May Flowers

Standing in My Mind

There is so much I see when I am standing in my mind. Looking around I sometimes wonder how my life got from where I came from to where I am now. Funny how kids shape us into the person we are meant to be.

Choices

We have been thinking about moving to be closer to the special medical providers Jaden needs to see often.  The fact that he can get sick at any time and need a shunt revision, knowing that he could have another stroke at anytime is truly heart stopping for me.  I don’t know how prepared I m to handle the next 20 years of stress. I also want things like roots and being close to family for my boys. This is something I never had growing up, it is very important to me. I believe we have made the right choice, not the easy one- just the best choice for right now. I don’t believe there is a right or wrong, just best. I also know zip codes don’t change the morals we’re raised with.  

Jaden Man

So today we went for his 1 year well child visit to our PCP. Jaden is 23 lbs, 281/2 inches long and head circumference is 47 cm, where it has been since his first shunt placement on 10-13-2010. So this is all very good news. We don’t want to see much head growth until he is about 18 months. I am concerned about his hip development, with having so much high tone on his right side and leg. We are going to see an orthopedic doctor here in Durango and when we go up to TCH in June, we will see pediatric orthopedic doctor. Just to be sure we are on the right path. I am very stressed about the next trip. This is going to be his first MRI since shunt placement, scared to see how things are doing after 6 months.

Micah’s Journey

The more I learn and become educated about Hydro, the more I see things in Micah that make me think we missed something with him. When he was 4 months old, we were in Denver for him because of head size and throwing up. There was never an MRI done at the time. Knowing now what I do with Jaden, I feel like I should have known to do more. As Micah grows, things become more apparent to me concerning Hydro. So, we are going to have an MIR done soon to see what’s going on up there. I have this feeling in the pit of my stomach, I hope to god I am wrong, but I can’t rest until we know for sure the answer. I will update on this as soon as I know more information.

Next

Still working to get a support group started here. Hoping to have a name and meeting date within the next two weeks. Working on making the plans for Denver in June and bringing things together for a fund raiser; each of these things is like another full time job added on to my full time job and full time school. And with Roy being back in school also- it just intensifies the challenge.

I will be writing with much more of an untold story, everyday unfolding before my eyes.

Love and Health,

Jaden’s Mommy