Tuesday, January 6, 2015

MRI Results

The MRI results are back. Logan continues to have mild atrophy of the brain. That means his brain continues to shrink. We have been told he has this on previous MRI's. This time they noted that the atrophy has mildly progressed from where it was two years ago. Basically it gives us a reason for Logan to be less interactive, have less movements, and more seizures. 

I am not suprised by these results. I have to let out a little sigh of relief that we didn't hear some major news. This is more like what is expected of Logan's course but I always worry about worse case scenario. Thankfully we were given news that is easier to swallow. 

So we continue on as is. The changes in his seizure medication dose has not made a difference. We are to call next week with an update to his neurologist and may have to change medications at that point. I just want the seizures to be better controlled. It has got to be miserable for Logan. 

I have also tried to connect with the metabolic specialist that saw Logan many many months ago. He was sending off a letter to the NIH to see if they had any ideas about Logan. I called again today looking for an update. Hoping to hear back tomorrow. I am having difficulty getting this doctor to keep me updated. 

...I wrote this blog a couple days ago and hadn't had a chance to send it. Now I feel like saying, "what the hell?" Seriously, I read the post and feel like I am totally sugar coating something that is a big deal. It is a big deal that Logan's brain continues to shrink. That's not normal! I'm trying to play it down so it doesn't bother me so much. It does bother me but this time it doesn't feel as devastating, more frustrating than anything.

I am frustrated because we still do not have a defined diagnosis for Logan. Nothing to say, here is the name and this is what to expect in the future. Instead we are presented a black hole that we are sent down with no end in site. 

I did talk to the metabolic doctor today. He has not heard back from the National Institues of Health. He will try one more time but does not feel optimistic. This time he is going to send all of Logan's records with. During this conversation I finally heard that we may have a diagnosis but can't land on it definitively because there are so few cases. Logan and I (if I remember correctly) have a genetic mutuation that has been found in only a few cases. Because it is so few, the doctor's can't say this is what is causing his symptoms. Those that have this mutation have some similariities to Logan but not as severe and there are some big differences in the cases. 

Well at least the doctor is being open about this and not dancing around it. I finally feel like I am being given some sort of an answer. I have to admit though that it is hard to trust. Logan has been seen by so many people, all with different ideas. My hope would be that the NIH might find his case interesting enough to take a peek at. Maybe there is a doctor in the US that is studying this. I wish I had a magic wand to find out. Ugh!

Other than that, we are in a deep freeze here in Minnesota. Hello WINTER! Logan has been cooped up all week as it is too cold to go out. Poor guy. You should see his hair. It needs a cut desperately. He looks like he fell out of an airplane (as Joel's family would say)! Hopefully warmer weather comes our way and he can get back to school and maybe head to great clips for some boy-scaping! 

Sunday, January 4, 2015

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



Saturday, December 20, 2014

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! 


Tuesday, December 9, 2014

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!