is something I didn't know......children get temps with colds. I questioned this very new doctor and she did in fact say that yes, they do. And they can rise all the way up to 104 with just a cold. to be honest, I didn't believe her and will probably check this out with Dr. Reibman. I also had an issue believing her when she said that Sloane's lungs were clear. I've heard that one before while Sloane suffered thru un-diagnosed pneumonia for 3 days.

Well, we stayed home all day, drank lots of fluids and layed low. It was a cozy day. Sloane didnt get much worse. She has gotten more nasally and a bit more hoarse. I do think its a cold with a fever??? And I will be cautiously optimistic that it stays as that......

After much thought and lots of listening to Sloane's breathing and her swallowing, we have decided to follow thru with tomorrow's appointments unless Sloane gets worse over night. As you are all reading this post in the morning, the 4 of us (momma, daddy, mammie & sloane) will be strapped in the car and en route to Children's for Sloane's swallow study.

To Be Continued............

Could It Be???

Yesterday, Team Sloane walked in the March for Babies. The March of Dimes is a charity near and dear to our hearts as I have posted many times before. It was a very fun and moving day. This year, Sloane wore a Team Sloane tee-shirt, walked a small amount of the walk rather than riding in her stroller, and finished the walk on her feet. As she walked up the hill, we all (we had a team of 15 walkers) concurred that seeing her walk through the finish line was quite an accomplishment. We have come so far in our laryngeal cleft journey.

On Tuesday, we will have a swallow study and see Dr. Rahbar. Our house was buzzing about it tonight and then something brought the buzz to a quiet hum. I said out loud what I had been thinking all day. "Sloane feels warm." My hubby agreed and then said what I had been thinking all day. He thought she felt warm all day. And then we confirmed that Sloane has a temperature. For Sloane, to be sick this week is not ideal considering what Tuesday is. But, I cant remember exactly and dont have the energy to go back and find the post....but didnt this happen before. Sloane got sick the week of a Dr. Rahbar appointment????

What is making me even more sick than the thought that Sloane could be getting sick is that I have been sick. Me, the momma, for the 1st time in 4 years had some kind of nasty something since Thursday. I still havent figured out what it is other than a gross, chunky, cough and runny nose. No other symptoms. At first, I thought respiratory infection, then I thought allergies, then I thought cold, and now I think who knows. I fought it with over the counter stuff for now and feel better. But folks, the prospect that I have maybe made Sloane sick makes me feel like shit.

Now, could it be a spring virus that she picked up anywhere...maybe at the preschool we visited on Thursday?? Yes. Now, could it be something she picked up from me the momma??? Yes. Now, could it be the big P which is really a silent N??? Yes. 

I am anxiously awaiting tonight's activities. Sloane slept terrible last night which was the first indication to my hubby that we may have an issue. I was assigned to the couch to cough my way thru the night without making anyone else sick so I missed all the action over last night. I heard early this am that it wasnt a stellar night at all. 

I gave Sloane some Motrin tonight and Im hoping she will sleep. I, on the other hand, will continue to rationalize with myself that tomorrow is Monday so Dr. Reibman is in if we need to see her and if we have to reschedule the swallow study it is ok and that the preschool must of had a virus floating around because I could never make my child, that is germ protected by way of hand washing, sick.

A Parting Gift

Next week at this time, we will be gearing up for Sloane's swallow study and our appointment with Dr. Rahbar. I announced yesterday that during the swallow study, I am going to try to make Sloane perform on demand. I want her to take a huge gulp so I can watch the path it travels after the swallow. I am going to ask her to swish so I can see what happens when Sloane tries to manage that large swallow after the swoosh. And, lastly, I am sure we will all prompt her to do the normal "little sips" routine. I decided I want all the information I can get.

Mammie and my hubby think if all goes well, Sloane will get discharged from Dr. Rahbar and her swallowing therapy. There is a part of me that thinks that may happen and the prospect is exciting. At the same time, there is a part of me that hopes Dr. Rahbar is thrilled with her progress, but wants to see her next year again. I want his safety net!

I am not big on letting go. As a matter of fact, I dont let go of much. Letting go of Dr. Rahbar would be scary in regards to the "my child has a laryngeal cleft" voices in my head. I'd like to have a check in with him yearly for the next 10 years. LOL

Each time, we went to see Dr. Rahbar from when Sloane was 6 months old, we walked past a Boston~ish gift shop. I told myself on our 1st visit that I would buy myself a sweatshirt when our time at Childrens was over. Each time I walked passed them in the windows, I reminded myself that one day I would buy one of those Boston~ish sweatshirts as a reminder of our laryngeal cleft journey.

