It’s been awhile since our last post and for that I am sorry. There are so many other things that take up our time on a daily, weekly, and monthly basis that sometimes its choosing to update the blog or fall asleep and we are very fond of the latter!
Addie is doing very well. She can hold her head up on her own, she can sit up for a few seconds at a time with no help and she even scoots herself backwards on the floor and turns herself around. She is not crawling yet like a normal baby would but that is to be expected. Liz has started feeding her 1st foods baby food and although she does not like peas (like her father) she is doing well with everything else.
She had an EEG at Lurie’s a few weeks ago and they counted 9 seizures but we have upped her medication and again are hoping for more control. I have never known a more happy little girl, she is always full of smiles.
We are going to be changing doctors and hospitals for her medicaid reasons, but I am anticipating a smooth transition as her doctor has office just fifteen minutes from where we live.
I promise we will try to update you more on her progress. Although, Addie’s diagnosis is not what we would wish upon anyone, we thank God everyday for our precious little girl.
A few days ago my wife took Adalyn to Chicago for a video eeg. This test was to tell us about brain activity as well as how the medication was affecting her seizures. The test began at 8 am and lasted through much of the afternoon. Around 4 pm the doctor came in with amazing results. First, the medication had stopped all seizure activity! This is actually great news as this has been our biggest battle yet. The second piece of news amazed the neurologist to the point that she kept telling Liz that she is amazed. Addie’s brain waves or the background was that of a normal functioning child! The neurologist could not even tell that there was a problem with the two sides of the brain communicating with one another as would be the case without her Corpus Callosum. The doctors credit these results to the medication she is on, but they are amazed at the results.
What does this all mean? Her diagnosis has not changed nor has her prognosis changed. Since Addie was born and especially last fall we received news after news that was bad. In receiving this news we are savoring a victory for once. We know that our God is the great Physician and He will do what He deems best. It does not really matter what the doctors say, even if some of them are world renown, it is and always has been in the hands of the Almighty. We are thankful every day for the development that Addie makes and we only pray that Addie reaches the full potential that God has given her.
This past fall Liz and I took Kynsey to the circus. One particular act I was impressed with, were the trapeze artists. The balancing of their body high up in the air to catch another rope or stay on the one they were on was graceful and sometimes breathtaking. I have often admired people who were balanced in their lives. Those that could talk politics but also talk about sports or pop culture. The All American who has a 4.0 grade average etc. With having an Aicardi girl I am finding out real quickly that one secret to keeping your sanity is to stay balanced. There are many things that swirl about our days. For example, Liz is up in Chicago today with Addie for a video eeg, while I am at work, and Kynsey is at home with grandma sick. Lots of things going on right? What do you do?
One thing that I have found very helpful is asking family and friends for help. As much as you want to do everything for yourself or your child, you need help. I cannot be with Kynsey today and neither can Liz, so we asked my mom to step in. A few nights ago Liz’s parents stepped in and took Addie for a couple of nights. You need help, don’t be too proud as I have been at times to ask for it.
Another thing that I have found helpful is to segment your life. I used to be a pro at this, until the diagnosis. I wouldn’t let my work bleed into my play time, or my family time. Now, recently these things have blended, but as life has started to come back into focus I have try to keep everything separate I work at work and at home I am with my family. Sometimes emergencies arise and you have to blend the worlds, so I do and then I try to return things back into their separate arenas. It is the only true way to keep your sanity.
Another important element I have found is getting away from it all. You need time to breathe. I have found that for a few hours each week going out with Liz by ourselves goes a long way in helping us keep our sanity. We need us time. A few hours each week where we are not rushing off to work or doctors appointments, but we are going out to dinner or doing a little shopping. The moments away help us to regenerate ourselves for the days ahead.
Trust me when I say this we have not perfected the balancing act by any means, we have days where we struggle to decide who goes where and when. We double book appointments etc. Sometimes date nights come and go and we were too tired to do anything. Sometimes things just come up and you have to deal with them. To try to keep our sanity through it all, we work diligently to balance everything out to make things work in our fast paced lifestyle.
Last year we started a blog about our daughter Adalyn and her condition as we knew it at the time called Agenesis of the Corpus Callosum. Many things have changed in the last six months, from moving back home to Northwest Indiana to Adalyn’s health status. I know many of our friends and family have stayed updated about Adalyn’s condition through facebook, but we wanted to start a new blog and try to blog for several reasons. One main reason being to keep those of you wanting to be updated regularly with a place to find information.
So where are we now? Adalyn was diagnosed in December with a very rare genetic disorder called Aicardi Syndrome. This Syndrome affects only girls and there is only a 1,000 documented cases in the U.S. If you looked at Adalyn you would not see a girl that looks mentally handicapped but the doctors tell us that more than likely she will be severely challenged in all facets of life. She is a beautiful little girl that can light up a room with her smile. Liz and I believe she is a precious gift from God. The biggest obstacle we face right now for Adalyn is her seizures. The more seizure control we have the better the development will be for her. Right now Addie is on two different medications to help control seizures, she sees her pediatrician two times a week, and we have had two hospital stays at Luhrie’s Children’s Hospital since December. She has another one week stay coming at the beginning of March. We cannot imagine life without her, but life is definitely more complicated than we could have ever imagined with a special needs child. She receives shots once per day and the medication she is on makes her super crabby. Some nights she does not sleep and when that happens most of the time neither do we. In the next few weeks we will be weaning her off of this medication and so we are hoping that her personality will return and the sleeplessness will go away.
With our blog we want to keep you posted, but also let you have some insight on how things are going. Our goals are to keep you informed but also we would love be a help to some future family that does not know it yet, but one day will embark on a similar journey and maybe they will need some encouragement or inspiration along the way.
To be honest there is no phi-sod here. Its everyday life with a dose of God’s grace in taking care of a little girl that has major challenges ahead. We were both taught by so many people growing up that you don’t quit. We don’t plan on quitting or having a pity party for ourselves, we plan on doing what we have always done and that is full steam ahead. Please read and enjoy the adventure with us!