So here I am, back to blogging! Last time you heard from me it was thanksgiving. The holidays were great in our household. We hosted a few gatherings and also had some special family time. The house was decorated and I went overboard making cookies! The kids got a few presents. I just didn't have the time I have had in the past to overspend! It was a good thing. Lauren had enough to keep her happy and she played with all the toys she received. Logan had some great presents including a new bubble blower. It is so hard to shop for him but we had good luck this year.
The new year brought a difficult time. My sister in law had been fighting breast cancer for a few months. A couple weeks ago, that battle ended. She fought so hard but the cancer was too aggressive. We all surrounded her with our love and spent those last few days with her. It was so sudden and shocking. It is so unfair. She was young with so much ahead of her and it was gone in an instant. It still doesn't seem real. Like a dream that we will wake up from. My husbands family is so strong. They support each other with ease and grace. I make it sound like it was easy, don't be fooled, it wasn't. It still isn't. Losing a loved one is not easy nor do the feelings of grief just fade away. She will be missed so much but her legacy lives on through her bright and beautiful daughter.
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Logan has remained on a solid path of health. Still no major issues! He had a slew of doctors appointments before the end of the year. His pulmonologist was pretty impressed with how healthy he has remained. I attribute this to his vigilant nurses and amazing parents! Yes, I am tooting our horn! We deserve it! It's not easy keeping this kid healthy, especially during cold and flu season.
Logan has recently started having concerning tantrums. He is three years old, so temper tantrums would be expected. I thought that was what we were dealing with but my gut says differently. When he has these outbursts, they are unpredictable and scary. His whole body tightens up, he begins to writhe uncontrollably, and begins to cry so hard you can hear it (with his trach you generally can't hear audible noise unless he forcefully passes air through his vocal cords). His eyes get big and he has this look of fear.
I'm not sure it is from saliva in his mouth that he is afraid to swallow as he may aspirate. It does not appear seizure like. It resolves quickly so I don't think it is related to any chronic pain. He can be calmed if talked to and held. I hate to see him do it. It occurs many times a day and it scares me. He is hard to hold and appears so scared. I have a feeling part of it is related to sensory overload.
I have also noted some other subtle signs of concern. Logan just isn't moving like he used to. I was watching video of him from a year ago. I couldn't believe how much he had changed. He used to sit in his tumbleform chair and hold up his head so well. He would kick his arms and legs like crazy and he was still trying to roll over occasionally.
Now, he doesn't attempt to roll at all. He stays in the same position. He still moves his arms a ton, but his leg movements have slowed. We have him on biotin and thiamine. These are meant to possibly slow the progression of brain degeneration and symptoms. At first, the vitamins seemed to improve his symptoms including his abnormal movements. Now,I am worried that he has lost skills and is actively regressing. I hate to say these things. I would rather talk about him meeting milestones but unfortunately that is not Logan's path,
I don't want to make too big of a deal about these subtle changes. Most people wouldn't even notice. I am just so hyper sensitive to any changes. Overall he is doing so well. He would probably brag at how many times he has broken and pulled out his feeding tube. He must just want more attention! We hope to have a fix to our feeding woes. I will blog about it another day.
I know I have been off the radar a while. I just want to thank all of our family and friends for the incredible support in 2013. The year went so fast! We wouldn't be in such good shape without Team Logan!
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