Christmas Wrap Up and Happy New Year

Here are a few photos from our low key Christmas Eve and Christmas Day plus the photo from visiting Santa. As of today, all family Christmas celebrations are complete. We spent the holidays with friends and family and had many different celebrations. We are so lucky everyone comes to us to visit. It is just too hard to take Logan out of town. 

Logan had an EEG, MRI, and blood work the week of Christmas. We have results on the EEG and blood work. I hope to hear about the MRI this week. The EEG shows he is having generalized seizures in addition to the tonic-clonic seizures he already has. The generalized seizures are firing from both sides of the brain. We have increased one of his medications. If that doesn't help, we will switch to a new medication. 

The blood work was all normal. They checked his liver, thyroid, ,blood counts, electrolytes and more. So glad to hear everything else is working as it should. I am beyond anxious to hear about the MRI. It is so hard waiting. I will update when I get the results. 

As for 2014... another great year in the books. Logan stayed out of the hospital and out of trouble! He continues to enjoy preschool. This year he stays awake for most of class. He is less interactive but this may be due to medications or the constant seizures he has been having. We had Logan's Make a Wish party last summer. We had such a blast at the party and enjoyed the many friends and family that came from afar. Thanks to Aunt Theresa and the Girls and Uncle Mike and Aunt Jane for coming from such great distances. We look forward to 2015 being another year of thanks for Logan's health and happiness. For all he overcomes day in and day out, he remains a rock star. I can't wait for each and every cuddle session with him this year and to see what new adventures we will come across. 

As for Miss Lauren, she started Kindergarten last fall and loves school. She is a great student. I hope I can say that when she is older too! She is totally into Frozen right now. What a suprise! She completed two levels of swimming and wants to start dance classes. She had a great summer hanging out with her dad and neighborhood friends. Joel took some time off from work for about eight months. He now works at a school as a cook. He has an amazing schedule that works well with our hectic lives. He is the glue that keeps our family together these days. He keeps Lauren in line, makes sure we are fed, and keeps things up around the house. I don't know what I would do without him. Plus he has an amazing work schedule with holiday's, school days, and summer's off. We are so blessed to have the ability to have jobs that work so well with our lives. I continue to work in the Emergency Department as a Supervisor. I love what I do each and every day. The challenges keep me on my toes and the people I work with are THE BEST! 

We have welcomed the new year and are quickly approaching a difficult Anniversary to celebrate. Joel's sister Leah passed away last year January 6th. We miss her so very much. Every family gathering, every holiday, and every milestone come with feeling as though there is something missing. I know Leah is always there with us and looks over all of us but it's so hard not to hear her laugh, see her new haircuts, what makeup she bought at Sephora, and watch her be an amazing mother to Taylor. We are so proud of Taylor and we know that Leah is guiding her every step of the way. Taylor has taken so many changes to her life in stride. She is doing great in school, continues with cheerleading, and continues to enjoy hobbies she and her mother shared. Taylor has her drivers license which brings new independance. It is weird to think she is driving and will soon be graduating from high school. When I joined the Zacher clan, Taylor was in elementary school. Time flies way to fast! 

Welcome 2015! I am excited to see what adventures we will come across. Praying for good health of all familly and friends, strength through good and bad, and lot and lots of laughs and hugs! 

All the best to you and yours,

Rachel

Neuro Appt

Logan had a regular neurology appointment last week. I knew it would be a tough appointment. Logan has had some changes that needed discussing. He is having a newer type of seizure activity and decline in movement and interest in activities. The neurologist quickly decided he wants an EEG and MRI. Logan had an EEG last spring that was for 12 hours overnight. This time its 8 hours during the day instead. Doesn't that sound exciting! 

So on monday, he has a pre-op physical for the MRI. Tuesday is the EEG. Friday is the MRI. He will go under general anesthsia for the MRI. I was hoping light sedation would be ok but his neurologist wants him completely under. They will draw labs at the same time. The neurologist wants to check his liver, thyroid, and blood counts to make sure nothing has changed. 

I am looking forward to finding out if he is having new seizures so we can treat them. It is miserable watching hiim have seizures off and on all throughout the day. The MRI on the other hand is a double edged sword. I want to know if he is having more changes to his brain to know if the degeneration is worsening. But then I don't want to know because it may confirm that fact which means things are progressing in a bad way. Yuck. This is no fun. I know it is Christmas week but they had the appointments open so we went with it. Might as well get it over with while Joel is off work. 

