Welcome to Jeremy World : November 2017

I have been working on this update for several months which is the norm for me. The thought still remains in my heart to one day write a book/books to be inspirational faith based or possible children’s books. will be a series of children’s books. For the time being there is not enough time to pursue this avenue.

I found a previous post about warning alarm because like so many mornings I am woke up from a deep sleep with my security alarm blaring because my son will drop something and my alarm picks it up as a window break. The alarm is to warn me if someone is trying to get into my house. I started to notice road construction and the warnings that go with it, especially traveling on I-44, you see, “road construction ahead” and then “left lane ends in 1 mile” and the final flashing lights “merge now” yet so many drivers push that to the limits. We see warning signs put in place to protect us, GOD has given us warning signs but yet we often push it to the limit. This has been my heart and realize I need to make more effort to pray for our leaders and cry out to God and turn from my sins. 2 Chronicles 7:14, “and my people who are called by my name humble themselves and pray and seek my face and turn from their wicked ways, then I will hear heaven, will forgive their sin and heal their land”

We started a new era as Jeremy turned 18 in August. Where did the time go? because I’m pretty sure he was just born. It has been a little crazy with all the hoop jumping. I went through the process and obtained guardianship, that was a fairly easy process. I do however stand my ground and feel it’s crazy as his mom for the past 18 years to pay a lawyer and petition the courts to retain that right. But it is done. I filed for SSI the day after he turned 18 and that has been a hassle, but I am finally his representative payee and we are on that journey. We experienced our first hiccup with medical, we went to the ER and was shuffled over to the adult ER. I thought I would have an anxiety attack or need bail money and I wasn’t prepared for that. It turned out not to be so bad, although eye opening. I feel the doctors should have listened to my expertise more and we will get there. Our nurse was so amazing and helped the entire process. I’ve been talking about a family advisory council for the adult hospital and gears are turning to get that started.

Jeremy had an amazing summer, he was so happy, had fun, rested, full of energy and healthy. He attended Camp Barnabas again for the 3^rd summer and had a blast. I was grateful that Kristy could take Jeremy to camp for me so I could board a plane to Jacksonville, FL. This was my first vacation that was just vacation, a week of nothing to do with medical, no conference just fun in the sun. I spent the week with a friend, going to the ocean, all the amazing wonders of GOD and relaxing. We both enjoyed our week of fun but was glad to be reunited and back home. Mollie the cat however, was in mourning for most the week, but was grateful to a friend, Misty who came by to check on her, keep her fed and watered and attention.

Jeremy managed to go 4 months with no antibiotic but end of summer developed an ear infection and then, strep throat and UTI. We got some results back from the Immunologist and Jeremy has low T- cell Lymphocytes so he can’t fight a viral infections. We are waiting for one more test results to come back to see if this is genetic and where do we go from here. I have to say that news took me back. I have seen Jeremy regress over the past 4 years, motor and definitely in immunity. He woke up one Saturday morning with a little pimple on his right elbow opposite side of the horror cellulitis infections last year. I used all the education I had learned on skin infections from Dr. Martin, our amazing infectious disease doctor. He started running a fever and by early Sunday morning high fever, the pimple was gone, but the area was red, warm to the touch so off to the ER we went. I think the quick notice of this, slowing it down & getting treated definitely getting him on the right antibiotic prevented it from getting worse.

I then got to take a fall trip with my best friend, Kelly Hamilton to Seattle Washington it was so beautiful with so many amazing sights.