Closed For Business

I am not going to lie. I was a bit nervous going to see Courtney today. I had many new things to share with her and I was not sure what her reaction was going to be on all of them. As luck would have it, the traffic was HORRIBLE so I knew we would be at least 20 minutes late. I called Courtney and we chatted on the phone as we inched our way to the hospital. Not having to see her expression as I went thru my laundry list of changes took the pressure off. I know I am the mom and have been told many times by doctors that I am in charge of Operation Fluids progress but I was still a bit unnerved.


So as I verbally assaulted (in my head) Boston drivers, I went thru my list:
1. that my ped dropped the volume of the tube feeds down (after her colleagues at the the nutrition clinic raised them) in an effort to get Sloane to drink more by mouth. Courtney was thrilled to hear!
2. that my ped does not have an overly huge concern about Sloane not desiring milk/does not want to force her and that her primary fluid is water. Courtney doesnt have a concern either.
3. that I took it upon myself to allow Sloane to use a cup with a straw, rather than a
sippy cup. Courtney loved the straw idea because it forces Sloane to tuck her chin when she drinks protecting her airway.
4. that Sloane is drinking many more ounces daily since Courtney has last seen her. thanks to our ped dropping the volume in tube feeds. Courtney was over the moon!
5. that we are only 1 more ounce of liquid away from moving onward and upward to the nectar consistency. Courtney was surprised I was thinning out the liquid so slowly. I explained that I didnt want to keep thinning down as the volume Sloane was drinking was increasing because if she did get sick we would not have known if it was the consistency or the volume. One change at a time is my moto.  Courtney did ask me to think about trying nectar today in her office when I arrived.
6. that our ped wants to pull the tube because Sloane is drinking 15 to 18 ounces a day. Courtney agreed that 15 to 18 oz. was enough daily fluids and was accepting of the thought to pull the tube. She told me that she would email, Jenny at the feeding/gutbe/nutrition clinic as I drove, because Jenny would be the person who would give a yeah or nay to Dr. Reibman...not Dr. Rahbar or Courtney herself.

Having this conversation as I drove made it much easier. It calmed me down some. I was a lunatic, cursing driver! I took my fashionista friend with me, who Sloane thinks is her best friend, and I am pretty sure I scarred her for life during the 45 minutes of bumper to bumper traffic with my WTFs, WHY us?, and Sloane's "mama, mama, out". Our wing woman, Mammie, had a prior engagement.

Once we arrived, Courtney told me she had in fact emailed Jenny about discontinuing use of the feeding tube. And so we waited to see if she would respond during our session. 


Sloane was happy to see Courtney, and once settled, she immediately drank for her. I had prepared 7 ounces of water to 1 packet of Simply Thick. After Courtney saw Sloane drink that consistency, she up-ed the anti a bit and thinned out the liquid to nectar consistency (which is 8 ounces to 1 packet). Sloane sipped some more without any concerns at all. So we decided that Sloane can skip a few steps and move onto nectar consistency safely. ONE HUGE MILESTONE for the session!


Courtney and I chatted about that fact that Sloane is able to tolerate nectar consistency and how that opens new doors in the food world. Now, she can have drinkable yogurt snacks, go-gurts and squeezable treats. I am hoping these new dairy based snacks will be a big hit because they are novel. Can't blame a mom for trying to get calcium in any way she can! ANOTHER HUGE MILESTONE for our session!


As Sloane munched away on tuna fish, peaches and cheese, she sipped away on her nectar consistency JU. It was quite a moment to take in. She was her fabulous self! Blowing bubbles, chewing, twirling, sipping, chatting self. And then there was the ping! 


The infamous "You've Got Mail" ping. And clear as day, in black and white print, there it was Jenny's response: It is the ped's decision, but she(Jenny) thinks Sloane can discontinue use of her tube as long as she continues growing like a weed without it. THE BIGGEST MOST HUMONGOUS MILESTONE in almost 2 years! 


THE FEEDING TUBE IS CLOSED FOR BUSINESS!


I cried as did my friend. And I cried every time I said it out loud to someone in our circle of trust. I have no words to express the feelings attached to this milestone. It almost feels surreal. A year and a half go, I wondered if Sloane would enter kindergarten with a feeding tube. My hubby and I are beyond ecstatic. I know the day the mickey button is removed will be one of the best days of our lives. 


Courtney spent a few minutes chatting with me about the feelings a moment like this brings out in a parent. She suggested I write those feelings down for Sloane. Maybe we will? She also said the most profound thing that I could have heard. Courtney said that she learned from us and Sloane. She went on to say that she was skeptical when we first arrived in her office in November 2011. She said she did not know if swallowing therapy could work on a child with a laryngeal cleft as large as Sloanes. She divulged that she was concerned for her development in the swallowing and speech world.  But we or rather Sloane has shown her that it can work. She said she stands behind it now.  Lastly, she said she sees many children and not many of them are as fabulous as Sloane. Courtney finished it up with "it was a joy to spend time with Sloane" to which I said "it is a joy to be her mom."


This would have all been too perfect if it ended there...next Courtney said "so, I am sorry to tell you that I am moving and can not work with Sloane anymore." SO SAD. Sloane will be getting a new SLP, who Courtney will hand pick herself, to continue working with Sloane as we thin out way down to liquids in their natural form. We are 1/2 way there with nectar consistency!! 


I do not know what the timeline is going to be or how it is going to go down, but I do know that I WILL NOT be plugging my child in anymore. I left a message for our ped this afternoon and I am sure we will discuss the details tomorrow. I would like to leave the mickey button in for a period of time just to be sure before we remove it completely. Baby Steps for Sloane and me!!!