Christmas is almost here and we are just about ready. A few more cookies to bake, some stocking stuffers to buy, and presents to wrap. Hoping I am productive tomorrow. Logan and Lauren saw Santa last weekend. We went to a local hotel to see him. We had breakfast with Santa last year and it went so well we went back. It is much easier than waiting in line at the mall. They also accept donations for toys for tots and give wrist bands to the water park in exchange. Lauren will enjoy using the wrist bands as she just finished her second round of swim lessons. It is amazing how far she has come since September. I am hoping she will want to continue as she really seems to enjoy it. Logan was great with Santa. He sat on his lap too. The environment was perfect for Logan. Not too loud or busy. We spent some time sitting at the craft table with another family. The other kids were so sweet and gave Logan their projects. 

I will keep the blog updated when we have results of his tests. It will be a bit of a stressful week! If I don't blog before the big day, Merry Christmas everyone. I hope you all enjoy a few moments of holiday bliss and love and receive the benefits of holiday giving. I know I had a wonderful suprise in line at Starbucks this week when someone paid for my drink! It made my day! 

Puke

Well Logan was having a decent day until tonight. He was sleepy today but otherwise no issues. I went to sit next to him this evening as he seemed in distress, maybe on the verge of either a seizure or a sneeze. It was a sneeze coming on which means lots of secretions so I had the catheter ready and in his mouth. Next thing I knew, I could smell puke. I was thankfully suctioning it out of his mouth as it was happening. Hopefully preventing it from aspirating into his trach. 

Ugh. I had called his gastroenterology office this morning to inquire about this same problem we have had as of lately. I was hoping it was a one off deal but I think we have a problem. Either his Nissen surgery was not good enough or we are giving him more volume than he can handle.

For this evening, the nurse is venting his stomach. This means we let the stomach contents drain from his G tube into a diaper and allow his tummy to decompress. For all we know he could be fighting a tummy bug but that is unlikely. I have a feeling we are up against a surgery that was not 100% successful or a tummy that just can't handle what we are giving it.

I asked the nurse to change his trach to lessen the chance of a lung infection. The change went perfectly. But after the vomiting, he was so shaky. Something I am not used to. I felt so bad watching him in distress. He appeared so uncomfortable, just like any other child that just vomited. Lauren is always a little weepy afterwards and the look on his face was the same. Poor Bubba. Hopefully we have a handle on it for the night. I think we were able to prevent the vomit from going into his trach. Fingers crossed! 

I have to say I am a little nervous about the conversations I have heard about this years flu vaccine. I have my own research to do but it sounds like the efficacy is in question. Yikes, hopefully kiddos like Logan can stay away from catching this yucky virus. I know we all have to remain on high alert but I know my mommy feelers are up. Is it time to post sanitizer at the doors of the house, maybe not a bad idea. I'm just saying! 

For now we remain vigilant on all fronts. It's a viral "war zone" out there. You never know where it is coming from!  

December

Happy December! It's amazing how fast the holidays are approaching! Logan is well. He was sick about two weeks ago with some sort of a virus. He had a fever and respiratory issues. We ended up putting him on steroids and antibiotics to help him through. It was a rough one. Even after the illness was gone he was still having problems with agitation and wheezing. This one just took a little longer than usual. Thankfully no hospital visits were needed. We are so fortunate to have a great team at the pulmonologists office.

Now Logan is back to school. We are back into a routine. Unfortuately Logan's bed broke on Friday. The company we bought it from came to look at it on Friday and had no clue how to fix it. I am pretty disappointed as he has had to sleep on his mat in the living room. The position his bed is in does not work for sleeping. I can't find any sort of manual way to move the bed. I am suprised. I would have thought there would have to be a way to lower the bed in an emergency. Hopefully they can fix it first thing this week. It's called a sleep safe bed. If anyone knows how to fix it, please send a comment.

On another note, we are pretty convinced Logan is having more seizures. These are differrent from his big full body seizures. He has them constantly throughout the day. They used to seem more like agitation or frustration from oral secretions. His body tenses up, his arms and legs move into a rigid posture and his head turns to the side. Then the secretions start. We have noticed his heart rate increases and his breathing changes during these episodes. I am going to call neurology this week and see if he needs a blood draw to check his seizure medication levels. I am also wondering if the neurologist would want another EEG to see if we are right. We have an appointment with the neurologist in two weeks but I just can't wait any longer. The episodes wipe him out and I'm sure they are distressing to him.  

Other than that we are all doing well. We plan to visit Santa this coming weekend. Every year he comes to the Holiday Inn in our town for breakfast. It is cheap and easy for us to do with Logan. We don't have to wait in long lines at a mall. We get to go at our own pace. I'm also pretty excited for Logan to open his presents this year. I found a couple really good presents this year. The last two years have been difficult for finding presents but this year I'm on my game. I'm even almost done with shopping. I don't know how that happened. Normally I'm scrambling at the last minute. Now on to making a few batches of cookies. Have a great night.