Alexi had an amazing week. She got to do tons of shopping, eat lots of turkey and hang with all of her favorite people! A few weeks back Alexi had a follow up with her cardiologist to check back in on her heart. They found a pericardial effusion (fluid around her heart) back when she had her tummy surgery and wanted a follow up done a year later. The echo showed that the effusion had gotten worse and had a second echo scheduled with her DS Clinic this week as well as labs scheduled for blood work.
Alexi had a great time visiting with Dr Vellody and Mrs. Sheila at the Down Syndrome clinic! They spend so much time with her finding out how everything is going and making sure we are comfortable with her development and health. They were super proud of her progress and we took our "heart tests" and left.
Dr. V. called us last night and let us know that the labs and echo had been read, although we hadn't been contacted by the cardiologist or any other Dr.s yet, he took the time to check her file, find the reports and call us to keep us in the loop.It turns out the fluid build-up had not gotten any worse in the past couple weeks, but hasn't subsided at all either. The blood work also confirmed some of his concerns that she could have Celiac Disease. Alexi is growing wonderfully and LOVES some of the foods that are hurting her inside so we had no clue anything was going on in there.
This is gonna be tough.
For now we are keeping her on her regular diet, then a GI Dr will do a full scan to confirm exactly what's going on in there. If they confirm it is definitely Celiac (sounds like the blood work all but confirmed it), we will then be meeting with a nutritionist to help formulate a new, life long, diet for her.
This is going to be a tough challenge for dad, I LOVE sharing all of the tastes I love with her. It's amazing how open minded she is already and I couldn't help feel at first like she is getting ripped off here. It's not fair that she can't have pizza anymore. (not REAL pizza anymore, anyone who has had Fiori's pizza knows what I'm talkin about.)
I took last night to feel a bit sad for her, starred at her and talked to her once she fell asleep next to me on the couch watching Christmas movies, full of cookies and cheer. Damn it. No cookies any more? That's her favorite reward after a long day of entertaining mom and dad and making strangers' days brighter.
She earns that cookie and asks for it clearly by name. Gonna break my heart. But last night, I stared at her, asleep on the couch, and talked to her. At first it was pretty standard stuff I tell her while she's asleep, let her know how beautiful she is, how proud I am of her, and how lucky I am to have her. And thank her for teaching me every day. But tonight it felt different, I had such a heavy heart. I found myself apologizing to her and expressing that it's not fair. But somehow, just staring at her, I knew she was gonna tackle this change. Looking at her I just knew she was gonna be ok, and she'd help dad learn, too.We put her to bed and followed suit. Today I awoke thankful. She shows no symptoms of Celiac, not to us anyway, she is growing incredibly, and has had no tummy issues since her surgery. She was just tested last year for it, too. But thankfully the DS clinic insisted on testing again, and even before the tests Dr. V had a feeling she may have it. It is great to have the support of the clinic. We are thankful for the guidance they have provided thus far, and are confident they will help us continue down our new path if Celiac is confirmed.
I'd give more information of Celiac but have not done enough research yet to really give up much info. Heck, for now we are SUPPOSED to continue on her normal diet, so that when the GI tests are done they can see HOW the glutens are effecting her. So until those tests are scheduled, it's business as usual! (With maybe and extra Fiori's trip or two.)