I wanted the sweatshirt in the spirit of an old college type sweatshirt. The one you wear so much for so many years that it feel like butter when you have it on. Thanks to my hubby I know what that feels like. I dont have one from my Alma Mater, but frequently steal his. As a mom of a Children's Hospital child, I wanted something to remind me. Each time I put it on, I want to be  reminded of where we were, how far we came, and why we are who we are as a family.

Playground Hell

There are a lot of things your "mommy" friends dont share with you about motherhood. Many of them are on a need to know basis, but there is one I am facing daily that I wish I had known. Because now that I am yip yapping about it, all of my friends are casually remembering their experiences.

I, my dedicated followers, am stuck in my very own playground hell. Sloane wants to do nothing else than go to a playground every day. The asking and then demanding begins before breakfast has occurred and continues until its dark out.

Now, I am all about outdoor play. Fresh air is good for the soul. I am the person who opens her windows every morning while dew is still on the grass. I am the girl who drives with her window cracked to hear sniff in the freshness. I will sit outside to just breath in the fresh air "feelin good' juice. But I am not the mom who wants to be at the playground every day. I feel badly saying that because Sloane is just like me. She LOVES being outside! But, I haven't figured out how to balance my stay at home mom duties with all the outdoor play. When I am in the house, I'm like a chicken  with its head cut off.

Sloane is addicted. She screams when we drive by playgrounds and is in her glory when she is running around one. There was a day a few weeks ago that I stopped at 2 playgrounds during the morning for a treat! While Sloane is running around getting high on the fresh air life, I am thinking of the laundry, cooking, cleaning, phone calls, and odds and ends that need me to be in the exact opposite of where I am.....inside the house!

The scene when Sloane has to leave the playground is hysterical. I give multiple warnings, but they never matter. Sloane can become the exorcist upon exiting the playground. There is never enough time there. She would do all her business there if she could....eat, sleep, potty! Now, that the Spring weather has arrived, I am officially living in a playground hell.

Back to Normal

I am sure that everyone noticed it took me longer to recover from being away from Sloane than my actual time away seeing as though I haven't blogged in 10 days! We did, in fact,  accomplish 4 days away from her without any major catastrophes. The truth be told, the getaway was just what I needed!

Sloane, according to all 4 of her guardians, was wonderful. I believe them to a certain extent, but I know my daughter and know that she can be a handful so I'll assume there were some power struggles. Certainly, not when her Pinkberry was covered with chocolate M&Ms instead of just strawberries, not when she had cookies and a banana for breakfast, not when she got to do potty outside at the playground instead of leaving to find a real bathroom, or not when she was being swung "lalala" across the house for hours. Sloane had a blast and I am sure she went thru some withdrawal when plain, old, boring, scheduled momma came home!! LOL 

I cried. I cried on the runway. I cried on the plane. I cried when I saw texted pictures of Sloane while we were away. But I enjoyed every ray of sun that I soaked in, every page of my book I turned, every cocktail I sucked down and every minute of quiet I had...... 

And then when we got home and pulled into the driveway, I hopped out of the car with delight. Sloane and I ran towards each other like a scene from a movie and then she ran right passed me, jumped into her father's arms and basically didn't even look at me for about 2 minutes while she stroked his face and told him how much she loved him. That's when I really teared up!! lol They are in love!

The past few days have been catching up and gearing up! Catching up on stay at home mom duties and gearing up for Dr. Rahbar's appointment on April 30th. As we get closer to the day, the circle of trust gets more inquisitive and tend to become more interested in the day to day events that have been occurring. 

I was looking at Sloane last night and thinking about the swallow study. This will be the first swallow study that we can communicate with Sloane about what is happening. I am excited (I think) for that. There have been swallow studies when Sloane hasnt preformed/drank because she didnt understand what was happening. In 2 weeks, I am hoping that wont be the case because I will be able to explain to Sloane what I need her to do. 

