Disclaimer: The author of the content below is not a medical professional and does not have any medical training. As such, the contents on this page, including text, graphics, images, and any other material are for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Our full medical disclaimer can be found by clicking here.

Medical Marijuana Clinic

We have started the process of getting our medical marijuana cards for James now that medical marijuana is legal in the state of Illinois. We had two meetings at a local clinic—one last weekend and one yesterday—to go over James’ medical history and to go over the process of actually getting our cards. The doctor at the clinic received James’ medical records and as he was going through them with us, there was a diagnosis in there that was never mentioned to us before: Shprintzen-Goldberg Syndrome.

According to the Cleveland Clinic, Shprintzen-Goldberg Syndrome is a rare genetic disorder that affects several parts of your body. People with the syndrome often have:

• • Abnormal facial features.
  • Craniosynostosis (when the skull bones fuse too early during fetal development).
  • Skeletal abnormalities.
  • Neurological problems, such as intellectual disability or developmental delays.
  • Cardiovascular deformities.

They go on to say that the syndrome is rare and that there are fewer than 50 cases described in medical literature.

James has seen so many different doctors in his short life; I wonder which one put that in his medical records. And if it’s so rare, do we need to worry about James becoming part of some medical study so that they can further understand this syndrome? Hopefully not. This kid has enough going on already. I don’t want him to become some pin cushion, being poked and prodded for science.

We have a meeting with our neurologist on Wednesday so hopefully he will be on board and approve of James starting medical marijuana. We know it has been a bit controversial, but James has tried everything else. This seems like the next logical step. We need to get these damn seizures under control! He has suffered far too long, and Stacy and I feel so helpless.

Trip to the Pumpkin Farm

Stacy and James had a mommy & son day last Sunday and went to a pumpkin farm with Bounce Children’s Foundation. If you’re local to the Chicago area and have a special needs child, I encourage you to join. They host many fun trips and events throughout the year. It’s also an opportunity to meet and talk with other special needs families.

It was a bit hot, so they didn’t stay too long because James doesn’t do well in the heat, but he did get to see (and feed) some of the animals that they have at their little zoo and go on a hayride.

Shirts

Okay, totally changing topics here, but I have an honest question. How many shirts does one kid really need? I mean seriously think about this. Do you have a number in mind? There are at most 31 days in a month, so would 30 be enough shirts, one for every day of the month? Stacy recently bought James 60 new larger sized hangers to replace the smaller kids’ hangers…and she still ran out of hangers! He has close to 80 shirts! He could go almost 3 months without wearing the same shirt twice.

Stacy swears that she goes through his shirts every so often and gets rid of the ones he has outgrown or just doesn’t wear any more. Doesn’t 80 shirts seem like a lot of shirts? I will admit, though, that he does have some nice outfits.

And of course, we see shirts like this one and say that James needs that shirt:

And this one.

We use that line so frequently in this house, we just had to buy the shirt. Whenever James is acting up: “You’re killing me smalls!” We mean it in the most loving way, though.