Calcium is our enemy again. I know – we ALL need more, what are you talking about?? My little man absorbs calcium like few other. For some reason people with WS absorb Calcium at a much higher rate than you or I, except we all get rid of calcium in the same way (by going on the potty, of course). Just 2 mo. ago his Calcium level was in the “normal” range. Which is great news after trying to balance it for 2 yrs. Just 2 years ago, Carter was hospitalized for having levels around 11.5 (a high range is 9.7) 2 months ago he was at an all-time low of 9.8. Just this week his level was a mightily disappointing 10.9. It was a hard pill to swallow… since meeting with his doctor, I asked if his levels stay low – perhaps he can go back to a restricted intake of milk instead of his Calium restricting Calcilo formula.
I should say, he doesn’t mind the formula one bit – in fact, I rather think he likes it. Carter is a little cow loving, Elmo huggin, rocks best friend type of boy. I think he can handle nearly anything that comes his way, but I’m not sure I can. Carter really is our everything. Just two weeks ago I was asked by a wonderful successful person, “Where do you see yourself in 5 years?” Now… for those of you that maybe don’t know me, I truly do strive for success in whatever I do. I feel like I have truly accomplished that in my life. I’m not done with accomplishing, but my goal has definately shifted along the journey. I’m turning 31 in a few weeks (always proud of my age, I’m not a shy gal) and in those 31 years, I feel, I have been through many trials and bumps in the road. Ones I could have never foreseen, but this “challenge” … the challenge of making decisions for a special little boys health and learning and life journey, is not a job I take lightly. You may easily stick me right into that category of women who become a mom and all they do is think of their child. I’m fine with that, do it. He needs me and I’ll be there for him as much as I can.
So what did I say, to the highly successful person that asked me where I see myself in 5 years? I had a mere 4 seconds to think about my answer, so only the truth came out. “I just want to be a good mom.”
Although – if I were to think on that longer – I’m sure I could have had something more clever to say, but that wouldn’t have been real, and I’m not fond of lying. I want to be a good mom to Carter. I want to give him everything he needs for his health, for his mind to learn and grow, for his spirituality and more than anything to give him what he needs to share the love in his heart.
It doesn’t matter where we go. Today we went to Bath & Body Works – we picked out some fancy smellin’ soaps and he rans around the store like he was in heaven. Tons of things in containers to dump out… oh oh and I can knock this over and pick this up and flick it. I can even run up to that pretty gal with the curlies in her hair and a funny poka dotted apron… “Waah Hi! COOOW, Mooooo!” He says. He can get away with just about anything. We went to the mall looking for some new shoes. His new orthotics are a killer to find shoes for. The ones he has are eh…sorta working, but I don’t think they are good for his feet and growth. Lucky us – we have to custom order. So we ordered two pair and now we’ll wait. In the mean time, why not get some good smellies? We got some Mango body wash for momma too (that’s me). He was in that store for all 7 minutes and by the time we left, that gal was in love with his infectious smile and loving heart.
This simple Sunday afternoon story should somewhat, sum up, my being scared of what could be to come. I’ve worried about Carter having to get Pomidronate Infusions. This is where they go in and literally pull calcium from his bloodstream. It’s invasive, could cause some horrible infection, but the worst part is, its really hard on a person. A great friend of mine, her sister has to get them every 3 months. Every time she does it, it seems she is just wiped out (and she is 18). I think about my soon to be 4 year old doing that and it terrifies me. I’m going to keep praying he can outgrow it, and God heal him. They can both happen. I believe! The strangest part is, they will pull so much Calcium that he will have to start consuming it to keep up, which is fine for some things, like yogurt. But I’m not sure he can go back to milk now. He’s been drinking this formula stuff since before he can remember. He’s had breast milk for a year and a half. Then 6 mo. of regular milk (which prompted him to get Hypercalcimia in the first place) and now Calcilo for 2 years. It’s all he remembers. In a pinch, I once let him try a drink of regular milk and he wouldn’t drink it. So… hypathetically speaking… if he switches back to milk after an infusion and he won’t drink it… then what? Do I shove as many Cherrerio’s (with 10% of the daily allowance into him)? Oh wait, I suppose I could FINALLY give him a multi-vitamin. I’m not sure what that would be like since that has been forbidden due to the Calcium/D since foreverness (yep, that’s a word, write it into your Dictionary). Ahhh – I should have become a diatician. Or pehaps a doctor, law-maker, therapist. We S.N. Momma’s wear a lot of hats. I’m glad I have a normal size head to fit into them all…
I’ll try to make time to log on tomorrow. I will tell you about Carters first experience with a Jump Jump House. God bless – goodnight.