The Ups and The Downs and The Depths of MPS

It’s been an incredibly challenging month for my mind and my heart. A couple of weeks ago Jack went under general anesthesia for a few procedures- ear tubes placement, ABR (hearing test), MRI of the brain and spinal MRI. It marked my 6 year old sons 12th surgery. And by no means does it make … Continue reading →

Arrrr!

September 7th marked Jack’s 6th birthday. For the past 6 months he has asked about having a pirate “Arrr” “Birfday Partay”, so after 6 months of counting down, the big day happened. I would say it was a huge success at many levels! First, he was healthy enough to celebrate it! Secondly, we are now … Continue reading →

Rewards

Last week marked a year of living in Illinois. And a year since we started attacking Jacks antibodies. Boy has it been a long, hard year but filled with so many blessed moments. My life patterns around Jacks care has consistently presented extreme hardships followed by rewards. My rewards have came in a variety of … Continue reading →

Sacrifice

Jack’s body continues to react to his much needed enzyme which means we continue to receive his weekly infusions at the hospital. He remains a trooper, as he leaves his sister who is playing with toys at home to head to the hospital. He is aware it’s summer time as we pass kids who are … Continue reading →

Slow down summer and MPS

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 →

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 →

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