The lack of little sips continues and so do the silent aspirations. We had dinner with nonni and shu last week and without a sound loud enough to hear above the buzz in the restaurant, Sloane was red faced and glossy. Nonni asked what was going on. Without any hesitation, I said Sloane aspirated. There were no warning signs, no flashing lights, no public service announcements.... just a aspiration and silent tiny gasp for air. On April 30th, I will watch real time to see exactly what route, after they are swallowed, these big sips take.

Let Go.....

Yesterday, I organized Sloane's closet 4 times and did about 8 loads of laundry. What that means is that I am feeling out of sorts. Some people clean, vacuum or pace when they are out of sorts. I fold clothes. I organize clothes. I rehang clothes. I am getting more out of sorts as the week is going on. Ill be washing the neighbor's clothes before Saturday gets here...lol
I sent the manifesto out and have already started working on my addendums. Nuts, I know!!!

I did take a break from all my unnecessary worry today. We had a family trip to visit a preschool. It was the first one on our list. Sloane was beyond excited. She thought she was staying at school. As a matter of fact, before we left she pitched a fit because a bus wasnt picking her up! Once, we arrived. She was engaged and ready to jump in. Which were all good signs. We watched, we sang, we listened, and then we play outside. Once our tour was over and we had to leave, Sloane lost her shit. LOL  I actually felt badly that I dont have her enrolled in school already. It broke my heart. The ride to our stop, mammie's house, she kept saying "I wanna play with the kids."

Leave it to my father, who is the king of busting me up, to put it in the right words after I tell him about Sloane's experience at school. "Tarra, she is dying to get out of your house. She is saying get me out of this place. Let me go." As he was saying it, I was laughing so hard I was crying and he was roaring. It is true. My daughter is ready to leave the nest. LOL 

The search continues over the next month. I have 3 or maybe 4 places floating around in my head to see before I can commit to a preschool. 

On the laryngeal cleft front, Sloane is frustrating me. I know that doesnt sound great considering how our journey began. Blessed isnt a big enough word to describe how I feel that Sloane is drinking liquids in their natural form. 

Lately, though, as she drinks she is taking such big, continuous sips that she clearly aspirating to the point of losing her breath. She just keeps sucking and sucking without taking her time and then the swallow is too big and cant be controlled. I can see it happening and find myself pulling the straw from her mouth. I, also, find myself raising the pitch of my voice when it happens. Which isnt ideal. We keep reminding her to take her time, take small sips, slow down but that isnt happening. I am getting frustrated and a tiny bit nervous that all those big uncontrolled swallows will pile up in her lungs. The appearance of her face afterward is a dead giveaway. She is flushed, eyes watering and gasping a bit. It is very frustrating to watch. 

Panic Has Set In

The countdown has begun. We are leaving for our trip on Sunday. Panic has set in for both of us. My hubby is very used to leaving Sloane for days at a time, but he isn't used to doing that without me here and I have only left Sloane for 2 separate overnights without him with her. Panic has set in for us both. We spent time last night discussing whether we should take Sloane with us and beg "the machine" to join us too as another set of hands so I could still attend all events with him (children aren't allowed).  But in the end, we rationalized that we needed to leave Sloane home.

I have been writing the manifesto (my dear friend entitled it that) for our guardians for the 3 nights and 4 days. We haven't exactly recreated the wheel. Our players are the same ones as always...the machine, nonni, mammie and ti-ti. My manifesto is paragraphs and paragraphs long with a daily schedule, food options, rules, tid-bits, operational instructions on certains objects and a daily check list. I, do know, that I have issues. 3 of  these woman have raised children who are completely normal and the machine is Sloane's best bud, but none of them know Sloane like I do.  

Sloane has been attaching herself to me this week telling me that she misses me and that she doesn't want me to leave. I am not sure what it is about. We haven't exactly drilled into her that we are going away on vacation. We have only casually mentioned it. Nevertheless, it is not helping that panic. I know I will cry on the runway and I am pretty sure I will cry while I am there. I know that I will call more times then I need too and become completely panicked when the phone isn't answered. My hubby thinks I'm going to "jack-up" on him. The truth be told, I don't think I will, but I can't promise him. Lol

In years past, I would have been jumping for joy to be traveling to a warmer climate for a few days of sun, sand and sex...ha! I am the girl who went on at least 2 plan trips a year. The girl whose bags were packed when the ticket was booked. The girl who usually planned the vacation and looked for takers to come along. But tonight, I just assume plug in a heat lamp, fill the room with some sand from Sloane's sandbox and have some fun! Panic has set in.