Courtney was VERY pleased with her drinking. It was Sloane's cocktail of choice. 2oz of juice w 2oz. of water mixed with honey consistency thickener. Sloane showed no obvious signs of aspiration today. I assumed we would be moving onto nectar consistency if honey consistency was safe, but that was not correct. I was skipping lots of steps. We will be thinning out the liquids a bit more for the next month. SLOW & STEADY is the motto. We are moving from 4oz. on to 4 1/2 oz. of liquid to one packet of thickener. This will thin out the liquid a bit more and we are going try to get Sloane to drink milk with the thickener. Courtney was not surprised that Sloane isnt bellying up to our bar for milk. It is usually at this age that toddlers stop wanting milk. When we see Dr. Rahbar next month, we can all talk about the progress thus far and future plans in terms of thinning out liquids.
Courtney is not convinced that Sloane's 2 experiences with croup this winter are not related to her cleft. Croup is a broad diagnosis and may be related to aspiration. Not great news, but not horrible either. Dr. Rahbar will weigh in his thoughts next month on the croup and its relationship to the cleft and aspiration, if any. Although Courtney did say, she thinks Dr. Rahbar will say that Sloane has been healthy enough to continue drinking thickened liquids.
There was not a swallow study today. Swallow studies are done in the hospital as an x-ray. I asked Courtney today and her assumption is that there will not be another swallow study anytime soon. Music to my ears!! After our last experience in August 2011, I have decided that I am going to use Sloane as my guide to what she can and can not eat/drink safely. Swallow studies can be to sensitive in their results. I am hoping Dr. Rahbar concurs and we wait a while before putting Sloane under the magnifying glass.
Courtney thought Sloane looked great and was impressed with her feeding skills in spite of everything. Many kids with tubes start to rely on them and do not want to oral feed. I believe she called Sloane a "foodie" and then said it is so helpful that she is obviously surrounded by foodies. I had to laugh!! Since, grammie and I were already talking about Easter Brunch this am. Foodies we are!!
Today was a good day! But a long day. We were in the car by 8am on our way and not home until 4pm. There were some pit-stops along the way, but nevertheless Sloane was sitting all day. It is exhausting. When I get home, my first goal is playing with Sloane, then thinking about our day, and lastly talking. Talking for me is usually non-stop but after medical type day I need time to recharge. I usually cant say anything verbally other than "Sloane's appt. went ????" I am hoping this blog helps fill in the blanks for those who want to know the details. Our days heading up to Boston can be draining physically, mentally and emotionally even when they are good days like today. I am very thankful for all the amazing progress we have made, but I would be lying if I didnt say that I also am sad at times that we have to spend days like this. Other children enjoyed the beautiful weather today, my child couldn't. These are the days that I feel alone in this journey even with my wing-woman sitting right next to me. These are the days that you hear "I have a child with a birth defect" playing over and over in your head. These are the days that I spend a few extra minutes loving up Sloane.
Last year at this exact time, I was curled up in an ICU crib with Sloane trying to keep her calm. My hubby was sitting aside that crib trying to keep me calm. Sloane was recovering from her bronch, I was recovering from putting my child through anesthesia again, and my hubby was recovering from seeing his girls out of sorts. I remember it vividly. We, as a family, have come so far!
As a side note, Sloane started using the word NO today. And to that I say, let the games begin!!!
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