Saturday, February 22, 2014

More Tests


I heard from genetics this week that insurance will cover further mitochondrial testing. Thankfully Baylor College still has samples from Logan. Makes the process much smoother! They are estimating 70 business days for results. If it really only takes that long, it will be one of the shortest turn arounds for results we've had so far! I hope this finally gives us answers. 

Logan had yet another feeding tube issue last weekend. It was loose in the morning, meaning it was pulling away from the skin. We suspected the balloon that holds the tube in his body broke and it did. I have no idea how this keeps happening. We all work very hard to protect his tube. I could write paragraphs on all the ways we keep his tube from getting pulled! 

Anyways, after a visit to the ER last Saturday, we learned that hospitals don't always have supplies. They were out of his size feeding tube. They did have the size at the other children's hospital across town but the radiologist was leaving soon and there was no radiologist at the other hospital to put it in. They don't have a radiologist in house 24/7. Big bummer! We were initially told we would have to be admitted to get Logan IV fluids until the tube could be replaced. I ended up convincing the doctor to take an X-ray to see if the tube was still in far enough. When we noted the problem at home we immediately taped it down. The X-Ray showed it was in good position so we took him home with a lot of tape and was able to feed him. On Monday the tube was sent over from the other hospital and it was changed. 

Logan's surgery to have a Nissen Fundoplication can't come soon enough. At the end of March, he will undergo the surgery. The goal of this surgery will be to allow Logan to be fed into his stomach versus into the intestines. This means he will have a feeding tube that we can change at home and Logan will have the ability to absorb food and medications better. We are hoping to only be in the hospital a couple of days. Fingers crossed! 

Otherwise all is well here. We just had another snow-maggedon! About 10-11 inches in one night. Thank goodness for snow blowers and husbands! The roads are still ice and snow packed as now we are moving into a polar vortex! Who hoo. I am adding a few pictures from this past week. Hope everyone is well.










Sunday, February 16, 2014

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!