Monday, July 21, 2008


So we have great news all around for the most part to report.

The pedi hemo. said that his levels of Protein C are still low but a little bit higher than they were a few months ago. We tested for a lot of other more common blood clotting disorders and some were negative and some were positive but the ones that were positive turned out later to be negative when they did other tests within those tests. (Sorry if I am confusing any one)

The second new is that Sean finally got air he JUMPED. It was only a little bit off the ground but he did it and both feet were off the ground at the same time.

He had is 6 month review with his PT and he is still around 21-22 months level for locomotion skills, and ball skills. He has come a long way and she is very proud of him as well.

He will have his OT reviews and Speech reviews over the next few weeks.

And lastly I have been having emotional thoughts of telling everyone or certain family and friends about Sean. I too as some of you have felt the guilt and curious of our little ones will resent us later for telling people. But I am honestly going to go with my mommy gut and instinct and just tell as many people as I can and get as much awareness out that anyone and everyone can have a stroke.

The more I think about it, the more I think maybe Sean will be proud that I can help make a difference in another ones lives and families and get the word out and TELL everyone so will stop happening or how to get an earlier diagnosis.

Anyone can have a stroke, children, adults and unborn babies can HAVE STROKES.


Amanda said...

Way to go, Sean! Jumping sounds like tons of fun!
The what to tell people is hard, I'd like to think it gets easier with time. I too hope that Leah will be proud of my decision to tell people. Which ped. Hematologist do you go too? We went to Dr.Allen at Children's Memorial.

Erin said...

We saw Dr Manera at Loyolas Ronald McDonald House

therextras said...

I think you're pretty safe on show-and-tell of Sean's life now...first being that he is a boy and second he won't care until he is at least a teen - at which time, you will be able to do nothing right (hypberbole).

My experience with a teen girl is that they care more about what others think and know.

You start planning now as to how you will hide all this for the six years that he is a teenager, or not.

The title of your blog says it all. Y'all will be fine (Texas twang intended.) Barbara

Erin said...


Thank you:)

Kiera Beth said...

Yay Sean! That is great news about the jumping! I am so happy for you!

Thanks for the comment on my blog. I am sorry it took so long to get back to you. It is wonderful to have this amazing support network online.

Sean is a beautiful little boy! I love all of the pictures of him on the playground. He seems like he is full of energy!

As for telling people, it is something that we struggle with, but I have found it has become an easier decision as Reichen gets older because people do notice that he is slightly delayed. Initially there was no outward indication and it was difficult to decide when/if to bring it into a conversation.

I think that Sean will be proud of you and the decision you are making.

Mind if I link to your blog from mine so I can remember to check yours out and keep up on Sean?

Erin said...

I don't mind, do you mind if I do the same?

Thank you for your kind words:)