I Should Have Known...

I should have known when:

• exiting out of the house this morning by 7am for our appointment with Dr. Rahbar went swimmingly
• we arrived at mammie's house 15 minutes earlier than scheduled and for once she wasnt waiting for us
• sloane neatly ate her entire breakfast in the car & entertained herself for the entire ride to Children's in spite of traffic and time delay
• I remained completely calm and collected when it became apparent that we would be 25 minutes late for our appointment because of the commute
• we walked into the CADD clinic and there was only one other child waiting.... a complete contrast to every other time we had been here
• Sloane was beyond pleasant during our wait to see Dr. Rahbar
• we only waited 10 minutes to be escorted into exam room
• the weigh in, height measure and ear check were all fabulous ideas in Sloane's mind
• Sloane moved and grooved around the exam room without hesitation
• Amanda, Dr. Rahbar's PA, knocked on our exam door 5 minutes after our bums hit the seats and instead of spraying Sloane's nose with numbing solution, she only chatted with us professionally and personally
• as Amanda left the room, Sloane asked "is Rahbar comin?" honestly, my child is a flippin' trip!! 

That's when I should have known.........

Mammie and I giggled as Amanda shut the door, and Dr. Rahbar, his 2 interns and Kara (our SLP) all entered the room with a sudden presence. Not a scary one, just a present one. If you know what I mean. Sloane wasn't overly taken back; she was far to busy looking for buses out the window.

 As a side note, Auntie Suzs gave her an Elmo backpack as a treat and Sloane is obsessed with wearing it, taking it everywhere, and putting it on and off. Now, that is not nearly as bothersome to me as what she says after she has it on....she says in the most cheerful voice "bye, mom. I leaving. I goin on the bus." And just like that at 2 years 3 months old....she is ready to fly the coop. 

As Sloane played "I Spy" with the buses, I brought Dr. Rahbar up to speed with Kara interjecting when necessary. I reported all the particulars.

1. Sloane is drinking 1/2 packet of nectar Simply Thick to 8 oz.

2. Sloane is drinking chocolate milk unthickened

3. Sloane has not had any respiratory issues and no pneumonias, but she has had a cold for 10 days that I took her to the ped for on Sunday bc I needed someone to tell me her lungs were clear. 

4. Sloane's speech development is off the charts

5. Sloane has had a frequent wheeze while sick

6. Sloane has a rattle at the back of her neck at times, very similar to the one I would talk to the nurses about when she was first born. 

Another side note, I had completely forgotten about this or had blocked it out. Very possible!! I remembered as I was placing my hand on the back of her neck to show Dr. Rahbar what I was talking about that this was the one thing I would make every person feeding Sloane do in the days bf we had a diagnosis. I knew something wasnt right. With the placement of my hand, I could feel her milk pooling up in her throat. There are days lately with the thinner liquid that I can hear and feel that same rattle noise.

7. Sloane hasnt had a flu vaccine yet, bc I want her to have the shot not the mist. I am overly concerned that it is her 1st winter without the feeding tube and bc I cant push liquids into, I am worried she may not hydrate herself enough if she gets sick so let's give her the more powerful shot, not the mist. I want Dr. Rahbar to order the shot as he is the specialist.

8. Sloane's wheeze after running or exerting exercise is still concerning me. Is her airway narrower than normal or is she a child who will have an inhaler in her Elmo backpack.

Once he had all the necessary updates, he bribed Sloane into the magic ride seat with some stickers and took a peek. Not a scope folks!! Just a peek with his flashlight!! I have no idea why he didnt scope her, but I am not complaining. The man, the legend isnt someone you doubt at any point. He has it all under control. 

And so the roles were reversed and Dr. Rahbar reported back to me.

1. Sloane will try to discontinue use of Simply Thick in her liquids as of Thanksgiving. She will continue to be seen by Kara monthly to help us manage this.

2. Sloane should not drink water unthickened bc it is the hardest liquid for the muscles to swallow. Liquids with flavor or texture will help her swallow. 

3. Sloane will not have a swallow study until Spring of 2013 bc she is tolerating liquids so well. A swallow study may give us information that we dont need, but will need to act upon. Meaning Sloane is clinically healthy so we assume she is not aspirating. If on a swallow study, we see aspirating then we will need to go backwards and thicken her liquids. 

4. Sloane will see Dr. Rahbar in 6 months as long as she does not get sick while drinking liquids in their natural form

5. Sloane could still potentially have a 2nd surgery. It is not out of the question. Time will tell as we enter this next 6 months. He may want to put one more stitch in to improve the larynx functioning if need be. 

6. Sloane could get discharged from Dr. Rahbar's care if she remains healthy and the swallow study in 6 months shows nothing contrary

7. Sloane coughing while drinking is okay. Dr. Rahbar is optimistic that coughing is a good sign that her throat is reacting. That is not to say that the choking, red and watery eyes and gasping for air is okay. 

8. Sloane's rattle is from her larynx and the abnormality of it. The tighter it is, as a result of the repair surgery, the noisier her breathing may become. 

9. Sloane's wheeze is not a concern at this time. If she becomes a chronic croup kid, then he will address her airway and its size. Sloane having croup 3X in a year isnt as concerning to him as the children he sees that have it 10X a year.

What should I have known??? I should have known this teeny tiny birth defect would not have stopped my daughter from moving & grooving....