Once in a lifetime!

A note to readers of this blog...
In an effort to structure the blog a little more going forward, I wanted to let you know that I will start dividing it into three types of posts. Some days there will be all three types, like today. First is the Spotlight, which will serve as a journal of what we've been up to. Secondly there will be a section for Medical Messages, which will outline medical issues, situations and concerns that I have been privy to as we walk through the illnesses with which my children have been diagnosed. Thirdly, there will be a Spiritual Sideline at the end, which will sometimes contain a prayer, Scripture or devotion that resonated in my heart while I was writing the post. Sometimes there won't be all three segments in each post. I hope this helps you be able to look through the blogs more easily depending on where you are in the audience of people who follow this blog. Thank you for stopping by and I pray that you are well and hopeful that you can "Live Life Fully Today" right along with us. Thanks again for stopping by!

Sophie and Aiden

Weekend Spotlight....
This was one of the best weekends we've had in a very very long time. My daughter and my son were both healthy. My incredible boyfriend, Adam, brought his kids to visit us. All four of them. Yes, that means if things progress the way we all hope, there would be a total of six children between us. SIX!!! I always wanted kids, but never in my life imagined SIX. What an amazing blessing each and every one of them are! Precious gifts from God, each one!

All Six Kids!!!

The Big Kids

The Little Kids

The Girls

The Guys

It was the first time we had ever all been together face-to-face. We made some great once-in-a-lifetime type memories that I will treasure and ponder for the rest of my life. I haven't been this happy about where my life is heading in a long time, and this amazing man and his family are a big huge part of why. They got here on Saturday afternoon and we grilled and had a great dinner together, got everyone bathed and put to bed and even had time to play at the park. Aiden was very overstimulated, but all in all had a wonderful time. I knew Adam was a great dad, but seeing him with all the kids together just really solidified things for me in a lot of ways.

Everyone went to bed at a reasonable hour and we (rather ambitiously I might add) got everyone together and went over to church. Afterward, we came home, got some lunch and the littlest three got their naps and the big kids played while they waited for Sophie to get home from her dads. It was so cute to see Sophie and Adam's oldest girl play together. They were inseparable from the very moment they met. They are both into horses, puppies and enjoyed playing stuffed animals together. I am so excited that the girls (and all the kids for that matter) have been raised with similar values and they were able to get along so well. As a matter of fact, all six of the children got along well. I realize that they will eventually have challenges if things progress to the next level, but for now everything went very well.

I think we're headed in the right direction. And, after six months of dating, it was time for our children to meet. It just feels right...

Adam and I as we were going into church this morning.

Medical Messages... Epilepsy

What is Epilepsy?

Epilepsy is a neurological condition caused by sudden brief changes in the brain's electrical balance. When there are excess electrical discharges in the brain, seizures occur. Seizures can alter awareness, physical movements, consciousness or actions. Seizures generally last from a few seconds to a few minutes.

Epilepsy is often called a "seizure disorder." Both terms are used to describe recurring seizures.

Epilepsy is not a disease, mental illness or a sign of low intelligence. It is not contagious. Epilepsy is generally a chronic and/or lifelong condition.

When epilepsy develops
A person could have a seizure at any time during his or her life. In fact, it is estimated that 1 in 10 people will have a seizure during his or her life time. Approximately 1 in 2 percent of the population has epilepsy/seizure disorders. About one-third of the 186,000 cases diagnosed each year occur in childhood. However, senior citizens are increasingly diagnosed with epilepsy/seizure disorders.

Treatment
The most common treatment for epilepsy/seizure disorders is anti epileptic medications. Many people with epilepsy are able to control their seizures with medications. However, the side effects of medications can be severe, and some people with epilepsy do not respond well to medications and have little or no control of seizures. In some individuals, surgery can also be used to treat epilepsy/seizures disorders.

Aiden's Case...

In Aiden's case specifically, we first noticed seizures during a series of viral and bacterial illnesses that he had when he was just over one year-old last summer. He was sick over and over and we thought he was having febrile seizures, but the seizures became more and more chronic and frequent and were not always coincidental with fever, and there were major developmental delays (gross and fine motor). His temps got over 103 a few times (once over 104.7) and after spending a lot of time back and forth to doctors, and finally finding a great neurologist, he was diagnosed with Epilepsy and Cerebral Palsy. We also got to the bottom of why he kept getting sick by doing a series of tests with an Allergy/Immunology specialist who diagnosed the Hypogammaglobulenemia of Prematurity, that he will HOPEFULLY outgrow as his system catches up with his prematurity. He was born at 30.5 weeks (see earlier posts). Aiden is now on an anti-epileptic medicine called Keppra. He takes it twice a day. It's VERY sensitive, and the dosing and scheduling of the medicine is extremely important. I don't know that I've forgotten a dose the entire time he's been on the medicine because when Aiden has a seizure, as a mom, it scares me half to death. You feel completely powerless, and though the neurologist assured us that the seizures would likely not harm Aiden long-term unless they last longer than 5 minutes, they can be extremely scary. I have a few more gray hairs than I did this time last year. Aiden also now has an emergency medicine that is pre-dosed and is dispensed in the even that he has a seizure that lasts longer than two minutes. He has had a few lengthy seizures, the longest lasting over 15 minutes, hence the Neurologist giving him the new medicine to help prevent any long-term damage. Epilepsy is a slippery slope, especially with a quickly growing boy, we constantly have to monitor his medicine and make sure that his dosing is adapted for his growth. Thankfully for us, Aiden has received physical and occupational therapy for his motor delays and is developing very nicely now given his diagnoses.

Credit goes to eftx.org for publishing the italicized information about Epilepsy.

Spiritual Sideline...
This is from Jim's sermon today... Read John 9:25 and think of what you are blind to in your life, and earnestly ask God to intervene. Ask him to open your eyes so you can see the light and let go of the sin and secrets that are permeating that one part of your life. Be fully honest with yourself and give this area over to God. I have done this exercise and it has made an amazing difference in an area of my life that I thought would just continue to tear me apart. I am by no means perfect, but am trying every day to be just a little more like Christ. Baby steps...

May the Grace and Peace of our Lord comfort you now and always... Amen

Goodnight friends,
J