Life is busy around here! Little Kian and I traveled home from Cincinnati last weekend, and I started back to school this week. Needless to say, our sleeping until 7 a.m. is over, as is our staying up late! In the midst of trying to get myself and my kiddos reintegrated into reality, I failed to find time to post an update on Little. Our friends and family are just precious, as they have called, emailed, and sent texts to check on the little guy. Thank you so much for your prayers.
When we arrived at Cincinnati Children's, I could feel Kian's anxiety begin to rise. His first and foremost diagnosis is definitely the white-coat disease! As we sat in the waiting room, he busied himself. A young nurse stepped into the waiting room and announced that is was "Cayenne's" turn. Yes, she said Cayenne. Medical people always do! Then she said, "Did I pronounce that correctly?" When I told her that his name was Kian she said, "Oh, that was my second guess!" Really? One would choose Cayenne...as in pepper...over Kian? I digress...
We met with our new feeding team that consisted of an Occupational Therapist, Speech Language Pathologist, RN, and Dietitian. They were all so nice and inviting. Kian was even nice...to them (not so nice to the lady that called him Cayenne that TRIED to get his weight and height). To make a long two hour feeding clinic visit explanation short, he has had no significant growth in the last six weeks. His variety of foods has not expanded. He indicated quickly to them that wet foods, such as the pineapple they placed on his tray, was simply NOT going to happen. He throws wet foods, and it is not in a naughty-little-boy-kind-of-way. With his sensory issues, he simply can't stand the sight of those kinds of foods. He frets, worries, and cries until it goes away (typically, to the floor). He is still bottoming out on the growth scales.
After meeting with the team, they met with our GI physician. He, in turn, presented us with recommendations. Kian needs approximately 200 additional calories per day. They asked me to push the V8 Fusion that he once liked, rather than give him the water for which he begs. They made plans to perform another endoscopy in October, specifically to look for signs of Eosinophilic Esophagitis (EoE). EoE is an allergic inflammatory disease of the esophagus. He also discussed utilizing a therapeutic brushing technique along with joint compressions to decrease his anxiety prior to eating.
I drove home optimistic, only to discover within a couple of days, that the little guy with the big attitude is NOT going to entertain the idea of V8 juice. He took one swallow, and for the first time in his life, he looked at me and said, "it burn." He wants "wahtie." There is no way to get the extra calories down him every day, and this week he has even decreased his intake of formula (Boost 1.5). I called the dietitian yesterday, and she sent our GI physician an email requesting that we go ahead and scope him sooner than October.
I feel like we are progressing in the right direction. I am so glad that our dear friend and Speech Pathologist, Ms. Jan, told us about Children's Hospital. It's a wonderful place, full of magnificent folks, even if about half of them think I named my child Cayenne. More to come on the Little Hot Pepper...
In other news, we built a playground this summer!!!The kids are blissfully happy, and we play on it every day! Tonight we were out there for an hour and a half! They can't get enough. I play just as hard as they do!
Airlie and Cavan also went to the dentist. Cav was GREAT! Of course, he has been several times. I was scared to death for Airlie. I was scared that she would have cavities on every tooth. I was scared she would gag and throw up, like I almost do every time. I was scared she would crawl under the chair and scream, like she does when she has to get immunizations. I was just scared. Scared for her, scared for me, and most scared for my childhood friend and dentist, Jeff! It can best be described in pictures. Yes, of course, I was taking pictures during the traumatic ordeal!
Come to find out, sitting in the dentist chair was the hardest part (see breakdown photo above). Jeff was able to calm her down immediately and gave her orange dreamsicle toothpaste. (Which, by the way, Cavan and I did NOT get orange dreamsicle. We got Gross Cinnamon flavor.) All went well...no cavities...no more breakdowns...and excitement when she received her goodie bag of dental supplies.
|Airlie's new BFF, Dr. Jeff|
Life is good. We are BEYOND blessed. We are highly anticipating our one year anniversary as a family of five and Cavan's first day of kindergarten, both occurring on August 13th! That will be a busy blog day!
Also, please keep our friends Jared and Amanda in your prayers as they travel to China (in early August) to bring their little boy, Will, home!!! 147 million MINUS ONE!!!!!!!! Woot woot!
'Tis A Grand Life We Live Daily! Love, Stacy