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 outside playing and having fun, he on the other hand road trips to the city to sit in a hospital room all day. He is not alone, other little people are here doing the same, giving up summer for needed medications. All of us parents scramble to get their child’s infusions done early in the week, in hopes for a holiday (hospital) break, in result a full house today. We are infusing now and watching Brave for the 50th time. Infusion day means movie day, Jack enjoys his movies, mom always gets excited when a new release comes out on DVD, spices up the day. Come on new releases were ready!
We will receive very important labs this week – we are trying hard to be patient as we await these findings. Praying for normalized antibodies and decreased GAG levels. Fingers and toes crossed.
On a fun note, we were able to go back to Jason’s home town for a family get together. PaPa and NaNa had their 40th anniversary and we also able to meet our new baby cousin Nora. Jack loves babies and immediately loved Nora. It’s so incredible to see such a tough kid turn so soft and sensitive. MPS has robbed him of many things but he still has a gentle, loving soul. Praise God!