We jumped into 4 this weekend…

We don’t have a lot of parties… in fact, this last year we had “zero” big entertaining parties… so we get a tad zealous over celebrating the life of our little boy! And by we I mean, me… because Paul is easy-going and goes along with just about any of my silly ideas. But, the weather was perfect and the party came and went with out so much as a big ouchie. We enjoyed our time together. Here are few pictures from our day.

These are Grandpa’s shades … please note he will never let sunglasses stay on his face, so this is quite a feet. Maybe it was a maturing thing in the whole turning 4 day… Either way – he was being a goofball. Pretty fun!

 

cow love

Cows are the big time in this house. If you think you caught the jackpot with a brown moo cow, well you would not be alone. Because this guy, is with you there!

This is not C-Man’s favorite cow, but it is momma favorite cow to “forget” places. Those horns are ruthless!

This is what the “mooing” face looks like. As you can see here, I like all kinds of cows.

This is a cows rearend! Just in case you haven’t seen one before. That part of the cow makes different sounds.

These cows make me pretty happy. Did you know that my Grandpa has a Dairy Farm? Did you know that you can get cows like these for yourself at Fleet Farm? I have cows, horses, a seal, a lion, a polar bear, a moose, giraffe, elephant and a zebra. I still need a piggy though. Except whenever we visit the animals, all I want to take with me is the cows. Momma says she needs another baby calf “backup cow”. I have never heard of “backup” cows, have you? Are they like Jerseys cows or Herefords? Oh oh… mom just said they are cows that stay in her purse as “in case of emergency” because I guess her little boy throws stammering fits whenever he has to live a part of his life without the moo cows. She says, getting dressed in the morning, they are in  his hands, even while switching arms to put his sleeves in, going potty… (yes the cow gets washed too), to daycare, to the stores, to bath time, to nap time, to bed at night… wow, that little boy really does love cows. Maybe that’s why she decided to do a blog post about it. Oh, wait. That’s me! I love cows and I love you my friends and family!

prepare to be knowledgeable

Knowledge is power… someone smart said that once. I don’t remember who, but I remember it. So that guy that said it, must really be something. If you know who that is, feel free to add a comment below – then I can edit my post with the information and delete your comment. See how slick that works? Now that you know how I operate, let’s talk (by talk, I mean, listen to me talk…) about why I said it.

The definition of POWER – according to Wikipedia is “a concept in economics for which there is no agreed upon definition” – well this is one of them. I included this because I think it’s comical. So moving on to the definition I’m choosing to share is: POWER – “an agent used to create motion” (Thanks Wikipedia, once again)

In this case, the agent for me, is knowledge. If you know more about “something” you are more likely to create motion to do… something. In my case, last night I luckily stumbled across a Williams syndrome blog, written by a another Williams syndrome mother (like myself) who, in my opinion, is a genious. And my opinion is fabulous, trust me… I’ll back it up! But no, really – there are a lot of great resources for (WS). We (as a community of families who care for someone with an extremely rare disability) are blessed with a vast amount of resources that seem to be ever growing – thank you to the Internet, and constantly connecting – thank you to facebook.

I found this blog to be different, because it explains all the little things, most people don’t know about in a very detailed manner, while backing it up scientifically. Wow, that was a big word for me! I could never imagine writing this blog, but can already tell it’s going to be an excellent resource for me and the friends and family who love our little C-Man and want to learn about his syndrome. Not just the “typical” but the “why” and “what can we expect”?

I’m excited to share this with you! If you would like to visit this extremely information, crucial and sometimes the sad truth blog – please go here.

My next blog post – has got to be about C-Man and his love for Cows. I have to take some pictures first though – have a great evening everyone!

Kerri Kava

it’s a love hate relationship with Calcium

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.