The Pituitary Gland

Hi all!

I'm dedicating a blog to my newest research interest...the pituitary gland! Jameson's most recent MRI showed that his is underdeveloped so we are now adding Endocrinology to our list of specialists and mom is spending her nights researching hormones!! :-P

The pituitary gland is a tiny organ, the size of a pea, found at the base of the brain. As the “master gland” of the body, it produces many hormones that travel throughout the body, directing certain processes or stimulating (causing) other glands to produce other hormones. There are two parts of the pituitary gland, the anterior (front part) and the posterior (back part). Jameson's is underdeveloped in the anterior part.

There are a number of hormones that are produced in the pituitary gland but these three are the ones we're most concerned about for little man:

Growth hormone (GH) - GH stimulates growth in childhood and is important for maintaining a healthy body composition and bone strength.

Adrenocorticotropin (ACTH) - ACTH stimulates the production of cortisol by the adrenal glands. Cortisol helps maintain blood pressure and blood glucose (sugar) levels.

Thyroid-stimulating hormone (TSH) - TSH stimulates the thyroid gland to produce thyroid hormones, which regulate the body's metabolism, energy balance, growth, and nervous system activity.

While these hormones may seem super important, and they are, we are lucky that little man has never showed any major issues with them. (hence why we never tested before this MRI) Obviously his growth has been an issue, but he's always been proportionally small and never dehydrated or malnourished. He's never shown signs or any problems with blood sugar or blood pressure, so his doctors are very happy with that.

Our next few months will include more testing on these hormones to figure out what sorts of treatments would be an option for him and what we decide is right for his life. Its always a balance....and we'll take it one test result at a time. As long as he's happy and feels loved, that's the best treatment anyone can ask for! :-)

Blessings

I feel inspired this afternoon to write a blog about the many blessings we've received lately as we prepare for Jameson's upcoming 2nd birthday party. Yes, Jameson turned 2 years old back in May but since he was in a bad place medically we decided to postpone the party until he was feeling better. 4 months later and what an amazing change he's had! His new seizure med, Onfi, has been a beacon of hope for us. I say that with a disclaimer as we known Jameson's type of epilepsy is complicated and always trying to find its way around his medications. However, I'm pleased that for the time being we have a happy little boy that is sleeping better and playing with toys independently and on a consistent basis.


Its funny the things that you will become grateful and excited for when you're in a situation like ours. I made the decision this month that I'm ready to start the process of getting Jameson's first wheelchair. May not sound like something you'd be excited for your child to get but for me it will be like Christmas morning when its ready. Jameson is going to be 2 1/2 years old and he doesn't deserve to sit in an infant stroller anymore. He's a big boy that has been through so much in his life and he deserves to sit up and see the world like any other 2 year old would. I can't wait to see him explore the world in his chair...supported and comfortable and at the same eye level as any other child his age.


Speaking of blessings, I cannot express enough my excitement for Jameson's upcoming birthday party. We'll have about 50-60 people coming to celebrate the little man and his awesomeness! The weather is supposed to be beautiful and of course, there will be lots of pictures! Can't wait to post them!! :-) 

Making Memories

What a great month for the little man! We have gone full steam ahead with Jameson's bucket list and are making efforts to get out there and make memories and experiences for him. Of course it wouldn't been in true Jameson fashion without a few hiccups along the way….aka a late night ambulance ride last week to the ER….but the bumps in the road sure are a lot easier when you see the amazing things he's doing.

As most of you probably saw on Facebook, little man has gotten his sun goggles and they're working like a charm. I cannot express the feeling of being able to finally take him out into the world after two years of being inside. Even something as simple as sitting out on the back porch or sitting in the grass with little man being able to look up at the clouds is surreal. I was so happy to be able to share his first experience being in a swimming pool at our family reunion with everyone cheering him on. Seeing these memories made for him through other people's eyes is also an amazing gift and makes you incredibly thankful to God.

We continue to work hard towards giving Jameson the best life possible, full of adventure and love. We also continue to work hard at giving him access to the best doctors and treatments available. Today we are heading back to the University of Iowa for a visit with Pulmonology. She will be taking a good look at his lungs and breathing. September we have more big appointments with his Nephrologist and Urologist who watch his kidney and bladder function. Then in October we are back to MN for another inpatient stay while they watch him on vEEG to look at seizures and he'll be having another MRI. We are also still waiting on results back from his Whole Exome Sequencing which will be very exciting when we get those! So another busy few months but that is the life of our tough little man!

As always, we appreciate everyones love and support. We cannot thank you enough for all the kind words and messages. It's because of all of you that we have as much strength as we do to help Jameson fight his battles and have a wonderful life. Thanks again!