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.

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! 

Hello Again!

Hello again! Once again, it has been a long time since I have blogged. Life seems to go a mile a minute and by the end of the day, blogging is an after thought. There are so many nights I lay in bed and think about what I would write but then realize sleep is more important!

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. 

-----------------------------------------------------------------------------------------------------------------------

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! 

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!