Thanksgiving 2013

I hope everyone had a fantastic Thanksgiving. Oh how thankful I am this year. I just read my post from last year and it was bitter sweet. Last year Logan was in the hospital just two days out from having a tracheostomy placed. This year we were all home and Joel whipped up a fine feast! I say it over and over again but I still can't say it enough, Logan has had a great year! 

Today also had some tough moments. I am always torn on these days. I feel as though Logan must be included in the festivities but at the same time he can't be part of everything. For one thing, he can't eat. Having a chef for a dad and being in a home where the smell of food is always around has to be torture. So when we eat, Logan just hangs out. And when the kids are running around and the adults are sitting chatting, he still lays around. Of course we give him toys to play with, we hold him, put him in his chair. But despite doing what seems right, it still doesn't feel good. 

I don't feel as though I do enough to include him and when I do it goes south. He gets anxious and uncomfortable around too many people and too much noise. But at the same time seems to enjoy taking in all the commotion. I wish I knew how he felt on these days. I think my feelings boil down to me attempting to get past yet another stage of loss. Loss of the "normal" experience of thanksgiving. I wish he could watch the parade and then tell me all about it. I wish he could eat thanksgiving dinner and pumpkin pie. I want him to be able to tell me what he wants for Christmas and see the excitement in his eyes when we tell him about Santa. 

That is why these days are tough. 

Today was a day of thanks and blessings. It was truly a wonderful day. I just had some moments of feeling like an inadequate parent, but this comes with the territory. I can't say enough, how proud I am to be Logan and Lauren's mom and to have such a kind and patient husband. We had a great day with our family and missed those who we could not be with.

Thank you Team Logan for all the amazing support this past year. We are so blessed to have such a strong team of people cheering on Logan. He is an amazing little boy! 

Happy Thanksgiving! Gobble, gobble!

Genetics update

For some reason I chose today to call Logan's genetics office to see about an update on some pending DNA tests. He had blood drawn in October 2012 for Exome sequencing. This was a two part test that was going to take about a year to complete. The first part came back normal.

We had been expecting the final results by now but it hasn't been in the forefront of our minds. Today it was on my mind for some reason. Well in true Logan fashion, we couldn't get clear cut results. I was expecting normal results as this has been the pattern thus far. 

Instead the genetic counselor said a variant was found on Logan's X chromosome. It was reported by the lab as a variant of unspecified significance. This variant is known to cause developmental delays and cognitive impairment. The kicker is, within this variant is a mutation. Logan's mutation has never been reported before. 

So what does this mean? Who the heck knows! I have a feeling it is just an incidental finding but I could be wrong. The genetic counselor was giving me the raw data considering the results had just arrived yesterday. Logan's geneticist has not had a chance to interpret the results. So the counselor and doctor plan to do some research and get back to me next week. The counselor did say that the variant found does not cause degenerative disorders and that is why she is skeptical of the findings. For those who don't know, Logan's brain is degenerating. 

So we wait and trust me, it isn't easy. Answers won't fix Logan but they may give us a better understanding of what is going on. I am glad I didn't push for the name of the variant, otherwise I would be all over the internet right now! In the meantime, we will spend a wonderful thanksgiving with family as we have so much to be thankful for! 

Where has the time gone!

Wow, where did the time go. This blogger fell off the radar! 

To be honest, life is great. Life is also busy, but what's new. I can't believe this week is thanksgiving. So much to be thankful for. I was talking to one of the chaplains at work on Friday and thought, one year ago, almost to the day, Logan had his trach surgery. November 20th was the day. 

I remember that day so vividly. I could sit and write every detail down like it was yesterday. I had so much confidence in Logan and his doctors on that day. I just knew we made the right choice. And fast forward to today, it was the best thing we could have done. 

The one memory of that day I really want to share was seeing Logan's face for the first time. Prior to that, he had a breathing tube in his mouth with all sorts of tape wrapped around it and plastered to his face. To see his darling face again was a gift from god. His skin so soft and kissable. His little lips puckered up like only Logan can do when he is sleeping. 

And from that day on, life continued to move in a positive direction. Logan is healthy and content. He has toddler moments from time to time, but all in all is an amazing young man. And this year, we are all home for thanksgiving! Whoo hoo! 

This is the most recent photo I have! I am working full time these days so the mommy photographer has been on hiatus! He loves his Thomas the Train pillow! 

Halloween 2013

Halloween 2013: 

We had a decent Halloween. It was a little chilly but we were able to get Logan out trick or treating without having to cover his costume with a jacket. I made it to a couple houses with the kids. Lauren had a major melt down at the third house and at that point I was ready to be done. Logan's wheelchair was a pain to get over the curbs and up driveways. Once we got to each house he had to wait back away from the doors as he couldn't get up the stairs. 

There are times where Logan's experience is modified in a way that ticks me off. I can control a lot of experiences he has but this was not one of them. So instead of being okay with it, I got mad. I was on the verge of tears and fuming mad. I want him to have as many "normal" opportunities as possible but when they don't go well, I start to think it is easier to just not participate. But that's not fair for Logan and who am I to say that he didn't enjoy trick or treating. So finally our cue to go home came in the form of rain! Hallelujah for mommy! 

We returned home and Lauren and Joel continued the hunt for candy. Logan assumed the job of welcoming committee as I handed out candy. He seemed much more content in this role and I was much more relaxed. All in all we survived. I wished we had a better experience but that is the mom in me. Nothing is ever good enough! 

On another note, tomorrow marks one year since Logan's big febrile seizure that landed him in the hospital for over 40 days.  I spent a few minutes today reading my blog posts from those first few days. It was hard to read and I couldn't help but cry. The emotions feel so fresh. I will save my thoughts for a post tomorrow. Until then...