Sloane is International!

Across the pond, as they say, there is a mom of a 6 month old little girl, with an isolated level 2 Laryngeal Cleft, who has found solace in our journey!

"A Mom in London" thank you for your comment. Please contact me again and leave your email. I would love to correspond as well as answer any questions you have!

Hi,

I am another mom who is extremely grateful for this blog. My daughter was born six months ago with a long type 2 laryngeal cleft. She also was diagnosed early and has no genetic or developmental issues. Your blog has been one of the only sources of useful information I have been able to find. Your story gives me hope and has also helped prepare me for what may be ahead. We are living in Europe at the moment, but will be seeking treatment from Dr Rahbar. I would love to get in touch via email if you would be interested. Your little girl sounds like a real joy and I am glad she is doing so well. Thank you again!

A Mom in London

Life in Sloane's world is great! We have battled a constant runny nose, ear infections, junky coughs and the stomach flu for a week this past winter but we have made it thru :)

Sloane is back on her inhaler once a day. Mid-February, the junky cough got the best of us. It had permanently resided in Sloane's lungs so our ped suggested starting back on the inhaler. And it worked! Not sure how long we will use it for??? Taking it one week at a time!

It is obvious that Sloane needs her inhaler for airway issues. Whether or not they are related to the cleft isn't as important to me as it used to be......Each month, we inch further and further away from the life altering effects of the LC. Which is almost unbelievable!

What is also unbelievable........that A Sip Of Heaven has had over 15,000 views!!! OMG!!!

Dancing Queens

Anyone who knows me, knows I like structure and a schedule. Some days it is to a fault. Other days, it is what brings music to my heart. I spent all of last week, preparing for "my schedule" on Friday. It was a day I had been waiting for since September. Sloane's 1st Father Daughter Dance! 

Sloane's pre-k is part of a school that goes up to 8th grade. So this, in fact, was a "real school" event. I found the perfect dress, adorned it sparkles, ordered a mini bouquet, and prepped Sloane all week about the dance to come. My hubby was away thru Friday so we had lots of beauty sleep and girly time. 

I decided weeks ago that on the day of the dance, I would pick Sloane up early on Friday and take her home to nap before the dance. My daughter is a child who needs sleep. Right up until she started school in September, she was sleeping 2 hours a day. Since beginning a full day at school, her naps have been only on the weekends. 

I thought that Friday would be a good day to have a power nap. The dance didn't begin until 6pm; only a normal night at 6pm Sloane is rubbing her eyes and spinning out of control. My thought was that the Father Daughter Dance wasn't the place for these behaviors. 

I had planned it all. My day. Her day. Errands. Everything revolved around a 12:30 pick up and a nap! Everything went swimmingly until the moment I arrived at Sloane's school. While waiting for Sloane to skip down to me, the nurse told me that Sloane had stopped by her office complaining that her ear hurt. 

I was surprised. Sloane hadn't said a word to me. As soon as I saw Sloane, I knew. She was cool as a cucumber but her eyes were as glossy as a newly cleaned rink. Sloane told me that her ear had hurt and now it didn't. I sighed some relief and thought a nice nap would be all she needed since it was Friday.  

Once we were home, Sloane literally jumped into bed and I was right behind her!! A nap would serve this newly 42 year old well. I, too, had some dancing to do that night. Both Sloane and I would be dancing the night away. My friends had asked how I wanted to celebrate my birthday. My wish was to dance. I hadnt danced in years...since before Sloane. Dancing hasn't really been at the top of the priority list. My "nap" plan for Friday was going to benefit me too!! Haha

Into bed we both went, but only one of us settled down. The smaller and cuter one was very restless. She tossed and turned for close to 30 mins. I finally said, "mommy, what's the matter?" Sloane bursted out crying with complaints of a hurting ear. There is was!!! Nooooo, I thought. Not today. Of all days!!!! Today is supposed to be a quiet, relaxing day. 

And I called the ped's office to make a sick visit. As my luck would have it, the 
only thing they had open was 5pm!!!! At 5pm in my plan, we were supposed to be getting pretty for the dance. Not sitting in the ped's waiting room.  My plan was out the door.....

Sloane settled down on top on me. My lil lady certainly didn't feel well. I popped some numbing drops in her ear and we waited. I wasn't quite sure what we were waiting for......the doctor's visit, her father's arrival home or the dance.

