Summer is in full swing. Although delayed with surgery recovery, appointments, and recent illness it’s now here. Summer for us means long family bike rides, pool time, picnics, outdoor movies/music, golf, baseball games, farmers markets, and festivals. This summer has brought changes for us. Juliet wanting to do it all, take it in and Jack … Continue reading
Tagged with Hunter Syndrome …
National MPS Awareness Day!
Tomorrow is National MPS Awareness Day, please show your support by wearing purple and sharing Jack’s story or website. Here’s Jack!
Recharging the batteries
It has been a really intense past 6 weeks since Jack’s shunt revision, we have watched and waited for Jack to feel better but instead noticed subtle to not so subtle signs of what would appear to be a faulty shunt. We tried to vacation which ended with a visit to the hospital to adjust … Continue reading
Lists, interruptions and catching up
As long as I can remember I have always been really good at making lists. Maybe not a great checker off-er but always dedicated to creating the list(s). Then came along Jack, and the lists became overwhelming long with the pressure to always accomplish. Well this past month we had numerous labs, procedures, appointments, infusions, … Continue reading
Packing for vacation and heading to the hospital
<a href="https://heresjack.com/wp-content/uploads/2013/03/20130324-080738.jpg" Earlier this week I was putting sunscreen, swimsuits, and shorts into a suitcase. As I was putting in the final selections I realized I was attempting to be excited to escape this Midwest cold and snow to replace it with sun and beach, however there was a nagging ache in my gut. I … Continue reading
The latest and the GREATEST
We march onward and upward! JnJ has heard your voices, and so I thank you all from the bottom of my heart! Thank you, thank you, thank you! Here is the recent update from Andrew McFadyen of The Isaac Foundation. Progress with JnJ commitment
JnJ saga continues…
A quick thank you to all who voiced your opinion on http://www.shameonjnj.com page. And thank you to those of you who participated in the email blitz that occurred this week. I know some of you have reached out in regards to the generic response letter you received. Please see my friend Deb’s blog to better … Continue reading
How far would or will you go?
Most parents would do anything to keep their children safe. But what can parents do when their child is sick with a deadly disease? And to what length will they go? As I reflect on the past 5 & 1/2 years of Jack’s life I could write a very long list of sacrifices I made. … Continue reading
Defining moment
Wednesday, January 23rd 2009 MPS entered our world and today Wednesday, January 23rd 2013 marks 4 years since Jack’s diagnosis. As I have mentioned in past “anniversary” posts one never forgets that defining moment. That very second you life goes from clarity to upside down, and blurry. I still recall the room, the people present, … Continue reading
Striving for balance and running out of chocolate
The recent lab results are back and Jack’s antibody titers continue to decrease. Still not where we need to be but down enough for our oncologist and geneticist to take away the booster drugs (the big guns that we dislike) and begin the maintenance plan. . The team is confidence the titers will continue to … Continue reading
Here's Jack! 
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