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

April Showers

New News

I feel like I have so much to catch up on, so much happens so quickly these days. I am excited to be writing this up date. I am so hopeful about the future, yet harbor feelings of trepidation. I will update on the support group happenings, health, therapy, SSI and the big #1 coming up!

Support

Last week I flew to Denver to Children’s hospital for the first stroke support group meeting there.  I was out of my mind nervous for this meeting for a number of reasons. I have only ever been on a plane once in my life. So to make the trip by air was hard for me.  I never thought I would be excited to attend a support meeting for parents who have had a child that has suffered a stroke. I am not sure who needs who more, the child or the mother. Kids have a way of helping guide us into who we are meant to be.  The meeting went so well. I was happy to meet parents who are a few years out in dealing with the after effects. I am happy to have the support of the director of the Denver group for a meeting here in Durango; we need this so much, for so many reasons.  Meeting details are in the works right now, I am hoping to have a date in May because May is stroke awareness month.  

Health/Therapy

Overall Jaden has been doing awesome. Health is doing ok. He had pink eye, but with the proper drops, he is doing much better.  Getting ready for his one year well check! Therapy has been going well. We just had our 6 month IFSP (individual family service plan) review. It was hard looking back at the unrealistic goals we set- Just more reinforcement that Jaden is going to do everything on Jaden time! This time we set some really solid goals that I hope we can meet or exceed. If not, we try again.  We are really working on constraint therapy with him. It is amazing how well this works with him. I am so thankful that he is overall such a happy lil man! We just got a play gym with a ramp, slide and steps to work with on all aspects of therapy.  Truly amazing staff with PT and OT that teach us how to help Jaden!

SSI

So the deal with this is like most others- Jaden medically is disabled. However, we are over income by between $35 and $50 dollars each month to get any financial/insurance help here.  So that being said, we are now working on the Medicaid waiver list. I am hopeful about this, I know it may take a few years to get Jaden on, but once he is I will never have to stress if he will have insurance if something happens and it is needed.  So I am not holding my breath, but at the same time I am hopeful that this will work out for the best.

The Big #1

I am shocked and thrilled at the same time that this day has come!  The last year has felt like 5 years for me. We as a family have overcome so much hardship while showing so much strength.  Jaden being here has changed our lives and the lives of our family. Jaden is such an amazing person, just seeing his smile makes me want to work harder!  I am excited to celebrate his first year; it feels like an accomplishment for our family!

Coming Together

Each day is wrapped with daily routines, daily motions- seemingly so slow yet flying by.  Daddy and I are still working hard with school, sticking to it! Micah’s exciting news is that he has become part of the Tigger’s soccer team! He did so great and I think he really enjoyed it! He is also fast approaching the last month of preschool! I am so proud of him; he works really hard and is a great big brother to Jaden!  Each day I am increasingly thankful for my family.

The Next Update

I will be updating more information about the birthday boy and lots more information about the support group details as they come along. I more inspired to make a different here now that I have attended a meeting and know the education, emotional power and positivity it holds for each person involved; providers, parents, family and the community.

Love and Health,

Jaden and Micah’s Mommy