Thursday, August 4, 2011

miles and miles and miles and miles and miles

It seems we have been on the road for the majority of the summer. We have yet to have a whole week at home since May. There are good and bad things to this. Always being on the road produces a whole lot of laundry and one tired boy. But we are relishing the freedom that comes from ending our second go around of 8 months of RSV isolation.

We've been having so many adventures as of late, that today felt like a normal, easy day when we got in the car first thing and headed to a pulmonology appointment about 2 hours away.

The pulmonologist (lung doc) listened to Jack's breathing, talked about new developments with Jack's health and was really impressed by how our boy is doing. It's always great to have a positive appointment, where we can show how healthy Jack is and be given a pat on the back for being diligent during cold and flu season. We were warned when leaving the NICU about how hard it would be to keep our micro healthy, but no one really explained to us how hard the isolation is emotionally. Today we left the appointment with a sense of accomplishment of how far we've come. It was such a good feeling.

Right after the pulmonologist, we hopped in the car for another 2 hours to see Jack's neurologist. We were anxious for some answers to Jack's mystery illness. Since Jack has been having bouts of sickness since December, we had done some preliminary Google searching.  We came into the appointment with an idea of a diagnosis. Long story short, Jack needs to have some additional tests, but most likely has something called cyclical vomiting syndrome. Obviously, we are not happy about this possibility and wonder how this will affect Jack's life. Basically it is a migraine type of disorder and I am hoping and praying that we come up with a plan that is effective in treating both the nausea and discomfort.

We also discussed Jack's MRI results from last October. Jack's severe prematurity and brain bleeds have affected his brain in very specific areas. The findings were compatible with Jack's gross motor issues. We also discussed the idea of Botox for Jack's stiff left hand and foot. We will be meeting with a separate specialist to go over our Botox options.

All in all, it was a very informative, packed full of medical jargon day. Sometimes I forget how much our lives revolve around the medical community, especially since we've had a few months of relative calm. I forget that we often go to three therapies a week. I forget that Jack has more than ten specialists that take care of him. I just forget at times because it has become our new normal. It's normal for us to go to multiple doctor appointments in one day. It's normal for us to travel four hours to see a specialist.

 It's just our life.
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Sarah Pope said...

It really is quite the accomplishment to survive two RSV seasons and I'm glad that a medical professional is able to recognize the sacrifices you have made in order to keep Jack healthy. I love seeing you out and about with Jack during these summer days! I know that we are enjoying our freedom as well! I'm sorry to hear about the cyclical vomiting syndrome. I will be praying for him and for some answers for you.

Shannon said...

You guys have done an AMAZING job with Jack and he is a simply amazing little man! I'm so sorry to hear about the possibility of a CVS diagnosis. It was "on the table" earlier this week with Marissa as well until they discovered that for some reason her stomach sphincter has decided to stop funcitoning properly. We have an answer to her nausea, gagging and vomiting, but no solution yet.

kasey said...

Jessi - The isolation is really something, isn't it? You're creating these wonderful memories but feel like it's all happening on a little island so far away from the "real" world. One of the most successful therapies (alternative) we found for Andie was cranio-sacral. You might want to look into it for CVS and stiff hand and foot. Happy to talk more about our experiences.

Theresa said...

I am glad you received positive feedback from the docs. Your strength, faith, and determination with Jack is an inspiration. My prayers are with you as you continue your journey to discover consistent treatment for Jack's latest diagnosis. Thank you for sharing-the journals from your vacation adventures and pictures priceless.