Update on Jackson

Many of you often ask how Jackson is doing so here is an update. First of all Jackson has been diagnosed with Macrocephally-Capillary Malformation Syndrome. This syndrome is extremely rare (less than 200 cases reported worldwide). It is very similar to M-CMTC (marcocephally-cutis marmorata telangiectatica congentia) http://en.wikipedia.org/wiki/Cutis_marmorata_telangiectatica_congenita

You can look at this link to find out more about the syndrome. Jackson was born with port wine stains located on his face and capillary malformations on his body. He was also born with a very large head. Since birth Jackson has seen numerous doctors consisting of a plastic surgeon, an opthalmologist (the port wine stain on his eyelid can cause glaucoma), a developmental pediatrician, a neurosurgeon, a dermatologist, and he will also be seeing a geneticist next week. All of these doctors are located in Grand Rapids and Chicago so we have been doing a lot of traveling.

This week Tuesday Jackson had an MRI because his head continues to grow at a rapid rate. The MRI showed that Jackson had fluid on his brain and he needed a shunt (his previous MRI in December was normal). Much to my surprise the doctor told me that he wanted to do surgery the next morning. So Wedsnesday morning we were back at Spectrum Hospital and Jackson had a shunt placed. Jackson did great and he was discharged already on Thursday. Jackson will have this shunt for the rest of his life. Often revisions are needed to be done with the shunt due to blockages, malfunctions, or infections. So please keep Jackson in your prayers and pray that his shunt will function well for many years without any problems. There is more to tell about Jackson, but I will write about him more in future posts. We are so very thankful for all the prayers and feel so blessed to have such a wonderful family and friends that have helped watch our precious Annika while we are traveling to all of our appointments.