In my head, I was rationalizing that I was still a good mom even if I went out dancing with my friends while Sloane has an ear infection. After all, there were a bunch of us! Slowly and surely, I began to feel like a crap mother and too old to go dancing. By the time we sat in the waiting room at 5pm, I was completely sober from all my giddiness about the night's festivities. I was a mom of a sick child, not a birthday girl with a purpose.

It was an ear convection....Sloane's term. Haha! No fever in accompaniment luckily. We left with a script for 10 days of antibiotic and some peace of mind 
that the junk in Sloane's lungs would feel the effects of some meds. :)

It was a mad dash to get out the door for the dance. I figured, at the very least, Sloane could take some pictures with her dad and come right home. The numbing drops had taken the edge off and she was acting like the spitfire she is!! I told my hubby to prepare for anything....she may cling to you, be overwhelmed by the whole thing, or become a dancing queen. 

Sloane looked beautiful. She was beaming. I sent them on their way which 
wasn't easy. I wanted to see it all happen......the pictures, the dancing, the fun, her little friends. Our parting words were...send me pictures all night!!

And with peace and quiet in our house, I took a good look at myself and thought....this happy 42 dancing party was an example of something better in theory than practice (one of my favorite sayings....TY Andrea). I wasn't at all prepared to look or be a dancing queen. Sloane bounced back from her ear convection much faster than I did. It appeared I need the nap more than my lil lady. 

I hope for a miracle hot shower! The pictures started rolling in and Sloane wasn't overwhelmed at all. She hit the dance floor with zest and didn't turn back. Sloane was a party girl......dancing with all her friends and the older girls too! Kicked and screamed her way home. 

Once I had my hot shower, I turned on some tunes and got busy fixing up my 42 mommy look. There was a fashion consult.....and then I, too, hit the dance floor with zest and didn't turn back. LOL. We were a bunch of party girls! There 
was no kicking and screaming on the way home....only whining and squealing that our stiletto stuffed toes were aching! 

Sloane, ear convection and all, is more of a dancing queen than I am! 

Thank You Kacie from Texas

The straw that broke the camel's back! Isn't that the saying??? In the world of this blog....the straw was a comment from a mom in Dallas yesterday that I received earlier this week. She has a 15 month old who may have an LC. Her comment was the straw that broke this mom's writer's block! 

Now, a few different people have asked me over the past few months why I hadn't blogged lately. I had no good reason. I truly hadn't realized.... 5 months had passed by. It unclear where to begin. I can simply say life is good, really good. Sloane is 4 1/2 and in full day Pre-K loving life. I can remember wondering day in and day out when Sloane was an infant what life would be like at school time. Our life has far surpassed my ideas.

As for Sloane, she has no clue about her journey. She recalls small bits with questions like why did I have to sleep over at the hospital? What did Dr. Rahbar fix in my throat, can I see it? I am sure as I sternly say: take small sips, slow down, not too fast....Sloane gets the idea. 

We did see Dr. Rahbar in November for a check in. Can you imagine I didn't even blog about that?? It was uneventful. Actually, I think the fabulous doctor was surprised to see us. We were just checking in 6 months post-op. No concerns. We left that visit with a "I'll see you next year unless you have a concern." 

I don't have a concern aside from the occasional thought of should we try the inhaler for the winter?? Sloane does have the wheeze at times and I have thought about that inhaler but it's not enough to push me yet. I am on it....listening to it when we were outside laying low, at ski lessons, or twirling around on the ice rink. I wait for it to come and then judge how long it lasts. Not long enough for me to make the plunge yet. 

After I listen for the wheeze, I tune into the junky wet cough I hear every once in awhile. It's been happening for a month or so. That doesn't sound good, I'm sure but the cough has turned into nothing else.....thank god! So I have let it ride because my ped was away on an extended vaca and I didn't want to see anyone else because Sloane and her lungs are in an intimate relationship with her so I thought...just wait until she comes back.  That'll be next week! 

Life now has less to do with Sloane's cleft and more to do with being a mom of a precocious and spirited 4 1/2 year old! A huge thank you to Kacie for sparking me to recall where we came from and the importance of this blog to those who are just starting their journeys. 

I haven't forgotten the beginning of our journey, I have just tucked it away while I was enjoying this life of not ending under a medical umbrella.

Kacie, I'll email you back later tonight when all is calm and quiet!