"Mom... Isn't it nice to have a break from the medical stuff? No IVs, biopsies, or things like that." He is right.. it totally is. We haven't had a total break though. On Tuesday, Owen had a swallow study at Phoenix Children's. His feeding therapist joined us and I brought all his favorite snacks.. we were prepared! He was really cooperative, drank the barium thin liquid and had no issues swallowing. Then I handed him a tortilla chip covered in barium and his reaction was "are you serious? I'm not eating that!" I took a big bite to show him how 'yummy' it was and it was really disgusting. Being the rock star he is, he took a big bite of the barium covered chip and chomped it up. He thought it was cool to watch himself chew on xray, but couldn't get it back and swallow it. We tried pretzels and strawberries with the same results. In conclusion, he can swallow thin liquids and he's protecting his airway, which was the biggest concern.
I have been working on a post about Owen's eating issues. Honestly, it is so difficult to even write. Aside from the cardiac issues, feeding has been one of our toughest challenges. Owen loves food and eats all day long, but mostly pockets or spits it out. We are just trying to get to the bottom of why he won't just kick it back and swallow it. Even something as simple as a mini M&Ms gets lost in his mouth and he can't figure out how to swallow it. Then ten minutes later, he is gobbling down tortilla chips and salsa. It's a process... a long, patient process.
Yesterday, we headed back to the hospital to see dermatology. Owen has always had a mild case of keratosis, but it's been flaring up lately. Cardiology sent us over for a consult to ensure it was just keratosis and nothing else. The dermatologist says "It's keratosis pilaris... very common...use some moisturizer on it." Anyone have any suggestions? I have not tried much since it's on his face and mostly flaring up due to his anti rejection medications (Cyclosporine). This picture doesn't do it justice.. it's really red and bumpy right now.
Another side effect of the Cyclosporine is hair growth. While we love his Caterpillar eye brows and awesome back hair, the hair on his head gets out of control! I took Owen to get his haircut yesterday and he was such a chatterbox the entire time. He is just so social with everyone. If you pass him in the store, you will be met with a smile and a wave.
After the haircut, we picked up Sis and then he jumped in the tub to wash the itchy hair off. I was in a rush to get his school work set up before Mr C arrived and asked Kam to get him out of the tub. This is what I found. Kam used to love to get Owie out of the shower, wrap him up and call him her little worm baby. So she did the same thing yesterday.. only he looks huge now! I don't know why this picture cracks me up...
So while we don't get a break from doctors completely, it is nice to get a break from the hospital stays. Our 2014 calendar keeps filling up and it makes me so happy. So much fun to look forward to!
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12 comments:
Tallow salve is perfect for his KP. Message me on FB and I'll give you the recipe. So glad that he's doing so well!!
Hello! Have you looked into the Honest Company for ideas on how to help the bumps on his face? We used a few products on my son and they really do work like a charm! Best of luck!
My KP clears up when I avoid dairy for at least 3 weeks. I'm not very strict about it, but when I stopped having milk and yogurt everyday, I noticed a big difference.
I love following Mr Owen!! I love to see how well he is doing! My heart angel warrior also had HLHS he would have been the same age as Owen. I love seeing him doing so well and makes me think about where I would be today if my little man was still here. Love following your journey!
I agree with the Honest company recommendation! It's so good to have these "small" problems in comparison, but I know they are still just as annoying! So happy to see him doing so well.
It has been amazing to watch his progress and see how well he is doing! I have a cardiac kiddo who will be 12 in a few weeks--can't believe how fast it goes. We have good friends who have the same swallowing issues--it's hard stuff! We will be praying for you guys!
I would look into food sensitivities for the KP. My doctor told me for years that my KP was likely related to food issues, but for years I avoided going any further - until other issues caused me to need to go gluten free. Two weeks later, my KP was GONE. The only time it flares? When I accidentally get 'glutened' (or cheat). Once the gluten clears my system, the KP subsides. My little brother's KP seems to related to dairy, so food sensitivity testing, or a short-term elimination diet may give you some clues. Good luck!
I love his sweet smile. I heard Dr. Bonners Organic lotion is good.
We've had very good results using Aveeno daily moisturizer, The on with the green cap. Bumps and all Owen is looking great.
I've had KP my entire life and just learned to live with it. Then I cut dairy and gluten out for a possible auto-immune condition and it cleared up 100% in just a couple of days. Amazing! It may be diet/immune related for your little guy too.
Owen is getting so big! Glad he is doing well!
That is such a cute pic of them.
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