More results

So we found out two weeks ago that Logan's pending DNA sequencing was back. I have been given so many random timelines as to when this test would be complete. We were told about a month ago, that the results would not be back until July. Suddenly results appeared! This test was a two step process and we were on the second leg. Well, the second set of testing came back unremarkable. No surprise here. I just knew this wasn't going to be the answer. We started this testing in October of 2012. Since then, so much has changed. Logan is so different. We have learned many new things about his unknown diagnosis including the onset of brain degeneration.

We have learned that he and his cousin Sarah, who passed away at the age of two and a half are most likely to have the same medical problem. Their brain MRI's are very, very similar. This points to Logan most likely having an inherited disorder from me as it was my sister who gave birth to Sarah. 

Our neurologist at Mayo Clinic thinks the answer may lie in the mitochondria. These are the powerhouses of every cell. Most children and adults with mitochondrial disorders have progressive worsening of their disease process including loss of motor function. Logan shares so many similar symptoms and a similar path as many children with mitochondrial disorders. We are waiting to hear back as to whether insurance will cover this testing so for now we wait as usual! 

Valentines day just flew by. Logan had a celebration at school. He brought valentines from the movie Planes and some bubbles. I always like to buy the kids a few things for the holidays. It is so easy to shop for Lauren; candy, candy, and toys. For Logan; no candy and really no toys. He can't pick up toys and play with them and to buy an adapted toy, it's at least a hundred bucks and most of the time they don't work well for him. So I ended up buying him a movie and Lauren found him this cute caterpillar stuffed toy. His nurses give it to him to snuggle at night. It is the perfect size to cuddle with! 

I have come to dread holidays more and more. I feel inadequate. Logan gets barely anything while Lauren is spoiled rotten. I have no idea what he wants or likes. I think he likes music, movies, and books but really I have no clue. He should be playing with trains and climbing all over the furniture in the house. It just isn't fair. We have so little to choose for him and so little to entertain him with. And it is impossible to know if he enjoys what we do play with. All I know is that when I hold him in my arms and he snuggles in to my neck, he is happy. He is relaxed and all is okay. 

Easter will be up next and I welcome any ideas for gifts! I'm sure many people will say it's not about the gift and that holidays are about so much more. That is easy to say, but when you have a five year old at home that gets to participate in the traditions like so many other kids, it is hard to stomach not being able to treat your other child the same. We try to adapt things to him to make it similar but nothing really compares. It hurts so badly not to be a able to provide the same experience. 

Once again, I blab and end up in this negative place. I can say I don't talk this negatively every day (don't ask my husband!). There is something a out this blog forum that just pulls it out of me. I spew thoughts onto this artificial paper and tears stream down from my face. It is therapeutic and torturous all at the same time! 

P.S. I haven't even started on the topic of Logan's feeding tube issues. Let's just say his tube is being held in by tape with the hopes that the hospital can get his size feeding tube ordered and get us in for an appt. ASAP! More to come on that whole mess!