Photos

Isn't he so handsome! I just had to share some photos that warm my heart and make me smile. 

Sinemet

I received a call from Logan's neurologist office yesterday. At Logan's last neurology appointment, Dr. B discussed trying a medication to help slow Logan's abnormal movements. Logan has what is called choreoathetosis. His arms, legs, face, and mouth are continuously moving while he is awake. At times the movements appear uncomfortable for him. We also wonder if the movements of his jaw are increasing the amount of saliva he makes. If we could decrease his saliva production, we hope to see less respiratory infections and more comfort. We also hope slowing the movements will enhance his development of new skills. 

Our neurologist consulted with a specialist at Mayo Clinic. We had seen that doctor about a year and a half ago. She recommended we start the medication Sinemet. Sinemet is used for Parkinson's patients. There are some side effects we have to watch closely for. The dose will start very low and can be increased if needed. I hate throwing another medication at Logan but at least this isn't permanent. If it doesn't work then we stop giving it. If it works, this momma will be one happy lady! 

I will keep the updates coming on the progress with the new medication. I am always fascinated by the world of medicine and am on the edge of my seat with what this change may bring. I have some video of Logan from today where you can see some examples of how he moves. 

This video has some commentary from our daughter Lauren that may make you laugh!

Feelings

So, my posts as of late have been few and far between. For good reason, Logan has been doing well. Knock on wood! He has adjusted well to his tracheostomy and has been able to remain at home when he has been ill. The trach has allowed us such easy access to his airway and his nurses watch him like a hawk. Every time he has any hint of an illness coming on, they bring out the full court press. He is so lucky to have such a great team of nurses.

Logan continues to work hard with therapy. He has lots of girlfriends (PT, OT, teacher, etc.). His endurance has improved and he is more interactive and attentive. He is less drugged up these days! He sees his physical medicine rehab doctor at the end of the month for a routine follow up. This doctor keeps an eye on his physical development. He makes sure his hips are working properly since he is not bearing weight. He watches the range of motion in his joints and makes sure Logan isn't having problems with contractures (when parts of the body such as the arms and legs tighten up). Otherwise the medical side of things is being managed well at this time.

For those of you in the Minnesota region, our friends and family are putting on a benefit for Logan on March 2nd. Check out a recent blog post of mine for details. There will be a ton of awesome auction items and lots of activities for kids. We are so lucky and thankful for all the support of Team Logan.

And now to what really got me to post to the blog tonight at 2am! Of course Logan updates are always important. I mean, isn't this blog about him! Well, it is about Logan as well as our journey as a family and with that comes my own commentary!

It is hard to put this out there but I think it's time. I know some people will have a hard time reading this. I have had this building fear of death and more specifically, that of my child. I am scared every day that his time on earth may be short. Unfortunately this comes with the territory of having a child with special needs, undiagnosed, with no clue what his future will hold. We just don't know, I hear so many stories of children with developmental delays who "grow out of it". We know Logan will not just spontaneously get better. It isn't that easy. And with him being so medically complex, it just adds one more component to complicate things.

So, I am scared. I worry, and sometimes to a fault. These days my emotions are raw. It may be the winter weather or just my body and spirit still trying to heal from what we went through in November. I am doing my best to manage how I feel and work through it one day/situation at a time. It isn't always easy but I thought it was time for me to really be honest. I know I have written about the fears I have as Logan's mom. This fear of losing Logan makes me feel less of a mom. I feel weak and feel like I am not keeping the positive attitude that he deserves.

I am sure reading this, many of you are shaking your heads in disagreement with my statements. Yes, I am a good mom and my fears should not make me less than what he deserves. But like I said, these are my feelings and boy it sucks to have them. I know I will always worry about Logan's future,. I am his mom, I kinda have a front row seat in his life. I just hope the rawness of these emotions will be easier to manage. I don't like to cry in front of people and I sure as heck don't want to show weakness. Sounds a little silly, doesn't it? I guess I am stubborn like that.

Thank you for reading this post. I do my best to put the truth of our journey out there and do as little censoring as possible. It is like peeling away an onion one layer at a time. I am peeling away parts of our journey as a family and along the way that onion causes a few stinging tears

Winter Funk

This momma is in a funk.

 The winter lull has hit. My tank is empty and any bit of motivation seems to have fled. This seems to happen every winter as I am sure it affects many other people too. I didn't realize I was feeling so blue until I mentioned to one of Logan's nurses that I was in a funk. For the past week I just couldn't figure out why I wanted to sleep all the time. My house is a mess. I am behind on a big list of to do's. And I feel like crud. I come home from work drained and exhausted. I wake up with no interest in accomplishing tasks.

So now I know it is the winter funk! So now what to do? I think I will embrace it and take the extra time to snuggle my kiddos. Enjoy a glass of wine from time to time and let things go. This funk may be the universe telling me to slow down. Okay, alright! I am sure it won't last long. 

So cheers to the winter funk. Hopefully this means spring is around the corner!