Questionnaire

I'm filling out some school paperwork tonight. There are a lot of questions about Logan's development. It's always hard to fill these out. There are so many questions that we answer no or not applicable to. When it comes to the medications and hospitalizations section I always write...more than we can count and then provide a little bit of elaboration on what he is on medications for and what types of surgeries or hospitalizations he has had.

When questions are asked about when he talked, walked, held toys, etc. my heart breaks. Logan learned to coo and roll over in the first year of his life but after that, these skills were lost. He was able to hold his head up and put some weight on his legs at times as an infant. I have pictures of him in the baby saucer holding his head up and him on his tummy pushing up off his arms with his head up.

Over time, skills he did gain are now gone. Where are we now? Logan still loves to be cuddled. It is my favorite activity with him. I hold him and press my cheek against his and he calms and closes his eyes. He loves to be sung to. He will sit and watch whoever sings as he listens calmly to the music. He loves to watch his sister Lauren (7 years old) play. He cannot participate but when she plays where he can see her and talks to him throughout, he watches on. She reads to him and also plays make believe with him. It melts my heart to see how tender and loving she is with him. She truly shows unconditional love despite the jealousy that occurs at times!!

Back to the questionnaire, this is not the first I have ever filled out. I can't tell you how many I have filled out and often the questions are the same. I find I am getting more sarcastic in my answers with each questionnaire. I don't mean to. I think it is a form of coping with the reality we are faced with. We have a son that requires help with all daily cares. He cannot move himself, he cannot tells us what he needs, and cannot tell us what is bothering him. He can't say, "I hate this movie, why do you always put it on for me"! I really hope we aren't torturing him. We work really hard to watch his non verbal behaviors to figure out what he likes or dislikes.

As for the rest of his health, Logan is still doing really well. He still has yet to be hospitalized for an illness in three years. We are able to keep him home and weather the storm here. I still knock on wood regularly as we are so lucky to have a great staff of nurses to help manage every illness that comes Logan's way.

We saw the seizure specialist this week. We are continuing to increase his seizure medications as we have done for many months. There is still room to increase the doses based on his weight but we must watch his lab work closely to ensure there are no detrimental effects and also watch for side effects. If these most recent dose increases don't work, we have two more options of medications. Logan continues to have at least six tonic clonic, otherwise known as grand mal seizures per day. He also has many other small seizures that are less prominent and debilitating but still concerning. We still continue to work to eliminate seizures but always know that this may be a battle we chase and don't completely win. If anything, we just want them to lessen and remain short. That way Logan experiences less distress and comfort. If we can eliminate them, I would probably stand from the roof tops and sing!!!

Medical marijuana is not an option at this time. It is legalized for epilepsy in Minnesota and we would be able to have Logan certified to receive it but unfortunately the cost is just too high. We spend a large sum of money per month paying a parental fee for his medical assistance in addition to the monthly fee that comes out of my check for private insurance. The cost of medical marijuana is just too far out of reach for our budget. It is not proven that this option would work, but it would be nice if it was affordable enough for us to try it!

So for now, we continue to support Logan's comfort. He goes to preschool as much as possible. We do the best we can getting him out and about to activities. We are excited for breakfast with Santa! We are working on getting approval from our county to have some remodeling done to his room and bathroom to assist in accommodating his increasing weight! He is 52lbs and its not getting any easier to lift him these days. We are coming up on Thanksgiving and I almost feel ashamed to complain as much as I have in this post.

I am truly thankful for so many things in my life. I am healthy after recent gallbladder removal. My children are well cared for and otherwise healthy. They are thriving and teaching me new things constantly. They make me a better mother every day by teaching me patience, unconditional love, and gratitude. My career is going very well and I feel very fulfilled in what I do outside of the home so many days of the week. My husband has a great job and comes home excited to talk about the great day he had. He supports me in all I do and listens to my rants. He does a much better job than I do at keeping the house in order, disciplining and teaching our 7 year old, and keeping our family fed. This Thanksgiving holiday will be spent with friends and family enjoying all we have to be thankful for. And for Logan, we will continue to cherish each and every moment and do everything in our power to keep him comfortable and thriving. This, we are so thankful for each and every day!