Well, it was that time again. Every 6 months Braden goes to be checked. So for those of you interested, he is still growing despite my forgetfullness in giving him his medicine. I had a little down mommy time last appointment, but this time, I'm ready to start fresh so that next appointment (March!) I can confidently say that he is getting his medicine faithfully! I learned that if I forget it will cause his legs to break down the muscle and the extra "CK" will go into his kidneys and ruin them. I didn't realize that it was that serious, but hopefully now it will be good for me to be on top of it. I did make a checklist and everytime I give him the medicines, I can "X" them off. That seems to be helping.
His medications consist of Carnitine, which he gets one dose almost faithfully, but he needs two a day. MCT oil, which is like regular oil that needs to be mixed into things (that is hard!) and before bed he needs to have cornstarch. The oil and cornstarch will help prevent the sore muscles, and also help him to grow. He is currently 20% on weight, 10% height and around 50% head circumference, so it is better than below the charts like he started. I guess another hard thing is that he seems fine. There is nothing in his body language that suggests he is hurting. He is running, jumping and active all day. He wakes up happy, and is always helping around the house. I guess I should thank my lucky stars that he is like that.
The most amazing part of the visit was at the end, he had to get a blood draw. Keep in mind he is only 3 1/2, and he watches the needle go in and does not make a peep. He thought it was "cool" that his blood was red, and that the tube sucked it out! I am always amazed at what a brave little joy he is. Since he was first diagnosed, he has been wonderful with needles. Who knows, maybe he will grow up and be a phlebotamist (I can't spell!).
I just want to shout a thank you to my mother-in-law for going with me and supporting me in trying to come up with other solutions for mixing his medications. Also thanks for the wonderful neighbors for keeping Tina in school today! I sure appreciate all the help! If any of you have some suggestions for me, I'd appreciate it:)
5 comments:
Wow! Braden is such a cute kid. It sounds like a lot of work. You are such an amazing person Melanie! You are always smiling and seem to be so happy all of the time. I'm sure you are taking care of Braden wonderfully and giving him all he needs!!
What a tough little kid! I'm glad all went well. You're such a good mommy!
Oh Melanie, that's my biggest problem, is remembering daily tasks that don't seem essential. So I wouldn't be good at giving tips, I'm not very good at taking my own pills. But, Braden is such an awesome boy! He's so cute and lovable. I hope we get to see you guys soon!
Wow! I had no idea anyhting was even wrong with him. That is amazing that he just took the needle that well. I can't even look! you, me and veronica need to plan when to get together. I talked to her today and she still wants to do domething soon. let me know.
What a little stud. I'm missing him (as well as the rest of you guys) like crazy and it's sad to see them grow up so fast. What a special bond he'll always have with his guardian angel big sister who saved his life. As for tips, not sure what to tell you. I bet it would be hard when he probably isn't old enough to remind you himself. Anyway, love you sis!
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